Polar Express party at preschool

Andrielle had a Polar Express Christmas party at preschool last week. She wore pajamas, and Santa even came!

Genetic Test

We just back from the doing the blood work for the genetic testing at the doctor's office. Poor Andrielle just does not like needles (but, really, can you blame her?). Her veins are also really hard to find. They finally found her vein on her left arm and just after they started collecting the blood they needed, her vein collapsed. So they had to use her right arm. Thankfully, they were able to get enough blood from that arm. They're sending in her blood samples and we should have the results back in 2-3 weeks (but it could be a little longer because of the holidays). Hopefully this is the last test we will have to have done for a while.

More testing

I've been in contact with Jeremy Schow, a man who works for Lineagen. Lineagen is the company that does genetic testing. I personally talked with my insurance company and they told me that they didn't cover genetic testing. Jeremy had a conference with them and filed a dispute over it and he won the dispute! They are going to cover the testing! Originally, we were only going to have to do a buccal cell test (the swab inside of the cheek to collect the skin cells), but in order for insurance to cover it, they want to do the blood work test instead and we also have to do a karyotype test (another blood test). I'm not exactly sure what the karyotype test will tell us, I know it has something to do with chromosomes. It looks like we'll be doing this blood draw tomorrow and hopefully it will go well and we'll have the results back soon. Since it's Christmas this week, I'm sure it will take a little longer to get them back, but hopefully it won't take too long!

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.

MRI

Andrielle had her MRI done yesterday. It was absolutely the worst experience I have had in my entire life. Gavin and I were allowed to be with her when she was put to sleep. They had me hold her on my lap, holding her arms down, while they put in her I.V. She screamed and cried the whole time. I tried singing all of her favorite songs and nothing would calm her down. We were going to try giving her the sedative without anything else, but she was freaking out so bad that we had to give her another drug to calm her – which it kind of did, sort of. Then they gave her the sedative and she was out. They took her to the MRI and Gavin and I waited in the waiting room for her. She was in the MRI for about 45 VERY LONG minutes. She came out of it screaming and crying, and then would fall back asleep. But every couple of minutes she would start crying again. While the nurse was wheeling her back to the room for her to really wake up in, she was crying and all of the sudden she stopped breathing. Her face went pale and her lips turned blue. They gave her some oxygen and got her breathing again within a few seconds, but it was terrifying! The nurse told us that during the MRI, every 30 seconds to 1 minute she stopped breathing. So instead of just letting her go home, they kept her to monitor her oxygen levels, which kept dropping every time she would tilt her head forward (while she was sleeping). She was fine as long as her head was way back. The nurse practitioner performing the MRI told us that it had nothing to do with the sedation meds they had her on and that most likely she is doing that every time she goes to sleep, so for almost 3 years now she's been dealing with this! She checked her out a bit and found that she has stage 4-sized tonsils, pretty much enormous for a 2 year old. So, she called Dr Miller (our pediatrician) and he got us an appointment for later that day to go over her MRI results and to have her tonsils checked out again.

Her vitals finally evened out, and even though she was still super sleepy, we were allowed to take Andrielle home. As soon as we got her buckled in her car seat, she woke up and wanted her sippy. She drank the entire thing within minutes. We got her home, and other than being a little wobbly, she was back to herself and very hungry.

We met with Andrielle's pediatrician yesterday afternoon. The MRI came back clean other than one minor thing (a casing on one of her nerves that could be causing her tremors) that may or may not be an issue - we will probably have to re-do the test in a year to make sure it isn't progressing. I’m definitely not looking forward to that! The pediatrician also checked out her tonsils and said they are nowhere near a stage 4; he puts her at a 2. Very confusing to have two doctors give us completely different information!! So he doesn't want to get her tonsils removed at this time. He also didn't seem very concerned with her possible sleep apnea. I AM - so I'm looking into finding another pediatrician because I want a second opinion. Her not breathing is a very big deal to me! So, hopefully we'll be seeing another doctor hopefully this week for that. I think that if she’s not getting enough oxygen at night, that would cause her to not sleep as well as she should be, and that could maybe be the reason for her delays. Even though Andrielle has probably been dealing with this (possible) sleep apnea thing for a couple of years - it's still new to me and it scares me to let her go to bed alone. I'm hoping we get it all figured out soon so that both of us can sleep better at night.

