Wednesday, May 25, 2011

Charlie Update--18 mos!

Charlie turned 18 months last week! We have had a momentous month.

First, earlier in the month, we stayed overnight in the hospital for a 24-hour EEG. While we were in the hospital, our SLP (speech language pathologist) visited us and suggested that we do a swallow study to see if Charlie's swallowing function had improved and could possibly begin to take something by mouth. Of course we said yes! I think I was more nervous walking down to that radiology lab than I have been before any of the surgeries. I didn't want to get my hopes up too much. Well...I should preface by saying that we have been working very hard at home on keeping Charlie's skills up. Even though he can't eat by mouth, we give him a spoon, cup, and bowl and teach him how to use them. His school does the same thing. We are very sensitive to the fact that a child who has been non-oral for most of their life has a high chance of developing oral aversions and that the road to eating successfully by mouth can be bumpy, even after they are safe to eat. So...we didn't really know what to expect. Well, our efforts paid off! We sat Charlie in that seat and he knew exactly what to do with the cup and spoon! The good news is that he passed his study on pudding thick consistency purees. He did not pass on any liquids or solids but we were so thrilled to have a starting point! It was a very emotional appointment, with even the radiologist in tears. Charlie was SO excited to eat. So, we went home with permission to start doing a little bit of pudding-thick purees (a couple of ounces a day). We were nervous because we had the added issue of not knowing what kinds of foods he would tolerate since he has been on an elemental diet since he had so many issues with breast milk and he has never had anything other than his formula and breast milk in his entire life. So, we started with peas. All went well for the first week. Charlie loved eating and he would sit at the little toddler table we have and use a spoon. By the end of that week, however, we noticed his breathing was getting froggy and he was starting to cough. By the end of the second week, he was refusing oral foods and his cough was worse. We had another visit with the SLP, his airway wasn't clear and so he was taken back off of anything by mouth. I am bummed about this but I don't want to take any chances with him. His cough and breathing cleared up as soon as he stopped eating orally again. I think he is just not ready. It seems like it always two steps forward, one step back. It's tiring.

On a "step forward" note, though, we had a full developmental assessment done last week. Charlie is at age level or above in EVERY.ASSESSED.AREA. I had suspected this...I feel like his school has done wonders for his development (we've been so lucky with very good providers his whole life) and he has just exploded developmentally lately. He was late to say his first words (16 mos) but once he took off, my goodness, he has just been a chatterbox! This is another area that can be affected by not eating, so we are so relieved! The speech therapist estimated that he is close to 50 words and says that he will soon put two word combinations together. And just following that appointment, I was putting him to bed and told him I loved him and he said "love you." I was a little blown away and, as if he knew I wasn't sure if I heard correctly, he then signed it, repeated it verbally and then giggled when I started loudly cheering for him. I love that little boy.

The area of development I think I am most astonished by is his walking. Because he is on continuous feeds, he carries around a 2.5 lb backpack. He has been hauling this thing since he started crawling (before that, we carried it for him). Well, he is all of 18 lbs and carrying this little backpack around constantly. And it hasn't slowed him down in the least. It just goes to show--where there is a will, there is a way. I am learning every day not to ever think my children can't do something...they remind me all the time of all the things they CAN do.

Just for stats, at 18 mos Charlie is:

18 lbs
29 inches
Wearing a size 3 diaper
Wearing 6-12 mo clothes
Has the tiniest little miniature feet ever
Is still not sleeping through the night, or on his own. :-)

Threads and Stitches

Since getting my new sewing machine, I've moved on from only making Charlie's pajamas tube accessible and have been teaching myself to sew! I've been having so much fun! Although I don't have any little girls, I've found that sewing girl stuff is so much more fun than boy stuff. So, I've been making a lot of little dresses but have recently done a pair of pajama pants for Jack (and I hope to make him several pairs). My biggest passion though is in making tube-accessible clothing. So, I've been working on making little dresses that are tube-accessible. Here is a picture of one of my creations:


And another (this one has two access points--at the tummy under the skirt for easy access to a button and in the skirt to run extension tubing out without pulling up the skirt):



One of the by-products of sewing is this: I am an impatient person. I am generally a hurry-through-it, get-it-done kind of girl. This doesn't always serve me well. Sewing is not something you can hurry through and get good results. So, I am finding that sewing is teaching me a much needed lesson in slowing down, taking time to do things right, and enjoying the process as much as the result.