Feeding Center Evaluation

Today we went to Arnold Palmer to have Robbie evaluated to see if he is eligible for their intensive feeding clinic.  The evaluation was done by an OT with a Dr, Social Worker, and Nutritionist present and asking questions. When they were done feeding him and gathering data they went to another room to confer then came back with their findings and recommendations. Yay for quick responses! We will get the written report and official findings some time next week. It took about 2 ½ hours over all.

He is a great candidate for the program!  (*Cheering!)  They gave us 2 options. First, we could enter into the program at this point and they believe that by the end of four weeks he would be eating pureed table food.  Second, we could attempt to get him to that point at home then go back and have them get him from table puree to table solids. We are choosing the 2^nd option.  They said we may fail miserably and if we do that’s ok we can just bring him in, or he may do great and even progress to solids on his own and not need to go in at all (wouldn’t that be wonderful?!).  

So that is where we are.  Apparently the first step is from baby food purees to table food purees. We are also to work on getting him to chew non food objects and refrain from giving him chunks in his purees that he can simply swallow (a bad habit we have been unintentionally reinforcing).  At the same time we can be encouraging him to chew things like veggie straws.  All this is to be accomplished by using positive reinforcement.

We were very relieved that he is cognitively ready for the program and they think he will make really good progress.  I was kinda hoping for more of a miracle, like “yes, we can get your son from baby purees to 50 solid foods within four weeks!”   Oh well. I will be ecstatic if he has 1-3 table foods he will eat by the end of the year.  Your continued prayers are deeply appreciated!

Second Opinion

Today we saw a different Developmental Pediatrician for a 2^nd opinion. I’m glad we have.  Our first experience brought nothing but frustration and was not helpful at all but this one was quite different.  The first place we could not see the Dr (even after a 5 month wait); here we saw the Dr and his assistant.  The first place said mind and body are separate so we will not talk about or concern ourselves with things physically wrong (go to a diff Dr for that); here he was fully examined and the Dr wants to dig farther to see if we can find a root cause for his hypotonia and delay.  The first place slapped a label on him, practically as soon as we got our foot in the door and then based everything else on that and mostly talked at us. This Dr is trying to collect as much info as possible, from us and Robbie’s other Drs, before making any sort of diagnosis. Which is very appreciated.  He did say he could see why someone may say that Robbie is autistic but doesn't see it enough to base it on his first meeting and no further info. 

So where we stand now is:

1. We will still go to the follow-up of the evaluation done at the other place to see their findings.
2. He will be having another ekg (the Dr said things can change since the last one)
3. Possible further genetic testing depending on what was done at the other place.
4. Follow-up with this Dr after we fill out questionnaires and he collects the medical histories from other Drs.
5. Need to look into schools because he needs more socialization.

All in all we liked this Dr better, certainly not due to facilities but due to his thoroughness and desire to get a comprehensive look.  Lots more questions and appointments to go through. We are still hopeful that if we continue our course of working hard on therapy that he will one day lead a typical life.

Endoscopy Follow Up

Today we went in for the follow up to last weeks endoscopy. Everything is normal and in great shape.  This means his eating problem is not caused by any sort of allergy or other physical problem in the upper GI.  So it is probably due to the hypotonia, global delay, and sensory integration problems.  They got us on the wait list for the evaluation at Arnold Palmer’s feeding intensive program. We are blessed by having a top notch Dr who helped in the founding of the program so we got on the list a bit faster.  What happens now is that we wait for a phone call to schedule the evaluation. There are 5 people ahead of us on that list.  The evaluation is extensive and if they decide he is eligible we will then be put on a wait list for the program (even longer).  The program is 3 – 4 weeks of intensive therapy at Arnold Palmer. We would be expected to have Robbie and one of us there Monday – Friday 3 meals a day, some snacks, and some training.  The Dr warned us it is very intense and expensive (pray about insurance covering part, at least).  They only want people who will be serious about it and kids who are good candidates. So please be praying that we will be able to get in.  His lack of eating real foods is the hardest thing we deal with with him and it’s the main thing that keeps us from being able to really interact and live as a normal family together.  All the other problems are easy in comparison.  We will keep you updated!