Wow.

You are not going to believe this. Our Pediatrician called early this morning (saying he couldn't sleep all night worrying about Kendall) He said since she still wasn't eating, wouldn't open her eyes, and was crying non stop we should take her in to the ER. He called ahead and we didn't have to wait at all. The Dr. on call immediately saw us and examined her. They were about to order a CT scan, I guess scared she had some more inter cranial pressure....then he decided to check her eye under the ultra-violet light with some dye drops in both eyes. Low and behold, as if the child hasn't been through enough, she has a very large corneal abrasion. (scratch on her eye.) Apparently they are very painful (according to Justin who had one when Chloe scratched him) And she was in severe pain that's why she was vomiting and won't eat. We spent all day there, and after a stomach x-ray and more blood work, we were sent home, told to discontinue the antibiotic and given medicine (lotion) that has to go in her eye three times a day. It may take a small army to do that. They probably thought we were crazy when we breathed a sigh of relief...she really doesn't use that eye much anyway! kidding.
So no sinus infection, no aneurysm, no pneumonia, no blocked bowel or obstruction in her belly, no stroke, no increased seizures...just a scratch on her eye ball. I'd say this day turned out OK.
We have a follow up with the Ophthalmologist we "cheated" on this Monday. I guess I'll have to come clean about the second opinion...

OMG

Seriously. Kendall was awake all night last night. This is not an exaggeration. She woke up at 12 and cried non stop until 1:45. They she woke again at 3, then 5. I knew something was wrong, so I gave her Tylenol. I needed to get to work so my mom came over. About 45 minutes later my mom called saying Kendall hadn't opened her eyes and something was really wrong. She was going to call 911. SOOO...I ran home, picked her up and we went to the Dr. AGAIN.

I filled Dr. Carlson in on all the Factor V stuff and he was perplexed. Then, he examined her, did a flu test, left, looked up Factor V,then came back. She did not have the flu, he came to the conclusion she has a sinus infection. Low fever, very irritable, some drainage, etc. My mom insisted he take a better look at her eyes. When we saw them we about fell on the floor. They both were blood red. Apparently he thinks this is still part of the "sinus infection." He prescribed some antibiotics and eye drops. We were finally able to get her to take her morning dose of Topamax at 2:00. I'm not totally convinced its a sinus infection, but we'll stay the course for now. They said if she acts abnormal for another day to take her to the ER. Seriously though, she won't stop crying when she's awake. And her eyes are very swollen and she has dark circles under them. (SO DO I!!!)

Want to know the really crazy thing? She hasn't had but 2-3 seizures today. Hmh. weird.

Have a great weekend.

Quick Update

Today has been a really busy day, and we don't have any "official" answers yet. (I knew we wouldn't until after the weekend.) But, her EEG went great. She had about 5 seizures in the waiting room and several during the EEG. Needless to say we won't be surprised when the EEG still shows Infantile Spasms.
You know you've visited a Neurology department too much when the receptionist comes out to hug you and ask how the baby is doing! We have also had the same EEG tech on more than one occasion! Fortunately today it was our favorite girl.
The nurse called today and said the hematologist wanted to review Kendall's file and I should call on Monday to find out when we will be seen. My guess is Dr. Malik doesn't want to move forward with any aggressive treatments until we get the blood clotting disorder figured out.
I'm sure we will have more information on that after the weekend.
Thanks for all your prayers the past two weeks. We aren't going to give up hope! So keep those prayers coming!
Oh, and I have to brag on Kamden. His ITBS (Iowa test of Basic Skills) results came in yesterday and he is above the 99th percentile for his age on everything! (being a former public school teacher, I know those tests don't always give a true measure...but I'm always amazed with him!) I mean really, how does the child not remember to go to the bathroom when he's playing video games...but he can explain global warming??? Oh yeah, I forgot " the brain is an amazing thing, it can re-wire itself and is very unpredictable...every child is different."

What next?

Wait. I really don't want to know.

