Monday, September 27, 2010

Sick of being sick!

We have been battling illness around here for months! Noah has been on 6 different antibiotics since the end of July! This is crazy! He has had back to back ear infections and respiratory issues off and on. Of course our last visit to the pedi led us to an ENT consult, which you may have guessed, is leading us to tubes. As of now, Noah is schedule for tubes and another ABR on Oct 22nd. This should be a very simple, easy, outpatient procedure for him and we will know once and for all, the extent of his hearing loss with the results of the ABR. In the middle of all this, Noah's g-j tube came out and we replaced it with a g-tube and he has been doing so well with it that we are not going to schedule for a g-j replacement. He is tolerating his overnight feeds and small boluses during the day. He is still eating great, of course, it's just not enough to sustain him. Weight is a constant issue, even with the feeding tube. BUT the important thing is that he is mastering the skills of chewing, eating, swallowing, texture, etc, etc, it's still volume and pain that holds him back.
Following in his brother's footsteps, Elliot has also been sick. He had a bad case of bronchiolitis that landed him with breathing tx and meds along with several ear infections, which is also leading him to tubes...blech. I am just hoping they will both be healthier when these are done. We are still waiting for a consult with ENT for Elliot before anything is scheduled.
We will be celebrating Zane's 11th birthday tomorrow!! He is so excited! The ole cliche, "Where does the time go?"....I can't believe it! I am so proud of him! He is growing up to be a young man still my baby boy!

Wednesday, September 1, 2010


All summer we have been pumping Noah for school. We have read books, visited the school, shopped for supplies, and talked about it every night before bed, in preparation for the big day. In his IEP, they really wanted him to work up to riding the bus to and from school every day and work up to going 4 days a week from 8-11. We live walking distance from the school, and the ride there and home is less than 2 min, but they felt that it was going to be such an integral part of this whole experience for him to have the separation at home and the independence of doing this on his own. Anxiety is HUGE for Noah, especially with separation in situation that he does not feel 100% safe and in control. Even after weeks and weeks of feeding therapy, he still would never go to the treatment rooms w/o me even though he was totally confidant of what would happen in there. So, I spent weeks agonizing over this, thinking sure I would be taking him and dropping him off for weeks, if not months, until he worked his way up to wanting to ride the bus. My stomach was in knots thinking about how scared he would be and second guessing if it was right to put him through this. I was sure that I would be called daily because he needed to come home because he couldn't be consoled....
Then the big day was upon us...

The actual putting him on the bus part was quite ugly. Brian and I were an absolute wreck after doing it. I felt HORRIBLE...until about 5 min later when we got a call from his teacher saying he was at school safe and sound and was smiling? What?? Noah? Not only did he stay the entire day, but he has stayed every day since then(minus some sick days). I have never had to take him or come pick him up early. He LOVES the bus and school! We can't believe how well the transition has gone! We are so so proud of him!!