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!
Thursday, March 31, 2011
Tuesday, March 29, 2011
Services
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
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
As soon as arrangements are made, we'll post to the blog and her Facebook account.
Julie
Thursday, March 3, 2011
Our Vida Loca
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
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
Thursday, February 17, 2011
Quick Update
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!
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!
Thursday, December 30, 2010
Good-bye to Cocoa
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.
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.
Wednesday, December 15, 2010
Joshua can't catch a break
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.
The little guy is a real trooper and remains in good spirits.
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