Blended Diet Continues

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!  

Whatever!

Annalise's funny of the day...during OT today, her therapist was trying to get her to button and unbutton a vest.  Annalise said that she wanted to put it on.  Her therapist said that she could if she would then do 4 buttons.  Annalise agreed and they put the vest on.  She then began to play.  The therapist reminded Annalise that  she owed her 4 buttons.  Annalise looked right at her and with the hand and all the attitude in that little 3 year old body she said, "Whatever!"  She then giggled and went on playing.  We could not stop laughing.  Yeah, she's 3 going on 16, the little stinker.  I think the poor therapist finally got 2 buttons out of her today!

Botox and other New Stuff

Friday morning Bryce had his first round of botox shots.  They are used to loosen the spasticity, tightness, and pain in certain muscles.  We have tried other medications, but he can only tolerate a very small dosage of these as they lead to increased breathing trouble.  His Physical medicine doctor has been encouraging us to have Botox done for a while now.  I have been very leery about it...I mean, really, the idea of injecting a toxin into my son really did not sound like a good idea at all.  I did a lot of research and spoke to multiple specialists about the procedure.  I also spoke with many parents who have had this done for their children.  There are definitely some risks involved that we have to be aware of, but after months (almost a year) of prayerful consideration, it seems that the benefits may outweigh the risks at this time so, we decided to give it a try.

One of the worst parts for him was the waiting time before getting called back.  It was really only a few minutes, but Bryce just does not like to sit still...ever!  (Or maybe he is just mad that I still put a bib on him.  I really need to figure out a better, more grown up way of keeping him dry!)

All the supplies

He received 3 shots in each of his upper arms.  He did not cry for the first arm, but did on the second.  I think he was just tired of getting poked!   Poor kid.

After the procedure.  He chose this frog from the basket of stuffed animals.  

We didn't really notice anything different until Sunday.  He actually sat in his chair and was able to reach out for toys and play with them a bit more than usual.  Then later, while he was lying on the floor I noticed that it was much easier for him to raise his arms to reach for things.   At one point, he was just lying there raising his arm up above his head and back down while looking at his arm and smiling.  I still don't notice a real drastic change, but he does seem to have a bit better range of motion and a bit less pain.  It will be interesting to hear what his therapists have to say about it after working with him tomorrow.  

Both kids have also received some new equipment this week.  

Annalise got some new AFO's.  Since her surgery we can actually get her feet into them!  She can still only tolerate them for about 30 minutes at a time, but it is a step in the right direction.  

Bryce got this Hensinger Head Support.  As you can see, he likes it.  If you ask him, he will tell you that he doesn't like it, but he does it with a smile and doesn't complain at all!  He has such poor head control and continually tips his head backward.  With this, he can concentrate on things other than trying so hard to hold his head up.  It can also help with breathing and swallowing...both things Bryce struggles with at times.

Bryce wearing his Hensinger and standing in his stander.  He has had the stander for about a year now.  With the head support he is able to get into a 80+ degree instead of a 60 or 70.  He loves standing!