3-year check-up and Opthamologist

Yesterday was crazy. Grayden had his 2-month well check and immunizations and I combined his appointment with Andrielle's flu shot and 3-year well check because I wanted to talk to the pediatrician about her testing scores. Grayden is doing great. He's right where he should be developmentally and his stats all look great. His head is in the 30th percentile; so nice to have a baby with a small head - lol!

Gavin was awesome and took the day off to go to our appointments with us. The doctor checked Andrielle out and doesn't think there is anything physically wrong with her, but acknowledged that she definately has learning delays. He suggested we focus on her Speech and Social skills. I want to continue working on her physical therapy stuff, but probably not as intensely as I have been, since Dr. Miller seems to think she will pick those things up on her own eventually. I'm hoping that's the case. Even though the doctor didn't seem to think there was anything wrong, I still pushed for an MRI just to make sure. So we have an MRI appointment set up for Friday morning at Utah Valley hospital. I just want to cover all our bases and rule out whatever we can.

Yesterday afternoon was Andrielle's appointment with the opthamologist (Dr. Valentine). I guess he practices in Provo, but comes to Payson once a week. Somewhere the communication was mixed up about which day he was in Payson because I was told her appointment was in Payson at 1:30 yesterday. We showed up on time only to be told that Dr. Valentine wouldn't be visiting that office that day. The receptionist was a sweetheart and called the Provo office, verifying that our appointment was supposed to be in Provo and Dr. Valentine was nice enough to still see us. We made it to our appointment about 20 minutes late. The whole appointment was miserable to say the least. Andrielle hadn't had a nap and she just didn't want to cooperate. To begin with, they had to dilate her eyes. The drops sting, so that just got her started off grumpy. Then to check out her eyes, Gavin had to hold her body on his lap, the doctor held her shoulders and head in his lap and his nurse/helper person held her head straight while the doctor checked out all the things he needed to. Andrielle screamed through the whole thing and got herself so worked up that she threw up. Really fun... But the doctor was able to get the information he needed. And good news - Andrielle has normal eyesight for a 3 year old and he didn't see any problems. So, yay, we can rule out vision problems! He does want to see her in a year for a follow up, but it's nothing we need to be worrying about.

So, now we've just got to get through the MRI on Friday. They will have to sedate her because of her age. They do have a pediatric team, so I hope that will make things a little better (for all of us!) I'm really not looking forward to it, but hopefully it will give us some answers. I'm hopeful that they get the results back quickly.

Matching

Andrielle has been working with her Cognitive Development therapist, Connie, since January on being able to match pictures. I've bought sets of flash cards, made my own, and worked lots with her on it. Last week, Connie made her some special flash cards with pictures of words she knows (banana, apply, baby, car, ball, bubble, etc) and yesterday she could match them! She got up to 6 cards being down at once and was able to match all 6! I'm so proud of her. Way to go, Andrielle!!

Update on testing: I set up and appointment with Andrielle's pediatrician (Dr. Miller) for next Tuesday to talk to him about getting some testing done. He called today and will be setting up an appointment for her with his opthamologist. He wants her to get her eyes checked out first before we meet with him. We were going to wait to get her eyes checked until the first of next year when we get her on our eye insurance, but Dr. Miller said that if there is a medical reason, our regular medical insurance should cover it. Hopefully that's the case! I'll update later with how it goes.

Testing

Andrielle had testing done that last two days; she had speech and cognitive on Wednesday and physical yesterday. This testing will determine whether or not she qualifies for the preschool and how many days she qualifies for.

So, her speech scores show that she's where she should be at about the age of 1 year 6 months, so she's about a year and a half behind in speech. 10 months ago when they did this test for the first time, she was at 1 year 2 months. Her physical therapy (peabody) testing scores show her at between 1 year 6 months to 2 years. When she was first tested for that (10 months ago) she was between 9 months and 1 year 6 months. We'll get her cognitive scores soon. SO - she is improving, but not as quickly as we were hoping and she hasn't improved as much as she should have with all the help she's been getting and all the work we've been doing. It's very discouraging. But the good news is she will definately qualify for preschool services, now we just need to wait until our IEP (Individual Education Plan) meeting to see how many days she will get. I'm really hoping for at least 2 days a week, but would love to see her qualify for 3 days, which would be the maximum she could get.

