Tasha's 411

In lieu of flowers...

2011-03-31T16:22:00.001-07:00

Services for Tasha will be at 11am on Wed 4/6 at Holy Trinity Lutheran Church, 739 W Erie St, Chandler, AZ...Tasha says funeral flowers are a "waste of money" so in lieu of flowers, you can make a donations to ALS at this link:
http://web.alsa.org/site/TR/Walks/ArizonaWalk?px=3001921&pg=personal&fr_id=7439 . Thanks!

Services

2011-03-29T16:54:00.001-07:00

Tasha's services will be on Wednesday, April 6th, at 11am. There will be a lunch/reception immediately following. Services will be at Holy Trinity Lutheran Church, 739 West Erie Street, Chandler, AZ 85225

March 28, 2011

2011-03-29T08:39:00.002-07:00

Tasha passed away last night at a Hospice of the Valley facility in Chandler. She went into Hospice on Sunday night with a low-grade fever and difficulty breathing. She had expected to return home in a couple of days after she beat the infection. Last night they discovered that she had pneumonia and she slipped away in her sleep.

As soon as arrangements are made, we'll post to the blog and her Facebook account.

Julie

Our Vida Loca

2011-03-03T17:32:00.009-07:00

The last update was a highlight of the craziness that has been our life the last month or so. Joshua has had a lot of tests and a number of doctors appointments and I recently had clinic as well.

At this point there isn't much that they can do for me at clinic. I haven't been sleeping well because of waking up in pain and being unable to move. There have been days where I can not stay awake and haven't been coherent until 2:30p or 3p in the afternoon. We are trying some new drugs to help me sleep better at night (which also helps everyone else sleep better at night). I am on oxygen during the day which has helped increase my energy level and they are going to do an over night pulse oxs test to see if I am getting enough oxygen at night. At this point it's just about trying to make me comfortable and allow Bob to get some sleep. The radiation has not made a significant reduction in my excess saliva so I will likely be going back for radiation on the other side of my mouth as well. I can no longer drive my wheelchair on my own down our block or in the stores. I also need help putting my hand and arm on my wheel chair controls about 70% of the time so I have lost quite a bit of independence.

On to better news...Joshua has been diagnosed with Hirschsprung's disease. That in and of itself is not good news but he has a mild case which will be able to be fixed with one surgery and will not require him to use a colostomy bag (see below for link to more info). He also attended his first swallow clinic at Phoenix Children's Hospital (PCH)last week. His clinic is very similar to mine but obviously addresses his intestinal and feeding issues. He saw a speech therapist and occupational therapist team then the GI doctor and nutritionist met with us and finally they had a Pulminologist on the team meet with him as well. Prior to this clinic Joshua had an x-ray and we met with his ENT who is recommending Joshua's adenoids be removed because they are blocking 83% of his nasal passage way and could be creating his constant runny nose (which may be the cause of his respiratory issues). After meeting with the doctor at the swallow clinic we decided to switch to an ENT within the PCH network that way when Joshua has surgery they can hopefully due it all at once rather than having him have to go under multiple times. Although this sounds like a lot and has been a lot it is the first time we have actually felt hope that he will make real progress when it comes to his eating and digestive issues. After he has completed all the necessary surgeries (again hoping it will all taken care of at one time) then they will schedule him for the swallow clinic which will be three days a week for six weeks, etc. They don't want to start him in the clinic until all his internal issues are resolved so that he can be successful and they can then focus on his feeding issues.

Quick Tana update... she has been busy with her last semester of school and tennis season is underway. Tana has decided that she is going to attend ASU Honors college. She has to select a major and if she is anything like her mother it will change at least four more times but for now she listed it as Civil Engineering. She is still trying to decide whether she wants to live at home or not for the first semester.

Hirschsprungs Disease

Quick Update

2011-02-17T19:39:00.002-07:00

I have a lot of updates that I need to get on the blog but I haven't had the time or energy so I'm just going to share a few quick highlights for now.

I received radiation on the right side of my mouth this week with the goal of closing off the salivary glands to reduce my spitting. The oncologist said it would take a week or two to see results...today is day 4 but no results yet.

Dino came to town this past weekend and as always it was great getting to spend time with him. He and Al had a dance off to the song Bust Stop (The Wiggles Version) which can be found on uTube by searching Wiggles Bus Stop. It was the funniest thing I have seen in a long time and dancing Dino has kept his title as the champion but Al sure has learned a few new moves! :)Olivia and I are going to try and get video of the dance off posted on the blog but give us a week or so.

The most important thing that has happened recently is that today we received the approval for Joshua's AZ Long Term care!It was our fourth time applying so I don't know if he was approved because they realized he actually needs the services or if it was because they knew I wasn't giving up. Whichever it is I don't care I'm just thrilled he got approved! This means he will continue receiving his in home therapy after the age of three. He will also have state insurance/medicaid that will pick up all of his medical bills that Aetna does not cover. Lastly he qualifies for rehabilitation hours which pay for someone to come to the house or Joshua's daycare to work with him on his various therapy needs throughout the week.

I'll try to get more information posted later!

Good-bye to Cocoa

2010-12-30T11:28:00.003-07:00

Cocoa was born in Phoenix, Arizona on January 12, 1998(the closest guess that the pound and vet gave us). She was euthanized on Thursday, December 30,2010,just shy of her 12th birthday. Cocoa is survived by her family; Tana, Tasha, Joey, Joshua and yes, even Bob. Cocoa lived a full life and for those of you who are or were co-workers of mine and Bob's I'm sure you often heard her barking in the background during conference calls, usually at the most inopportune times. :) For all those who knew Cocoa they know that barking was one of her most beloved activities, but towards the end her arthritis was so bad that she would barely lift her head from her pillow to bark. She has been on Glucosamine for over a year, has been on anti-inflammatories for almost nine months and was up to two anti-inflammatories and two pain pills a day for the last 3-4 months. Over the last month we could not count the number of times we had to help lift her into a standing position or help pick her up after a fall. This has been hardest on Tana as we adopted Cocoa over Spring Break when Tana was in kindergarten. Although I've tried to keep this entry on an upbeat/humorous note I also am taking it pretty hard.

On another side note, there is never a dull moment in the Roher household. Bob had to take Joshua back to the pediatrician for the second time this week. Joshua was sent for chest x-rays. This is the short version of Bob's afternoon, which involved lots of crying on Joshua's part, because none of the tests were very comfortable. Joshua has double pneumonia and is on two different anti-biotics (but CVS isn't able to locate one of them until Monday even though they checked all the local competitors). We'll be giving him breathing treatments every four hours, even overnight. If he gets worse over the weekend, we'll be taking him to the ER at PCH.

It's been a rough day balancing Joshua's needs, getting antibiotics for me for rattling in my chest, and trying to comfort Tana for her loss. So feel free to email any funny jokes or anecdotes, our household could use some.

Joshua can't catch a break

2010-12-15T16:25:00.002-07:00

Joshua has been battling a cold for almost three weeks now and in the last several days he's developed a bad cough and wheezing. We took him to the doctor today and they are saying he has a cold/viral-induced asthma. They didn't call it "asthma" in their records but said anytime he gets sick, he's going to be prone to respiratory issues, especially since he has aspiration and reflux issues. Right now, he has to receive breathing treatments every four hours for the next week, and then they are recommending he take an inhaler twice a day for the remainder of the winter as a preventative measure.

The little guy is a real trooper and remains in good spirits.

Clinc Update for Tasha and Joshua

2010-12-14T17:28:00.004-07:00

I had Clinic on 12/7 and it was pretty uneventful. My OT and PT recommended changes to my wheel chair in order to decrease my back pain (from sitting in the chair all day). Dr. Levine and I talked about different pain meds to manage the pain in the event the wheel chair modifications don't help. :) I started joking about the medical marijuana (for those of you not in AZ a bill just passed making it legal in AZ) but my doctor was serious when he said it would be about two months before he could start prescribing it, with my respiratory issues I told him it wouldn't matter anyways because I would be like Clinton and say that I didn't/can't inhale. He assured me that there are many ways though that marijuana could be administered...even through lollipops! I asked Levine for a new time line for life expectancy since his last one put it at this coming February and I'm clearly going to surpass that. He didn't give me another estimate on life expectancy but told me to shoot for February 2012 as my goal. We both know that it's not realistic but it was his way of saying keep pushing my time line out.

Joshua had an appointment with a Gastrointestinal(GI) doctor at Phoenix Children's hospital today. When his Pediatrician originally had us make the appointment it was because Joshua was refusing to eat anything but oatmeal for three weeks. It turned out that he was cutting three teeth and had double ear infections and once on antibiotics he went back to eating like normal. At his two year well check his Pediatrician had us keep the appointment because Joshua has to take a laxative daily in order to prevent severe constipation and this particular GI specialist is really hard to get an appointment with. Basically after four hours of hell the end result is she's recommending he have a colonoscopy to rule out Hirschsprung's disease. Joshua had a biopsy for this in the NICU but she said the biopsy doesn't always reveal mild cases of this syndrome. She also wants him to complete another modified barium swallow which the speech pathologist had already ordered for January. We will see her in two months after the procedures are completed. At that time she is recommending Joshua attend a multidisciplinary feeding clinic. It is similar to my ALS clinic only in this case he will see therapists and Doctors related to his feeding and bowel needs such as a speech therapist or pathologist, an OT, the GI Doctor etc. It's an intensive program that is three days a week for six weeks. She feels that without this kind of approach Joshua may not be eating normally (i.e. table foods) until the age of seven and would risk needing a feeding tube down the road.

On a positive note Joshua is learning a new sign about every four to five days and has started to spontaneously say "all done." He is making alot more sounds and continues to mimic words such as duck, dog, and ball. He is still scooting all over the place and will easily move from the living room to our bedroom at the far end of the hall. This weekend he was with Bob in our room and he scooted out on his own down the hall to Tana's room and sat knocking at her door until she let him in. It was so cute to see him scoot on over to the door and knock and know that he cognitively understood what he was doing and that his sister was behind the closed door. :)

A month in review

2010-11-28T11:04:00.003-07:00

10/24 - We had a great turnout for the ALS walk and I loved seeing everyone!! We still have until the end of December to raise money for our team, so if you didn't get a chance to donate there is still time.

10/31 - Joshua went trick-or-treating for his second time. He was dressed as a cow, and although he can't say trick-or-treat, he did "moo" for everyone we visited. Joshua wasn't a big fan of his cow hood, so fortunately we only went trick-or-treating at five of our neighbor's houses. I know I am biased, but he looked so cute!!!!

Oct/Nov - Joshua's had two double ear infections within 7 weeks of one another. So this past week we took him to the ENT. The good news was he was ear infection free (but had just come off antibiotics two days earlier), and they prescribed an antibiotic ear drop that we are supposed to use once a week in order to prevent future ear infections.

Beginning of Nov - Bob's parents were in town for two weeks. As always, they were a huge help. We ended up having a couple caregiver issues, so they really helped out. Betty is now fully trained on the bipap and is spit cup certified :) Best of all was Bob and his dad along with help from Henry and my dad, laid down a sidewalk alongside our house that leads to the backyard. It was the first time I was able to get into the backyard in 2.5 years! Bob's parents bought Joshua a swing for his birthday, so it's been great being able to go out back and watch him swing. Tana is probably the only one not thrilled with the sidewalk, because now I'm able to inspect how well she cleans up the backyard :)

11/13 - We had Joshua's birthday party, even though he didn't turn two until Monday, 11/15. This year was much more exciting because he didn't care about the paper or boxes, but did love any toys that he could see. Joshua's only consistent word is "play", and every time he would unwrap a new toy he wanted to "play".

11/19 - Thanks to Patsy and Elizabeth, we had an awesome bowling fundraiser for our walk team that ended up raising over four thousand dollars! I was shocked and touched by the fact that the entire bowling alley was filled with current and former Chase employees, family, and friends that all came out to bowl in support of our team!

11/22 - Troy, Denise, and the kids came to town for Thanksgiving. It was great seeing them, and Joshua was able to interact with them a little bit more than the last time they were here. Tana still remains their favorite cousin, because she gives piggy-back rides, swings them in the air, etc. Mandi, Adam, and her parents, along with Al, joined us for Thanksgiving at my dad's house. It was great getting back up to my dad's house, because it's been close to a year and I miss being able to visit him and getting up north. I used to spend a lot of time up north, I really miss it. Bob and I haven't stopped laughing at the sight of Joshua scooting through the dining room in my dad's house to the open arcadia door and down the wheelchair ramp into the Arizona room where everyone was eating dinner. Then he scooted down to the end of two picnic tables to say hi to Mandi! He was covered in dust and dirt, but it was so funny watching him on the go, scoot out the door and down the ramp!

Overall, I'm doing about the same as the last time I posted an entry. I've continued to lose some hand and arm strength, making it impossible for me to go on walks with Mandi or Bob like we used to, because somebody ends up having to take over and drive my wheelchair. I'm on the bipap most of the day, only coming off for an hour or two in the morning and then again for another hour or two in the late afternoon/early evening. I finally got a portable sip and puff/bipap machine that has a six hour battery life, so it's made going places a lot easier! I love the new portable machine. I did catch my first cold in three years earlier this month. In one day, it went from being just a stuffy, runny nose, to rattling in my chest. Bob was at work that day, so Mandi took me to urgent care and they put me on a strong antibiotic, which had me feeling better by the next day. We've made a few changes to my nightime pills, and are doing a little experimenting, but so far it's worked out well because I've either slept through the night or only woken up once the last 4-5 night. This is great news, because before that I was getting up at least 5 times a night and Bob and Tana were both ready to drop. Now that I'm sleeping better, everyone else is doing better as well.

Tana has received her acceptance letters from ASU and the University of Minnesota. She's still waiting to hear from UofA (there was a mixup in her transcript that has delayed the process), University of San Diego, and her dream school Stanford. She should find out about Stanford and UofA before the end of the year, but San Diego doesn't make decisions until March. She's really excited about San Diego, but in the end it will be where she can get the best and most scholarship money, which will most likely be in state (ASU). She recently re-took the SAT and scored a 2000!!! We are very proud of her. Since Tana doesn't read the blog, I can add this last bit, which is we're going to be challenged in keeping her focused on her grades because she's a bit pre-occupied right now with her social engagements.

I'll try not to go another month before making an update, but no promises. My next clinic is on 12/7, but I don't expect anything earth-shattering to come from it.

Joshua's on the Move

2010-10-12T20:55:00.002-07:00

Joshua just recently learned how to scoot forward on his bottom. He is still not strong enough to crawl, stand, or walk but he has sure learned to get around the house by scooting. He is terrorizing the dogs, has learned to bang the entertainment center drawers open and closed, has figured out how to pound on the bottom drawer of the oven to make loud noises, and the cutest, yet scariest, is that he has discovered the dogs’ water bowl. If he is left alone for even a minute he will throw his toys in the water bowl or dump it on the floor because he loves to splash in the water.

He recently went on a three week food strike where most days he will only eat oatmeal mixed with Pediasure. All other food he spits out. We are working with the doctor to determine if this is a behavioral issue or if he is actually having intestinal issues.

My breathing continues to worsen and I started to have a hard time driving my wheelchair on my own, but other than that I’m doing good. The wheel chair company came out this week and made adjustments to raise the arm on my chair so I now have a little better control of my driving. But everyone still needs to watch their toes when I go in reverse or turn to the right. I received a new sip and puff that actually works and is much more functional than the one they gave me before. It provides me with relief for my shortness of breath. The best thing about it is the fact that it is portable and can hang from the back of my chair. AND, it has six hour battery so it makes getting out of the house a little easier. A couple weeks ago, we took it to the Brad Paisley concert. The great news was I didn't need to use it at all but it was a huge relief knowing it was there if I needed it. The concert was great!!

Tana is enjoying fall break with Julie and family in Minnesota. I am sure she is having a great time.

Quick Update

2010-09-09T19:39:00.002-07:00

I went to clinic a few weeks ago. It was pretty uneventful other than a few recommendations for chair modifications to make me more comfortable and we need to meet with 3 hospice providers in the near future. The doctor recommends meeting with 3 so we can learn more about what they offer because once you sign up with one, you are eliminating your insurance and using hospice for dr appts, etc. They make an exception with ALS and allow you to continue attending clinic but basically we want to see if we get any more care hours during the week through hospice. My doctor also signed my DNR (do not recessitate) forms, one of which is hanging on our refrigerator and the other will be attached to my chair. We are also going to get an adapter so my bi-pap machine can be attached to my chair so I can go to the Brad Paisley concert this month and the ALS walk next month!

Joshua has said his first official word which is "PLAY". He says dada when Bob enters the room, but he also says it when he is babbling so I don't count that as his first word!! :) He mimics about 10 words or phases, some of the cuter ones are "all done" and "oh boy". Bob has taught him how to point his finger in the air and say "OOOOO UUUU", when OU is kicking off the football. Joshua is on the brink of crawling and will be doing it for sure by his birthday. We will be in trouble once he is mobile because he has endless energy and lots of curiousity.

