Keppra

Well, apparently, they had to cancel the meeting with all the Dr.'s to discuss Kendall's case. They have rescheduled it for next Wednesday. Dr. Malik says it is a top priority for him....hmh? Whatever....he decided to go ahead and start adding Keppra to the medication list. So we will slowly be adding that, then when that dosage is up we will start to wean her off Topamax. I guess we are now beginning the phase where you try every single medication until you find the right one? Let's pray Keppra is the one!

Here's a few pictures of Kendall we took this morning! Nonna had the cushion off on the couch and Kendall was kneeling. She did a great job, as you can see:


I love this profile picture!

And, this is a happy Kendall taken last night after eating a big meal! Kam thinks she looks like a Sumo wrestler! In her defense, those pj's are really thick!!! It was cold last night!

Hope you all are having a great week! Please keep praying for our baby girl.

We Meet at Last!

"I'll show you my MRI...if you show me yours."
"So, how's that Topamax working out for you today?"
"What's your therapy schedule look like this week?"

Oh...I could go on and on!!!



Last night, Justin, Kamden, Kendall and I all went over to visit with Jennifer, Mike, Emily and Jude! Baby Jude also had a stroke in utero and suffers from nasty seizures as well. We discovered that we don't live far from each other, and we actually know some of the same people...small world! But we have been talking since early on in this journey. They are a beautiful family! Jennifer was so incredibly sweet to have us over for dinner. Justin and I have commented before how the "Special Needs" parents always seem to be such a close knit group! Now, we totally understand. It is hard to find people who truly understand what you are going through. We feel so blessed to have gotten to know them! We are definitely looking forward to watching these babies grow up and prove all the Dr.'s and statistics wrong! Jennifer made the joke that Jude and Kendall are going to be like "Benny and Joon" in that movie... that made me laugh. Kamden developed a crush on Emily within the first 5 minutes...unfortunately for him, I don't think she's too into younger men! Anyway, we really enjoyed ourselves!

This morning Kendall had Orientation and Mobility at 8:30, then we rushed out for her to get 8 viles of blood drawn. We are now waiting on Speech therapy at 11:30, then after that we have to go get her ultrasound done on her leg at 2:30. So...another very busy day for Miss Kendall. Seizures were the worst they have ever been this morning...I lost count after 28 spasms. ugh. Hope you all have a great week!

A Call from the Neurologist

Well, to start off with, Kendall's seizures have been particularly nasty this weekend. They are way more frequent than they have been. That said, we are definitely wanting to try something new. The Neurologist was waiting for the Hematologist appointment to decide the next step. Late Friday afternoon, he called to give me his plan...sort of. He said if I "can be patient" this Wednesday he is meeting with his team, including the Neurosurgeons to present Kendall's case. He said he has reviewed it in detail and thinks she may be a candidate to have that part of her brain removed. I know there is a term for it, I've read it on other's blogs, etc.. like recession or hemispherectomy or something like that. Anyway, he's concerned the Factor V could cause another stroke, so he's going to talk with his team to determine the plan. I'm a little nervous about this. Shouldn't they try some other medicine before deciding to cut into her?? I'm sure all those questions will soon be answered if I can just "be patient."

Despite the seizures, Kendall has been very smiley this weekend and in great spirits. She enjoyed a visit from her Aunt Kristin on Saturday:

And we were finally able to get a family picture:

Kendall pants loves being outside. Now that the weather is starting to get warmer, I'm excited to enjoy the outside with her. ECI is ordering her a bath chair that they say we can also put on the top step of our pool! I'm sure that sounds pretty simple, but to us it's huge! I'm finally starting to feel like we can do some "normal" things with her. Even being able to push her around in the jogger, or her entertaining herself somewhat in her bouncy chair is a huge accomplishment. For us, its a big deal to not have to hold her every time she's awake! This morning she actually found her pacifier in her lap and put it in her mouth! It took her a while...but she did it! Of course, I was cheering, then she smiled and dropped it again! Oh well, baby steps!

Happy Friday!

Ok...so I got out last night! Believe it or not! I went to spend a couple hours at a girlfriend's house to see pictures from her honeymoon and escape from my Kendall/work world for a bit! I had a great time catching up with them. I posted this picture because I know they read my blog, and I also thought it was HILARIOUS that Becky's dog jumped on Sarah during the picture and his big Boxer paw is in the picture. Sarah, Becky, Jill, I love you guys bunches, thanks for being great friends. Kendall slept pretty well last night. She only woke up twice to nurse. I also didn't see or hear any seizures throughout the nigh. Hopefully the increase in Topamax and adding the B6 is helping. Here's what she looked like before I left last night. Don't you want to eat her up?

And finally...I told Jennifer I would post a picture of the Special Tomato chair ECI brought us. It came with a base, but our PT at Cook's told us it can do a lot of thing, like fit in a big stroller. It actually fits perfect into my IronMan jogger. Guys, this is life-changing for me! Now Kendall can go on long runs with me whenever I want. No baby-sitter needed! Guess now I don't have a good excuse not to run long distances anymore. Well, maybe the fact she weighs almost 20 pounds is a good excuse?!?!

Anyway, hope everyone has a great weekend! And to all of my dear friends through this Blogging world...may we all have a great and seizure free weekend!!!

Hematologist Appointment

Well, the appointment was uneventful. I didn't really learn anything I didn't already know. The Factor V was a definite factor in her perinatal stroke. There may have been some other things... and of course we are having more blood work done for that. Kendall will start on an aspirin every day. The Factor V is genetic. Either I am the carrier or Justin is or both. I will be getting my blood drawn too to find out, simply because it could effect Kamden in the future if I was the carrier. A lot of people have Factor V Leiden and don't know it. You wouldn't know it until something happens...i.e. stroke, blood clot, etc. If we had known from the beginning any of this, there wouldn't have been anything we could have done differently. (that kind of puts my mind at ease.) Kendall is at risk of having another stroke, but it is like 2%. If she were to have any kind of surgery they may start her on blood thinners, but that's really the only precaution. It simply increases her risk of having a blood clot. We are also going to have an ultra sound done on her right leg. It is a bit longer than her left one. A while back we had an x-ray done to rule out hip displasia. Now, she thinks that is the leg that could have had a blood clot, and so they are going to do an ultrasound to check out her veins. Something like that! I'll keep you posted on the results.
We increased Kendall's Topamax this morning, and starting tomorrow will be adding B6 to her daily routine too.
Thats all I have. Enjoy your evening!