As was said before, today started out pretty rough. Coop woke Jared up at 5 am with a scream that took a long time to stop. They tried every medication but Ativan and both the nurse and Jared tried the bum pat without benefit. The rest of the day he has flucuated with mostly agitation and some times of being content. His food has been digesting fine since we started the new formula and he shouldn't be refluxing since the feeding tube goes into his intestines. The team came in this morning concerned that he is having more periods of fussiness despite the fact that they increased both the neurontin and tranxene in the last few days and his bowel seem to be working fine again. One thought is that the Miralax may be causing stomach cramps and increased gas- which we have been noticing. So, tomorrow we will change the Miralax to a more mild laxative. Also, to cover all the bases, Charlie was sent down to radiology to get a brain CT to make sure his shunt is working properly because the increased pressure in his head could explain the fussiness. (Results came back as normal brain CT :)) The word from GI is that we should be recieving the venting g-tube tomorrow. I am told that it was re-ordered on Monday.
Amanda Butterfield, Chris-the cameraman, Rob and Coop
Anni, Megie and Stephanie- Our supporting fan club
REHAB UPDATE:
Neale noticed yesterday that Charlie had started sucking a little so we tried a binky again. He sucked on it a little but not as much as when nothing was in his mouth.
Neale found that patting his mouth has the same effect as patting his bum. When agitated he just melts and relaxes. I guess there are a lot of nerve endings around the mouth as well.
Due to the increased sucking yesterday, Courtney, a speech therapist, said that may be a sign that he is interested if food. So today was pudding day for Coop.
She put pudding on her finger and then pushed against his gums. He liked the gum pressure and did swallow some. The swallows were delayed and intermittent but it is a good sign that he didn't hate a flavor in his mouth after all of this time.
15 comments:
He is looking so good!!! I can't believe how big he looks!! This seems to me like a good day (besides the fussiness). I hope they figure out the fussiness fast!!! Love you all!
He looks so beautiful with his eyes open so big and bright! I loved the news segment- you guys did great... I am in total awe of the number of hits! Fingers crossed that the venting tube works well :)
You guys were amazing last night! I melt every time I see a picture of Charlie! Thank you so much for sharing your story with me, I know I have grown so much, and I thank you for the amazing people that you are. Charlie really is a gift from heaven!
Who gave him pudding without the consent of his treat aunt? I feel as though my joy has been harshed upon. If I so much as see an oreo anywhere near the area without my permission I may throw a fit. Anyway, I love you guys and I am thrilled with his progress in the sugar department! Love you Jack Jack
HOORAY. As a mom who knows what it is like to have a child that did not take ANY food by mouth, that is so exciting. Even just the texture of pudding would have put Kayden over the edge and he would start gagging. Kayden stopped taking a binky at 6 months old because he lost the ability to suck. That is so good that Charlie is still doing that and has that reaction.
Kayden had a few other things that caused him not to eat, like failing kidneys. That is so good that Charlie is doing this stuff and I hope that he continues to do very well in this area. I know that it truly frustrates me. One thing that I was told is not to push too much because then they will not like food. Food should be enjoyable and bring happiness not misery and pain. It is a hard line to follow, but you will learn from the best there at PCMC.
YEAH for a good day and some steps forward.
i love that pudding face. and the eyes the other day look AWESOME!!! you are super ang. hang in.
I love Coop's big Christensen eyes. He is beautiful and a blessing to all who are privileged to be around him. He has touched my heart as he has so many. Rob and Angel - love you.
Yeah!! FOOD!! Hopefully he can have some Bday cake then too. I still think Coke is the answer to the fussiness =)
His eyes look so big and beautiful and I agree, he looks like such a big boy!
Hey there old neighbors! I am a really rotten ex-neighbor and I apologize for that. I didn't realize the extent of Charlie's health complication (they didn't go into details when they did the ward fast months ago, I didn't understand what it was he had and I hadn't heard anything since). So, I apologize profusely for my ignorance and for not being more neighborly and helpful, I didn't realize the severity of his condition until I caught you on the news last night.
I am glad to hear he is showing improvement and I have to say, he looks so much bigger and older in these photos! He sure has grown. I hope you are all able to return home and carry on with your new lives together soon.
I just wanted to let you know that I'm so glad you went on the news and let people know what an amazing miracle Charlie is. His story seems to have touched thousands of lives, and I'm sure that with each hurdle he overcomes he will continue to help each of us recognize some of the small miracles in our own lives.
You are exceptional people, I admire your strength in the face of adversity and I wish you the very best. Our thoughts and prayers are with you!
-Audri Ence
I can't believe how much better he is looking! What an adorable child! I love his big eyes, and I love that they seem so much more focused than in the past. Keep up the good work, Charlie. You have more than quadrupled your fan base. We all love you so much!
Chocolate makes everything better! Add a little Diet Coke and he should be smiling in no time! Love you Charlie!
I think he looks great! He is so cute! And you guys were great last night - way to go. Hang in there Charlie -- its getting better all the time, buddy.
What BIG, Beautiful eyes!! And a puddin' face too! I'd ask what could be better, but getting the golden ticket to home just may top something like that! You did a wonderful job with the newscast! Great job!
What a great day (minus the fussiness)! He is looking so big, and long and older! It seems like he had a lot of new "old" things today - food, sucking. His eyes look so good by the way. Oh, I am so proud of this kid.
He is so dang cute. And those beautiful eyes. So nice to see them!
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