Tuesday, Bryce and I made another trip down to Tucson to meet with Marsha Dunn Klein, OTR/L and Ellen Duperret, RD. This was our third visit and the first one since beginning to feed Bryce real food through the tube. It had been 6 weeks since our last visit. The first month we focused on getting Bryce off of his night feedings. That went well, so this past 6 weeks we have gradually transitioned his evening meal from formula to "real food" blended together and given through his g-tube.
Bryce with Marsha. A special bond has already formed between these two wonderful people.
Some pretty amazing things have begun to happen in just 6 short weeks of eating a bit of real food. First of all within a 6 week period Bryce gained 1 lb. 8 oz! He is finally, once again, back on the growth chart. Barely...but he is there! He hasn't been there since he was two years old! We were all very excited about that!
Bryce enjoying his dinner of chicken, peas, squash, coconut oil, and a bit of water.
Some of the other things I and others who work with Bryce have noticed since making changes to his diet include:
1. He seems to be more alert, aware, and involved in what is going on around him. One of his physical therapists today described it as him being more "present" in the world around him.
2. He has had the healthiest November that he has had since becoming sick in July 2008. I'm a little nervous to say that with a few days of November left, but so far, considering this is a month which I have come to fear and dread, he has done amazingly well. The true test will be to see how January/February go.
3. He gags less, has less reflux issues, and has good, regular bowel movements. He is also willing and wanting to taste more and more foods by mouth. This first started when I began giving him green smoothies, but over the past month, we have all seen an even bigger improvement in this area.
4. His sleep has improved. Less waking up during the night!
5. Has more energy. He is trying to roll over or scoot around more often and with more purpose in the movements i.e. to get his feet to his sister so that he can kick her (seriously, he does this intentionally...typical big brother!) or to knock over a stack of blocks that someone has built just out of his reach.
6. Starting to copy more sounds that others make. The staff at Ryan House last week really noticed this. Liz, one of the nurses there, kept commenting on how much better Bryce seems to be doing now than he was during our past visits.
7. He just seems to look and act better overall.
These are the changes that I can think off right off hand. It's interesting because the people who have commented about these changes say things like, "I can't pinpoint exactly what is different about him, but he just seems better, or more with it and capable than he has been in the past", and then give some example.
Is all of this due to him getting some real nutrition into his body as opposed to the canned formula he has had exclusively for 3 years now? I don't know for sure. But what I do know is that I have been led by the spirit to make these changes to Bryce's diet and it certainly appears to be the right choice for him at this time!
Bryce loves being involved in his own meals. He often wants to help me push his food into his belly. The only trouble with that is that he tends to want to push it much faster than it should go. We have to take it slow or he has trouble keeping it down. As of now, it takes about 30-40 minutes to get one meal of about 240 calories into him. We currently feed (or give him water) 8 times throughout the day. It's a lot of work to prep, feed, and clean everything, but that boy is definitely worth it!
Next step: Starting the day with a Real food breakfast! Wish us luck and please keep Bryce in your prayers that these changes may continue to be for his good and that we may continue to be led to know what is best for our son!