"The chief handicap of the blind is not the blindness, but the attitude of seeing people towards them." ~Helen Keller
Our lives have been crazy this past week. Amidst the turmoil of our new diagnosis, Justin is out of town on business for 2 nights this week and my work has been crazy busy. Somewhere along the way this past week, I have developed an eye situation. Kendall's Orientation and Mobility teacher said maybe I have sympathy pains for Kendall...and she might be right. I'm not sure if it is stress, lack of sleep, or too much computer, (or a combination of all three!) but my right eye keeps turning in and going blurry. I have an Ophthalmologist appointment in 2 weeks. At first it was just when I look at my computer screen, now it's the phone, or anything. Probably not a good thing when you drive as much as I do during the week! I've had big head-aches too so I thought I was just getting sick, but it's more annoying than painful.
Anyway. Like I said, our lives have been crazy the past few days. Kendall's cough got better, then worse, then better. We did go to our pediatrician to make sure it wasn't in her lungs or ears. Thankfully it wasn't. He said it was an upper respitory infection, probably Mountain Cedar. Allergies? Whatever. I'll take that instead of pneumonia or RSV. He didn't want to put her on any antibiotics or cold medicine because he thought it would interfere with her seizure medicine. Sometimes I think he's a bit kooky, but as long as he can tell me there isn't fluid on her lungs...I'll take it.
We are now officially enrolled in MDCP. We bypassed the wait list by staying the night in Granbury in a nursing home Tuesday night. The nursing home was actually OK. They had us back in the Medicare wing, so it was fairly quiet. Half way through our 8 hour stay, Justin and I took Kendall into their little living area. Nobody was in there, and we watched TV and hung out in the cozy room. Just like home! Oh, except the fact some poor old woman with "sundowners" kept screaming "HELLLLP ME!" At first I was worried, but when I saw the nurse check on her a few times I figured it was probably the norm. Then the "HEEELLLLP ME!" turned into "HEELLP ME I GOTTA SH*T!" Over and over and over again. It did provide comic relief for a while. Then it was just plain annoying. They ended up moving her. When we first got there there were a few kids at a table eating. Most of the people were older, but there were a few younger disabled children too. That was heart wrenching. We have added going to a financial planner to our to-do list so we can make sure Kendall is in a nicer place when we're gone. As Dr. Marks put it, we need to start planning for long term care rather than college. Wow.
So, Kendall has a Medicaid number now, secondary to our insurance. I already ran into some difficulty though on Wednesday when our pediatrician's office said she doesn't file secondary insurance. I'm sure I'll get all that worked out eventually. At least we won't have to pay $130 every 2 weeks for medication, or $35 every time she has a therapy session. I feel like I just got a raise.
As far as the seizures go, they are still there. They are less severe and less frequent, but still there. I will increase Topamax tomorrow. Please keep praying for us.
While Justin is out of town, my sweet Kamden has really taken the role of "Man of the house." He actually sung Kendall to sleep last night. He is so precious. He will be testing for his gold belt on Feb. 24 in Karate. I am very proud of him. He sleeps with me every time Justin goes out of town. Last night it was 2 dogs and 2 kids all snoring. I need a better 6... (I'm sure only my sealy peeps will understand that one!)
I'm sure I have more to fill you in on, but the words are blurring together again. Thanks to everyone for all your sweet Facebook comments, e-mails, and phone calls this week. I really feel blessed to have so many amazing people supporting us. (and now uncle sam!... which by the way I have absolutely NO shame accepting! God knows we've contributed our fair share....and I've always been an outspoken Democrat, surrounded by Republican friends, so that makes it OK too! right? )
1 week ago