Tana is working on her college applications. She has applied to ASU and is in the process of filling out the U of A application. In addition, she has selected approximately 8 other schools that she is interested in with her two dream schools being Stanford and MIT. In the end, her school will be chosen by the one who provides the most financial aide/scholarships.

We are actively fundraising for the ALS walk so dont forget to visit my website and please consider making a donation!!

I had a broncoloscopy

2010-08-17T19:25:00.003-07:00

Late Monday afternoon my pulmunologist office called and scheduled my broncoloscopy for 8am this morning. The procedure went well. I had one earlier this year in the hospital and today's was much more comfortable which I assume means they gave me better drugs. :O) The good news is that I do not have any mucus or fluids in my lungs so we do not need to worry about pneumonia. The bad news is that I have saliva and mucus pooling in my throat just above my vocal cords. Apparently everyone swallows saliva and some mucus daily without realizing it, only I am not swallowing mine which is why it gets caught in my throat and I spit up. My vocal cords were swollen and red so I am not sure what that means but fortunately I have not had any changes in my speaking ability. The doctor believes the pooling is due to swallowing issues which could be bad because with ALS they can't fix the swallowing issue so I am likely stuck with the spitting and not eating. Although the full report won't be done by tomorrow the doctor wrote out a short note explaining the above in fancy doctor terms for me to take to clinic tomorrow. I am not expecting anything new at clinic tomorrow. More to come after clinic.

Pulmonologist

2010-08-08T12:40:00.002-07:00

This past week i reached my breaking point in regards to the phlegm and spitting. I was waking up any where from 4 to 8 times a night, which kept Bob or Tana awake as well, has make it increasingly difficult to go to appointments, out of the house, ect.

Bob spent quite a bit of time calling various pulmonologist trying to get me an appointment earlier than 8-11. I ended up seeing a Dr. on Thurs. and for the 1st time since may I feel a tiny bit of hope that we may be able to get the phlegm issue resolved.

He validate that it is mucus coming from my lungs even though my chest x-ray is clear and my lungs sound clear through the stethoscope. Hes not sure why its getting caught in my throat but wants to try 2 separate breathing treatments before moving on to any other procedures. I just received my nebulizer yesterday and we discovered that im not able to inhale well enough to breathe in the medication. I will be following up with him tomorrow so that we can get the necessary supplies to run the meds through my bipap instead.

If the breathing treatments don't work then they will stick a camera down my throat and he indicated he would probably need to clear the airway. He didn't take any guesses at what is causing the issues, but is more currently focused on fixing it, which is just fine by me at this point! It was so good to finnaly hear somebody validate that what i was feeling is in fact what is happening (ie..mucus in airways)

The only bad thing from the appointment was that he confirmed that i am barely moving oxygen on my own, but I didn't need him to tell me that because i have felt it for some time. I just hope that one of the breathing treatments for the out patient procedure helps to clear this up!

Update

2010-08-01T14:30:00.002-07:00

As predicted July was a busy month but were hanging in there. I am still spitting constantly. I get dry mouth so we know that the botox worked, but my spitting is more like phlegm from the throat. A few weeks ago it got so bad that Bob was having to suction my mouth 7-8 times a night and it was yellow in color so we went to urgent care over the weekend. My chest X-ray was clear of pneumonia but had a spot of either fluid or the beginning of another section of my lung that is dying from lack of use. the urgent care Dr. prescribed antibiotics because she said that I could have an infection starting in my throat if I am aspirating. The antibiotics quickly cleared up the excessive spitting and brought it back down to my normal constant level. It started to get worse again this past week so my neurologist called in another antibiotic Rx and has scheduled me to see a pulmonologist.

My breathing has continued to worsen. I typically only feel like I'm breathing normally when I'm on my bipap, outside of that I struggle to varying degrees. In addition, I have lost some of my hand/arm control this past month which has made driving the wheelchair difficult and unpredictable on occasions. I should take a picture of the 6" hole in the drywall as testament to my lack of driving control :)

Joshua is doing great! He is quickly brushing up on the art of tantrums in preparation for his upcoming second birthday. He will throw tantrums over undesirable food choices, when service in toy or food delivery is too slow, if he gets tired of a particular toy, ect :)We know we aren't supposed to laugh but it is sometimes funny watching him get so angry when he doesn't get what he wants. Down syndrome or not, he has mastered the arty of manipulation :)

Joshua had a Modified Barium Swallow (MBS) at Phoenix Childrens and he is silently aspirating. The speech pathologist said hes aspirating because his muscles aren't strong enough to control which direction the fluid goes down and he will out grow it in time as his muscles develop. This means we need to add thickener to his milk. Like his Pediassure the thickener isn't covered by insurance and is quite pricey. Fortunately, his DDD caseworker had a bunch of samples of both that should last us a couple of months. Joshua will repeat the MBS every 3 months until he is no longer aspirating.

In all of this excitement are air conditioning went out and we had to buy a whole new unit. Fortunately, there was room at Hotel De'Mandi. It was quite a sight loading up all of my equipment, 2 dogs, 2 kids and myself but we were very grateful for our stay since it was over 113 that week. We were a bit panicked and scrambling over the unexpected $7k bill, but thanks to help from some of our parents we were able to cover it.

Tana is getting ready to start her senior year next week. She is really not looking forward to school starting but we keep reminding her that there is light at the end of the tunnel since college is completely different than high school.

Spitting and Breathing

2010-07-01T19:54:00.002-07:00

It's been a few weeks since the botox and I do not look any younger. :O) It has helped with the spitting but not to the point where it's tolerable. My doctor said it could take a month for the full affects to be realized so if it's not magically better by next week we can talk about trying another round of botox or going straight to the radiation and eliminating my ability to eat. Not sure what decision we will make but we won't likely do anything next week as it's the holiday week and already busy with other appointments.

I think I have mentioned before that I have been having breathing difficulties which have worsened over the last month or so. I am often hard to hear/understand when I'm speaking, even when I'm in the same room with someone...this is probably most shocking aspect because I have never in my life been told "speak up I can't hear you!" On one hand it's funny/ironic but on the other hand it's just down right frustrating because I am not used to people not listening. The last two weeks my inability to breath has woken me up in the middle of the night, sometimes on several occasions throughout the night. My reparatory therapist recommended that I move to a full face mask with my bi-pap, but I called Dr. Levin and told him he would need to prescribe a truckload of valium because I am extremely claustrophobic. He's not ready to prescribe the truckload of valium at this point so an interim solution is that I have oxygen being delivered tomorrow that will be bled through my bi-pap at night. This is supposed to help me be able to breathe better overnight and I have been on the bi-pap a lot more during the day as well.

We had a great, yet short visit with the Cali Klingers. It was great getting to see Joshua play with his cousins. Although he goes to daycare we don't get to see him interact with kids his own age so it was neat watching him with Victoria and Tommy.

Troy and I are debating on whether Tommy got Joshua sick or Joshua got Tommy sick, but both have had really bad viruses. Joshua had Roseola which apparently is a common virus for kids two and younger. It's harmless but he spent over a week moving from a high fever to a low fever to a horrible rash and still has lingering diarrhea.

Tana is in MN for her annual trip and Mandi is getting ready to leave for a nine day Costa Rica trip next week, so our household will be a little crazy over the next few weeks so the next update isn't likely to come until later in July when things settle down a bit.

Botox

2010-06-14T21:33:00.003-07:00

Tana here providing a quick update. The new dosage from Dr. Levine didn't work this week so she had botox today. She promises it is solely for medical purposes, despite her inquiries today as to if she looks younger. We have to wait a week to see if this worked on the spitting issue; however Levine is pretty confident it will be successful. If not, she may be claiming Liposuction is necessary :) Hopefully it works!

The Spitting Saga.....

2010-06-08T20:02:00.005-07:00

It's been a while since my last update because I think I have spent the entire last month spitting practically non stop....I wish this was funny but I am serious and it's not funny at all. One of the characteristics of ALS is excessive saliva that can also run too thick or thin. As a kid, I was never able to hock a loogie...and therefore, I was never cool with the kids I ran with. However, I am an expert now!! Although, I have been teased that I need to work on my range because there are times I can barely get it into my spit cut. The other new issue is I am having problems with neck control so spitting doesn't sound like a lot of effort but when you are doing it every 5-10 mins, half of the day, and then having to raise my head back up every time, it is extremely exhausting. I've tried 3 different medications in the last week, none of which have worked. But I am trying a new dosage as of today. Most Pals that have this issue are no longer eating and have radiation done on the salivary glands but since I am still eating, that would eliminate my ability to do that. If this current dosage of drug doesn't work, the next option is botox (who knew I'd be getting plastic surgery before 40!!! I am shooting for implants too!! hee, hee )If none of this works, I will be ready to have the radiation done and give up eating because this spitting is that bad. It prevents me from being able to go out and basically, controls our lives at this point.

On a positive note, Joshua learned how to sit up from a laying down position over Memorial Day weekend and is now a sitting up fool!! He has made unbelievable progress with his fine motor skills such as his ability to stack rings, cups, etc. He's starting to out grow his stranger danger phase but definitely still prefers people he knows. He has turned into a huge flirt and makes googley eyes at every cashier and waitress he encounters. :o)

Tana is thrilled to be out of school for summer!!!!! She took the SAT last weekend and takes the ACT this weekend. She's working and volunteering this month. She leaves for her annual MN vacation at the end of June. She, Mandi, two of her friends and I went to the Tim McGraw concert last week. (The only place where my spitting didn't seem unusual!!!) It's our first concert in a round of concert series that we have planned for this summer/fall as part of Tana's bday present.

That's all for now....

Crazy Couple Weeks

2010-05-06T19:42:00.003-07:00

It's been a whirl wind the last 2 1/2 weeks. We'll start with the good, which was kicked off by Dino visiting. He arrived on Wednesday (4/21) and we got to see Dino that night and every evening he was here. A bunch of us went to the Diamondbacks game that Friday(although Dino swears his visit was solely to see me, I don't think it was a coincidence that the Phillies were playing the Diamond Backs:) and we rode the light rail to the ball park which is something I've been wanting to do. Saturday another group of us went to dinner at Macayo's and then went to the dueling piano bar afterwards. Two and a half years ago THE DANCING DINO and I would have been on stage but a crowded noisy bar is not a great place for a wheel chair and someone who can't breath well enough to speak loudly so we didn't stay long. Overall, it was great seeing Dino, we had an awesome visit!

Unfortunately, that same weekend, our overhead microwave broke (thanks to Olivia who loaned us a spare one since Tana doesn't know how to survive without one), our master bedroom ceiling fan and light fixture went out and the wheelchair locking mechanism in our van quit working.

In addition, that Friday, Tana came down with a cold but it did not stop her from winning her doubles tournament at State and advancing to the next round on Saturday but unfortunately she and her partner were eliminated early in the day Saturday.

Sunday Joshua became very ill which resulted in multiple trips to the pediatrician's office where he was diagnosed originally with a virus and then with croup. He was on a steroid treatment much of last week and through the weekend and this past Monday went back to the pediatrician b/c the wheezing had moved to his chest. He is now receiving breathing treatments and b/c of his heart issues they had to order a special breathing treatment that costs $150 after insurance! In addition, he went for an X-ray and they caught him in the early stages of pneumonia so he has been on antibiotics since Tuesday. The good news is, he is happy this week and fever free but he's not eating and his cough doesn't sound much better. We have a follow up visit scheduled for this coming Monday so hopefully he'll progress before then or they'll figure out what to do next. He also had a feeding evaluation at Phoenix Childrens hospital which resulted in their recommending that he receive feeding therapy, which he has been receiving since August b/c he still does not eat solid foods. He has not gained any weight since January so when we have his 18 month well check in 2 weeks, we will likely be referred to a nutritionist to make sure the Pedia Sure is giving him the appropriate amount of nutrition.

During all this, Tana moved from Tennis to her dance concert rehearsals and concert last week. So, while not feeling well she was trying to balance classes and rehearsals that went until 9pm and her week ended with Prom on Saturday night. She looked beautiful and had fun with her friends; however I believe her current love interest has already been replaced by another. Tana's date did not live up to her expectations, which she did not hesitate to share that feedback with him (I have no idea where her ability to be direct and confrontational comes from :)

As if all of this activity wasn't enough, Bob got sick and at my urging (aka bitching and demanding) went to urgent care on Monday evening and got the necessary antibiotics for a sinus infection and Bronchitis.

I had clinic this past Tuesday and Bob did not want to attend and risk getting other ALS patients ill, so my dad and Jean came down to take me to clinic. Clinic was pretty uneventful. For the last several weeks, I've had a lot more difficulty breathing and I'm often winded throughout the day even when I'm not tired or involved w/ activities. Unfortunately, they don't have a cure for that but it was recommended that I spend more time on the bi pap during the day just to keep my energy up. I am eating a lot less so on the days that I don't eat at all, and there are many of those, I just need to add a 4th can of food through my PEG tube. My doctor said I was lucky that I've manage to stay healthy with everyone else in the house sick and said that if I were to get pneumonia, I would not be able to survive unless I opted for a trach. He doubts that I would make it through bronchitis as well at this point. I told him that my original plan was that my body would go to hell simultaneously with my breathing but with my voice fully in tact and that's how I expected this disease to end. Apparently my body has other plans b/c my breathing has continued to worsen at a much faster pace than my loss of physical ability. So we talked more about getting a trach b/c at this point if I had to make the decision, I would probably get one however I'm not proactively going to do it. In the meantime, he recommended I work w/ Kim at the ALSA to get the names of patients who did well with a trach and those who did not. One of the reasons I decided against the trach proactively last August is that it would eliminate my ability to eat and limit my talking to exhaling only. The eating is not really an issue anymore but the limited talking is obviously a biggie for me! :) So at this point, I'm going to roll the dice and hope that when the time comes we're able to get me to the hospital to have a trach put in before it's too late, If that's what I still want at that time.

The good news is my dad replaced our over head microwave so Tana can now continue to eat, the ceiling fan and light fixture in our room is now working and it was only $50 to repair the wheel chair locking mechanism in the van. It's been crazy the last couple of weeks and will probably continue this way until the end of the school year as Tana is getting ready for AP exams and Final exams. She has one AP class in which she can earn a college credit for and she also has 2 other classes in which she's dual enrolled which means she can earn 14 college credits by the end of this year if all goes well. She will also be taking the SAT and ACT the 1st week of June. That's all for now.

Team Tasha Tshirts Now!

2010-04-13T20:10:00.005-07:00

We have created our 2010 Chase the Cure for ALS walk team and are working hard on our fundraising activities. Some of my Chase friends designed walk shirts for us this year and they are so cool. I have posted a picture of the back of the shirt, which proudly says “Team Tasha”. We are trying to sell as many shirt as we can and they are only $20. If you would like a shirt, you can place a comment on the blog or send an email to : jammart10@cox.net . In the email, include how many you want and in what sizes. You can either send me your $20, or make a donation on my walk page. Check the link below. Thanks so much for your support!!

Walk Link

Long Overdue Update . . . Again

2010-04-09T09:59:00.003-07:00

I know this is a long overdue update and I will try to make it quick.

The good news is there is not much to update with me. Overall I feel well, although I still get winded at times. I’m using my PEG tube for feeding quite a bit more as I am down to eating food once a day. I thought when it got to this point it would be depressing but it’s a relief to not have to put forth effort to eat food unless I want to. So I still get Mexican food at least every two weeks and now that I don’t need to worry about fat or cholesterol I have scrambled eggs, which are one of my favorite foods, with cheese at least three or four times a week. =) I typically nap daily but other than mid afternoon naptime I usually have fairly good energy.

Tana is anxiously looking forward to the end of the school year. I can write this only because she does not read the blog, because if she did she would probably never speak to me again for what I am about to write, but boys entered her social scene this past winter. So it’s even harder for her to make time to communicate with her parental units as we have been moved down a notch on her priority list. She was recently asked to prom so our house, the phone line, and the texting bill are abuzz with the whirl of pre-prom activities.

Joshua has been battling ear infections since January. We have not gone more than 2 ½ weeks without going to the doctor’s office with ear infections. In three months time he had been on three separate antibiotics and in mid March his ENT scheduled him for tubes on Wednesday April 7th. Joshua was on antibiotics for an ear infection up until the Friday before his surgery when we took him back in because he still wasn’t feeling well. After being on antibiotics for 10 days he still had a double ear infections at which point they gave him an antibiotic shot in the office and scheduled him to return on Monday for another antibiotic shot to hold him over until his surgery on Wednesday.

As of the day after the surgery he is like a brand new child! He’s back to the happy boy that I almost forgot existed! The only downside is that during the surgery while under anesthesia his heart rate dropped into the 50s and 60s. So they had to remove the anesthesia mask, give him a shot of atropine to raise his pulse back up into the 80s (normal for his age is 110+). Once they raised his pulse back into the 80s they resumed the anesthesia and quickly finished the procedure. The Anesthesiologist told us this was very common in Down Syndrome kids who had VSP (the hole in his heart that closed on it’s own), but we should let our Pediatrician know in case they wanted to monitor him. Our Pediatrician contacted his Cardiologist who feels it was also normal but ordered a 24 hour pulse rate monitor test to get a baseline for him and just to be safe. We will know the results of that next week.

