Preschool

Andrielle started preschool on Monday. She did awesome. She got right on the bus with no problems. I, on the other hand, smiled and waved until the bus was out of sight and then ran back inside and bawled. Then I got Grayden ready and hopped in my car and headed over to the school to spy through the window for a few minutes before I went back home and actually did my workout, got showered/dressed, did the dishes, and even got a short nap in before Andrielle was dropped off.

She had school again today and she was excited to see the bus pull up. She ran right over and climbed in. I'm so proud of her! Now I just need to keep up the motivation to workout while she's gone. We'll see how that goes :)

East Meadows Preschool!!

We just got back from our transition meeting at East Meadows Elementary School here in Spanish Fork. I met with Mrs. Kemble, who will be Andrielle's preschool teacher, and also got to meet the school's speech and physical therapists. As far as placement goes, she got preschool Mondays/Wednesdays and Baby 3 class on Fridays. So she'll be going 3 days a week! Yay! Mondays and Wednesdays are from 8:30 - 11:00 (12 kids in the class) and Fridays will be 9 - 10:30 (5 kids in the class), and I will get to go with her on the first Friday of every month! She will also be riding the bus, something I am really nervous about, but I think it will be good for Andrielle. I really like her teacher and couldn't be happier about how things worked out for her! She will start preschool the Monday after Thanksgiving break (Monday, November 28th). I'm really going to miss the Kids Who Count program, but I think this is going to be great.

Transition Meeting Preschool Placement

Andrielle has her transition meeting with the school district for her headstart preschool placement today. I talked with the early intervention therapists and teachers that have been working with her, I am hoping she gets 2 days a week in the preschool and one day a week in the special Baby 3 class. The Baby 3 class is a class for kids that will have almost 3 full years in preschool before they start Kindergarten. I guess right now it only has 3 kids in it, so she would get a lot of one-on-one attention and I would attend that class with her. Connie (her Cognitive therapists and playgroup teacher) talked with the school district already and told them that is what she would like to see happen for Andrielle. If she got this arrangement she would have all three days at one Elementary school (East Meadows). She also told me that if she were to hand-pick a teacher and speech therapist, they would be these 2 that work at the East Meadows Elementary. So, I'm praying we get what's best for Andrielle.

EEG

Andrielle had her EEG test on Friday (the test to check for seizures). Since they needed Andrielle to sleep for this study, I put her down to bed late and got her up at 5:30 am. I dropped Grayden off at my mom's and we went in at 10:30 am to Utah Valley Hospital. We had to wait about 45 minutes to actually get in for her testing. By this time, she is overly tired and cranky. She didn't want to sit still for the person performing the test and I think she got to the point that she was past sleepy and just really grumpy. She was screaming and crying and the lady left us hoping that I could get her to fall asleep. We tried turning on movies, singing songs, and I even layed by her in the hospital bed, but nothing we did would get her to sleep. Finally the lady came back in, we wrapped Andrielle up in a sheet with only her head sticking out and her arms pinned to her sides (all this while she's screaming). I ask if they have a Dora movie we could put on (they don't) but she did have a Winnie the Pooh movie. Andrielle has never watched Winnie the Pooh before, but the combination of the movie and her being completely worn out from crying and fighting us, she finally fell asleep. The tester lady was able to hook up all the little probes all over her head and shoulders, and Andrielle slept for the 30-minute long test. We left the hospital at around 2:30. We should have the test results back in the next day or two. Fingers crossed everything looks normal!

I feel so blessed that Grayden is such a good baby and for my parents who are so willing to take him for me so that I can go to all of these appointments with Andrielle. I don't know what I'd do without them!

Neurologist

Andrielle had her appointment with the neurologist at Primary Children's hospital yesterday. My mom was really sweet and came with me. I don't know what I would have done trying to take Andrielle and Grayden all by myself. I was really grateful to have her with me.

After spending about an hour talking with Dr. Filloux, the neurologist, he basicallly told us that, yes, her delays and tremor and definately something to be concerned about, but he doesn't know what's causing them, either. He did show us her brain scans from the MRI and pointed out the places that were in question before. It was the first time I'd seen the scans, so that was kind of nice seeing those and having him explain them to me. And He ordered some blood work and a urine sample.

We went to the lab at Primary Children's and again, I had to hold her down on my lap while 2 other girls are trying to find a good vein in her arm to get their blood samples. The first girl says, "Ya...I don't feel confident, how about you?" to the other girl. The next girl spends a few minutes trying to find a vein and says the same thing, "Ya, I don't feel confident, either" Oh good - neither of these girls feel confident poking my little girl. How reassuring. So they go and get another girl to come try to find a vein. She can't find a "good one" either, so they all go and get yet another person. I'm guessing she was their supervisor or something, and she comes in, grabs a black light thing, turns the lights off and finds her vein that way and gets it on the first try (thank goodness!)

