Crazy Couple Weeks

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.