So far we have had 5 out of 9 sessions with Ramon. We lost one due to Sam getting a cold. Sam was really tough the first 2 sessions but the last 3 sessions he did really really well. Not sure if it has to do with the stem cells or just the extra therapy. Ramon was very delighted to see how quickly Sam progressed. I will post some video soon.
What else...
Sam is entering the terrible twos. He has been tantruming and has been really moody lately. I don't want to cough it up to age as Sam has so many other things that could be going on that are making him miserable. He is teething pretty badly and he is not tolerating his feeds that well. Sam is constantly retching which causes him so much discomfort as well. Its a pretty scary sight to watch. He also lost a pound in the last month which has gotten us very worried. We are going to the GI next week to see if we can get some answers. When I spoke to the doctor last night he entertained the idea of replacing the g-tube with the G-Jtube again... When you have a g-j tube you have to feed continuously throughout the day. The more I thin about it that really isn't such a great idea because Sam is moving so much. He will definitely choke himself to death with that stupid long tube that he will be connected to all day. So I think the g-j is out of the question. We will see... Please pray for some weight gain and good digestion. We truly are so grateful for everyone's thoughts nd prayers. BELIEVE me they do work! Thanks so much :)
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4 comments:
hey carrie....so sorry to hear about sam's digestion problems...gracie had(has) it really bad too. it did get better with age however we could never get any answers from gi...we went to duke gi and unc gi...supposed to be some of the best! after lots of research on our end we found something(you may have already heard of it) called "dumping". the "dumping" is like rapid gastric emptying, it happens when the lower end of the small intestine (jejunum) fills too quickly with undigested food from the stomach. well come to find out gracie had this due to the whole nissen and g-tube...it's not very common we were told...but it was horrible she would just wretch and wretch and then just fall asleep she was so weak and tired. when the sugars don't digest properly it causes the system to act like diabetic shock (they thought she had diabetes at first but all tests were neg). ended up being this dumping and the only thing to help really is we add cornstarch to her pediasure when given by g-tube and this helps thicken the food in the belly and slows it's digestion. the other option was what you mentioned where she was always hooked up to the cont. feed and she was too active for that and would pull it out all the time. if you do a search for dumping syndrome you will find quite a bit of info on it. hope you find out something soon....hugs!
as always sam is in our prayers
and thoughts along with you
and scott!!!
much love
aunt maddy
hi carrie, i havent written before but am always thinking about sam and asking jordan and dana for updates. he, you and scott are in our prayers daily. he is so very beautiful and i know with everything you go through, you are thankful for each sunny day spent with your little boy. with much love, shelly schachter
Poor guy, I hope things get better for him and soon.
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