Not much to Update about

There isn't really alot to update regarding Keegan. We're basically waiting on more doctor appointments. He's on the cancellation list for genetics for an appointment, otherwise it would be November before he could get in! We go to see the neurologist again next month and hopefully he'll have some insight.

Keeg now has a constant low pain headache. It never goes away. On a scale of 1-10, it never gets any better then a 4. He's also still feeling weak and exhausted, but isn't sleeping as much as he was.

On the Asperger side of things, Keeg is having a hard time with his emotions. I'm sure his age has a factor in this, but having Aspergers makes it that much more difficult. When you only understand about half of what goes on in a day, things can get pretty frustrating.

Then, we're still learning how to acclimate to his needs. For example, we're learning that telling him a one step direction works great IF he repeats it back to you before taking off to do perform the task. Also, multiple steps are fine, if written down! Even better if he writes it down himself. We're blessed that we have such a great audiologist who took the time to explain to us what could help him.

Keegan's knowledge of the Bible is still increasing. As a result, I've gotten kind of lazy. When writing my own blog, I'll ask him a question instead of looking it up myself. I'll ask him who wrote a book in the Bible, or where to find a certain scripture I'm looking for. He'll even tell me where to look for those teeny tiny books in the Bible I can never find, like Habakkuk (thank goodness for spell check).

Overall, we're taking it one day at a time. Today is a pretty good day. We're relying on God for Keeg to finally get a diagnosis this year. It's been a 10 year battle, but I feel that we are finally close to getting some answers for Keeg. Accurate diagnosis means that we'll hopefully be better able to treat him! So, keep praying!!

Remember, God is good.......ALL THE TIME.

Update

Keeg's hematologist has determined that his spleen is enlarged and his labs are "abnormal". He has referred him to a rheumatologist and mentioned Marfans.

Keeg's immunologist is referring him to a geneticist.

Basically both doctors have said they see lots of issues, but cant' figure out a cause. Right now we're waiting.

Keeg went and got fluids through an IV yesterday as well as phenergan to help with his vomiting. Hopefully it was a virus, and not another "symptom". He's feeling a bit better today, and is able to eat with nausea medication. He's very weak and tired.

The ENT is fabulous. He did a camera probe of some sort that showed that Keeg has severe acid burns in his throat. He said this is due to severe acid reflux, and was shocked that Keeg wasn't in severe pain. I'm guessing the reason is due to his sensory issues. The ENT said there is a possibility of cilia mobility issues, but does not want to do a biopsy at this point due to Keeg's health. He said that since we're not battling lung infections, we can skip the biopsy at this point. He also thinks a geneticist is a great idea.

I'll update more as I learn more.