Tuesday, May 23, 2006

8 Months and 7 lbs!!

Who would have thought a year ago that we'd be at this place today! Noah is 8 months old and he has made it over the 7lb mark! He is 7lbs 1oz and 21 inches. He has a cold...again. He is just so susceptible to respiratory viruses and it is difficult to keep him healthy. But at least he is able to fight them off before they turn into anything more serious. When he is sick, the nights are rough but when he is healthy, thankfully he sleeps 12 hrs without waking.

Therapies are going well and we are seeing progress now that he's been out of hospital for a good long stretch. His head control has greatly improved and he is still working on trying to roll over. He's also working on his computer skills with daddy! Occupational therapy has started in our home as well. Speech therapy won't begin until after Noah's palate repair. Next week we will see Dr Mcpherson at the orthopedic clinic to fit Noah for a cozy seat (a special chair to help Noah practice sitting).

Give thanks to the Lord, for He is good; His love endures forever. Psalm 118:1

Thursday, May 18, 2006

Swallow Study

Noah had his first swallow study yesterday with Dr. Rempel. Unfortunately he did not do well, so no oral feeding for the time being. It was quite fascinating to watch though. I fed him a tiny bit of thickened breastmilk (with barium added) on a spoon. He sat in front of the xray machine and we could watch how he swallowed on the monitor. He enjoyed it, but as we watched him trying to swallow, it was obvious that his swallow is not functional. He was able to manipulate the food with his tongue to the back of his mouth, but it took him about ten to fifteen swallows to get any of the food down his throat. He just kept swallowing and swallowing but the food just pooled at the back of his throat. Then he would take a break to breathe, causing his airway to be unprotected. So the risk of aspiration is very high, plus he would burn waaaaaay too many calories trying to get the food down. It only took a few minutes and we knew he wouldn't be able to feed orally right now. It was disappointing, but I wasn't too suprised. We will wait a few months and then do another swallow study. But likely his wide open palate is a major reason for his swallowing issues, so he may not be able to do any oral feeding until after the palate repair.
Noah's g-tube has also been causing him some pain because of granulation tissue again. Basically when his tube gets aggravated, his body tries to heal his stoma (the hole into his tummy). But because the tube is holding the stoma open, raised red tissue forms around the tube. So this morning we went to see the surgeon who applied silver nitrate to burn the excess tissue away. Yes, it sounds painful, and it is. But Noah was a trooper as always and only cried a few minutes. Hopefully the tissue will not grow back or we will have to keep having it burned off.
Despite the disappointing swallow study results, I am glad to know exactly what Noah is capable of right now, and not have to wonder if we should be doing anything different. And I am so thankful for the technology of the g-tube. It truly is Noah's lifeline and his only option right now. No swallow used to mean no life. So despite the grief and aggravation that tube causes us, thank you Lord for the g-tube!

Thursday, May 11, 2006

Audiology Results

We had a very busy week of appointments. Noah had a hearing test done on Monday. Once again he failed the right side. ENT checked out his ear tubes to see if that was the problem, but they are open and working well. Since Noah was sleeping, the audiologist decided to do some diagnostic testing and two hours later, Noah was still sleeping!! So they were able to get alot of the testing done. They confirmed that Noah definately has a right hearing loss of 50 decibals and lower. He can't hear a normal speaking voice or anything lower in that ear. Thankfully, his left ear looks good. So he will have more testing done in a couple of months in the sound booth. He may need a hearing aid in the future. This combined with his very late palate repair puts him at a real disadvantage with speech and language development. Just one more hurdle for Noah to overcome!

He was also assessed at the child development clinic who will continue to follow him every 6 months. The doctor was very impressed with his alertness and social interaction which are good signs and shows that he has alot of potential, despite his huge physical delays. So his development is very uneven but at this point they couldn't really say how well they thought he'd do physically or mentally.

Noah's had a rough week battling a cold, an eye infection and g-tube infection. Poor little guy has been mostly sleeping it off but seems to be on the mend now. His weight is up to 6lbs 13oz. Adding 1 mL of volume each day seems to be working for now.