Catch Up

Well I've lagged behind a bit but oh well! The EEG results came back fine! Praise God and thank you for your prayers :)
Robbie has now had 2 physical therapy appointments. Between the 2 he improved :) She gives us a few specific exercises to work on during the week then builds on it the next week. He goes once a week.

His therapist, Kris, is of the opinion that he will come along well with the therapy and that they won't find anything wrong in the MRI or other tests. She does believe that he has sensory feeding issues though. This means that food textures, tastes and smells cause him to gag and / or throw up. This definitely sounds like him. He is scheduled for a swallow test in early January but the speech therapist (with a feeding specialty) wants to evaluate him before then so he is now scheduled to do that in 2 weeks.

We are getting a bit overwhelmed trying to keep up with it all. Robbie's MRI is early Thursday, his regular check up Friday, PT next week, followed by the neurologist follow-up, eye dr follow-up, more PT, feeding evaluation, etc. Oh and the holidays. . . .

On the up side, he is improving in PT and we can get help for his feeding issues. Also, Wednesday is his first birthday!!!!! Yay!!! Much to be thankful for!

Please continue praying, thanks :)

EEG

Well the EEG went pretty good. He had to be "sleep deprived" because they need to see the mind alert, getting sleep and at rest (asleep). When we went in he had to lay on a bed while the technician attached about 15-20 metal wires to his head. They use a paste and a small piece of gauze to attach it. Chet had to hold his body and arms still while I held his head. This of course caused him to scream like crazy. It tore at both of us to see him carrying on that way. He stopped only momentarily when I whistled, he liked that for about a minute then screamed some more. Once she had all of them in place she wrapped gauze around all of it to keep it in place.

Chet laid on the bed with him to keep him calm and from squirming. The light was turned off and she flashed a strobe light at him several different times. After that she needed him to fall asleep. He wasn't. Eventually I left because he tends to do better falling asleep with Chet. Around 30 minutes later it was finished. The tech came and got me and I took a picture :) She removed all the stuff from his head then proceeded to scrub his head with a wet washcloth to get the paste out. He stayed asleep through all of it!

The technician told us that the dr would look at the results today and would call us if there was anything to be concerned about.

Thanks for your prayers :)

Neurologist

Today was Robbie's Neurologist appointment. She threw alot at us. The diagnosis is muscle weakness, and basically she wants to run a bunch of test to make sure there is nothing serious causing it. So we are scheduling an EEG, MRI, Swallow test and extensive blood test (including some genetic testing). Of course it all needs to be done ASAP and that can be difficult. Please be praying we can manage to get them all done and results in within a 6 week time frame, which is when he goes back for the follow up. The Dr said it was encouraging and a good sign that he has recently improved. She also said to get him going with physical therapy ASAP. We are still waiting to hear back on that.

That about sums it up!

Praise God!

Praise God! His bones and hips are fine! No surgery or casting! I'm so very relieved.

The x-rays show no issues at all. He said Robbie is still within the normal range and he believes there is no cause for any real concern. They called it a normal developmental delay that could have been influenced by so much time spent on his back, and not his tummy, due to the acid reflux. They recommended Robbie see a neurologist just to cover all bases. He already had an appointment scheduled for Wednesday so we are set for that. The Dr also said that with some physical therapy Robbie should be caught up in no time at all. The Early Steps Program, that he was recently evaluated for and then accepted into, is in the process of finding a PT that will come to our home. If they cannot find one, because of where we live, then we will have to take him to a clinic in Celebration or at Arnold Palmer.

Please pray that they will be able to quickly locate a Physical Therapist that is willing to come to our home. They say that it is the best way because the babies do better when the parents can be taught what to do using his toys and things around the house.

Thanks for all the prayers so far!