A bad blogger--catching up

I have been a very bad blogger and there’s a lot to cover. I'm sure I left out stuff too. I still need to post more about the christening and M's 4 month photo shoot.

So here goes....

First and usually top of mind here is HEALTH.

Miranda’s been doing great. She is so strong and it’s amazing how everything just comes easily. Last week she “found” her feet, but kept losing them after she grabbed on. She has excellent head control and has been sitting in the exersaucer already and enjoying that a great deal. She can entertain herself quite well.

The dogs are definitely going to be in trouble though once she gets going. Already she gets a good grip of fur and holds on. She reaches for them with a “here doggie, doggie” look on her face. Otis, with his black and white coat is very stimulating for her as well. I think we've resolved the issue with my Milk supply so breastfeeding is going better this week.

Cailyn’s had a bit of ups and downs lately. She is a strong girl who is definitely growing. She’s gained 5 pounds in 2.5 months, which is good and bad. She was ok with her weight before, 50th percentile and a little extra will help keep her strong. The bad is if she continues to gain this much. She’s 40 pounds now. Go to the grocery store and pick up a 40 pound bag of dog food and tell me how easy that is.

Her eating and her food content has not changed so it leads me to believe that this is a side effect of medicine. She has also been EXTREMELY sleepy lately. She has 3 more days of school and she’s been sleeping through the majority if not all of the day for probably a month and a half.

Then Friday and Saturday she decided not to take a nap at all. Sunday at Miranda’s Christening she was sacked out, hard, no waking her up.

 In March and April Cailyn’s seizures were horrible. She had so many and was just miserable and not herself. May 1 we started giving her Zyrtec for possible seasonal allergies and she’s been aces since. The last tonic seizure I saw was May 3. Six friggin’ ninety-nine bottle of Zyrtec does what hundreds of dollars of seizure meds can’t. Oh, so annoying. But my Girl is doing well. More awake and alert and she’s giggling again. Woo-hoo

In April we surprised my Mom and me, Cailyn, Miranda and Aunt Danielle, hopped a plane to Tampa for a short-fun weekend before my return to work. Well it didn’t go as planned. Cailyn’s seizures were getting progressively worse all week. She was barely waking up to eat and seizing all the time. We ended up in the Emergency Room and getting admitted at All Children’s Hospital in St. Petersburg FL.

So our fun weekend with Grandma and Grandpa ended up in the hospital, with my Mom and Danielle staying with Miranda at the Ronald McDonald House because the little one was not allowed on the ICU floor. Grandma and Grandpa’s house is a good hour away from the hospital. Let me also say, that Cailyn hasn’t been in the hospital for 3 years.

There is little they can do for her seizures anyway so unless she were really sick it’s not usually a big help. I haven’t felt the need for her to be admitted either. We can handle the seizures at home for the most part. But this time was bad. While she was in the hospital, she had 19 seizures in 24 hours, all while hooked up to the EEG. It was all recorded, so we got some good information.

We also met an AWESOME neurologist and got a second opinion, something I’d been thinking about for a while. Dr. Winesett may be getting a visit from us when we go to FL for Christmas. He was intrigued to meet K too. He was very surprised with her genetics diagnosis. He was under the impression that STXBP1 was only the case in kids with an abnormal MRI and Cailyn’s is fine. So now he’s rethinking running the test on some of his patients.

I learned a lot as well. It was like a really good science class, not an arrogant doctor talking AT a neurotic Mom. Right before Cailyn was released from the hospital, he sat with me for 30 minutes. He made some recommendations on the meds changes and was pushing strongly for her to get the VNS-seizure pacemaker. He also pulled up the video on the EEG and showed me that Cailyn’s brain is always seizing, which we knew, subclinical seizures they call them. Her brainwaves are all kind of squiggly and the screen is overrun with black wavy lines, but when she has a tonic seizure, her brainwaves flatten out and look more like a normal brain. How the heck do you process that.

Shush, KK is sleeping.

Let's make like a bird and get the Flock outta here...

All wrapped up with no place to go.

Two days after returning to VA, I had to start work and let me tell you IT SUCKS. Yes I want to spend time with my girls. I need to be here for them and in case K has an emergency or a doctor appointment or for a million other reasons. Then on day 2 back at work, they tell me my job is changing and I’m not going to be able to be a full time teleworker anymore. Those of you who know Cailyn’s whole story know that the only way I’ve been able to work this long is because I’ve been a teleworker and have a great flexibility at my job. I’m still not sure what I’m going to do. We are trying to figure things out, finances etc. but it comes down to we need my income to keep the house and I provide the health insurance. I’m still doing my home visits but that is not going to bring in enough money to replace my salary. UGH Sucky choices.