Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, March 26, 2009

Hodge Podge Post

This post will have a little of everything in it, so bear with me.

First: I think this has been our healthiest winter on record. Not only for Angela, but for me too. Dean rarely gets sick, so I think it's par for the course for him. Anyway, she had what we think was Whooping Cough back in November. By the time we realized what was going on she was already on antibiotics for something else so it would have skewed the test. By her symptoms, it was whooping cough. AND, she'd just had her 12 year booster for it in July, so that's kind of odd. When our school district announced an "epidemic" of chicken pox (it was even on the news!) I got a little worried. Even though she's been vaccinated for it twice, so had several of the kids who developed the pox in her school! She had a sinus infection in February, and other than that she's done really well! I'm knocking on every wood surface near me though, because I've learned that whenever I say stuff like that, things happen the very next day! With her leaving for camp tomorrow I don't want anything to happen. LOL

Secondly: TIA's and headaches.... About a month ago Angela had a TIA. In the average person, if they have a TIA you call and ambulance and hope they're not going to suffer a massive stroke right before your eyes. But Angela isn't your "average" person. She has a long history of TIA's, so when she has one we just make note of it. The last time she had one was 2 years ago, but it took her several weeks to get ALL of her motor skills back. Usually it's only a matter of hours. So, when she had this one, I didn't even notice there was something going on. We arrived at her riding lesson and her instructor was like, "Why is she walking different?" and when I finally studied her I was like "hmmmm...interesting. Haven't seen that for awhile!" We went ahead with the lesson, but it was really tough to get Angela up on the the horse, as she was really weak on her left side. When she got up there she was collapsing to the left. She always does this when she's tired, but that's after riding for an hour, not right when she gets on! They went about 30 feet when Angela said she was tired and wanted to be done for the day. 

So when I got in the car, and called her neurologist's office, the nurse who answered my call was like, "You need to hang up and call 911!!!" and I'm like, "Um....no....she just does this." I'm sure she thought I was nuts! The neurologist on call finally called me back and said to just watch her and if she started another to bring her in. Within a couple of hours Angela was back to 90%. Her motor skills were back to normal, but she was a bit tired. 

Then, a couple weeks ago, she started waking up at night with really bad headaches. Those who know Angela know that she doesn't actually cry tears unless something is REALLY WRONG! I've always joked to school staff that "If you see real tears, call an ambulance!" She just doesn't cry tears unless she's in excruciating pain. So a couple weeks ago she wakes up up at 3:00 in the morning, standing by the said of my bed sobbing, "Mom...my head HURTS!" And she was holding the side of her head. I gave her some tylenol and laid with her till she fall back to sleep. When morning rolled around she still had the headache. Another round of Tylenol and by 9:30 or so she was acting fine so I brought her to school. 

The next night was the same thing, then again a few days later. 2 days ago she had another. Yesterday we had a check-up with the pediatrician, and she was adamant that I get Angela back into the neurologist very soon. She said headaches that come and go during the day are nothing. Headaches that wake you up in the middle of the night are a bad thing. The headaches, combined with the TIA last month are, apparently, quite a cause for concern.

But I refuse to get worked up this time!!!!! Two years ago all the doctors were freaking out, and I was told she was at risk for a massive stroke. When I asked what the warning signs would be, the neurologist looked at me and said, "Ummm, there won't BE any! By the time you see something, it will be too late." which is what launched us into a battery of testing at Mayo, and the whole Make A Wish journey, and here we are 2 years later. She's still walking and talking, even after this last TIA, so I'm just sitting on the fact that nobody has a clue what is happening inside her head and I refuse to worry anymore!!! We are living life, and we'll get to the neurologist next week.

Did I mention we're just living life? Tomorrow Angela leaves for a weekend camp put on by the Easter Seals of Wisconsin. She is SO EXCITED to be going to camp!!!! She has been beside herself all week. Today we got some running around done, and her bag all packed. It's a 4 hour drive to camp (whoo hoo!) and Angela loves road trips so we should have a good time. I wish I had something to do out in that area because I'd just stay out there rather than turning around and driving home, only to do it all again on Sunday! But, I'll survive. I wouldn't normally send her to a camp this far away for just a weekend, but there are extenuating circumstances that make it kind of necessary in order for her to attend summer camp there. (as in, they need to get to know her to know EXACTLY which summer program is best suited for her.) 

And, the last order of business is a question I have a Vagal Nerve Stimulation. Angela's OT has suggested it for her oral motor skills, along with her swallowing difficulties due to achalasia. In Angela's case she has no peristaltic wave. Combine that with the fact she had nissen fundoplication done at 11 months and basically her swallowing is a mess. Most of the time she's able to manage it, but once in awhile she gets into trouble. So, Vagal Nerve Stimulation used to be used to treat epilepsy, but in recent years has been found to be effective in treating swallowing disorders, AND in improving the nerve impulses to the muscles that control peristalsis! So this is something she wants to see if Angela is a candidate for. It means repeating her swallow studies, but for her that's not really a big deal, just one more appointment. I guess we'll see how it pans out.

So that's concludes my update for today. Tomorrow Angela and I will head to the Wisconsin Dells for camp!

4 comments:

Christine said...

Wow-- thos eare some new terms I had never heard before.

Hope camp is a blast!

Terri said...

Leah, I wish I'd been up on reading my blogs - you could have stayed with us. I'm sure Angela will have a great time at camp - can't wait to hear all about it!

JennyH said...

Hope she has a blast at camp. Sounds like you are remaining cool about Angela's head... I remember a couple of years ago how scary it all sounded. Hope all is still fine.

Michelle said...

That sounds scary; TIAs - but I agree - just keep living life! Karly is going to the Easter Seals WI camp in July!! I hope Angela has fun - let me know how it is, this will be Karly's first trip there!