Wednesday, November 30, 2005


Some New Stuff To Post...

I wanted to take a minute to update the blog. Sorry I have not been posting with any frequency. I will try to post more often.
First, Sophia and I both had the flu. The vomiting and diarrhea were obviously caused by illness rather than the food change. However, we had to put the change on hold until she recovered. The short of it is, Sophia lost some weight and had some lingering upper respiratory issues. But, she seems to be over it now. And has been getting a small proportion of the Kindercal in her tube feeds. I believe, we will increase that proportion this week. I will post when we get her switched over completely.
Secondly, Sophia still has her cast. But, she should be getting it off today. She has had it for three weeks. When she had the flu, the combination of weight loss and reduced swelling in her leg caused her first cast to loosen and she eventually wiggled out of it. Apparently, this is not uncommon. In fact, we were told, many infants and toddlers need several casts. Anyway, when they put the second cast on they put a little more angle at the knee and it has remained intact. Sorry I haven't posted any cast pictures before now. The picture on the previous post was just the splint the ER put on.
The big news is related to Sophia's oral feeding. After Sophia recovered from the flu, she showed a renewed vigor for eating purees orally. In a short time, she transitioned from 30 tiny bites a day to 3 jars a day. And she can handle normal size bites. We have also transitioned to some foods with more chunks (i.e. pastas, cereals, etc.). She seems to really enjoy mealtime now. The next oral challenge will, of course, be liquids. We will not likely do a swallow study until the spring of 2006. But, her ability to move food to her throat and swallow has improved greatly.
The only major issue we are dealing with right now is with moving her bowels. I don't know if it is the diet change or something else. But, Sophia has been having some trouble with constipation. We have been giving her extra water through her feeding tube. And we are going to start messing with her laxative dose to help her with what seem to be very painful and difficult bowel movements.
Overall, Sophia is doing really good. We haven't had any cardiac issues at all. And her scar gets better everyday. I will try to post again soon.

Friday, November 11, 2005


It's Been a Little Crazy...

Okay, sorry it's been so long. I have got lots to report.
So we will start with Sunday. Sophia was in her swing on the front porch and extended her foot and caught it on the porch railing below the swing. It obviously hurt, but she was fine after just a couple of minutes and was easily consolable. We checked it out real good and there was no evidence of injury.
Fast forward to a Tuesday, Grandma was holding Sophia and she acted like her foot still hurt. Patty decided to take her to see the pediatrician, just in case. The pediatrician didn't think it was seriously injured but ordered an x-ray, again just in case.
You can imagine our surprise when the x-ray showed two small fractures right above her ankle. We couldn't get into the orthopedist until the following morning so we decided to take her to the ER so she could receive treatment right away.
This is where it got weird.
I was at work and I was going to meet Patty at the ER. When I got there Patty and her mother were waiting in a back room. This was because of Sophia's other health issues. By not making her sit in the waiting room it reduces the possibility she might be exposed to some type of contagious agent.
So I arrived and the ER attending wanted to see us. He comes in and explains that he has concerns with the delay in seeking treatment. We, of course, feel awful about this. And I am thinking we somehow compromised Sophia's treatment by not catching the break earlier. It turns out, this was not the issue at all.
He suspected us of abuse or neglect. And explained that they were going to take Sophia down the hall to be examined and have her whole body x-rayed looking for other signs of injuries. Afterwards, a social worker would be down to talk to us and determine the next course of action.
Patty was crushed. She works so hard taking care of Sophia and both us would do anything to do whatever was required of us when it comes to Sophia's care and happiness.
By this time at least a couple of hours have passed and Sophia's injury had not yet been treated.
Finally, they brought her back to us. And then they called someone to treat Sophia.
Shortly afterwards the social worker showed up. We explained all the details of the previous couple of days. Which, by the way, included seeing three doctors and a licensed physical therapist none of which suggested she may need treatment for the injury. We explained that she had been in her pediatrician's office the day before, and she showed no indication of a serious injury during the examination. It turns out, this is the detail that convinced the ER attending that we did not need to be reported to state social services.
Sophia got a splint and an appointment to go to the fracture clinic for a cast. She got her cast yesterday. It goes all the way up her thigh. I guess so she can't get out of it. It is pretty pitiful. But, she doesn't seem to mind at all. She has to wear it for three weeks.
On top of all this, Sophia has started teething. I won't go into this much now as she has not cut any teeth yet.
We also saw her pediatric specialist last week and we devised a schedule to start her on Kindercal/pediasure. Since she is now a year old, she needs this type of nutrition as opposed to formula. So I did some research, and we settled on Kindercal TF. Kindercal TF is specifically formulated for tube fed babies. I could only get it by the case. I ordered a case and we just got it. We started her on the transition schedule yesterday.
Since then, Sophia has started vomiting and has diarrhea. We think this is because of the food switch, but she may also have a stomach bug. We started her on Pedialite last night so She wouldn't get dehydrated. We called the pediatrician this morning and he said to transition her back to formula and we would try to figure out the next course of action from there. At this point, she is still well hydrated but still has diarrhea. If it continues we have to go back to the ER for treatment.
As far as transitioning her to the Kindercal. We are on hold until we get beyond the current issues.
Stay posted...I will try to update as things change.

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