Thursday, August 2, 2012

Thoughts Everywhere...

Sorry I haven't posted in a few days, a lot has gone on, good & bad, I just needed to get my thoughts in order. First, Kaylie is doing GREAT!!!!! We couldn't be happier with her recovery.

I'm going to start back on Tuesday.... Tuesday came, Kay was doing really well, taking meds good, somewhat eating a little better. Ben's family came to RMH to visit. We had a great visit with them, and they were pleased to see how well she was doing. We went to a local diner for lunch with them, and Kaylie became really tired, but hung in there. Then we just spent the rest of the day at the house watching TV, playing in the playroom, and resting.

First Pic (from left to right)
Karen, Harriet, Ben, Amber, Ray & Kaylie
Second pic with Ben's cousin Tom

Wednesday, Kaylie woke up with a bad headache, I immediately gave her medicine, in which 30 minutes later she vomited up. Then got sick again, 30 minutes later. We got her cleaned up, went to go get some breakfast, which she only ate one silver dollar pancake. Then I headed to the hospital to get a copy of her last MRI scan, and to have medical records sent to her pediatrician. We then went to TCI to have our appointment with Dr Rekate. While we were there, we saw a familiar family from RMH, they were there because their 3 yr old son has Chiari... but the interesting part was that they were from Holland! 

Dr. Rekate said Kaylie's incision looked great, there was no swelling or anything. He was happy to see how fast, and well she is recovering. He said that we could wash her hair, and that the steri strips would come off on their own. He wants to see Kaylie back in 3 months, and we said we were planning to come up, and to visit family in PA, so it would work out well. 
Then we finally talked about Abby and Mason's MRIs. Both kids do not have Chiari, as of right now. In Abby's MRI he said there was a little crowding, asked if she has any symptoms... we said no, and he said that's good. He just told us if she ever starts to have headaches or anything, to let him know. Mason on the other hand, has something called Basilar Invagination. This is a Chiari related condition. Dr. Rekate was a little surprised that Mason did not have Chiari, but had Basilar. Basilar Invagination is when your brain stem of the spinal cord is bent over, like its folding over a mountain. When I first saw Abby and Mason's MRIs when we first got them... I immediately was able to say that Mason did not have Chiari, and that I didn't think Abby did, but I wasn't sure. On Abby he said it was the crowding part that made me question it. And on Mason, he was surprised that I was able to see it on the MRI. I told him that I had watched his video, over 10 times... and that, when I saw that the brain stem was not straight like Kaylie's or other MRI pics I had looked at, I knew something was not right. When I had sent him the MRIs back on July 12th, I had talked to him about how after watching his videos, I think Mason's kind of looked like it... but that I wasn't him or a doctor, so we would see him when we get up to NY. I then joked with him, about hiring me to read MRIs. LOL... yeah, right... but maybe this is a sign I should go into radiology, instead of nursing! A whole other post, for a different time! So, what now you ask, with Mason. Well, he had asked if they were with us in NY, I said no, back home with my parents. He said when we come back to see him in 3 months with Kaylie, to have Mason come too (which was our plan), and he wants Mason to have a MRI at North Shore, of the cervicles. I guess with Basilar, it has to do with the C2 being pushed upward or forward... something like that. And then we would go from there. He asked if Mason has any eating or swallowing issues... I said no, he eats great. He can go from soft to hard textures very easily. He asked if he has had any symptoms like Kaylie, i.e.: headaches, neck pain..etc. I said no, they only issue Mason has, was that he is very delayed in Speech. He said that was common for these kids... he also said that it was possible that Mason in a couple years... about Kay's age might have Chiari, as he grows. Surgery is a treatment to correct the bend of the brain stem.... BUT, after we have the MRI in Oct, we would talk about all that. He said their is a good possibility, that if he isn't having symptoms, that we just watch it. I plan on adding an area about Basilar Vagination to the top of the blog. It will explain it more. I will also, add a pic of Mason's MRI on here when we get home. It's actually weird to look at the difference between his and Kaylie's brain MRIs. Between them both you can really tell the difference with one with Chiari, and one without.... then also between one with Basilar Invagination and one without. My state of mind with it all, as Ben likes to say, while we were in the office talking to Dr Rekate, I was calm and collected... when we got in the car, the water works started!! Even though I knew a little... I was once again upset being told it was true. The rest of the evening was talking to family, after dinner at the house we went to go get ice cream, came back to watch Big Brother!

Today was a good day... Kaylie hasn't been on any medication, we do our neck exercises often. We hung around the house today, went and got some NY pizza for lunch. Then Kaylie & I made cupcakes for the house! They must have been a hit, because they were all gone by dinner time! 

We also washed Kaylie's hair for the first time today. The next pics are of her incision, I have been getting a lot of questions of what it looks like, how bad is it, how long is it, or does her hair cover it. It actually looks really good right now, I couldn't be happier!!

The 1st pic is 4 days after surgery, 2nd pic is first hair wash, and the 3rd pic is her hair dried, it covers up pretty good. 
After dinner we hung out in the kitchen with our "Chiari Family".... it was so nice getting to know everyone.... Julianna & Brenda are some of the sweetest moms I know... I will miss them when we all depart! Since being here, there is a total of 5 families here for Chiari, and related condition. Two of them were in the hospital at the same time Kay was... Bailey & Alaina. Bailey (one of the older chiari girls) gave Kay a balloon. Thanks Brenda & Bailey... she loves it!! Dr Rekate said we are released to travel home, so we will be coming home Sunday!!! We can't wait to be back in Oklahoma, even though NY has grown on me a little... kind of miss living in a bigger city. But, we can't wait to see all our friends, and especially our family!!!


  1. Amber, so thankful that the surgery went well and tat you all are returning home! Will continue to pray for Kayie and Mason!

  2. So glad she is doing well! She looks so happy in all her pictures! It was a pleasure to have taken care of her and to have met such loving and caring parents. . Have a safe trip home, and visit us any time you are in NY. Thanks for the bracelet. I put it right on my wrist. And yes, Chiari purple is my favorite color. :)
    Christine Stiles, RN