Medical Update

I realize I haven't done a medical update on the girls in awhile, so I thought I would take a few minutes to do that now while I have a little bit of down time.

The last I posted, Kennedy and Kellsey both had sleep studies and Kellsey had an MRI of her brain to check for any TBI or anything else that could be going on in there. All 5 kids also had dentist appointments. Not long before that, Kennedy had surgery to have ear tubes put in.

SO both girls' sleep studies came back normal. This was expected for Kennedy. She had her tonsils and adenoids taken out in 2006 for severe sleep apnea, and her post op sleep study showed that her apnea was completely resolved. However, once we moved here, her sleep patterns got all screwy and she started waking up in the middle of the night and playing and then she was exhausted the next day which was hard when she was trying to function at school. SO ENT referred her to the neurologist/sleep doctor who requested another sleep study just to make sure her apnea has not returned. Thankfully it hasn't. Melatonin seems to work well for her to help her sleep and the neurologist says it's fine to keep her on it, so that's our course of action for Kennedy for now.

Now for Kellsey, I was shocked to find out that she had no sleep apnea! She had her tonsils and adenoids removed in February 2011. However, her post op sleep study at Vanderbilt revealed that she has Central AND Obstructive sleep apnea. So why the difference in the two test results?? I asked if the change in altitude could have anything to do with it but her neurologist said that actually the higher altitude here should actually make apnea worse, not better. SO there's really no explanation for it. The good part about these results is that we're not looking at C-Pap or tongue surgery like we were before, BUT we still don't know the reason that she's not sleeping well at all. The one thing that her sleep study DID show is that she slept around 40% of her night, which was no surprise to me. The child never sleeps. Seriously. Unfortunately, Melatonin does not work for her... we've tried.

SO, the next step her neurologist did was to put her on some different medication to try to help her sleep. She put her on Gabapentin which is actually a seizure medication, but I guess is used as a sleep aid as well. She had a scary adverse reaction the first night we gave it to her, so her neuro cut her dose down and so far it's not helping her sleep. I guess we'll see... She also ran some blood work on Kellsey and found that she is VERY anemic, which is strange because she's been on Pediasure through her G-tube since October which is complete nutrition, so she shouldn't be lacking anything. Her neuro agreed and said that she could be having a problem absorbing her nutrients. She then ordered more labs to check for other deficiencies which we had drawn on Monday and don't have the results from yet. She said that some of these things can cause a child not to sleep well, so hopefully once we get her on an iron supplement and fix anything else she's lacking, she will sleep better.

Speaking of her G-Tube, all is going well there... in fact, maybe a little TOO well! She has gained 10 pounds since October now! She officially outweighs Keeghan and is about 3 pounds from outweighing Kennedy! LOL I spoke to her pediatrician on Friday and he agreed that we need to cut back on her pediasure intake just a bit. Right now she's gaining about a pound a week, and he said he wants her gaining about 5 pounds a YEAR. That's quite a difference! The good news with that is that he gave me permission to take her off the night time feedings which means no more pump beeping every 20 minutes all night long because she's tangled herself in it. This means a little more sleep for mama! ;o) I am SO SO glad that we did the G-tube! Best thing we ever did for her!

Kellsey's MRI came back mostly normal. She has no signs of traumatic brain injury or stroke, which is great. However, there were signs of her brain lacking Myelin, which, interestingly enough, can cause speech impairment. Her neurologist wasn't TOO overly concerned about this but did say we'd want to watch it to make sure it didn't get worse in the future.

Both girls went back to ENT on Tuesday and got an "all clear" on their ears. Their tubes are still in place (Kellsey had tubes put in in February when she had her tonsils and adenoids removed) and no fluid to be found. That's great news!! Kellsey needs to go back for another swallow study (still) and since I can't seem to get a hold of anyone in the Springs to get it scheduled, we're just going to do it in Denver. It's just easier.

All the kids' dentist appointments went great! No cavities for all 5 kids! :o) Kameron and Kassidy both go back next month for some work... Kameron is getting sealants on his molars and getting a consult done... he is missing one of his front bottom teeth... the baby tooth was there but there's no adult tooth there. They're not really sure why. Anyway, they need to fit him for a retainer with a fake tooth because now that the baby tooth is gone, the adult teeth next to it will cave in to the hole. Kassidy is getting a consult for braces (fun!) and getting some work done on her back teeth because they are super sensitive and really weak from the antibiotics she had when she was little and had constant ear infections.

On Monday, Kellsey goes in to get hooked up for a 24 hour EEG to test her for seizures. I am glad this is finally being done. We're pretty sure she's having some form of seizures but we're not sure how often or anything, so this will help her neurologist know where to go from here.

AND that is it for now! I will update again when we have results of Kellsey's blood work, swallow study and  her EEG. If you read this far and your head is not spinning, you're my hero! :o)