We are also looking into getting some other testing done on her to see if maybe there is a real REASON why she has such a hard time learning. I talked to the eye doctor yesterday and we'll get her tested beginning of next year, as soon as we get her on our eye insurance. I'm wondering if maybe she has poor eyesight or maybe a depth perception problem. The therapists are also sending her test scores (both recent and from 10 months ago) to her pediatrician. We'll then go in and talk with him and see if maybe a CT scan or MRI is an option to see if there is a neurological problem. I'm anxious to get testing done. I would love to know if there is something going on so that I know what we're up against and if it's a temporary thing or something we'll be dealing with forever.

It has definately been an emotional week for me. I just want my little girl to be "normal" and basically I just don't want her to have any trials - haha. I guess that's why we're here, though. We've got to learn and grow somehow. I'm just praying we learn what we need to from this.

Successes

I hate that I don’t feel like I can share our successes the way other parents do. For example, Andrielle has been working with her physical therapist since January on walking up and down the stairs. Just this week, she started walking up and down them on her own without anyone holding her hand. For us that is HUGE! It’s taken us over 9 months to get here. But I didn’t feel like I could shout it out on Facebook like other moms do when their kids do something amazing (like potty training). I feel like if I shared our news, other people wouldn’t understand and that big success would be belittled. I don’t want other people’s pity or judgment.

I guess that’s why I’m really lucky to have the Kids Who Count playgroup to go to. I feel like I can share anything and they understand and are excited for us, too. I love having a place that Andrielle and I can go together where we aren’t so judged. The moms there understand the things we’re going through because they are going through them, too.

Andrielle’s successes might be different that other kids her age, but that doesn’t make them any less impressive or meaningful or great. It’s just different. Someday, I hope she will catch up to her peers and she will have the same successes as them at the same times as them. But for now I’m trying to remember to be grateful for the things she is doing, because she is pretty darn awesome.

Wrong

One thing that really bothers is me is when people ask me what is wrong with Andrielle. I want so badly to snap right back with something snippy like, “Nothing, what’s wrong with you?”. But I don’t. Usually, I just politely say something quick about how she has learning delays. Why do people think it is ok to ask what’s wrong with another person just because she’s a kid? My daughter isn't wrong . Everything might not be what the world considers right, but does that make her wrong?

I really don’t mind people asking about Andrielle. It doesn’t usually bother me to talk about it. I just wish there was a better way to ask, but to be honest, I don’t know what that would be.

Maybe

When we first learned about Andrielle's learning delays, I felt like I had failed my little girl. Where had I gone wrong? I read to her all the time, we sang songs and listened to fun music, we bought her lots of developmental toys. But maybe I had read the wrong books. Maybe I sang the wrong songs and we listened to the wrong kinds of music. Maybe we bought the wrong kinds of toys. I had tried to limit her T.V. watching, and when she did watch T.V. I tried to make sure she was watching what I considered "educational", but perhaps I went about that all wrong, too. I had taken her to different parks and attended play groups. We went to museums and discovery centers, to the zoo, aquariums, and farms. Maybe we just went to the wrong places.

I started looking at all the other kids her age in our neighborhood. What were their moms doing different than me? How come their kids were where they were supposed to be, but my little girl was behind. What was different about the books they were reading and the places they were going? Sometimes I would look at another mom and feel like I was doing so much better than her, but her kid was fine and mine was the one with problems. How did that work!?

And I had to realize that maybe it's not my fault, and it's not Andrielle's fault either. Maybe it's genetics. Maybe I can't control it. Maybe, just maybe, someone has a bigger plan for us. There is something we're supposed to learn, I just haven't figured out what that is yet. But we're working on it and I'm doing the best that I can.

The Beginning

John Lennon said, “Life is what happens when you're busy making other plans.” When Andrielle turned 2, her pediatrician recommended we call “Kids Who Count”, an early intervention center in Salem, UT. She had some testing done, qualified for many of their services: speech therapy, physical therapy, and cognitive therapy, as well as a special playgroup. These therapists come to our home twice a month each to work with her and she and I go together to her playgroup twice a week at the Kids Who Count building. Andrielle hasn’t been diagnosed with anything yet, we have only been told that she has a learning delay. And – our lives changed. Our plans changed. The future is just different.

It’s difficult knowing she’s developmentally behind other kids her age. It’s hard being excluded from groups and activities because she’s behind. It’s frustrating trying to figure it all out. But life is still good and things could always be worse. These are my thoughts and this is my life.