That’s all for now.

Many Updates

2010-02-18T19:37:00.004-07:00

Clinic Update-I now need to take 2 cans of food daily via my feeding tube because I have lost 10 pounds in the last few months. I have been feeling much better and have increased energy since doubling the "magic pill" and starting the nutrition via the tube. Sadly, this does not change my life expectancy. Last August, my doctor had given me 12-18 months to live but because I have been feeling so much better, I assumed that my time line would have been extended. Unfortunately, I learned that the magic pill and nutrition are helping with my quality of life, not my quantity of life. He feels the timing given back in August is still accurate :o( The cat scan and x-ray from my hospital stay shows blacken areas on my lungs which means those areas are no longer working. I plan on beating his prediction though bcz Tana graduates in 15 months and from there it's only another 6 months till Joshua starts preschool. =)

I started my aqua physical therapy a few weeks ago. I LOVE IT! I can walk in the water, do side kicks, squats, etc. All of them are extremely difficult but I love being able to do these things again. Although I am feeling a lot better and have more energy, I definitely nap after my PT. :o)

Last week, I had a voluntary/research spinal tap. My neuro doctor wanted to perform one because I have seen such improvement from the magic pill and since I consider myself a pro at spinal taps, who was I to say no. The evening after the spinal tap, the minute we moved me wrong I knew it and the following day I experienced a spinal headache. This was the worst headache I have ever had in my life. By Thursday, two days later, my dr office had me go to ER for a blood patch, which immediately fixed the headache but left me with a sore back for a few days. The sore back was much preferred to the headache though. =)

Tana has started tennis and made the Varsity team at her high school. She is ranked #4 out of 6 players. They have had three matches this week. The team lost all three, however Tana won both her singles and double in her last match!! :o)

Joshua just had his 15 month well check. Everything looks good. She is a bit considered with his weight since he dropped to the 50% percentile for weight (still over 100% for height). The only solid food he will eat is graham crackers. She is not too worried at this point but called Phx Children Hospital and talked to their feeding specialist proactively. We have an appointment set up for late April in the event that he is not eating more solids by then. He had his second ear infection last week so we have moved his ENT appointment to this coming Monday and he will likely get tubes in his left ear.

The day I went to the ER, Tana had her bottom wisdom teeth pulled, and the next day is when Joshua went to the dr. for his ear infection. They say things happen in three's, but it looks like Bob has the flu again. We are due for a break soon! =)

Weekend Get-away

2010-02-02T18:11:00.004-07:00

Last Friday night we were using the lovely cough assist machine but we weren't able to get all of the junk out of my chest. This had not happened before so after an hour we decided to take me to the ER so that they could suction it out for me. I was naive in thinking that they would suction me using a fancy cough assist and that we would be home within two hours.

One positive aspect of respiratory issues is that you don't wait in the ER line and you are automatically whisked into an ER room where I learned that they suction by putting a tube down the nostril through the back of the throat... without any anesthetic. By the way, when there is a tube in your throat it makes it even harder to breathe. They did an x-ray to make sure I didn't have pneumonia which I expected. But I did not expect the EKG or the Cat-scan to rule out a pulmonary embolism (Because there was blood on the tube when they removed it from my nose).

Between midnight and 2am we went from my being kept over night for observation to a pulmunaligist wanting me moved to ICU. We got to the hospital a little after 10pm and by 11pm they had the list of all my medications and we had brought my medications but they wouldn't let me take what I brought because it had to come from their pharmacy. Also before I left the ER they knew my IV had broken and leaked and it was suppose to be replaced so I could be put on fluids.

To make a long story a tad shorter I was basically moved from the ER to a regular room and then to the ICU all between 10pm and 6:30am without my IV being fixed or being given any of my pain medications which I need at night when I'm in bed stuck in one position.

When my ICU nurse came on at 7am I apologized to her to begin with but then unleashed. I let them know they were lucky I had ALS or I would have yanked the IV and monitors off of me and would have walked out of the hospital because I was so furious!

The nurse was very empathetic and took care of all of my needs/requests. After getting my meds I was much more calm but still unhappy about being admitted into the hospital.

On Saturday afternoon the Pulmanolgist put a camera down my nose down into my chest to look at my lungs to check for mucus levels...this was with anesthetic and after I made the hospital page my neurologist before preforming the procedure. The scope came out clear but he wanted to keep me one more night for observation...Again I was very unhappy!

While there I was also visited by the nutritionist and the speech therapist to evaluate whether or not I am aspirating due to what I am eating and drinking. In the end I got them all to agree not to change anything since I will see my own crew at clinic this week.

I was eventually discharged Sunday afternoon around 1pm, not a minute too soon! No one seems to realize how quickly my muscles weaken when I'm out of my normal routine. I have just started to feel like I have regained my strength that I had before I went to the hospital.

Clinic this week should be interesting after this past weekends events, in addition to the numerous changes I have had over the last six to seven weeks.

Baby J and More

2010-01-22T14:07:00.004-07:00

Joshua started his first day of daycare this week! He will be going to daycare two days a week, two hours per day so he can start socializing with other children; more importantly he will hopefully be motivated by them to start crawling and or walking. Joshua absolutely loves being with the other kids and didn't even notice when Mandi and I left, nor did he glance toward the door after we left as I continued to look on.

We recently just re-did his ISFP(done with the state every six months)and the recommendation was for him to continue receiving the same services has been getting for the past six months. He's made his greatest strides with his feeding/speech therapist. Two months ago Joshua couldn't eat stage 3 baby food without having half of it come back out but he's now able to manage all stage 3 food and has continued to increase his tolerance of table foods, such as baked potatoes and soup. Currently the only typical child-friendly food that he eats though are graham crackers. He still won't eat Cheerios or any other smaller cereal/treats. He is understanding "eat" and "more" in sign language and responds to both by either clapping/smiling or shaking his head and crying. The daycare that we chose has someone who teaches sign language every Tuesday so that will be a great help to him plus the other children and teachers as he starts to learn more words. We think he's on the brink of saying"da da" but we can't call it an official word yet.

Joshua still cannot get into a sitting position on his own or move from a sitting position to a standing position on his own but once placed in those positions is really very stable. All of his one year tests came back normal which is great because they tested for Celiac disease and leukemia as both are highly common in Down Syndrome.

Just a quick update on me...I spoke with my doctor this week and asked to double up on my " magic" pill since its magic has faded. He is attempting to actually put together a trial for this pill but in the meantime I'm being given samples so that I can double up on this pill. He also suspects that my extreme fatigue is causing my shortness of breath and could be a result of lack of nutrition throughout the day. As a result, as of this week I am now having a can of food via my peg-tube once a day in addition to what I eat normally. I have clinic on 2-3-10 and he will check my progress at that point. At this point I am willing to try anything that will help overcome the fatigue.

Long Overdue Update

2010-01-08T16:20:00.003-07:00

I usually brag about Joshua on the blog but I’m going to take a few minutes to write about Tana first. At the beginning of Dec, she was inducted into the National Honor Society. Out of the 252 students that were invited to apply, she was one of 61 inductees.

In addition, barring any state budget cuts, we just learned that Tana has earned her first year of tuition covered at any in state University (ASU, UofA, or NAU in Flagstaff)! For those of you who are not in AZ, we have an exam (AIMS test) which students take throughout school, but must pass at a certain level in order to graduate high school. When this test was instituted, they also created a program in which students who achieve an exceeds rating in all areas of the test by their Junior year and maintain a GPA of 3.5 or higher earn their first year of tuition at any in-state University free. Tana’s current GPA is 3.87 (and her school does not weight the GPA differently for honors classes), so provided she doesn’t nose dive next year or the program’s not cut from the budget, she will have tuition covered her Freshman year. Each year after that, she needs to maintain a certain level of performance in order to continue receiving free tuition. Between Tana’s excellent grades, her extensive community service, and playing on the school’s tennis team all four years, I’m sure she’ll receive enough scholarship money to cover books and room and board if she chooses to stay in state. We were thrilled with this news and it’s a huge achievement for her!

Unfortunately, my “magic” pill that I started taking in September is no longer working its magic. I’m starting to become short of breath again easily. It’s still not nearly as bad as it was last summer, but it’s starting again.

The last couple of weeks have been really rough because I’m having more swallowing issues, trouble opening my mouth wide enough to eat certain foods (again for my Chase co-workers we’ll keep this PG), issues with mucus build up in my chest that I’m unable to cough up, and I have been very exhausted.

I’ve had issues taking my pills in the morning and ended up getting them stuck and scratching my throat multiple times to the point where I refused to take my pills for several days. We are now crushing my morning pills into powder and administering them through my feeding tube. One of the morning pills I take is what I refer to as my “upper”, a pill that is supposed to give me more energy. Not taking that for several days meant I slept much of the time the last holiday week and even though I’m back on my pills this week, I’m still struggling with my energy level. The simple acts of eating a meal or being showered exhaust me and most days the thought of leaving the house is just overwhelming. If my energy hasn’t returned by next week, I’ll be calling my doctor to see if we need to increase my “upper” dosage.

I am having to avoid bread and tortillas unless they are sufficiently mixed with another food texture, because I’ve started gagging on them. For about a month now, we’ve had to smoosh down sandwiches, cheeseburgers, etc. so that I’m able to bite into them. Subs are pretty much out of the question at this point and Bob recently had to use a fork and knife to cut and feed me my Costco hot dog.

We’ve had to spend several evenings, including ringing in our new year, on the cough assist machine. This lovely machine basically forces air into my diaphragm and then yanks it out to force a productive cough. The machine isn’t fun for any of us and is exhausting for me when we have to use it multiple times in an evening as we did New Years Eve.

I’m down to eating only 1 or 2 meals a day because I don’t have an appetite but so far they are not concerned with this; however, I am supposed to be taking a multi-vitamin but unless I am able to find one in liquid form, I refuse to add another pill to my line up.

The good news is that Bob, Tana, and Joshua were healthy through the whole month of December! However, Joshua developed croup and his first ear infection this week but is handling them like a champ. I have lots of Joshua updates but we’ll save them for another entry.

Thank You

2009-12-11T10:26:00.003-07:00

Pre-ALS I was not very good at sending out Christmas cards. Post-ALS there’s not a chance that anyone will get a Christmas card, so I want everybody to consider this their Happy Holidays / Merry Christmas greetings. =)

We could not have gotten through this past year without the help of our family and many friends. Since there isn’t a way to say thank you enough to those who have helped us, what our family (my parents, brother, etc.) has chosen to do this year is adopt a family who is in greater need than we are, instead of exchanging gifts amongst ourselves, as a way of paying it forward (Tana made sure to clearly define that it was all family members 18 and over who were foregoing gifts! =).

Having been the Tempe Chase site contact for Adopt-a-Family for a number of years, I felt confident that we would easily be able to find an appropriate family. However, after contacting both the City of Tempe and City of Chandler agencies which coordinated adopt-a-family in the past, we learned neither cities were doing it this year because the need was so great. Instead, both cities were working through the school districts, asking each school to identify children / families who were most in need. The schools created lists of items the kids need as well as coordinated with the cities to provide food boxes for each of the families.

Although we really wanted to support a single family, our whole goal was to be able to help others. Earlier this week it dawned on me that one of my longest friends, Amy, is a teacher at one of the lowest-income Tempe schools where the majority of the kids are on reduced or free lunch. Amy reached out to her administration and discovered that there were eight unclaimed tickets regarding items of clothing and shoes. Our family is pitching in to purchase these remaining items. Even with everything we’ve gone through this year, we haven’t had to worry about the basic necessities of food and clothes like these families (although it would have been close for Joshua if it hadn’t been for hand-me-downs and E-Bay!=) It just reminds us that with all of challenges there are others who are even in greater need.

Although I can’t thank everyone who’s helped us, there are several whose help has been so significant I want to acknowledge them. They are: Julianne and family; Jolie, Terry, and family; Al; Helen; Amy and the Pico / Reyner gang; Julie, even from afar; Kim from the ALS Association who goes above and beyond; Olivia and family; Tina, Henry, and family; our neighbors, the Pyatt's; and Wayne. My family was able to help support us most of this year; however, when our needs became too great these individuals did not hesitate to step in and take on some of the burden and provide additional support. There aren’t words to express how grateful we are to have such great friends and support network.

Happy Holidays to everybody and again our family as a whole is grateful that we are able [in a small way] to help pay it forward as a thank you to everyone who has helped us this year. Happy Holidays to all!

November Updates

2009-12-03T20:24:00.004-07:00

It's been awhile since the last update because this month has been crazy. Bob was out of commission for three weeks: 1. for a pulled muscle 2. he had a horrible cold 3. both he and Mandi came down with the flu on Thanksgiving and were sick for six days.

The great news is I was finally approved for state aide, which means Mandi will soon be paid by an agency rather than our paying her. When we started this process we were told most people are only approved for 30 hours of care a week, but after meeting with our case worker and her asking for an override from her supervisor we were approved for 56 hours a week!!!!! The great part about this is at 60 hours the state considers it more cost effective to put the patient in a skilled facility rather than keep them at home so we got as many hours as we could have!!!! In addition to the care hours, they are going to renovate our shower to a roll in shower so we will be able to continue using the shower with new equipment once I can no longer sit on my current shower chair. They are also going to try and approve a portable wheelchair ramp which insurance does not consider medically necessary. This program however, looks at the fact that I am under 40 and still active and out in the community and being able to visit my friends houses is vital to my overall quality of life. I just picked up two prescriptions this week that would have cost $148.00 but as a result of this coverage I only had to pay $6.00. They are also going to reimburse me for my prescription costs dating back to 8/1 - present, which will equate to about $600.00!! Talk about being approved in the nick of time, we were able to get another caregiver for me when both Bob and Mandi had the flu. We would have had to pay privately for this care at a minimum of $18.00 an hour had we not been approved!

Even more exciting is that Joshua celebrated his 1st birthday on 11/15. We had just a small party with family, including my brother who was here from Fresno and Bob's mom who was here from OK., along with Jolie and the kids. As with any one year old he was much more interested in the wrapping paper than any of his gifts. He had a couple morsels of his cake, but he can't eat solid foods yet, which is an update I will save for later. Overall it went really well and he didn't go into meltdown mode as most due in the midst of their party at that age. =)

Lots more updates to come but that all for now.

clinic update

2009-11-05T19:35:00.002-07:00

I went to clinic on Wed 11/4. Everyone agreed that I am doing much better, my breathing and energy level have significantly increased. I asked to have my FVC tested to see if my breathing had improved but it was still at 35, which is the same as it was last May or June when I went to clinic, and that is good news. I have been approved for aqua therapy and I should be starting that in next couple of weeks. I can not wait to start this! Being able to walk in the pool while in FL was phenomenal and I can't wait to do it again.

The OT and PT spent about 45 minutes working with Bob and I on various ways for Bob to transfer me in ways that will be safer for him. Unfortunately, after my being lifted and moved about 8-10 times, we came to the discovering that due to his height compared to mine, that he is unable to transfer me in a way similar to how a PT would do it. So we just have to hope that he doesn't hurt his back or arms.

I only lost 4 pounds, which is good. I am eating a lot less however my calorie intake is not an issue because I enjoy what I eat. But I need to start taking a supplemental vitamin for nutritional purposes.

The next clinic appointment is in 3 months and I will hope for similar results.

On a Baby J note.....he stood on his own while holding on to his exersaucer for about 45 seconds!!!!! How exciting that was!!! We will try to get a picture of this to post next time...

update

2009-11-02T14:56:00.003-07:00

I started my new medication on 9/8 and I am not sure if it is the meds or coincidence, but I am feeling better than I have in months! I am not short of breath nearly as often as I was before, I require the bi-pap less than before and have more energy. So I am keeping my fingers crossed that it is the medication and not just luck. I have only had some small changes in my fingers, everything else has seemed to stay the same, or as in the case of breathing, has improved!

Baby J got his helmet off on 10/30. He went trick or treating to a few neighbors houses, dressed as a penguin (photos to follow). He was much more interested in the wrappers of the candy than what was inside the wrapper, since he can't eat solid foods.

He is making progress physically and is now sitting up and can now hold his upper body up with his arms, when his knees are on the ground (provided his butt is supported by his legs). So it is like a crawl position but he just can't keep his butt up. :o) The biggest concern right now is his inability to eat solid food. His speech therapist says he has lack of sensory in his cheeks (he doesn't know when there is food in his mouth) so he ends up spitting it out, rather than know when to chew and swallow. So, he is staying on baby food for a while and also has enjoyed people food like yogurt, mashed potatoes, mashed squash and fire roasted hummus! We will be speaking to the pediatrician at his one year check up about whether his diet will need to be altered or supplemented until he can eat.

Bob's parents were just in town for a visit and as always, we loved having them! They went with us for Joshua's first Chuck E Cheese experience. Joshua loved the big TVs screens with kid videos and flashing lights. He threw a fit when we tried to take him away. He also liked riding in the kiddie rides, provided they lit up or had music.

That's all for now . . .

Quick update

2009-10-06T10:08:00.002-07:00

Last Thursday Tana, Mandi and I went to the Dierks Bentley and Brad Paisley concert out at Cricket Wireless Pavilion.Tasha said that although neither of them are Kenny it was still a great show. The upgraded seats in the handicapped section made seeing the stage easier. Pictures from the concert will be posted soon.

