Apple Picking

It's that time of year again....apple picking time! This year we are very thankful to be living in St. Louis again since apple orchards are scarce in Little Rock. We packed up and headed to Illinois to visit Eckerts farm for Oksana's first apple picking experience. We were joined by Larry's family and my cousin who lives very close to Eckerts. It was a beautiful day and we all had a great time.

On the tractor headed to the orchard. Do you think it would kill my kids to give me one decent picture?!


Picking is fun...


But sampling is better!


Sometimes you need help to reach the high ones!



Some of our picking crew...Larry's sister with our niece Auriana, our niece Kennedie, and then our cousin Lauren.




I learned that you can tell a lot about your child's personality by taking them apple picking. Clayton's bag had only a few apples. Each one was carefully inspected to be sure it was completely free of any blemish or bruise. Evan had a bag FULL of apples, 1/2 of which were battered and bruised! Exactly what I would expect from each of them!

EEGs, IEPs, and wheelchairs

EEG
We got the EEG results. Turns out it was normal. Of course my first question was "So we are done and we can feel confident that she is not having seizures?!" Not so fast. Since she did not have an "episode" during the EEG we still can't be sure that the zoning out isn't a seizure. He needs to have her on the EEG when she does it to know for sure. So...now we get to do a 24 hour EEG. They will be calling me later this week to schedule it and it will be in the hospital.

IEP
Looks like they are wrapping up all of Oksana's testing and we will be having an IEP meeting on October 6. I am very excited to see what they learned about her.

Wheelchairs
Oksana got her wheelchair today! This is only for long distances. For example, it would have been really nice to have it for the balloon glow! I think she will be much more comfortable in this than the stroller she is quickly out growing!

Hot Air Balloons!

Every year in St. Louis there is a big hot air balloon race. The Friday night before the race they wait for the sun to go down, fill the balloons, and let them glow in the night! Those of you who don't know Oksana might not know that this child is OBSESSED with balloons of all kinds. She can spot a balloon a mile away and gets SO excited every time she sees one. You can bet there is always a balloon (usually half deflated) somewhere in our house. I knew that there was no way we were going to miss out on showing her real life hot air balloons! Our family had never been to this before so it was a first for all of us. We were there early so we walked around for awhile and then found a spot to sit and wait for them to start blowing up the balloons. When they started, Oksana was yelling "Oh, I love those balloons SOOOO MUCH!" Once the balloons were all blown up you could actually go in and walk right around them. Every few minutes a horn would blow and all of the balloons would light up at the same time. It was so cool!

My boys are way too cool for pictures ;)!

This is our niece Auriana looking very cute for the balloons!






On the topic of balloons, the next day we went to a baby shower and this is where you could find Oksana almost the whole time:

See what I mean?!

Show and Tell

Last week Oksana was student of the week! This was intentionally done early in the year as a way to help the kids get to know her better. I love that her teacher is always thinking like that. As student of the week you get to bring in a poster all about you and then you get to bring a show and tell each day of the week. Oksana's poster had a picture of herself, her family, her dog, Ukraine, Nina, Chick fil A :), and her 3 favorite things in the world...balls, balloons, and books! I wrote a few little sentences about each one. For show and tell each day I would send an item with a little description of it typed out so that the teacher or para could help Oksana share about it. On Monday she brought matroyshka dolls. On Tuesday she brought a picture of Anya. On Wednesday she brought the teddy bear that we gave her the day we got her out of the orphanage. Thursday was EEG day so she wasn't there. On Friday her show and tell was her AFOs! I came up to school on Friday to take them off and tell the kids all about them.

When I walked in the door Oksana didn't see me at first. When her para pointed me out she screamed "MAMA!", ran over to me, and grabbed onto me. It was so sweet. That warms your heart as a mom with your biological kids but with an adopted child it is even that much more special. She was SO excited to see me there and kept giggling and saying "My mama's at school. That is SO SILLY!". For show and tell she got to sit in a chair while the other kids sat on the floor. She definitely knew the routine and was very excited to be the center of attention. We talked a little bit about her AFOs and took them off for the kids to see. We told them how they casted her for them, how she is stretched, and how we get them back on. The kids got to ask questions and one child wanted to know if her leg was broken!





You know it's interesting to me how typical Oksana seems to us because we don't know her as anything different. At home we don't think twice about the noises she makes or the way she flaps her hands. It is always when I am around other kids her age that I see how very different she is. It occurred to me at school that day that all the education about CP in the world might not make these kids accept Oksana completely. It's really her intellectual disability that sets her apart more than her physical disability. Unfortunately that one isn't as obvious and easy to talk about. Luckily she has no concept at all of the fact that the kids are having trouble accepting her. She just lives life to the fullest in every situation. I hope that her peers might be drawn to that someday and learn to accept her just as she is.

We're tired but the EEG is done!

Today was EEG day. As I mentioned before, Oksana was allowed to sleep from about 11-4. Keeping her up until 11 was no big deal. We took her out to dinner then played at an indoor playground at our church until 9. When we got home she played for awhile, we gave her a bath (her hair had to be freshly washed for the EEG), she played a little more and she actually complained when it was time to go to bed! I was up at 3:45 and started waking her up soon after. She did not want to get up but she was very good and spent 2 hours just laying on the couch with me watching videos. She must have been tired because I have never seen her sit in front of a TV for longer than 30 minutes! After that we had breakfast, got ready, and we were out the door at 7:30.

When we got to Chidren's she was hyper! She loved everything she saw and was walking all over the place checking things out. I was the only one of the two of us that looked sleep deprived ;)! They called us back and after finding her something to watch on TV, which she never looked at, they started getting her all hooked up. First they measured out where each electrode would be and marked the spot with a marker.

Then they cleaned each of the spots with some sort of a cleaner.

