Today, the "colostomy expert" met with Erik and Dawn early before we arrived. Even the "expert" had a difficult time with the colostomy care because of the positioning of the colostomy (right next to the belly button that hasn't fallen off yet) and also because of the prolapse of the colon into the bag. The surgeon re-evaluated Analise and recommended surgery for Thursday, or possibly Friday to join the two ends of the colon and get rid of the colostomy!!! That is good news on one hand, because when Analise is discharged, Erik and Dawn won't have to worry about the colostomy, but on the other hand, it means Analise will have surgery sooner than anticipated, and she will be back to the IV's, tubes, oxygen, etc. Erik and Dawn still need some questions answered about the surgery, but for now, that is the plan.
While at lunch, Erik received a call on his cell phone from Dr. Tiller (you all remember him by now, right??...the smartest man in the world!!). He called to obtain authorization from Erik and Dawn to photograph Analise and use the pictures for research and to teach medical students about Amyoplasia and Arthrogryposis, because these conditions are so rare. Interestingly, Erik had just decided yesterday that he would take daily photos of Analise so that the pictures would be available for doctors to help them learn about the best treatment for this rare condition, and to try to find as many answers as possible to all the unanswered questions. In fact, we had already started to chronicle Analise´s journey and had changed our post titles beginning yesterday to Day 7, Day 8... Hopefully this relationship that is developing with Dr. Tiller will allow Analise to obtain the best possible care and for Erik and Dawn to obtain answers to all the questions they have about her condition.
Does all of this sound like coincidence...we don´t think so, more like an answer to prayers!! Erik and Dawn gladly gave their consent to Dr. Tiller, and we believe the doctor will start taking pictures tomorrow.
Does all of this sound like coincidence...we don´t think so, more like an answer to prayers!! Erik and Dawn gladly gave their consent to Dr. Tiller, and we believe the doctor will start taking pictures tomorrow.
Dr. Tiller explained again that they really don't know what causes the Amyoplasia and the Arthrogryposis, since there isn't a genetic cause with Analise, but stated that possibly it could have been a vascular type of problem with the circulation in the spine, causing the problems with the development of the arms, legs, and the colon.
So many questions, and so few answers!!!
Analise is quickly becoming very popular!! Today, a medical student who works with the team of doctors taking care of Analise also came by and asked if he could have Analise be the subject in a case study that he would present to the other medical students. Erik and Dawn again gave their consent.
The orthopedic surgeon has still not evaluated Analise, but we are praying that with the extended stay due to the pending surgery, the orthopedic evaluation will happen before Analise is discharged. And who knows, maybe Erik and Dawn's new friend ;-) Dr. Tiller will make it happen!!
The occupational therapist saw Analise today and worked on the range of motion of the arms and legs. She said that Analise has great range of motion, but Analise does not like the exercises very much. :-(
The occupational therapist saw Analise today and worked on the range of motion of the arms and legs. She said that Analise has great range of motion, but Analise does not like the exercises very much. :-(
Grandpa Richard was finally able to hold and feed Analise, and I was able to visit her. I chose not to hold Analise just in case I was coming down with a cold. I couldn't tell if I was a little bit congested from a cold suddenly coming on, or if I was just congested from tearing up once in a while, and I didn't want to take any chances. I can't wait to be able to hold our Sweet Analise!!
The day went by so fast, and before we knew it, it was dinner time. Because Dawn loved the meal they had a couple of nights ago at Fred's 62 and Grandpa Richard had been dying to go there too, we decided to have dinner there. That was a great way for us to end our day, but Erik and Dawn went back to the hospital to feed Analise one more time before heading back to the Ronald McDonald House.
Here is a video of our Sweet Analise, with Erik and Dawn trying to burp her. She's a good sleeper!! I finally figured out how to turn the video, thank God for Google!!!
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| Day 8-8/15/11 Our Sweet Analise |
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| Abuelita, Grandpa Richard, Mommy, and Analise |
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| Daddy and Grandpa Richard feeding Analise |
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| Another great meal at Fred's 62, Grandpa Rich, Abuelita, Mommy, and Daddy |
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