On Friday Baby J got his first haircut. He did well and sat in the chair like a big boy.Pictures for this will also follow shortly.

Saturday night's poker tournament had a great turnout. A big thanks to Wayne, Eddie and Julianne for making it a big success and raising a bunch of money!

On Sunday I was feeling fine and then came down with a fever and since Sunday I'm still not feeling well even though the fever is low to none at all. Sorry if I am not returning emails or phone calls.

Quick Update (Kinda)

2009-09-26T13:54:00.006-07:00

Hi Olivia and Tasha here! Julie has not been able to update the blog because she has been dealing with her own medical issues. Her arm was numb and tingling and her fingers would cramp up and become very painful. So while we were off at the beach Julie started the same round of tests I went through a year and a half ago. After a neck and brain MRI, an EMG, and spinal tap she was diagnosed this past week with Transverse Myelitis. http://www.myelitis.org/tm.htm The short version is often a precursor to MS, but in Julie's case they are pretty certain it will not head that direction because her head MRI was free of lesions. The other good news is this was caught pretty early and she should likely make a full recovery which is uncommon with this disease. What we both find ironic is that we both have been diagnosed with neurological diseases that initiate in the spinal cord...we haven't decided if Discover Card or the City of Chandler (we lived two streets away from one another for 10 yrs) poisoned us or if it's just pure coincidence :)

The trip to Florida went well. I was able to get into the ocean, which was great. But after about a half hour I was done for the day. Between the life vest and the waves breathing was very difficult. Not sure why we had to fly 2500 miles to get me in a pool but we did and it was great!! I was able to walk provided I was holding on to someone and it was the first time I had walked in over seven months!! :) Baby J liked the ocean and almost fell asleep in Mandi's arms until a wave would cause him to open his eyes. He did not fair well in the humidity and has a horrible heat rash from the first day we were there and it lasted all week but by the second day we were home it went away. I did have my pina colada on the beach and in the pool!

Before we had left my doctor had prescribed me a drug to help with my fatigue, which did seem to help the first couple of weeks. But I'm now back to my three hour naps daily. I think Bob and Tana are secretly glad because it's at least three hours when I am quiet and not asking for anything!! :)

Praise for ALSAZ

2009-09-11T10:40:00.004-07:00

Tasha asked me to share this email she sent to the CEO of ALSAZ. Just a glimpse of how helpful this organization has been. If you haven't already please donate to our walk team because transportation and loaner chair they were going to provide us is also funded primarily by the money raised for the walk.Even if you can only donate $10 to $20 every little bit helps! Here is a link to her Arizona Walk To Defeat ALS page: http://web.alsa.org/site/TR?px=1946291&fr_id=5752&pg=personal

Hi Ken

I just wanted to share briefly with you an experience we had this afternoon. We had to take my chair to United Seating and Mobility for some unexpected repairs. When we got there we were told that they would need to keep my chair and provide us a loaner chair, but we had no way of getting me home because our van does not have tie downs, only the easy lock. United Seating and Mobility didn't seem too sympathetic to our situation so our first call was to the ALS Association, and luckily, Kim answered the phone. Within 10 minutes, Kim had spoken to the transportation group you contract with and they called Bob directly to arrange a ride home for me. At this point, US&M said that they would provide a temporary fix to my chair since that would be faster than their building a loaner. When Bob relayed this to the transportation company, they assured Bob that they could get us a loaner chair and get me home. In the end, US&M got approval from Permobil to take the necessary parts to fix my chair from a new chair, so we didn't need the transportation or a loaner chair after all. Kim knew I was particularly stressed because we leave Friday morning for a family vacation at the beach. She assured us, that regardless, she would get something for us so our vacation would not be impacted.

This is just another example of how great ALSAZ is and how lucky we are to have your support. I know you already know this, but we think Kim is just the best and she has been a huge asset to me and my family. Thanks so much to you and your fantastic team!

Tasha

Spinal Tap

2009-09-09T18:32:00.003-07:00

Tasha had a spinal tap yesterday. She said it was uneventful and isn't sure why people complain about them! She was very excited to get the spinal tap, because she was certain that she would be able to drop 3 of the drugs she was taking. It's difficult to swallow the drugs at night and of course, there is the added expense. Her bubble was burst though...her doctor has taken her off the drug trial, but has recommended she start another FDA approved drug. It's actually a drug used for Alzheimer patients. He has seen a slow-down in the progression of ALS in patients using this drug. So fingers crossed, everyone! Unfortunately, he feels she is deteriorating too fast to pull her off all of the drugs.

She recently had a 24-hour oxygen study. He hasn't gotten the results but Tasha said she had never seen her pulse ox go below 90, unless they were transferring her. So at this time, he feels her fatigue is disease related. He asked if she felt her long afternoon naps were preventing productivity or keeping her from spending time with the kids. She said absolutely! So he prescribed a pick-me-up pill to take in the morning. She felt like it worked today. When I spoke with her at 6pm, she hadn't napped yet! However, her shortness of breathe was worse, because she wasn't on the bi-pap machine during her nap. So she will have to start scheduling in the bi-pap while she is awake.

Tasha had a busy weekend. I was able to fly down from Minnesota for the long weekend. We had a great time catching up! We saw a couple of movies, went out to dinner and even had pedicures.

I joked that Tasha's french pedicure would last for a very long time, but that may not be the case. They are going to Florida on Friday morning to spend some time in the sand & water. The whole gang is meeting there: Tasha, Bob, Tana, Joshua, Mandi (her amazing caregiver), Peggy, Lou, Mark, Jean, Troy, Denise, Victoria & Thomas. Wow, I hope I didn't miss anybody...Tasha isn't going to have time to proof-read my post this time! Tasha is calling this her "Make A Wish" trip. She told the travel agent that she wanted to go somewhere where she could sit on the beach and drink a Pina Colada. They are going to a resort in Petersburg, FL that offers a sand wheelchair! I'm sure we'll see some pictures courtesy of Jean in a couple of weeks.

Joshua update

2009-08-27T09:59:00.002-07:00

At his 9 month checkup, Joshua was in the 75th percentile for weight and 90th for height. He's a growing boy! They are already seeing a difference in the shape of his head from the Doc Band. He is seen every 2 weeks for adjustments and they've needed to make a couple of adjustments for growth.

He had a 6 month evaluation with the state for early intervention. The developmental specialist and physical therapist were there. He met all of his social goals but none of his physical goals. He's almost there on some of them, for instance he can roll over, but doesn't do it consistently. So he now has 2 pages of PT goals!

He is now getting Speech & Occupational Therapy as well. The OT helps with fine motor skills, such as feeding himself as he doesn't have the pincher grasp and has trouble getting food placed in his hand to his mouth. The speech therapist that did his evaluation is also feeding certified, which was very helpful. He doesn't have the muscle control for drinking from a bottle, but they aren't going to switch to a different type of bottle now at 9 months of age. So she recommended a special bear sippy cup with a straw. He will be able to squeeze the bear & suck through the straw to drink. She also showed them a different way to hold the spoon that will hold his tongue down when they feed. Right now, most of the food is pushed out by his tongue. He also stores food in his cheeks without realizing it. So they are using a special brush on the inside of his cheek to help build up the sensations in his mouth.

For his speech, in terms of responsiveness and expressiveness, he was rated at a 2-3 month stage. Now this is related to a typical baby, so they don't know how he rates in terms of other Downs babies. His only two consonants right now are "buh" and "duh". He has many speech related goals, such as waving hi & goodbye, responding to his name consistently, and looking to Tasha & Bob when asked "Where is mama/dada" They are starting to use sign language with him, "more" and "please".

Quick update

2009-08-24T17:10:00.003-07:00

Not much to report, but I figure it is easier in snippets rather than a novel!

They saw Dr. Levine on Friday and discussed the Eye Gaze machine and the Sip & Puff. They have started the process of getting insurance company approval on both. Tasha expects it to take a few months. They might have to fight the insurance company on the Sip & Puff machine, as it's not typically used for ALS patients.

Tasha has been taking 2.5+ hour naps in the midst of the chaos generally going on in the house. The doctor thinks her ability to sleep so soundly indicates that her carbon dioxide levels are too high, so he has ordered a 24-hour oxygen study. The respiratory therapist is coming on Tuesday to change the levels on her bi-pap machine. Hopefully the 24-hour study order will be approved by then so they can start that in the same visit.

On a fun note, it sounds like Tasha's 39th birthday was quite memorable! For those not in town, they had a group of about 30 people meet up at the Mystery Dinner Theatre. I'm sorry that I wasn't in town for the event and I hope to see pictures of Bob's on-stage dance soon!

That's it for now! Hoping to chat with Tasha tomorrow to find out about Joshua's speech delay.

Clinic update

2009-08-18T05:46:00.001-07:00

Hello...Tasha's friend Julie in Minnesota here to update everybody!

Bottom line from the last clinic: Tasha is not going to get a tracheotomy at this time.

The benefits of the trach w/ventilation are portability and back-up for electrical problems. But the trach is invasive, and at this point, she is not ready for it. Tasha explained to the doctor what was important to her in terms of quality of life right now. He said that he expects in 6 months time she will not have the same abilities as today. So she will likely need to re-visit the trach in 6 months. Perhaps at that time she will re-define her ideal quality of life. For now, they will continue to use the bi-pap machine. Currently, she is using it from 12-14 hours per day.

After clinic, they learned from the respiratory therapist that a sip-and-puff machine might be an option for Tasha. Typically they don't use this with ALS patients, but Tasha has strong mouth muscles. Basically it is a machine that will attach to her wheelchair. As needed, she can bite down onto the tube to receive oxygen. She has an appointment on Friday where they hope to learn more about this.

Also on Friday, they will discuss the Eye Gaze machine. Her doctor had recommended getting this machine a couple of months ago. http://www.eyegaze.com/content/assistive-technology Tasha was able to try it at a "Meet the expert" event recently. She said it was difficult for her to use and she tired from it quickly. Tana had an easier time. It is trained specifically to your eyes and they believe she had a harder time because of her glasses and astigmatism. She said it will definitely take time to adjust to this. A great feature is the ability to record your own voice. They are going to get a microphone soon and start recording as many words/phrases as they can think of to use in place of the robotic voice. Unfortunately, after insurance, the Eye Gaze will cost around $2,000.

They will be getting a Hoyer Lift next week. They've been avoiding this as long as possible, but the new transfer board they got at the clinic just didn't work for them. The lift will be used to get Tasha out of bed and into her wheelchair. They are also getting harnesses for her wheelchair in the van. If the van is stopped suddenly, Tasha ends up folded forward and can't straighten upright by herself.

In the last couple of weeks her hands and legs have gotten worse. She is having difficulty dialing her cell phone now.

A few weeks ago they started an approval process to get state-funded caregiver aid. She has been medically approved for aid, which will provide a certain number of hours per week as well as 30 days of respite care per year. Now they are waiting to see if they meet the financial requirements to receive the state aid.

I've been assigned to update Tasha's blog from now on. I hope to post a little something weekly, as I know everyone is anxious to hear any news. Thanks for checking in!

Sitting Up

2009-08-10T16:05:00.002-07:00

Baby J sat up on his own today for the first time longer than a min.! He not only sat, but was reaching for and holding toys too! He was able to go for about five min. at a time before toppling over. It was really exciting and hopefully he will be able to do it consistently by next week when he hits the nine month mark!

First Tooth

2009-08-09T10:25:00.002-07:00

Baby J's first tooth was finally visible this week!! I think he's been teething forever!

Will try to get clinic update posted this week.

dr appt update

2009-07-24T17:04:00.003-07:00

Quick update from my appointment last Friday… My doctor said it’s time to start thinking about whether or not I want a tracheotomy. He brought it up now because he said he thinks I would fall into a small percentage of patients that would be able to initially use the trach for night use only and cover it during the day if I have the procedure done in the next couple of months. He reviewed basic information with me so that Bob, my family, and I can create a list of questions to discuss with him in more depth at clinic on 8/5. He said that if I chose to have the trach placed that I would only use it for as long as I felt my quality of life warranted, which he believes will be about a year. If I decide to have a trach placed, I would not be able to eat any longer and would only be able to speak if it was covered or on the exhale if it was uncovered. Once I didn’t feel like my quality of life warranted using the trach any longer, we would cover it and I would be moved into hospice care. I was not prepared for this conversation so I have a lot of questions that I didn’t think to ask at the time, the most important being how long he thinks I have if I chose not to have the trach. I am opposed to invasive measures, like the trach, but if I have considerably more time with one, I may change my mind.

I’ve had a hard time handling this information, although Bob is starting to suspect that I’m milking this for a little extra sympathy =) (However, it did get me some great Mexican food this weekend!)

PS I still plan to be at the walk in Oct., so make sure you sign up, donate, or both! (link is below)

It's That Time of Year . . .

2009-07-16T14:41:00.007-07:00

Over $7,000- the amount of money the ALS association has saved us, 7- the number of items we currently have on loan from the ALSA loan closet, 4- the number of hours of respite care we receive every two months, the support and information we’ve received- priceless .

Since my diagnosis, I have been very vocal about how much the ALSA has helped and supported us and now is the time of year in which we get a chance to tell them thank you. The annual Walk to Defeat ALS is the largest fundraiser for the ALSA and provides them the ability to support all the families who rely on them as ours does. I’m sure this will be the first of many blatant requests for walkers and donations leading up to the October 11th walk at Tempe Town Lake!

Just like last year, we want as many people as possible to come out and join our Chase The Cure For ALS walk team, including our virtual walkers who are out of state! I’m attaching the link below to register to walk (bottom of page) or to make a donation (bottom of the page and select a team members name).

Thank you for your support!

http://web.alsa.org/site/TR/Walks/ArizonaWalk?team_id=118821&pg=team&fr_id=5752

2009-07-08T14:19:00.004-07:00

I received my cough assist and vest in the last couple weeks and don't care for either. :) It's not just the machines themselves, but the amount of time they take. I'm supposed to use them a total of 40 minutes each per day, in addition to the amount of time I spend on the bi-pap. I have a doctor's appointment next week and plan on discussing this with him because this is starting to become a quality of life issue for me. I will likely choose not to use them because I don't want to spend what will seem like half of my day attached to machines.

For the last couple of weeks my breathing was much better but I seem to have declined again the last few days. I suspect this is because I haven't been using my bi-pap as much. Tana is my primary bi-pap operator and she's in MN with Julie and the gang for her annual summer trip. She'll be back July 20th so things should return to normal then. :)

Joshua was fitted for his helmet and will be getting it on July 22nd. He will only have to wear it three to four months, so I am hoping he will have it off in time for his birthday. :) Joshua saw the ophthalmologist for a 6 month screening, which is typical for kids with DS due to the large number of vision and eye health issues. His eyes received a clean bill of health and the doctor said he won't need glasses in the next few years. He did say that 95% of DS kids need glasses by the age of 10, but on my side of the family that's pretty common anyway. (Tana got her first pair 2 weeks after her 10th birthday)

Joshua has dropped out of swimming lessons. :) He was a lot farther behind then the other babies in the class so Mandi is just going to work with him on her own outside of the class. The good news is he really likes the water, he just doesn't have the muscle strength or coordination of the other kids...yet.

2009-06-17T15:02:00.006-07:00

I had my monthly drug trial follow-up this week, which ended up being a much longer appointment then normal. First, I've had issues with my voice the last couple of weeks. It's been hoarse and goes in and out like I was a teen-age boy. My doctor is almost certain that my voice is okay but it is the lack of oxygen causing the issue. He is referring me to a specialist at Banner for evaluation to confirm his diagnosis. After listening to my breath through the stethoscope, he said that my breathing was shallow and had me do the FVC test. The last time I did it I blew a 63%, which was in the Jan/Feb time frame, but I am now at 35%. So, I now have earned more bi-pap time :). He also is ordering a cough assist machine. I will also need to wear a special vest that jingles my insides in order for the cough machine to be effective. Both of these are targeted at preventing pneamonia. I also got an order for a neck brace which I have needed for some time but have been putting off.

One really interesting thing is that this has been the second month in a row that my reflexes have improved. I'm the fourth patient they've seen on this trial with this improvement. It is pretty certain that I am not a placebo group because nothing else would cause the improvement. :) I did tell my doctor that I didnt't really care about my reflexes, I want to be able to walk and breath! :) It will be exciting though if this information can end up helping better understand ALS and/or ultimately result in a cure, even if it is too late to help me.

Baby J

2009-06-10T14:46:00.006-07:00

Joshua had his 6 month check up two weeks ago and is doing well! I thought he was bigger, but he's maintained the 75th % f or his weight and 90th % for his height. The doctor said we can definitely let him cry out his night time feeding because he is clearly not going to starve. :-)

The back of Joshua's head is very flat. It was flat when he was born, which is a down syndrome trait, but has become even flatter from laying on it. He is seeing a cranial specialist next week and will need to be fitted for a helmet to round out his head. I'm not sure how long he will need to wear it, but if its only for six months or less we are going to see if we can wait until after summer.