Then trying to get a urine sample from an unpotty-trained 2-year-old was a joke. The girls working in the lab (same two as before) taped this bag thing onto her. They taped it on really poorly and sent us home with it on her to take care of getting the sample myself because she hadn't peed by the time we left. She ended up peeing all down the side of her leg and soaking her jeans because the bag wasn't taped on very well. They did send me home with an extra bag-thing, I put it on (much better than they did, if I do say so myself) and got the sample just fine. I'll be taking that in to an IHC hospital today.

ANYWAYS - her blood work all came back fine, so that's good. Dr. Filloux also wants her to have an EEG done this week (basically another sleep test to watch for seizures).

I'm so tired of every doctor telling us that there is something wrong but they don't know what it is. I just want one of them to tell me something helpful! My poor little girl is so sick of doctors.

The Misunderstood Child

A friend of mine posted this poem on her Facebook wall. I really liked it so I wanted to post it here, as well. I just want to add that Andrielle doesn't have the sensory integration disorder they are talking about, but a lot of the other things seemed applicable.

The Misunderstood Child
By Kathy Winters

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different,somewhere in my mind,
And what it is, nobody knows.
I am the child that struggles in school,
Though they say that I'm perfectly smart.
They tell me I'm lazy-can learn if I try-
But I don't seem to know where to start.
I am the child that won't wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can't handle most smells,
And tastes-there are few foods I'll eat.
I am the child that can't catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.
I am the child with whom no one will play-
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.
I am the child that tantrums and freaks
Over things that seem petty and trite.
You'll never know how I panic inside,
When I'm lost in my anger and fright.
I am the child that fidgets and squirms
Though I'm told to sit still and be good.
Do you think that I choose to be out of control?
Don't you know that I would if I could?
I am the child with the broken heart
Though I act like I don't really care.
Perhaps there's a reason God made me this way-
Some message he sent me to share.
For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood.
I am different-but look just like you.

Sleep Study

After getting Andrielle's MRI results and talking with Dr. Miller, I was really confused because it seemed like we were getting such different information from everyone. So I found another pediatrician for a second opinion (Dr. Bennett, who is actually my parent's pediatrician and the one that saw me as a kid). He saw her yesterday and addressed all of our concerns. He agreed with her therapists about her learning delays and sent us to Utah Valley Hospital last night for a sleep study to check out her breathing. I wanted to make sure that she really is breathing at night and not holding her breath and making her oxygen levels drop like what happened during her MRI.

SO - Andrielle had her overnight sleep study at Utah Valley Hospital last night. It actually went a lot better than I thought it would. They had to hook her up to all these machines to moniter her stats (breathing, oxygen levels, blood pressure, heart rate, etc.). The worst part about it was the the little sensor across her face and up her nose to moniter her breathing. She didn't want to keep it in, so they had to tape it to her face. But they let her watch Dora until she fell asleep and she actually slept pretty well. I also got to lay in the bed next to her and hold her all night, so I think that helped. She finished her study at about 6 AM this morning but we had to wait for Dr. Bennett to come and discharge her. He came around 9:00 and said that from what he saw, it looked like she was breathing normally during the night. We will hopefully be getting the results from the hospital tomorrow just to make sure there wasn't anything funky going on.

While we were in the hospital, Dr. Bennett told us that he had made some calls trying to get her in to be seen by a neurologist and is working on getting a genetic test done for her, as well. He said that soonest appointment for the neurologist would be end of January 2012, but while were still in the hospital, Primary Children's Hospital called me and said they had an appointment for this coming Friday (Nov 4) to have her evaluated by a neurologist (Dr. Francis Silloux). So, we are looking forward to that test on Friday, and since Gavin just can't take off any more work, my mom is going to go with us. I'm so glad she is coming with us, I wasn't looking forward to going on my own.

On another note, Dr. Miller called yesterday to tell me that he talked with Utah Valley about Andrielle's MRI and it turns out it was actually an adult reader that read Andrielle's MRI and not a pediatric reader, SO that makes a big difference and the mylonation they saw on her nerve is actually not a problem. I guess in adults it would be a big deal, but in kids it's normal. So, that's a good thing - her brain looks good! On that same phone call, He asked about Andrielle's breathing at night and I told him that I had gotten a second opinion from another doctor and that we were having the sleep study done, and I don't think he was too thrilled that we hadn't come to him first. Gavin talked with him this afternoon and told him that we weren't looking to change pediatricians right now, but that I was just frustrated with the conflicting information and needed a second opinion from another doctor. We had her sleep study results sent to both him and Dr. Bennett. For now, we are going to be keeping Dr. Miller as our primary care physician for Andrielle, but if he's not pro-active in helping us figure out what is going on, I definately want to find a new doctor.