Cold and flu season is officially in full swing and it's only the beginning! Zane kicked things off with a really nasty respiratory bug that went into his lungs and stuck around for a few weeks. He missed a few days of school and felt pretty rotten, but managed to handle it pretty well. Not sure if Noah picked that up or something new altogether, but it hit him really hard and week or so afterward. We started off with steroids and lots of breathing treatments, but after a week of no progress, he was admitted to the hospital. He was in bad shape and was requiring lots of oxygen, rescue treatments of IV steroids and lots of breathing treatments. He tested negative for flu and RSV so we assumed it was just something viral that got him down. All the boys have had their flu shots, but it has never really kept them from getting it in the past, just reducing the symptoms I presume. He was in the hospital about 5 days and missed a total of 3 weeks of school. His doctors gave him the blessing to return with the understanding that if he got sick again requiring O2 and steroids, they would recommend he be homebound the rest of the winter. We did pull him from gymnastics, but are really hoping he can stay in school.
In terms of feeding and tube issues, we are making some changes. We seems to be forever stuck at the volume issues. He is eating great! He is now self-feeding age appropriate foods but we just can't seem to get anywhere near what his caloric needs are into him orally. We always get more bang for our buck calorie-wise with the purees, but he has come so far! He still can only handle very small, frequent meals and the majority of his nutrition comes from the feeding tube. We have been introducing blenderized tube feeds along with his Compleat formula. As he gets older, I really think it is so important to be giving him real food and get away from all the formula. The feeding clinic in Evansville gave us some great literature about how kids with volume sensitivity have been so much more successful with blender diets. We recently spoke with a great therapist in town that graciously gave me some of her time to offer some great suggestions that I can't wait to get started on. More on that later!
We will be taking Noah to a child psychologist for some of his anxiety issues and potty training. I am soooo looking forward to this appointment. Anxiety has always been a huge issue for Noah. It is the front runner to his potty training issues as well. I could go on for hours about this topic that we have been working on for a year and half now. I won't get too much into it, but there are some serious roadblocks that have nothing to do with his medical issues, and everything to do with his psychological issues. With the the help of his amazing teachers at school, we have tried everything in the book and determined that it's time to get some professional help! On the bright side of this, with all the potty training action going on, Elliot is now officially potty-trained, with the exception of an occasional accident. Noah is his biggest cheer leader and always tell him how he is so "powd of him" Ha! When Elliot starts to to the dance, Noah will say, "Elliot, you have to go potty? Don't wait too long!" Sigh....
Aside from all this, we are all doing great, getting into the holidays and anticipating snow. Santa is the hottest topic in the house after a recent visit over the weekend. I got a picture (promise to post) with all the boys and Santa. You can imagine Zane's enthusiasm there:) I was pleasantly shocked that Noah sat, for the first time ever, on Santa's lap. I think it was a big help that his chatty little brother was on the other knee asking, "Where's your reindeer, where's your elves, why are you wearing gloves, why are you big," and a barrage of other questions at a rate of speed that made it physically impossible for Santa to get a word in edgewise.
One last thing! Leslie (baby Aiden's mommy) and I are collecting new books to be given out at Mott Children's Hospital in Ann Arbor in honor of our CDH boys. If you would be interested in donating a book, please message me for details. These books are so very appreciated by kids in the hospital, and especially so when they are there over the holidays! It truly brightens their entire day!
Thank you for checking in on us!