The only item of concern that came up during his appointment is an odd hand behavior he has. For the past five weeks or so, Joshua extends his right arm out and stares at the back of his hand as if he is admiring a manicure. She was initially concerned that this indicated a seizure, but that was quickly ruled out because he also extends his arm and hand while looking at other objects and people as well. For now, we are assuming that he has discovered his hand and is fascinated by it, but if the behavior hasn't changed by the end of July we will take him for a follow up.

While laying on the exam table Joshua discovered that he could put his feet in his mouth and has been thrilled ever since with his new "pacifier." He also laughed for the first time while we were waiting for the doctor! In addition, this past weekend he rolled to his right side for the first time. It was a week and a half of firsts!

Joshua has definitely learned the art of manipulation! For weeks he would cry and push the bottle away during feedings. I was concerned enough to mention it to the doctor who suggested we change his bottle nipple size, which we did, but he still became upset at bottle time. I thought something must be wrong with my precious angel, but Mandi said she thought he just preferred his baby food to his bottle. So, we performed a test. Joshua was crying and pushing his bottle away so rather than try to coax and fight him to take it like we normally would, we took the bottle away and brought out his baby food. As soon as Joshua saw the spoon he started panting with anticipation and bouncing. He finished half a jar of food and began to cry the minute Mandi took the spoon away and didn't stop until she brought out another jar. It was obvious my precious angel was perfectly fine; he was just trying to get more baby food and preferred it to his bottle! At the advice of his pediatrician, we took away his baby food until he went back to taking bottles without a fuss. He went 19 hours on 3 1/2 ounces of formula before deciding he was hungry enough to take a bottle without issue. (I wonder where his stubbornness comes from?! =) My son may have Down Syndrome, but I definitely learned not to underestimate him again!

The Latest

2009-05-20T14:16:00.006-07:00

There haven't been too many changes since the last update, which is good news. Within a week of my last update though, I started having increased issues moving my feet , so taking me to the bathroom is now a two person job. =( The only other changes I've had in the last month have been with breathing and swallowing. Breathing has become much more difficult when I'm talking or laughing, but at this point I'm just supposed to use my bipap for a longer period of time. Just in the last month I've had a hard time swallowing different kinds of meat. I haven't choked yet but have had gagging issues. For now, I can continue to eat everything but I have to make sure it's cut very small and chew thoroughly.

Joshua is doing really well. He can roll to one side by kicking his legs straight up in the air and using them as a propeller. He can also sit using his arms to prop himself...for about 30 seconds. :) He spent the weekend with Jolie and family this past weekend and went swimming for the first time. Jolie said he didn't seem to like it at first but warmed up to it as he went. Joshua, Mandi and I will be attending a weekly story time starting in June. In addition, he will be starting swimming lessons toward the end of June.

We went to Oklahoma a couple of weeks ago so Joshua could meet his aunts, uncle and cousins. I was very nervous about traveling because of the difficulty we had when we went to California last October, but the trip was a huge success! Southwest Airlines did a great job transporting me and the chair. The hotel actually had an easier setup then we have at home so the bathroom wasn't an issue either. Mandi went with us, which was a huge help to Bob. Joshua was a big hit with the family and got so much activity that he actually slept through the night.

2009-04-26T09:11:00.002-07:00

The good news is I haven't had any significant changes since my last update! We've had some issues w/ my legs, but Mandi & Bob have adjusted their lifting technique so I haven't had to be set down on the floor since my last update. Once I'm up, they now have to help me move my feet to take steps about 1/2 the time, but the great news is we've been able to avoid the transfer sling!
I've had some subtle changes in my right hand and arm, but nothing that has caused me to limit what I have been able to do or change how I use my hand/arm.
Fatigue has been the only noticeable change. I nap almost every day because I get so tired. Apparently, it's normal because my muscles think the effort it takes them to go to the bathroom multiple times a day is the same as climbing Mt Everest! =)

KIDS:
For those of you in West Chandler/Ahwatukee, be on alert: Tana got her drivers license!! She is beyond excited! In addition, to fund her driving necessities (gas, insurance, etc.) she started her first job last weekend. We spent several evenings preparing for her first interview, but they only asked her one question, "When can you start?" So, she is now a hostess and buses tables at a restaurant near the house.

Joshua loves baby food! He's had peas, carrots, squash, and sweet potatoes and has loved them all! He also had a bite of Daddy's chocolate frosty that he really seemed to enjoy =) He's doing a great job holding his head up and loves sitting in his bumbo chair. He's also started rolling on to his side on his own, but needs help getting on his tummy and back.

Baby J Update

2009-04-04T09:48:00.000-07:00

Joshua is 4 ½ months now and is just the best baby! He started out as 25^th percentile for weight & 50^th for length and he’s now 75^th for weight & >90^th for length and weighs 13.4 lbs! He smiles and “talks” every day, which is just the greatest. The dev specialist says that so far he’s developing at the same rate as a typical baby. The best news though is that the hole in his heart has closed! He still has a murmur, but the cardiologist doesn’t need to see him again until he’s two. He started eating rice cereal last week and quickly got the hang of eating from a spoon (the pic was from day two, so he was still learning =) He is quickly developing a very rotund belly!

Baby J is seeing an ENT next week because he doesn’t turn towards noises. We know he can hear because he startles at loud noises. We also know it’s not a developmental issue because he always turns something he sees. The speculation is he may have fluid in his ear canal affecting the tones he hears, which would effect is speech. We’ll find out more next week though.

About time . . . =)

2009-03-23T13:38:00.005-07:00

It’s been awhile since my last update and that’s because typing has just become too difficult. On a good day I am able to type with my left index finger, but on a typical day I have to use the knuckle on my left index finger. In addition, my arms can’t reach as far and I’m often unable to reach the top two rows of keys. I’ve had a lot of requests to keep the blog updated, so if anyone would like to volunteer, or rotate volunteers, to help me update the blog once a week or so, just let me know! =) (Thanks to Mom who’s typing this now.)

I’ll post updates about myself this time and updates on Joshua the next.

The last update was that my pain had gotten better from the feeding tube, but that only lasted a day. I was back in the doctor’s office later that week and apparently the tube had been placed too tightly. My doctor was able to loosen it in his office (ouch) and within a day or two I was feeling much better.

I can no longer roll over in bed at all, so Bob has to get up several times a night to roll me over and reposition me. He does this in addition to getting up and feeding the baby, so needless to say, Bob is often exhausted. If he’s lucky Joshua and I will time our awake periods together, so Bob only has to get up twice but on a typical night Bob’s not that lucky and gets up 3-4 times. Joshua usually spends the night at my Mom’s once a week and on those nights Tana has volunteered to help roll me over so Bob can get one night of uninterrupted sleep a week.

I’m not sure if I’ve posted this before but I’m 100% wheelchair bound. We have been able to transfer me between the chair and bed and between the chair and toilet by someone lifting me to a standing position and helping me take 1-2 steps while holding on to me. Just this week we’d had difficulty with this process because my legs aren’t bearing my weight as they had. This has resulted in my almost being dropped four times this week. Most of those times have been with Mandi, our caregiver, but she was able to lift me back on the chair by using her leg. Mandi has been great in so many ways, but it’s especially comforting to me that she’s trained in how to handle these situations and she remains calm (if she panicked I’d definitely freak out). We will probably be having to use a lift system to transfer me soon. We are going to avoid this as long as possible because the entire process is a pain for both myself and whomever is having to transfer me.

(Since Mom typed this update, we had an instance last week in which my legs wouldn't hold me and I ended up on the floor. Bob worked from home that day bcz he could tell I was having a bad muscle day, which ended up being a good thing bcz it took both him and Mandi to lift me back into my chair. Damn, trati0rous legs!! = )

Over the last few weeks I’ve also developed a type of “choking” even though I haven’t swallowed anything. It typically happens after I’ve been talking for awhile but is helped by drinking water. I have clinic at the end of the month and this will be one of the items we’ll be talking about.

I started the drug trial at the beginning of the month. I am taking Tretinoin and Actos, in addition to the Rilutek. The Tretinoin is an agent used in chemotherapy for Leukemia patients and Actos is used to treat diabetes. Although one of them is used in chemotherapy, I have been assured that I will not lose my hair. =) I haven't had any side effects so I was worried that I was in the placebo group, but my dr. has assured me that plenty of others haven't had side effects either.

Speaking of my hair, I had it cut short because it kept getting in my face and I am unable to move it. I’ll try to get some current pics and update the blog.

Last but not least, my last working day was Feb. 27^th and I’m now on leave of absence. I have started the process of applying for Social Security, which has been much more challenging than anticipated or than it should be. I thought I’d really miss work and go crazy without it, but I’ve had so much more energy that I wish I would have stopped earlier. Even without working, I still manage to keep busy and my mind active. For someone who has her degree in English, there are a surprising number of classics I have never read, so in addition to fun reading, I have Jane Austin on deck and Tana has recommended 1984 when she's finished w/ it. I spend time every day following up on medical appointments and bills (yes, there are enough for this to be a daily activity!) and the weather has been great so Mandi and I take Joshua for a daily "walk" (I roll, Joshua strolls and Mandi walks =) Although I can’t “parent” him as a typical parent would, I have loved being at home with Joshua.

Joshua had his four month check-up last week and has a follow-up w/ the cardiologist this week, so I 'll try to get those updates posted soon.

Tasha is doing much better today.

2009-02-23T21:00:00.002-07:00

I only spoke with her for a few minutes, but she didn't even call the doctor today because the pain had gotten so much better. Yeah!

Sunday update

2009-02-22T08:31:00.002-07:00

I just spoke with Tasha, they came home from the hospital on Friday. She is still in a lot of pain. She had to cut back on her pain pills as she wouldn't have enough to get her through the weekend. (Now she is taking 1 every 4 hours instead of 2) She's worried that there is something wrong with the feeding tube, because of the pain. As long as she doesn't move, she's OK. But any movement causes a great deal of pain. She is going to call the doctor first thing tomorrow.

Julie

Feeding Tube Update

2009-02-18T19:45:00.002-07:00

Hi - Julie here.

Tasha was suppose to be in the hospital just one night after receiving the feeding tube. But she has been in a lot of pain and the only meds that help have to be administered via IV. So she will stay again tonight.

She's been on oxygen on/off throughout the day as her o2 saturation keeps dropping. She wasn't clear if that was due to the pain meds or what the reason (other than the obvious: ALS)

She is doing better now than even earlier today. (9pm AZ time) She said that she was getting very winded talking today and the pain certainly didn't help.

Will update again if I hear anything.
Julie

Day Care, Feeding Tube, and More

2009-02-13T21:09:00.004-07:00

Joshua survived his first days at day care =) They have worked with him on his PT and have done many activities with him. The experience has tuckered the little guy out . . . he doesn't nap more than 40 minutes at a time at day care. The first night he slept from 6:30pm until 5am the next morning! The second night he only woke to eat and so far tonight he hasn't woken up yet. I barely remember what my babies eyes look like!

Our care giver also started this week and she's great! Right now she comes over from 10am - 2pm, but once Joshua's time at the back-up day care ends she will start at 7am. She is able to lift me, which you wouldn't guess because she is a little thing. In addition to taking me to the bathroom and feeding me lunch, she does laundry, dishes, made us a casserole for dinner, cleaned Joshua's room, and more! It's frustrating that I am not able to take care of myself and we have to pay someone to "baby sit" me, but the extras she is doing for us will make life much easier for Bob and Tana which makes it worth while.

On Mon. I'm having a spinal tap for the drug trial. The trial requires a spinal tap before and after so they can look for changes. I will be starting the trial drugs at the end of the month, so more info to follow.

I go in Tues. for my feeding tube (PEG). I thought it would be outpatient, but I'll actually be admitted to Banner Good Sam and, if all goes well, will only be there one night. I can't press the call button on my own so Bob will be staying with me and Joshua will be going to my Mom's. Even though I can chew and swallow, I don't always get the nutrients I need so the PEG will ensure that I do. More importantly though, the procedure can become complicated once breathing (FVC) drops below a certain point and I'm at the brink of that point now. So, we're going forward with the PEG now because it will be safer for me. I won't have to use the feeding tube though, unless I am not eating enough.

That's all for now . . .

Joshua Update

2009-02-03T18:04:00.002-07:00

I'm a bit behind but Joshua had his 2-month checkup on Jan. 15th. He weighed 10.1 lbs. and was over 23" long! He's gained 3 1/2 lbs. and has grown 3 " since he was born.

We had a bit of a scare this past weekend because he .developed croup. They did not want to give him a breathing treatment in Urgent Care because his heart rate was already high and the treatment would accelerate it which would become an even greater issue because of the hole in his heart. We followed up with his pediatrician yesterday and we agreed to no treatment at this time; however, if he's not better by Thursday he needs to be seen again for an RSV test and possible x-ray to test for pneumonia.

He is so much more alert now and smiles daily! He has just been the best baby with such a calm temperament. We have been very lucky!

Julie was in town last week and took lots of great pictures which I hope to have updated to the blog in the next week or so.

Van & Chair update

2009-01-15T09:44:00.004-07:00

I'm not sure if I posted this before, but we bought a handicap van the weekend before Joshua was born and my power wheelchair was delivered in Dec. It took a few weeks to get the locking mechanism installed on my chair and in the van, so yesterday was the first time we used the van to get around. As much as I hate having to be in the chair, it was great being able to steer myself and face whatever direction I wanted. I loved having a little bit of independence back. The downside was the process of getting me and out of the van, which took 10-15 minutes each time and required Bob to push and turn the chair (it is very heavy!) So, even though it's more expensive we are going to check into trading the van in for a different one that is easier to use. For now, we will likely go back to using the Kia even though I've almost fallen twice (Bob has caught me both times.) This is one area, chair and van selection, in which we wish we'd had more knowledge and/or support.

Joshua Test

2009-01-08T11:36:00.002-07:00

Joshua went for his upper GI and barium swallow on Tues. and they ruled out two serious issues that would have required surgery. Yah! They are recommending we come back for a feeding evaluation with a speech therapist because it takes so long to feed him. He keeps falling asleep because the effort it takes for him to eat wears him out. So, that appointment will be forthcoming once the referral is done.

He is very alert now and awake at least five hours a day. He makes great eye contact and has even been complimented on it. =) Eye contact is one of the items they use to assess his cognitive ability. He has also started following sounds and objects, which is also great! He also holds his head up for 10 seconds at a time. Typically, children with Down Syndrome don't walk until 18 months to 3 years, but his legs are very strong so we're hopeful that it will earlier or closer to the 18 month side of the average. All in all, he's doing really well!

Trial Info

2008-12-30T22:10:00.006-07:00

We had a two-hour appointment with my doctor yesterday and learned a lot about drug trials in general and more specifically about the two trials I have to choose from.

In general most trials, including the two I have to choose from, contain a control group and a placebo group and are double blinded. The control group receives the meds but the placebo group receives fake drugs. Double blinded means neither us nor my doctor know if I am part of the control group or placebo group. I hinted at a bribe to secure a spot in the control group, but no luck =)

Each trial has criteria the patient has to meet to be eligible to participate and there is a screening process to ensure that the criteria is met and to benchmark current abilities. For example, to participate in the cocktail trial I have to be on Rilutek for one month, I can't have a feeding tube and have to have a FVC of 70% or greater (FVC measures how hard I can blow . . . since my co-workers read this blog I will omit the obvious jokes! =) I was worried about hitting the 70% because I know through laughing and coughing that I have lost some strength and at clinic in Sept. I was at 79%. It took four tries (first one came in at 61%) for me to hit the 70% to qualify and I thought my eyes would pop out of my head from blowing so hard, but I'm in.

The good news was we don't have to pay for any of the drugs except for the Rilutek since it's the FDA approved drug for ALS and available through prescription. The bad news is the Rilutek is $100 a month, but thank goodness for insurance bcz otherwise it would be a $1000 a month and we wouldn't be able to afford it. (We have averaged approx $380 a month in medical bills this year so $100 doesn't seem like much on it's own but all of it is starting to add up.)

I'll try to post more about the actual drugs in the next couple of days, but my hands need a break for now.

ALS Update

2008-12-19T22:54:00.011-07:00

So my hope that the ALS had plateaued was optimistic, but unfortunately it was only hope. My feet and legs have gotten worse and I'm barely able to walk in the house (I've been wheelchair bound outside since Oct). There are times where my feet don't feel like they can move at all so Bob will put me in the wheelchair to get me from one room to the next (good news is I've only fallen once this month). Getting dressed has become even more challenging because there are days I can't stand on one foot even for a second to put my foot in leg holes. I can no longer stand up from my special eject chair so Bob has to lift me up. On the bright side, I am providing Bob and Tana new material for jokes because my walking speed is the equivalent to that of a turtles. =)

My breathing has gotten worse too because I have a hard time breathing now when I laugh or try to talk fast. My coughs and sneezes have had only partial strength for a couple of months now.

