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.
Saturday, November 5, 2011
Wednesday, November 2, 2011
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.
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.
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.
Saturday, October 29, 2011
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.
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.
Wednesday, October 26, 2011
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.
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.
Wednesday, October 19, 2011
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.
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.
Friday, October 14, 2011
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.
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.
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