Today Kendall's new Neurologist's nurse called back to tell me the results of the blood tests. It turns out the Factor V (which I referenced before could be the cause of the stroke...but I "doubted" it would be so easy) was abnormal. They are now referring us to a hematologist.

I have mixed emotions about this. I am so frustrated that it has taken so long for this test to be done. It seems to me that when the first Neurologist saw her brain and mentioned the word "stroke" they would have immediately run some sort of clotting tests. I'm definitely not a Dr. but to me that made sense. Why then, did they not do the tests back when she was 5 months old? I assure you it was not from a lack of me asking. I have a little book that I jot all my questions down in for the Dr.'s. I have the same question written down at 6 different appointments with 6 different Dr.'s. None of those Dr.'s ever ran the test. There is something wrong here.

Second, the thought that if they caught this earlier, Kendall's stroke could have been prevented by me taking an aspirin a day?? takes my mind in a direction I don't need to go in.

There is a possibility I could be the carrier and Kamden could also have the disorder too, it just didn't effect him the same way. There is also a possibility Justin is the carrier. I'm sure we will be getting blood drawn soon as well. Like we have time for 3 more appointments! gosh.

If we know the cause of Kendall's stroke we have a better chance of knowing whether or not it could happen again. Plus, it will be important to know if Kendall ever has surgery, etc. Also, I guess it could affect our health as well. I don't know. The only thing I do know is I AM SICK AND TIRED OF FINDING OUT ABOUT NEW MEDICAL ISSUES I NEVER KNEW EXISTED. I don't want to read anything else. I don't want to speculate anymore! Everything we have been diagnosed with seems to have ridiculous odds. 1/3000, 1/20000, 1/a MILLION??? I need to play the freakin lottery.

We had OT early this morning, and blind services visit after that. Then we had Speech come to the house and they couldn't work with her since she hasn't had her swallow study. Hopefully by next week we will have been worked in for the swallow study. Tomorrow is another busy morning, then the EEG on Thursday. I need a vacation.

I'm off to bed.

Another Weekend!

"All I have seen teaches me to trust the Creator for all I have not seen." ~Ralph Waldo Emerson

Our wonderful Valentine's Weekend ended with a boom. (literally...about twenty minutes ago Justin backed his brand new truck into my mother's not inexpensive car.) Up until that, we had a great weekend. Cooper finally received a hair cut on Friday. Thought I needed to redeem myself. Unfortunately since Valentine's Day fell on President's Day weekend and President's day weekend seems to be, for some unknown reason, a really big time to buy furniture and mattresses... I had to work, leaving Justin to care for Kendall all day on his own. As you can see from the picture above, they bonded.

When I got home, we went over to Nonny and Poppy's house for a delicious steak and shrimp dinner! My favorite. Then, we left Kendall to spend the night with Nonny and Poppy. This was only her third time away from us overnight. Justin and I enjoyed our alone time at our favorite spot in town for a drink and came home to much needed uninterrupted sleep! Thanks to Nonny and Poppy for the break!

This morning, Justin and I stopped by the gun show in Ft. Worth on our way to pick up Kendall. Yes, I went to a gun show. I went to a gun show because that is the kind of wife I am. I wanted to get a glimpse into my husband's world. I wanted to share in his love of hunting and shooting. I wanted to broaden my horizons by walking up and down isle after isle of weaponry. I wanted to relish the experience of freshly smoked unidentified meat. I wanted an up close and personal look at neatly displayed Confederate flags. I wanted to watch the elite society of people who wear camo pants with camo shirts and push their guns around in their empty baby strollers. I want everyone to now know that is something I will NEVER do again.

As far as Kendall pants goes, she continues to smile through her seizures. They haven't really gotten better, but they haven't gotten worse. They are still there though, lurking around every corner. Sometimes I think it is harder on me than her. Every time one of those monsters sneaks up on her it takes my breath away. This Topamax has approximately 4 days to work. Thursday she gets another EEG and if the hyps. are still there, we take the next step. I pray they disappear by Thursday.

Have a great week. Stay away from gun shows.