My arms have gotten worse too, making eating, teeth brushing, etc. even harder. I am not supposed to lose weight because it means losing muscle too, but due to eating challenges and muscle loss I have lost 25 lbs since last March (8lbs the last two months I was pregnant and the rest since then). Intellectually I know it's not good, but as a female I was ecstatic that I was able to wear pre-pregnancy clothes, including jeans, two and a half weeks after Joshua was born! =)

I saw Dr. Levine, my ALS doc, the day before Joshua was born to talk about my changes to that point and drug trials. The trial my doctor is most excited about won't start until the April-May timeframe, but he doesn't want to wait that long to start me on something so I will be starting a different one now and then switching when the other one starts (I just have to be drug free 30 days prior to the start of the 2nd one).

The one I will be starting is a cocktail made up of three existing FDA approved drugs that haven't been used in combination before. One of the drugs is Rilutek, the only drug on the market to treat ALS (athough it's effectiveness is minimal at best) and two others I can't remember the name of. I go see him again on Mon., 12/29, to get my oxygen levels checked and pick up the Rilutek. I will take the Rilutek for a month and then start the other two drugs.

Quick update on Baby J (one of his many nicknames):
He goes for the upper GI and barium swallow on Jan. 6th.

He is sleeping too much and not eating enough so now we have to set the alarm at night to wake him up and feed him. (Poor Bob is exhausted!) As of 12/22, he's up to 8lbs though!

2008-12-17T22:14:00.002-07:00

We've been busy but here's a quick update . . .

Joshua had his first assessment by the state case worker yesterday. He was assessed in five categories and scored at or above his age in three areas, but scored at a half month or less in two. She stressed that he may be a little behind because of being pre-term, it's not necessarily the Down's. He will need physical therapy due to low muscle tone and we have activities we need to do with him. He's also not following voices or objects with his eyes, but she thinks that is a skill that is emerging. Our next appointment should be within a week.

Joshua has had trouble breathing since he was born but it got worse over the weekend due to a cold, but as a result we saw his pediatrician and a pulmonary specialist at Phoenix Children's this week. He will have a couple of tests in the next few weeks: an upper GI and a barium swallow. The doctor said that in 80% of the cases like Joshua's, the breathing issue will correct itself with age and only 20% require intervention. This would normally make us feel better, but we don't have a lot of luck with odds =)

Well, that's all for now . . . it's 10:30pm so he's waking up for his late hour play time =)

Battle of the Wills

2008-12-11T22:26:00.006-07:00

Joshua has developed a habit of waking up around 10:30-11pm and stays up until 1-2am. Although we love awake time with Joshua, we'd prefer it to be during the day time hours =) After talking w/ the pediatrician, it looks like a case of colic. We had also started mixing formula with his breast milk and that didn't go so well , so between the two we've started him on a protein-free formula. As typical with our family, we can't go the easy route . . . this formula is twice the price of regular formula =)

Well, Joshua doesn't like his pricey formula very much so we have to disguise it by mixing one ounce of formula with two ounces of milk. Even disguised, Joshua was storing the milk in his cheeks and waiting until Daddy wasn't looking and then would spit it all out. So, Daddy had to out smart Joshua by rubbing his throat to make him swallow. From there, the bottle war escalated into a battle of wills with Joshua refusing to eat more than an oz per feeding, which resulted in his waking up five times during the night. I was ready to cave by day two, but Daddy was stronger and appears to have won the battle of the wills today as Joshua has finished his last two bottles without any issues. Now we just need to get him to sleep before midnight!

2008-12-06T21:39:00.006-07:00

Thank you to Julie for keeping the blog updated for us! The last few weeks have been crazy and we have felt bad bcz we couldn't keep in touch with everyone so it was a big help having the blog updated for us. Julie may continue to help post updates going forward as well because I am having problems typing; I'm down to typing w/ just my index finger on my left hand.

Joshua update: He gained 4oz this past week and now weighs 7lbs 4oz. He eats and poops non-stop now! =) We learned this past week that he has a hole in his heart. No one at the hospital mentioned it to us but it was in the cardiologist report to our pediatrician. The hope is that it will close on its own, but if it doesn't he will need surgery by age 5-6. We are learning about all of the medical issues children and adults w/ down syndrome are likely to face (i.e. 75% will suffer hearing loss at some point in their life). Joshua and I are now competing for the title of family member with the most medical bills! The little guy is gaining on me =) He is so cute and is really calm tempered. He definitely takes after Dad more than Mom!

Me update: I had a really hard time after the c-section. I couldn't stand, lift my head, or move my fingers on my right hand, all of which were pretty scary. Each day I recovered a bit more though and took my first steps w/ my walker four days after the surgery. I did fall again my first night home and was lucky I didn't reopen my incision. Within a week though I had regained all of my abilities prior to the surgery, with the exceptions of being able to shower and go to the bathroom on my own. Although these seem like big changes, I was barely able to do these things on my own prior to the c-section. I was hoping to regain my balance after having Joshua but that hasn't happened. The last two weeks have been really good though; I feel like it's the first time in probably 5-6 months that I haven't had changes in a two-week span. (Hopefully I didn't just jinx it!) I will be starting a drug trial in a couple of weeks and will post more on that as it gets closer, but I am more optimistic than I have been in months.

Thank you to all of you who have sent us well wishes via email, mail, phone calls and visits. It has meant a lot to us and we're sorry if we haven't been able to respond. I'll stop now because if I continue I'm liable to get sappy =)

Not much of an update...

2008-11-30T06:32:00.002-07:00

It's been hard to connect with Tasha lately. I guess they are a bit busy!! I did speak with her briefly last night. Joshua is doing great, in fact, she's worried that they are feeding him TOO much. She said he is practically growing before their eyes.

They are going to stop pumping breastmilk, as it is taking too long. In the middle of the night it takes 2 hours to pump, feed Joshua, change him and get back into bed. They are seriously sleep-deprived!

Joshua is HOME!

2008-11-25T17:03:00.002-07:00

Tasha said they passed their test and they were released this afternoon! Joshua is now eating 50-70mm per feeding, since they are only feeding him when he is hungry, rather than waking him every 3 hours. He has gained weight and is now 6lbs 14oz.

Joshua is going home!

2008-11-24T15:32:00.003-07:00

He is still not taking 40 oz per feeding, but the head of the nursery did rounds this morning and said "Why is this baby still in the hospital?" He told the nurses to stop waking Joshua every 3 hours for a feeding and to just feed him when he's hungry so they could see how he does. He also asked why Joshua wasn't dressed. Now that he isn't on an IV, they can dress him.

Tonight, Tasha & Bob will stay at the hospital in the room with Joshua. They call it "nesting". Basically they are giving the parents the experience that they missed out on because the baby was in the NICU.

Depending how that goes, Joshua will be home tomorrow or Wednesday! (Tasha said it depends on how good of parents they are!)

He had another ECHO today and the unofficial report from the nurse was that the artery was closed. There was another small item that they are keeping an eye on, but it didn't sound serious.

Sunday update

2008-11-23T17:59:00.003-07:00

Joshua is off his IV and will remain off as long as he drinks 30cc per feeding. He is currently up to 35cc. He is also off the lights for jaundice! Unfortunately, he might not be home for Thanksgiving. His goal increases the longer he is in the hospital, as it is based on weight & age. So now his goal is 60cc. He's got a ways to go, but he's made great progress in the last couple of days.

Tasha is extremely tired and has a fever. She said she's not sick and assumes the fever is related to the surgery. She said she would call the doctor tomorrow. I imagine a full night sleep will be greatly beneficial, but she needs to wake every 3 hours to pump breastmilk. C'mon, Bob... can't you do that while she sleeps? ;0

Joshua is being moved

2008-11-22T14:16:00.003-07:00

to the transitional nursery! Woo hoo! He's now drinking 30 cc's. (Goal is 40 cc) He's still lazy about feeding, it takes effort to get him to drink that much, but it's progress.

Just a small update. Tasha said she'd try to call me later today with another.

And the good news continues...

2008-11-21T18:37:00.003-07:00

Joshua drank 20 ml today -- the goal is 40 ml before he can go home. And he had two bowel movements! Great news! The pediatrician thinks that it is realistic to expect him home for Thanksgiving. Unfortunately, he is back under the lights for jaundice, so they are only able to hold him during feedings. But it sounds like he is doing fantastic!

More good news

2008-11-20T16:05:00.003-07:00

The surgeon doesn't think that Joshua will need surgery! They think he just needs to learn how to do it on his own. They have been feeding him Pedialtye and tomorrow will change over to breast milk, if all goes well. They took him off the antibiotics (which he was receiving since he wasn't getting breast milk) and removed the tube from his mouth. Once he is drinking 40cc's, he will be able to go home! The earliest this will be is 4 days from now.

I think that's it ... I wasn't able to write info down tonight. Tasha & Bob were on the way to get a neck brace for Tasha tonight.

Oh - I forgot. Joshua will have another ECHO on Monday, to see if the valve has closed. The pediatrician said that she will not be worried if it hasn't closed yet.

Good news!

2008-11-19T17:18:00.002-07:00

Tasha is home from the hospital and was able to hold Joshua for 40 minutes this afternoon!

And the best news... the biopsy results were negative for Hirschsprung Disease. They think the lack of BMs might have been from a blockage that has cleared (or will clear...it was hard to hear on the cell phone) and they will give him a bottle of breastmilk tonight.

Bob met with the Genetics doctor yesterday and although the doctor did not have the test results, she said that he does indeed have Downs Syndrome. He might be in the hospital for a couple of weeks as many Downs babies have difficulty learning to eat. Tasha said he was going to town on a pacifier today, so maybe he'll prove them wrong.

Pictures... Bob? Peggy? Lou? Mark? Can someone indulge us, please?

Tuesday's update

2008-11-18T13:57:00.002-07:00

A couple of pieces of good news today. First, his heart is fine! He does have a valve (PPA? Tasha couldn't remember the name) that didn't close as it should have. Right now it isn't causing him issues, so they will just monitor. It's possible he will need to take medication for this in the future, but right now, it's not an issue. He will have additional ECHOs in the future.

The other piece of good news is that Tasha & Bob qualify for some state assistance for Joshua's medical bills. With their insurance, they would have had to pay 10% of his bills, and the ambulance ride alone was $8000! So the state will pay for anything that their insurance doesn't cover. What a relief!

Joshua is no longer under the lights for jaundice, so Bob and Lou were able to hold him today, for the first time since Sunday. They did warn that he might have to go back under the lights at some point.

They have been measuring his stomach -- yesterday it was 34 inches. (I'm thinking Tasha meant cm or mm or something. Can't be inches!!) and today is was 30-31.

They are doing the biopsy right now (about 2pm in Arizona). Unfortunately, they won't have results for 2 days.

Last night Joshua was trying to poop...his heart rate dropped pretty low because he was pushing so hard. He has had a couple of small successes, but nothing like what they are looking for.

Today at 3pm, Bob has a meeting to get the results from the genetic testing. At 5pm, Joshua will get another enema.

I think that's it for today! I'm going to try to post a couple of pictures that Tasha sent to my cell phone. It sounds like Peggy might have some digital pics for us soon!

Oh - and I had the hospital name wrong yesterday. Desert Sam changed their name to Banner Desert years ago. Sorry!

Baby update from Julie, Tasha's friend...

2008-11-17T20:09:00.003-07:00

First, I apologize if I get any facts wrong. I have notes written on 3 pieces of paper that my 3 year old crumpled and threw away in an attempt to get me off the phone!

Joshua Andrew Roher was born via c-section on Saturday, November 15th around 5:30am. Tasha's water broke around 2am, apparently he wanted to choose his own the birth date! He was 6 pounds, 10 ounces and 20 inches long. Pretty good size for an early baby. I'm told that he is very cute and I'm hoping to post a picture here for all to see soon!

Unfortunately, Joshua is having a rocky start. He was not feeding well so was given an IV for nutrients. His belly is big and hard and he has not had a bowel movement on his own. He has a reverse feeding tube which pumps junk out of his belly.

He was taken by ambulance to the NICU at Desert Samaritan Hospital in Mesa on Sunday evening as he still hadn't had a BM and they were concerned that he had a bowel obstruction. On Monday he was given a dye test to look for a blockage, but the results were inconclusive. They gave him an enema and he finally did have a BM. However, his belly is still big.

The doctor believes that nerves in his intestines that tell the body to push out the BM are underdeveloped. Tomorrow they will do a biopsy on the nerves to confirm this theory. If this is the case they will give daily enemas for about 3 weeks, until he is stronger, and then he will have surgery. If they find that he does have a blockage, they will do surgery immediately.

He is under lamps for jaundice, although Tasha doesn't think he is yellow at all. She may be a little biased. ;0

He failed his initial hearing test, which is common, as sometimes they still have amniotic fluid in their ears. They will repeat the test at a later time. And finally, there are a couple of markers for Downs Syndrome. His ears are low-set and his eyes are puffy. (Again, Tasha doesn't agree!) They have done a test to confirm and should have the results on Wednesday. It sounds like this test is just a formality. Downs children often have heart issues, so he was given an ECHO cardiogram today. They did not get the results yet.

Tasha is doing well. She is able to walk with her walker now. She wasn't even able to hold up her head on Saturday, so she has made a lot of progress! She will be in the hospital until Tuesday or Wednesday. She's not complaining, as she is enjoying the hot meals. Perhaps Bob needs cooking lessons for Christmas? The challenge is that if she is released, Bob won't be able to be at the hospital with Joshua, as she can't be home alone. They are hoping to get in-home health assistance through the ALS association.

New Due Date

2008-10-24T05:35:00.003-07:00

Due to my doctor's schedule, our c-section date has been moved to 11/21 with the amino still on 11/19. We also met with the anesthesiologist at the hospital last night and he doesn't see any concerns. He recommends an epidural rather than a spinal block because the spinal block would be more likely to impact my ability to breath. The epidural numbs more gradually and doesn't numb as high up the chest as a spinal block, thus less likely to result in oxygen changes. Any changes that do occur with an epidural will be gradual so I can adjust and not panic like I might with sudden shortness of breath that may occur from a spinal block. So, looks like we are all set . . . now we just need to get the crib set up =)

2008-10-21T05:49:00.002-07:00

Quick pregnancy updates: For those who hadn't heard, I have gestational diabetes so I am on a somewhat restricted diet (and have lost four of the five lbs I had gained) and have to take my sugar levels 4x a day. Due to worries about my falling, we're doing an amino on 11/19 and once the test comes back that his lungs are developed then they will do the c-section later the same day or the next morning. We had an ultrasound yesterday and he's already 4lbs 13 oz! We only four weeks to go!

Update on changes: (This past month has been the worst downward trend I've had so far)

I'm now having a hard time eating and drinking because I can't lift the cup, fork, etc to my mouth. Bob has offered to feed me, but I've managed without his help so far but we're probably not too far from it coming to that.

I can no longer lift my legs into or out of the car, so Bob has to lift them and then about half the time he has to pick me up and reposition me on the seat. He also has to buckle and unbuckle me bcz I can't manage the seatbelt or the release button.

Dad & Jean got us a little microwave for the counter bcz I could no longer reach the space saver one over our stove.

About 50-60% of the time Bob has to help me in and out of the shower. I can no longer hold a towel (they are very heavy!) or dry myself off so he has to do that for me every morning.

I can no longer comb my hair so Tana does that for me every morning.

I can't pick up the house any longer (even paper is hard) so Mom had been coming over quite a bit to help out w/ that and helping w/ shopping for us bcz it's hard to get me to the store.

I can no longer do laundry; it's just too heavy. Bob & Tana have had to take over that chore.

There has been quite a bit more, but those are the highlights.

BiPap

2008-10-17T06:04:00.003-07:00

After clinic back in Sept., my doctor ordered an overnight oxygen test because he wanted to make sure I was getting enough oxygen with the breathing problems I have been having. So, they brought a little machine out overnight that I had to sleep with so it could measure the percent of oxygen in my system. They want the reading over 90% consistently. My awake reading was 98%, but they said that 4% of the night I dropped below 90%. My doctor still feels this could be pregnancy related, but regardless the goal is to make sure I'm over 90% so he ordered a bipap machine for me, which we picked up yesterday.

I would normally fight this, but we went to an ALS seminar a few weeks ago and one of the Mayo docs did a topic on bipap and how it extends life expectancy by six months, which is longer than any medication. I asked my dr. if we'd retest my oxygen after I deliver to determine if it was pregnancy, but he said no. Basically, he'd like to start every patient on bipap immediately, but insurance won't pay for it until there has been oxygen loss so he doesn't want to give them a reason to take it away.

In addition to increasing life expectancy, he said it may help alleviate my nighttime muscle cramps and morning pain and stiffness (I hadn't mentioned this before, but just about every morning I have to give myself a pep talk just to get out of bed because my muscles hurt so much).

Walk to Defeat ALS

2008-10-13T15:58:00.007-07:00

We had a great turn out for the walk and we couldn't have asked for better weather! It was sunny and around 75 degrees! It will be back over 90 by the middle of this week so our brief cooling trend couldn't have come at a better time. =) Thank you to all of our family, friends and co-workers who came out and walked and/or donated. Also, a big thank you to our virtual walkers who were there in spirit and helped the team raise money (Cheryl & Angie- a big thank you!). Our team raised $13,098 without Chase matching and came in 2nd place! We wouldn't have done nearly as well without Julianne as the driving force - thanks JAM! We didn't get a chance to take our team pic (see right) until after the walk so we're missing a few folks who had to leave. The blog doesn't allow for a larger pic so if anyone wants me to email them a copy, let me know!

