Home!

Ok, we're alive. And home.

Thankfully it was only croup. Everything else came back negative. But, like every normal childhood illness with Kendall, she's not the norm. They gave her the Racemic Epi treatment and then watched her closely. We left with a still croupy baby, but crazed from the steroid and treatments. When she was calm she sounded OK so we were allowed to leave! I'm very thankful we didn't get sentenced to a night there. I'm sure the fact that they don't really have any beds didn't hurt.

I don't regret going to the ER at all. I usually think twice about it, fearful we are going to get there and she's going to sound fine and we'll be the parents who cried wolf. Sooner or later I'll get over that. But, of course, the night air did help her on the way in and she did sound better. I whispered in her ear to put on the theatrics for the nurse at the front desk so we could go straight back and avoid the germ-infested waiting room. Kendall then proceeded to lift her head off my shoulder and flash a big toothy grin at the nurse. Not quite what I had in mind.

But, being frequent flyers has its benefits, I suppose! No wait, and a private room, complete with warm blankets and peace and quiet made our sleepover less miserable. Our ER Dr. was great and so was our nurse.

Our orders were to touch base with the diabetic educator first thing today when sugars were off. So I just did that. We're pretty clear on what to do now. And Kendall already looks a thousand times better.

Endocrine stuff is so complicated. Sometimes the numbers just spin around in my head and it takes me a while to figure out the correct action. Sorting through that stuff when you haven't slept in 2 days is even harder. Thankfully our Diabetic Educators are the best!

Thanks for all your prayers...

ER

So we are in the ER because Kendall went from runny nose to respitory distress very quickly. We immediately bypassed a super crowded waiting room and were taken back to a closed room! Kendall was started on steroids and breathing treatments. She's finally asleep but still sounds yucky. Justins sleeping sitting up and I'm in a very uncomfortable chair bored out of my mind. In the room next to us a little girl stuck a peanut up her nose and her mom thinks its the end of the world! We are waiting to find out if we will be admitted or get to go home. Either way since its 3am I guess I won't be running at 7! Oh well. Hopefully sugars don't go crazy and we will survive this. On the bright side, she doesn't have RSV or the flu.

ugh

Kendall is sick again. Super snotty and just plain miserable. She's not running fever, but has not slept at all! Last night she fussed until about 2:30 when we gave Tylenol. Then she woke up in a startle about 5:30 with a very stuffy head.

I thought she was OK, so we went to our Speech Evaluation at Monkey Mouths. (more on that another post) Then on the way home she fell asleep for approximately 20 minutes with her mouth wide open. When we got home she was awake again and really fussy. Lots of suctioning, Tylenol, and 2 breathing treatments later, not much improvement. Right now she is laying red-nosed on the couch just kind of zoning out. Poor child. She needs sleep. And so do we!

Tomorrow I'm running the Cowtown half marathon. I'm excited since it will be my first time to do the Cowtown. I've run other half marathons, but have always wanted to run this one. I'm confident I will be fine physically, but I know I'll be worried about Kendall the whole time. She, of course, will stay home with Daddy. Maybe one of these runs Kendall will be well and able to cheer me on.

I'm so sick of her being sick!!! Ugh!

What a Difference a Year Can Make

Yesterday I was thinking about all the progress Kendall has made over the last year. One year ago we were given the diagnosis of Infantile Spasms. We were told she would be severely disabled. The life expectancy I found out when I asked (something I have learned NEVER to do!) was early childhood. They said Kendall would never be normal. She wouldn't walk. She wouldn't talk. She probably wouldn't be able to communicate much, if at all. We had heard all these things even earlier, but the firm diagnosis of Infantile Spasms made things so much worse.

That was a hard week. I started to blog more regularly. We started more, stronger, seizure medications. Because of that, her personality was swept away. I was filled with fear and uncertainty. I was still working. Still trying to juggle being a full time mom to two kids and a full time worker made me cranky a lot of the time. My mom was receiving bad news about her health and we weren't sure who was going to care for Kendall. I think I even thought there was still hope in finding her a daycare~! The financial burden of all the medical bills pouring in weighed very heavily on me too. It was this week one year ago we finally completed our Nursing Home stay and were able to qualify and bypass the wait list for the Medically Dependant Children's Program (and receive Medicaid secondary to our insurance.)

One year has passed. And while I never could have imagined we'd add Diabetes or a g-button to our list of things to be concerned with, I feel Kendall has made a ton of progress. She's still working on lots of muscle stuff. We receive some sort of therapy once, sometimes twice or three times a day. We have nursing help which has drastically improved my mental state! But socially she is doing amazing. She knows when someone gets to our house. She greets them with a smile. She also knows when we walk away. She knows when its time for bed, and like any almost two year old protests. She smiles and babbles and can entertain herself for short periods of time. She is her own, unique, beautiful, little person. She enjoys swinging, bouncing, and riding in her chair. She loves bathtime. And car rides. She thrives on routine and when you tell her what you're going to do next, she holds you to it! She can work switch toys. And is steadily increasing her ability to make choices.

Thankfully we found the Ketogenic diet in this past year and were able to keep those darn seizures at bay. We have too many Dr.'s appointments and therapy appointments, but it helps me also to know there is a team of people supporting us through her progress. So when I look back on this year, Kendall has made definite strides. Her vision is improving by the minute. And I just know one day she will sit up on her own, and maybe even take some steps. I've always heard that kids with Cerebral Palsy do things in their own time. And now I believe it! Kendall has her own schedule of events. I can't wait to see where we are a year from now.

Gaining Strength

Kendall is feeling much better. She's getting her strength and personality back... Check out the video.

We had a great weekend. Justin made Kendall blueberry (Keto-cal of course) pancakes on Saturday morning...and she loved them. She's been eating a lot of fruit and cream, and whatever cream she doesn't eat, I've been pushing through her button. This gives her an opportunity to have more flavorful meals.

Our OT made some hands splints for Kendall to wear. Her purple neoprene ones are really difficult to get on, and since she doesn't really fist with her thumb inside them they were pretty pointless. She isn't bothered at all by these, and they place her wrist in a functional position. Hopefully she will begin to bear weight on her hands again soon. Right now, they are very sensitive. She doesn't have any aversions to different textures, just putting weight on them.

So that's really all that's been going on here lately. I haven't had any pressing information to share....and I think of that as a GOOD thing :)