Wednesday, January 26, 2011

We are seizure free!!!

We were released today with a "Seizure free" ruling!!! I'm soo excited and relieved. Now we can focus on his GI issues, liver issues and other minor lab abnormalities. We made it home before the snow/ice/rain mix fully hit the area. Learned a cool new meteorological term, compliments of where the Air Force has stationed us...apparently we are having Thundersnows...sounds made up huh?

Not nearly as cool as the Dustnados we had in Oklahoma!

BTW...I wrote this using the free app of Blogbooster. :) BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Tuesday, January 25, 2011

Prayers Please

So, I know this is going to sound crazy, but I'd love for everyone to pray that if Nolen is going to have any more episodes, that he has them today while he is hooked to the monitor. I would love to know 100% either way if these episodes are seizures or not. The easiest way to know is for him to have them while hooked up and the machines to clearly say "This is not a seizure".

I hate the idea of seeing him have them, but if I have to see them, I'd like to see them while he is being tested. I'd also like to only have him there for 24 hours and if he doesn't have one in a 24 hour time frame we will stay for longer.

**This was meant to come out on the 25 of Jan. Not today. In my rush to get out I didn't press the right button. Sorry :)**

Monday, January 24, 2011

A One Computer Family, A little white lie, and a trip to the hospital

So, unfortunately we are down to one laptop. This probably wouldn't be a problem from most families, but Ryan is completing his Masters, trying to catch up on work AND doing taxes while for some reason unbeknownst to me, my boss is selling houses like the economy is good and I am trying to send out contracts, comps and post new listings. In addition to all of this, I am working on a second blog for my volunteer spot with Ryan's squadron. Needless to say, computer time is virtually non-exisitant and this blog has long been forgotten. What I an app for my phone where I can blog....any suggestions????

Now on to my little white lie and the hospital stay.
 Nolen was having frequent seizure like movement and it was really freaking me out in early December late November. As his other issues and general health improved these seizures seemed to slow down (meaning I noticed them less...but it could also have been tied to the fact that I started moving him back into his crib). I lied. Yep, I HATE lieing and it bothers me soo much that I'm actually admitting it here. I never to his doctors about this little glimmer of hope where his "episodes" slowed down. Nope. Sure didn't. Because like his diahrrea and other health issues that absolved for three weeks and have now returned in full force, I suspect that the "episodes" will pick up as well. So, the Neuro team finally have decided to test and see if these episodes are in fact seizures or just infantile movements. This means that I am leaving with Nolen for a 24 hour video EEG tomorrow! And believe me, taking an infant overnight into the hospital requires a lot of baggage!

I'm bummed that I haven't been able to update you guys on what all is occuring here at our home.
Kaelyn has started reading. I'm so excited for her because right now her reading issues aren't actual issues, it's more a lack of confidence. She's grasping the concept, putting phonics into use and sounding out words, now to get her to realize that she CAN do it! She's also counting past 30 without help...well on her way to 100 if she can just remember the teens changes. Adding and subtracting are becoming more automatic for her, although her number recognition beyond 10 is needing some serious attention.

Anna is doing well, refusing to learn her colors, but knows most of her shapes. She's starting to count beyond 7 on her own. Her abilities to dress herself, care for herself, and express herself never cease to amaze me! I have to remind myself that she isn't much over 2 frequently.

I have a lot of fun crafts planned for Valentine's and for the Chinese New Year! I only hope that we will have our second computer back in time for me to share:)

Now, I have to go get everyone ready for a return trip to Labs for more blood tests for Nolen (his Liver and Calcium levels are messed up a bit), therapy and then more packing for tomorrow's trip to CHOPS!

Friday, January 14, 2011

Welcome home!!

We welcomed Ryan home today! So exciting!

This has been a huge relief. We have had a very busy week of various doctors appointments.

Feeding Team-
Want us to continue fortifying his food in hopes of encouraging more weight gain.

Nolen had a Barium Suck Swallow test and it was perfectly normal! YAY. That means that his choking is probably due to fatigue, poor tone and reflux. We will know more after he spends two weeks on his new medication (which according to Ryan tastes AWFUL! We will definitely do our best to make sure to ask for it to be flavored next time considering the LARGE amount he takes each day.). Nolen is still having blood in his stool, so we will be waiting to wean (ughhh) for at least another 4 weeks. I don't want to introduce formula to him (or spend days very uncomfortable to having to stop weaning quickly) until the blood has stopped. During the next 4 weeks, I will have to eliminate soy and dairy.

Concerned about his seizure like movement so we will be going to CHOP for an overnight EEG, possibly over two night frames. We will be waiting to do an additional MRI until he is older unless his development stalls or deteriorates. Encephalitis can become degenerative, and brain damage can be extensive and we won't know until his brain is fully mylienated. Neurology was very hopeful given his development that things looked positive regarding his brain damage. IF he is having seizures we will end up undergoing further test to find out where they are located and how best to treat them (drugs/surgery).

Now, I'm back to snuggling with my husband and I will do my best to try and post our AWESOME developments in our homeschool as well as some yummy recipes!