CA trip

2008-10-08T11:48:00.008-07:00

We went to Disneyland, Sea World & San Diego for a long weekend this past weekend and although we had fun, I think my vacation days are over.

Although both hotel rooms were handicap "assessable" I couldn't shower on my own in either one. B0b basically had to do everything for me while I just stood under the water hanging on to the rails. Also, my walker is the only seat in the room that I can get out of on my own and it's not exactly the most comfortable for hanging our or t.v. watching. Hotel beds are higher so I can get off them on my own; however, bcz they are higher I struggle to get my legs up on the bed and often times needed help. So, unless they start to make ALS assessable rooms, I think this will be our last trip. :-)

Disney & Sea World were the least crowded I've ever seen them so that was great! It made navigating in the wheelchair a lot easier! Bob & I only stayed at Disney until around 4pm bcz I was wiped out by then (and I had only ridden one ride!). Tana and her friend Ann stayed until about 11:30pm though and had a great time. While they were at Disney, Bob and I went to dinner at a local diner and I fell as we were leaving. I had felt my feet drag a few times earlier, but the last time my walker wasn't enough to keep me upright. The good news is the walker helped break my fall and my stomach/Joshua was fine. The bad news is my poor knee got it again! Even though I was wearing pants, it got pretty torn up. After this, I spent the rest of the trip in the wheelchair, only using the walker in the hotel rooms.

We discovered on this trip that Tana can no longer lift me from a seated position (i.e. the bathroom) and Bob really struggled to lift me when I fell, so it's obvious that I am not able to help as much as before and have really become dead weight. The worst part about this is Bob having to come to the bathroom w/ me every time, which isn't easy when we're in public. We had to ask to have a bathroom closed several times just so he could assist me.

I had an issue at Sea World when I thought I could do something on my own (go see the Polar Bears), but couldn't. I got very frustrated, started to cry, and didn't leave Bob's side the rest of the trip. One of the worst things about this disease is the loss of independence and confidence. Heck, I can't count the number of times I've driven to CA on my own to take Tana to Disney or Sea World and now I don't want Bob to leave my side any time we're in public. :(

After all of this, I was feeling very sorry for myself and thought about coming home a day early, but then pretty quickly switched to being angry and determined and decided I wasn't going to give up. That turned out to be the best decision because our last day was the one I enjoyed the most.

We went to the beach and I sat in the wheelchair on the sidewalk watching Bob and the kids play in the water. I let myself feel sorry for myself for about the 1st 5 min. bcz I couldn't walk in the sand or water, but then I got over it and just enjoyed being outside (it was beautiful weather!) watching them play and people watching! Later, we went to Sea Port Village and did the Seal Tour (a bus tour that turns into a boat & does a water tour) and saw a bunch of Sea Lions. I tried to talk Bob into finding Cocoa a new home and getting a Sea Lion instead, but he didn't go for it. :-)

Poor Bob got sick and was miserable by the time we were headed home, but was stuck driving the whole way bcz I can't drive. We stopped for an hour on the way home so he could take a nap, but he didn't feel any better. So, now Bob is laying in bed hoping to get some relief.

This Months Abilities

2008-09-28T08:15:00.003-07:00

Based on reactions to the last "abilities" update, I will try to get better at posting changes at least once a month so as not shock everyone. :-) I guess I just adjust as the changes come and never really sit down and list what I can't do, but I'll give it a shot.

Just a few items to catch everyone up, but I haven't driven since the end of June. Initially when I quit driving it was because I wouldn't have had the strength to control the vehicle if I had to react suddenly. I haven't tried to drive since then, but I know that now I wouldn't be able to extend my arms to reach and hold the steering wheel. My Mom helps us w/ errands when needed and Tana will be getting her drivers permit in two weeks and her license in six months and that will help out as well. We have also tried the online grocery store shopping w/ delivery as a way to make things easier.

After 18 years of wearing them, I had to give up on contacts and start wearing my glasses back in July. My fingers weren't strong enough to hold my eye open while I put the contact in and took it out. I learned this the hard way and gave myself an eye infection:-)

Also in July, I cut my hair short because washing and combing to was too hard. Once I cut it, I was able to take care of it myself, but this last month that has changed. I can still put my hair in a headband on my own (but it's very hard and it takes me a while), but everyday Tana has to straighten my bangs for me and put in the barrette or bobby pin. If you saw the clip from tv, Tana got up early and did my tv-do by straightening it for me:-)

As of the last couple of weeks I can no longer stand from any public toilet (except for work bcz it's wall mounted and must be higher than the regular handicap toilets). So, this makes going out in public (especially w/ a pregnancy bladder!) a challenge. If Tana is with us she is able to go w/ me and pick me up (she may have a small frame, but she's strong!). The challenge is when Bob and I are alone because there aren't many family restrooms in public, so we try to plan our errands or outings for just an hour or two. The few times we haven't been able to avoid it, the establishment we were at has done a good job accommodating us when I explain that I need help.

As of this month, I can no longer extend my arms out in front of me, making reaching for things a challenge. I struggle to get dishes and cups from the bottom shelf of the cupboard. Turning the shower off & on has become difficult. I have also needed to employ Bob and Tana's help shaving my under-arms bcz I can't do it any longer. (Tana's much better at this than Bob :-)

Sadly, I can no longer pick Joey up more than a few inches off the ground and he gets nervous when I even try. So, since I can't pick up my 7.5 lbs chihuahua, I'm obviously not going to be able to lift Joshua once he's born. Bob is enjoying his sleep now because he knows he's going to be the one getting up in the middle of the night once he's born . . . at least I'm getting one good thing from this disease! :-) Well, that's all for now.

Mid-Day Appearance

2008-09-24T14:59:00.001-07:00

Our local NBC station provided a link to yesterday's segment. Just keep in mind, when they say the camera adds 10lbs they really mean 50lbs!

http://gannett.a.mms.mavenapps.net:80/mms/rt/1/site/gannett-phoenix-531-pub01-live/current/launch.html?maven_playerId=arizonamidday&maven_referralPlaylistId=af2b51a062c306bced8a16317f9a3065f5b3e4eb&maven_referralObject=866503497

Arizona Mid-Day

2008-09-18T05:39:00.002-07:00

We received the information from Kim and we'll be on next Tues, Sept. 23rd sometime between 1-2pm on channel 12/NBC. The segment will be between 3-5 minutes so if you blink you may miss it! :-) They don't provide a copy of the show/segment for us and we don't have tivo (sp?), so we'll need someone to record it for us!

Clinic

2008-09-07T09:08:00.005-07:00

I had clinic this past week, which will be last one until mid-January because my due date coincides with the three month schedule. I will see Dr. Levine at his office the first week or two of Nov. though so we can talk about a couple of drug trials starting in Jan. and make some decisions regarding which one I want to participate in.

The ALSA is making an appearance on Mid-day Arizona (a local talk-news show) on 9/23 to talk about all of the great things they do and Kim has asked me to join her on the show. So, I'll have my 15 min. of fame in 3 min. or less :-) I'm nervous about the whole t.v. thing but I'm thrilled to be able to help promote awareness about the ALSA.

I hadn't posted this on the blog, but I've had some trouble breathing the past few weeks, which was really freaking me out. All of the symptoms I had could be explained by pregnancy or changes as a result of the ALS, so I was anxious to see if they could determine which it was. Great news is it looks likely that it is pregnancy related! I blew a 79%, which was my lowest but not much lower than the 81-85% I've blown in the past and wasn't a concern to the respiratory therapist. The test that they are more concerned with, I blew a -60 last time, which is good, and they look for a -60 or lower. This time I blew a -35 and -39, which was concerning, but once I straightened up I blew a -60. She said this indicated it was just Joshua sitting on my organs/diaphragm. The other thing that indicates it's Joshua is that I am getting short of breath at random times and positions; whereas, if it were ALS driven it would be more consistent with activity and position.

Well, those are the highlights from clinic so that's all for now!

Walk to Defeat ALS

2008-09-02T05:42:00.004-07:00

I probably hit most of you up by email, but just in case I missed anyone please help us with the ALSA's Walk to Defeat ALS on Sun., Oct. 12th at Tempe Town Lake! We need as many walkers and as many donations we can drum up! Here is the link for our team, Chase the Cure or ALS.

We hope to see you there!

http://web.alsa.org/site/TR/Walks/ArizonaWalk?team_id=88941&pg=team&fr_id=4870

Baby & Abilities

2008-08-17T09:42:00.006-07:00

Everything is going well with the pregnancy and I haven't had any changes to my cervix. This coming week will be my last weekly appointment because I'm 24 weeks now, but we will still have appointments every two weeks. The frequent appointments are frustrating, but I try to remind myself that they are better than bed rest! Joshua is moving all over the place now and Bob and Tana both felt him last night for the 1st time!

I was talking to Julie a couple of weeks ago and realized that if you don't see me often I haven't done a very good job describing some of the changes, so here are some of the daily challenges . . .

I can no longer dress myself or put deodorant on, so Bob or Tana has to help me every day. This is primarily because my arms and fingers aren't strong enough to do the work. Bob jokes that he's just going to line Joshua and I up in the morning to dress us both! :-)

I have a very hard time getting into and out of our bed (even w/ my rail) because it's too high to easily lift my legs up on it, so I spend at least part of my nights in our spare twin bed because it's a lot lower. I try starting out in our bed but this baby must jump on my bladder because I am up at least twice a night to go to the bathroom and that's when it's easier to use the lower bed. I can't lift the laundry detergent or press the spout down on that kind, so I have a small travel size detergent container that Tana refills for me every week. I have to do smaller loads of laundry because larger loads are too heavy and wear me out (putting them all in the washer, transferring them to the dryer & folding are strenuous!).

Anything that requires dexterity of the fingers is either out or a challenge. I still like to read, but have a hard time turning the pages. I takes me about 45 minutes to flip through the coupons and cut them out (using scissors is now a two-handed activity). Using silverware is a challenge, but not as hard as finger foods. Between my fingers and my growing belly, I seem to drop something on myself at least once a meal now :-) I can't scrapbook or do any other type of craft any longer.

I watch a lot of t.v., and as most of you know this is something I almost never did before. What used to be an hour a week is now a minimum of an hour or two a day. So, I've been bored, bored, bored! Julie suggested I try online scrap booking because it's not a lot of keyboarding (which is also hard), but primarily uses the mouse. This has turned out to be a great idea because I am able to do it and I was upset that I hadn't been able to scrapbook our wedding pics, let alone thinking about the upcoming baby pics! I am open to any other suggestions of things to do!

The bathroom: it has a whole set of challenges, some of which I will not share on the blog! Some of the most difficult (that I will share) have been standing up afterwards and pulling my pants up. I have learned that handicap bathroom means simply putting in rails, so I have to make sure it's a higher toilet before sitting down bcz I can't stand up from the regular sized ones. We went to Taco Bell this past week and I had to go to the bathroom (Joshua jumping on bladder again!) and I made sure it was a high toilet before I sat down. Unfortunately, I didn't look to see where the rails were! One was directly behind me and other was about four feet away! The wall closest to the toilet didn't have a rail. I was stuck. I knew Bob would come in search of me before too long so I just sat there waiting until he had an employee check on me, at which point they allowed him in the womens room to lift me up . . . lucky Bob!

I can still make lunches; it may take me 30-40 minutes to make 3-4 sandwiches, but I can still do it! I cannot unload the dishwasher (except for the silverware), but I can load it and I can wash most of the pots and pans myself. Most days, I can still make dinner but Tana has been helping out a lot with that. I still do mine and Bob's laundry every week, it just takes longer. I'm trying to do what I can so I stay independent and don't become a total burden to Bob and Tana. :-)
Well, that's all for now . . . even though I'm one-finger typing my index fingers are getting tired!

Baby & Misc.

2008-07-25T22:22:00.002-07:00

We have had two ultrasounds since the last update. The first one showed a pretty big change with my cervix (not good), but I escaped bed rest with the promise of taking it easy when I'm not at work. This week there wasn't a change from the week before, which was great news! We will continue to go for weekly ultrasounds through 24 weeks (I'm 20 weeks now, so I will have 4 more appts).

I had my first fall at work this week. I was somewhat grateful that it was in my office, rather than out on the floor in front of everyone. However, I fell in my doorway so I did have a small crowd gathered around. Other than a skinned knee, the only thing hurt was my pride. :-) One of the many benefits of Bob & I working at the same place was that a peer of mine was able to get a hold of him and he was there within a couple of minutes to pick me up! My knee that took the hit was the same one that I fell on when I sprained my ankle and the same one that I landed on at the park in CA. If it wasn't already, my leg modeling career has definitely come to an end! :-)

Eventful Week

2008-07-12T08:01:00.003-07:00

So, we've had an eventful week, which started w/ a trip to urgent care last Sat. bcz I managed to scratch my eye and get an eye infection. This was ALS related because my fingers haven't been strong enough to hold my eyes open to get my contacts in and out, and I scratched my eye attempting to remove a contact. I was given antibiotic eye drops for the infection.

Then after two trips to my regular dr.'s office and a visit to a podiatrist, it was determined that I have a staff infection in my foot from stepping on something, which they had to cut out (but not before give me the most painful shot that I've ever had - I screamed!). Now I'm on antibiotics for the infection, have medical cream for the wound along w/ special band aides that have to be replaced 2-3 times per day, I have to soak my foot in water in Epsom salt 2-3 times per day, and let's not forget my eye drops! (This was my first unrelated ALS injury this year!)

After all of this excitement we got to see the baby at our 18 week ultrasound appointment, and he is definitely a boy! He did not show any signs of downs syndrome, which was the best news we've had in a long time!!!

One small catch though, they discovered my cervix may not be big enough or may not be strong enough to hold Joshua so one of two things will likely happen:
1. I will have a procedure done in the next few weeks to sew my cervix up so Joshua doesn't fall out (which happens between 18-24 weeks)
2. I won't need the procedure, but Joshua will be be born early
The doctor said that this was caught early so if we have to do #1, it will be pretty straightforward. He said on a panic scale of 1 to 10, we're only at a 2-3. Bob isn't worried and I'm trying very hard not to worry. :-)
We go back next week for another ultrasound and we'll know more then.
(This is not related toALS. ALS only effects the controllable muscles, not the uncontrollable ones.)
I don't want to tempt the fates, but after this week I wonder what more can we be given to juggle!

EMG Update

2008-07-05T08:45:00.002-07:00

I went for the EMG on Thurs. I assumed that I would have the needle in the muscle part, but it turns out it he wanted to test my nerves, not my muscles, which is done through the electric shock part (which I dislike even less than the needles in the muscles.) He said that if my nerves were damaged on the outside it would indicate an infection, rather than if they were damaged on the inside it would indicate ALS. Unfortunately, mine are damaged on the inside. He's now calling it ALS, not just so I can get the support I need from the ALSA, but because that's what he's landed on as a diagnosis. The good news is, my reflexes continue to be normal, which both the doctor and I are taking as a good sign that it's progressing slower than most ALS cases which should equate to a longer life expectancy. The doctor talked to us again about getting me involved in drug trials once Joshua is born because there are a couple starting in the Dec./Jan. timeframe . . . so we'll continue to hope that I'll be involved in the Lithium trial which looks the most promising so far.

Christmas in July

2008-07-02T05:46:00.003-07:00

It was really June 30th, but we received all of the stuff from the ALS Association (ALSA). We came home to find two bangs in the walls from where Tana was trying out the power wheel chair, but then Bob added a couple of his own too. :-) I LOVE the recliner and the walker! I can't express how great it feels to stand from a sitting position like a normal person (if you ignore the raised chair behind me) and to be able to walk around the house like a normal person (again, ignoring the walker helping me to do this!) This is the most in control and self-reliant I have felt in months and it's great! I haven't been brave enough to take the walker in public or to work yet, but I'm sure I'll start this weekend because the benefit of being able to walk with confidence outweighs my pride :-) Once again, I cannot say enough about the ALSA (alsa.org)!!

Eye Reading Machine

2008-06-23T19:26:00.004-07:00

Here's a good article that Julianne found in USA Today regarding ALS and the eye reading machine. The online article doesn't have the diagram the actual paper had, but it does explain how it works.

http://www.usatoday.com/printedition/life/20080619/bl_cover19_alseyetracking.art.htm

ALS Clinic - Part II

2008-06-22T22:17:00.003-07:00

The speech therapist gave us a state agency that sometimes has the speaking software in stock that they would give to us for use at home. He said if they don't have it to give, we can order it discounted through them for about $100 (retail is about $250-$300).
The PT said my right hand is starting to curl up in a fist; there is name for this but I can't remember what it's called. So, I'm supposed to keep my hand open and fingers/palm flat whenever I'm resting my hand, even though it's more comfortable keeping it balled up in a loose fist. I may get to a point where I need to wear a splint on it to keep my fingers from curling up, but hopefully that won't be any time soon.
My oxygen looks good! At my first clinic my oxygen intake was 84% compared to expected (not a big deal, it would only be a big deal if it went down), the 2nd time was 82%, and this time it was 85% - my best one yet! :-)
We met with my dr. last and he tested my reflexes again. Thus far my reflexes have been normal, which is what has kept me from an official ALS diagnosis. Well, he saw some change in my reflexes, but not to the extent you would expect with my degree of muscle loss. He wants to try me on the medication they would have prescribed had my spinal tap shown inflammation or infection. The medication runs $20-$30k for a two month supply so he has to make a strong case with insurance. He wants to do another EMG (he hasn't done one on me before) to see if he can pick up anything in the EMG that he can use to make a case to the insurance company. He said the medication would be safe during pregnancy now that I'm out of my 1st trimester. He said the alternative would be to wait two more months to see if my reflexes change more, but who knows what other muscle loss and ability I will lose in two months. So, I will be going for another EMG in the next couple of weeks. Although we're hopeful, we're not holding our breath.