Next they dipped each electrode in glue, stuck it on her head, and then covered it with a piece of gauze.


Here she is all hooked up.


First they had her close her eyes for 20 seconds. She wouldn't keep them closed so I put my hands over her eyes. Then they had her blow on a pinwheel for 3 minutes! This was supposed to be like hyperventilation.

Next they flashed a strobe light in front of her a few times. Below is the monitor they watched while they were doing these tests. You can see that not only is it measuring her brain activity but there is a video camera pointed at her so you can see what she is doing on the bottom right corner of the screen. In this shot she is sitting still:

And in this shot she was moving around. Look at the little lines all over the place when she moved!


After all of this the very nice nurse said "OK now she can go to sleep". Seriously?! How in the world do you expect a child, even a sleep deprived one, to sleep after all of that?! I prayed and prayed that she would fall asleep but she never did. The nurse came back in and said that she was still and that should be good enough. Then they squirted some sort of a liquid on her head to loosen up the glue and the electrodes slipped right off. The nurse told me that I should call on Monday to get results. I didn't notice her having anything that obviously looked like a seizure so I'm very curious to see what they say.

When it was all done I stopped by the gift shop and got her a balloon to take home. Don't you love her greasy hair?!

Can you tell by her choice that she has brothers? She barely knows who Scooby Doo is but she knows her brothers like it so that was good enough for her!

She looked very sleepy by the time we got home but now she is walking around like she had a great nights sleep. I'm off to wash her nasty looking hair out!

EEG

Tomorrow morning at 9am Oksana will be having an EEG. Tonight she has to be sleep deprived so we are putting her to bed at 11 and waking her up between 3:30 and 4 am. I'm tired just typing it! We have been spending the week looking at pictures and watching videos of kids getting EEGs to prepare her. Now she is very excited about it ;)! Obviously if she is indeed having seizures we are praying that she will have one during the EEG so we can know for sure. I'm a little nervous that she won't have one and they will think that she isn't having them when she really is. I guess they know more about this than I do so I can trust them to know for sure either way. I'll be sure and post and update with pictures as soon as I can tomorrow.

Before I go I really want to share how amazing God has been in helping us find a neurologist. When we went to Shriners in July you might remember we had no plans to see a neurologist but the offered since the neurologists "happened" to be in that day and they "happened" to have 2 cancellations. We took them up on it if for nothing else than to have someone else read her MRI. Dr. Neil was a very nice man and he is the one who diagnosed her with microcephaly. When shen went to the pediatrician recently we were told that Dr. Neil is the best of the best. When we started to suspect that she was having seizures we called Shriners to see if we could see him again and we were told "We don't do seizures, you are going to have to call his office." I called his office and they said he no longer has a clinic there to see patients but they would ask him who he would like them to send Oksana to. 2 days later my phone rings and it is Dr. Neil. I was shocked! He said he had looked at her notes from Shriners and was curious what was going on. I told him of our concerns and he agreed that it sounded like she was having seizures and said HE wanted to see her! He ordered an EEG through Shriners so that we wouldn't have to pay anything! Since Shriners doesn't do EEGs we will actually be doing it at Childrens. He said if she is indeed diagnosed with epilepsy we will no longer be able to go through Shriners and we will have to see him out of Childrens but I was thrilled that we could do the EEG through them! As disappointed as I was in my time at Shriners, God orchestrated it so that Oksana is being seen by one of the best neurologists in the nation! Amazing.

Seizures

About 2 months ago Oksana was being evaluated for OT at the private therapy center near our home. During the testing there were a few times that she would "zone out". The OT, who is a dear friend of mine, noticed this happen and asked if I see it often at home. I told her occasionally but not much. She told me this could possibly be a seizure and I should start to document when I see it and what she is doing at the time. For about a week I documented but when I only had 2 down and they were both at dinner time I decided it was probably nothing. Then last week during OT (she is seen by a different OT so this was not my friend with her) she was playing a game and she was belly laughing so loud that I could hear her in the waiting room. After she came out the OT expressed concern that in the middle of the game she "zoned out". As we were talking about it we both looked up and she was doing it again. That was a Friday and I saw it again over the weekend so just on a whim on Tuesday I said to the para, "Do you ever notice Oksana zoning out?" She said "YES! In fact she did it quite a bit today." I told her a bit about the history leading up to this and she mentioned that she was once a para for a child who had seizures that looked just like that. I told her that I rarely see them at home and that I can snap her out of them so I was still doubtful they were seizures. Still, this was becoming more than a coincidence so I went home and immediately started researching.

What I learned is that there is a seizure called an absence seizure. Their onset comes between the ages of 4 and 14. They can be hard to identify because they just look like the child could be daydreaming, or are not seen at all because they only last 10-20 seconds. Hmmm...that could explain why I don't see them at home. When Oksana is home she is very busy. She loves to go in her room and read books, play downstairs in her ball pit, walk around the house talking to her imaginary friends, etc. I don't sit around looking at Oksana when she is home. The 2 times that I saw it while I was documenting was at dinner...when I was sitting down looking at her. I also thought I was snapping her out of it but realized that when I see it I will sit and look at her for awhile, then mention to Larry "Look she's doing it again", then I will call her name. It probably appears as if I'm snapping her out of it but actually, if it really is a seizure, it could be over then.

To be honest, I'm STILL not convinced that is what we are dealing with. This morning as I was stretching her I saw her looking off into space and I really don't think it was a seizure, she was just staring. Regardless, if it is any sort of a seizure it is nothing to mess with. The worst I've done is paid a co-pay and lost some time at a doctor's office to find out for sure. I'm currently trying to find a neurologist, which is another story all by itself, but I hope to have an appointment on the books by the end of the week. If you have any experience with this I'd love to hear from you!