After experiencing our first clinic w/Dr. Levine and his team we are definitely switching doctors. The whole experience was so much more helpful and upbeat. Instead of us asking questions and for help, they directed us on what we need and where to get it. They were all so upbeat and positive, they just put me at ease. I especially liked the PT and OT; they were great (even if Bob thought they were a little hokey)!

Well, I think that's all of the major highlights from clinic. I won't go again for three months unless I need to be seen earlier than that.

ALS Clinic - Part I

2008-06-21T10:31:00.004-07:00

I'll try to capture as much about the new clinic in this one update, but we'll how it goes . . . I loved the physical and occupational therapists! They were very upbeat and extremely helpful. They gave me a new leg brace (just gave it to me!) that should fit in almost all of my normal shoes. I can't try it until my foot heals, but if it works- the ugly shoes are going back immediately! In addition they recommended all kinds of things like: 1) A transport wheel chair, which is very light weight. We'd keep it in the car so Bob can push me into work or into stores where there is a lot of walking, etc. Like my past PT, they said my strength is pretty good but my falls are bcz I'm fatigued from doing too much. 2) A power wheel chair for the house, bcz I am not strong enough to push my existing one on carpet. They said that as my belly grows I'm going to need to use it more and more so I don't wear myself out. 3) A walker to use at home, work, etc to make sure I don't fall (I knew this one would be coming) 4) An eject recliner so I can stand up from a sitting position, which I haven't been able to do from our furniture for some time. We had priced these on craigslist and they run about $300 used. 5) They also recommend several other smaller items to help turn the washing machine knob, and do other household chores that I'm having trouble with. Later we met w/ Kim, the social worker from the ALS Association, who is going to give us all of the items listed above - including the recliner! I can't tell you how grateful I am that we met her at my last dr.'s office, which coincidently, she hasn't been back to his clinic since she met us back in March. She said we should have everything within two weeks and they deliver! I can not say enough about the ALS Association (ALSA) and can't wait to get our team going for the Oct. walk, especially since we are seeing first hand where the money goes. Well, that's about all the hand can handle for now (typing), so I'll post more updates from the clinic later.

Falls

2008-06-20T16:46:00.002-07:00

There has been a lot this week, but I won't be able to update all info at one time so I'll give an update on my falls now and ALS clinic later.
I fell Mon. night, my first fall at home. I managed to sprain my ankle and went to urgent care first thing Tues. Normally, they would wrap the foot, give me crutches and send me on my way; however, I couldn't use crutches. My arms and left leg weren't stong enough to support me upright without the use of my right leg (the one I sprained). So, we spent four hours Tues. dealing with insurance and numerous durable equipment company's in order to track down a wheelchair. We ended up having to drive to Phoenix to one of the companies because we weren't getting any help over the phone, but a couple of hours later we were on our way home with a wheelchair. The ankle actually ended up getting worse and caused me to miss most of a week of work, but now it finally seems to be getting better.
I fell again on Wed. at Banner Samartian Hospital rehab building, before checking in for ALS Clinic. I was in the bathroom (an individual one, not one with stalls) and was getting ready to leave when I lost my balance and started falling. The good news is, I was able to grab the rail in the bathroom and although I wasn't stong enogh to keep myself from falling, I was able to turn my fall into more of a slide down so I didn't hurt myself in anyway. The hard part was dragging myself over to the door and opening it. I sat there with it open about a foot; I figured I would sit and rest while waiting for someone to walk down the hall so I could ask for help. After a few min no one had come by and I was getting impatient (what else is new :-) so I drug myself out farther so I could look down the hall . . . and there was Bob, who had come looking for me! He arrived at the same time a nurse finally walked by- but then at least 4-5 hospital people needed to talk to me to file a report.
I haven't fallen since, but I've pretty much been bedridden this week so it would have difficult :-)
I'll try to add an update about clinic this weekend - got lots of good info!

Misc. Updates

2008-06-09T20:24:00.009-07:00

It's been a while since I've added an update so I'll list a few tonight and then more later (my hand gets very tired typing these days so I can't do too much at one time):

1. Finding shoes to go w/ the brace has been challenging. Mom and I searched a couple of locations before I gave up. To be honest, I haven't been too eager to find a shoe store that specializes in this type of footware bcz they are so ugly. :-)

2. The temporary brace worked for a month without any falls so I was just procastinating finding shoes until I fell again last week. This fall was worse because: 1. I hurt my head and knee and broke my cell phone 2. Although the injuries weren't bad the blood scared my almost two-year-old niece so she didn't want to come near me (she's in the pic to the right with Tana) :-( 3. I'm pregnant so falling is a bad thing (YES! Bob and I are expecting! I am 14 weeks pregnant this week. Because of my miscarriage history we didn't tell many people, outside of family, until this week. We had an ultrasound at 12 weeks and found out that we're having a little boy, whose name as of right now is Joshua! More baby updates to follow at a later date :-)

3. Bob and I went to a special shoe store this weekend and spent $200 on the ugliest, and most expensive, pair of shoes I've owned. Sadly, they were the least ugliest ones they had. :-(

4. I'm not sure if the shoes will work but I spoke w/ the social worker at the als association today, Kim, and she said to bring the brace to clinic next week w/ the shoes and they'll make sure they will work together before I wear the $200 ugly shoes and can't return them. If they don't work, I may not have a choice but to get special tennis shoes for the brace and wear tennis shoes w/ my work clothes (which would make me even more upset than wearing ugly work shoes).

5. I got my speaking software at work but it hasn't been hooked up yet. I'll be following up on that this week bcz typing has become much harder w/ the right hand.

Speaking of which, I have been typing one-handed since the #2 update bcz my right-hand has quit for the day, so I'm going to call it a night for now!

THANK YOU FRESNO

2008-06-05T07:53:00.005-07:00

I want to send a BIG thank you to Troy and Denise (my brother and sister-in-law) in Fresno for rounding up a team of walkers for the June 1st ALS Association walk in Fresno! Thank you to all who came out and walked and helped the team beat its goal! (Also, thanks to DC for being willing to share the walk and team name with his uncle who is also a PALS*!)
I have had initial conversations with the MDA and the ALS Association here in Phoenix and it's pretty clear the ALS Assoc. is going to be able to provide us more assistance than the MDA. Bob and I are committed to supporting the ALS Assoc. here in Phx and will be getting a team together for the walk in Tempe this coming Oct.!
*PALS = Person with ALS

Brace

2008-05-22T06:20:00.003-07:00

I got the brace on Mon., but I have to buy all new shoes for it to fit in. Even my work flats are too small for the brace and I can't have a heel > 3/8". The guy said the brace is made for tennis shoes, but I don't want to wear tennis shoes to work so I'm going to go in search of new work shoes this weekend.

Brace Update

2008-05-14T05:51:00.003-07:00

My brace is in, but they couldn't get us an afternoon appointment for my fitting until next Mon. So, I am forced to use the little brace until then. :-) Actually, the little brace is getting hot and itchy, and although the real brace is bigger and uglier, at least it will have more ventilation.

Spinal Tap & Brace

2008-05-11T17:05:00.003-07:00

The doctor called on Thurs. while I was in DE and let us know that the results came back on the spinal tap and blood work, and as we had suspected, I don't have the treatable muscle lost. They tested for three things: 1. infection 2. inflammation 3. nerves/muscles dying. The first two tests were normal, which means I don't have either of these causing the 3rd, which did test positive. My new dr. is in agreement with our previous dr. about diagnosing me with ALS in order to get the services I need. He also agreed w/ my previous dr. about scheduling clinic every three months. So, we will be switching to the new dr. and talking to him about what drug trials I qualify for in the future.
Bob said the brace place didn't call this past week so we'll have to call tomorrow to see if my brace is in. I used the little ankle brace all week last week and I assumed it worked because I didn't fall once. :-)
Happy Mother's Day to all of the mom's reading this!

Brace Update

2008-05-03T17:51:00.002-07:00

The brace didn't come in by Fri. so I won't have it for over a week now since I'll be in DE all of next week and the brace place is only open Mon. - Fri. 9am - 5pm. My doctor had told us that if it takes a while to get the brace, to purchase an ankle brace from sports authority that a lot of basketball players use. He said it won't be as effective as the leg/foot brace in forcing my foot to carry through on my strides, but it would be better than nothing. We purchased it last night and I've been wearing it today. It's not too bad, the only real complaints I have are that it's hot and it's ugly (but not as ugly as the brace will be). I do feel like I'm stepping better with it too. (I'm already gearing up to make my argument to Bob that this brace is all I probably need :-) The other good thing about the ankle brace is that I can wear it with flip flops :-)

ALS Clinic

2008-05-01T20:02:00.004-07:00

Good news and bad news today at clinic. The good news is my speech and swallowing are just fine. My oxygen was only 2% less than last time, which they don't consider an issue because it can vary from day to day. Before I give the bad news though, I should probably clarify for those who don't see me often that I've been walking with a limp for a while now, walking distances is very tiring, and I have been stumbling. In addition, I've fallen twice in the past week and a half. The falling is bad because 1. It hurts and 2. I can't get myself up afterwards (thanks to John and Flo from work for picking me up one time and the stranger at the movie theater another time :-). Well, they watched me walk today and my right foot is dragging, which is what is causing me to trip. So, in order to keep me up and from falling I have to get a brace for my right foot and start using a cane. I had the choice of that combo or using a walker, which I refused. In addition, we got the signed form in order to get a handicap plate/decal for the car. We were told that I also need to get a scooter thingy for long distances (mall, airport, etc), rails for the shower, and possibly bed rails. The MDA and ALS Association offer loaners for much of the equipment once a patient is officially diagnosed with ALS, so as of today my doctor was registering me with both organizations as an ALS patient. After the appointment we went to order my leg brace, which costs $600 out of pocket. Insurance only covers 70% and that's after a $600 deductible is met. Well, coincidently my brace was $600 and my deductible is $600. So, if it looks like I'll need additional braces before year end we're going to push for it this year, because the deductible will start fresh again next year. My brace should be in tomorrow; Bob really wants me to have it before I go to DE next week because he's really worried about my falling. After the brace place we went to DMV and got the handicap decal, which hangs from the mirror so I can take it from car to car and bring it with me if I travel, etc. We'll probably order the plate for my car as well, but we'll do that this summer when my tags expire. Well, that's all for now!

Nothing New

2008-04-19T10:10:00.002-07:00

The good news is I don't really have anything new to report! The only change the last few weeks has been increased difficulty standing from a sitting position and sitting up from a laying position. Our weekend may include shopping for handicap toilets or a raiser to go under the toilet - can't wait! :-)
Next week I'm off to Elgin, IL, Bob is off to Kennasaw, GA, and Tana is off to Nana's.
I have ALS clinic a week from Thurs. w/ my old dr., Sivakumar, but we haven't decided if we're going to go or cancel. The first appointment for ALS clinic with the new dr., Levine, isn't until June 18th. We'll probably keep the Sivakumar appointment (even though I don't really want to see him) just because it's the appointment that will complete my baseline. At the last clinic my oxygen intake was 80% compared to expected, so I'm kind of eager to make sure there hasn't been a change.
From the great Bugs Bunny . . . "that's all folks!"

MDA Walk & Spinal Tap

2008-04-07T19:12:00.005-07:00

The walk went well on Sat. and we had a really good turn out. With company matching, we raised over $7k in just under two weeks! It was amazing how much support we received! I was able to finish the walk and then took about a two hour nap that afternoon. :-) I was a bit sore through the weekend and this morning, but nothing too bad.
I had the spinal tap this afternoon and it went as well as one goes I guess :-) I told the nurse that after having needles stuck in my tongue at my last EMG, that needles in the back were a walk in the park! I'm just being really careful not to move or bend my back. They said the risk with a spinal tap is not allowing the hole in the spinal fluid sac to heal properly and it leaks fluid causing debilitating headaches. So, at the first sign of a headache I'm supposed to promptly lie down. They said after Wed. if I don't get a headache I'm home free :-) So provided I don't have a headache in the morning (I haven't had one today at all), then I'm going to work but will just take it easy.
I did have to sign a form stating that the blood work they drew will most likely not be covered by insurance and I'll have to pay for it ($200) and there is a chance insurance won't cover the spinal tap and I'll have to pay for that too ($800). I'll fight the spinal tap with insurance, but they pretty much said I'm going to be on my own for the blood work, but we'll see how it pans out. Now, we just wait for the results and the bill :-)

Second Opinion

2008-04-04T18:11:00.002-07:00

We met with Dr. Levine today and it was a really good appointment. He talked with us for a while and then did the same strength tests my previous dr. has done and did a few more reflex tests than what I've had in the past. He said it wasn't necessary to do another EMG. He said I definitely have MND; however, it's not ALS (at least not yet). There are two criteria for determining ALS: 1. Loss of muscle 2. Loss of reflexes. At this point, I only have the loss of muscle/strength. He said in typical MND or ALS that the motor neurons die but there is not evidence as to why; they aren't infected, etc.- they just die. He said that in very, very rare cases they have found that the immune system is actually the cause of the dying motor neurons and in those cases it can be treated (bcz they know the cause). The only way to tell if the immune system is involved is through a spinal tap and a special blood test. So, I'm scheduled for the blood test and spinal tap on Mon. Although it's very unlikely that this is the cause, we are hopeful! If the tests come back without indication that it's the immune system, he will treat me the same as my current doctor, which means attending ALS clinics to manage the symptoms so that I am able to live life the best I can with the abilities I have.

MDA Stride & Ride

2008-04-04T15:40:00.002-07:00

I'm late getting this posted, but here is the link if anyone would like to join us on the walk:
https://www.mdaevent.org/?TeamID=a8f3adfd-ea22-445c-84ed-95cf4906e0ae
Here is the link if you'd like to donate:
https://www.mdaevent.org/ParticipantInfo.aspx?j=b89211da-fff3-4333-a2db-4d9215ed5341

2008-04-01T06:10:00.002-07:00

Since I'm catching flack for not updating frequently enough (Troy), here's the first installment for April! A few people have asked, and I hadn't had a chance to post, but I canceled the appointment w/ Dr. C last week. I am just crazy busy at work and I wanted to wait until after my appointment with Dr. Levine this Fri. I touched base w/ Dr. Levine's office yesterday and we're all set for my appointment this Fri. I am really hoping I don't have to do another EMG though. For those who haven't heard, we created a team for this Sat.'s MDA Ride & Stride. All of the donations raised by our team are going to be directed towards ALS research and care. I don't have the links available right now, but I'll try and post them later today if anyone wants to join the walk or make a donation (and we're having a picnic after the walk). I am a bit worried about the walk bcz I don't think there's any way I'm going to be able to walk the full 5k and I refuse to go in a wheelchair. Bob checked w/ the MDA yesterday and they will be giving rides back via van if needed and they are providing wheelchairs. Bob thinks I should finish via wheelchair and he'll push me, but I refuse to get in a wheelchair . . . I don't know why, but I think once I'm in one once that it's like giving up. I know it's a reality I'll have to face eventually, but I'm not there yet. So, instead I'll just sneak a ride back w/ the van :-) More updates to come later this week after my appointment and the walk.

This Weeks Discoveries

2008-03-17T06:16:00.002-07:00

This week I discovered that . . . I like water aerobics. I decided to try water aerobics because 1. It's in the water :-) 2. It's supposed to be easier on the body. I went three times last week and really enjoyed it. I'm much older than the other participants so I feel kind of out of place, but since it's the one thing I have found that doesn't hurt afterwards, I'm sticking with it. I also discovered that if I stretch in the morning that my body feels less stiff through out the day, so now I stretch each morning. This week I also discovered that I can no longer cross my fingers on my left hand (haven't been able to cross fingers on right hand since Jan.). In addition, when I go up on my toes to stretch my calf muscles I can't stand on just my right foot/toes. I can stand on both feet and toes to stretch and I can stand on just my left foot on my toes to stretch, just not on my right. This week I also had more trouble w/ my fingers and arm while typing; they have been "freezing" quite a bit more . . . it feels like they won't move; it's like a painless, cramp. Not all of the "freezing" has been painless, but most of it has been. This past week was the first in which I think my dr. might be right about ordering the voice activated equipment for the computer. Well, that's all for this week.