I spoke to the neurology department today and found out that Raquel's follow-up appointment has been scheduled for Wednesday, May 6th at 8:30am. Not my first choice of days or times, since I've got a teacher conference with Gabby that morning as well. But it was either May 6th at 8:30am, or being pushed out to sometime in July. So the 6th it is. I'm really looking forward to getting all the tests and appointments behind us. I'm starting to crave a sense of normalcy around here and long to be just a "typical" family, if there is such a thing anymore.
On a school note, I recieved Raquel's first progress report yesterday. Back in January when the IEP was conducted, the district put together yearly goals for Raquel based on their lame assessments of her. Remember, the district is who painted such a bleak picture of Raquel, which I completely 100% disagreed with. I never should have signed the IEP but I didn't know I wasn't required to sign it then. I feel like I should write a book or hold a seminar for parents approaching the transition period. If I knew then what I know now...
Anyway, Raquel was given 14 goals to achieve over the course of her first year in preschool - four for speech, three for applied physical education, one for occupational therapy, and it looks like six for general education. After being settled in her morning class for less than one month, Raquel has already met 7 of the 14 goals! The remaining 7 goals consist of speech - she's not particularly "bonding" with her new speech therapist but after working with Mary every week for a year, I'd be hesitant, too - as well as the applied physical education goals. She is finally starting to be a little more cooperative with Coach and I think that once she starts developing a rapport with him, she'll be a good little student - eventually. It was noted on one of the APE goals that although she wasn't throwing the items IN to the ball pool, she really enjoyed throwing them OUT of it. She's beyond stubborn.
I guess now that specific goals have been met, they just start increasing them a bit more. I need to contact my education consultant and get her input. She wanted to start the classroom observations once all of Raquel's tests were complete.
Tuesday, April 28, 2009
Thursday, April 23, 2009
Not Liking The EEG This Morning
I have to say that Raquel did amazing with her EEG. She walked around in that backpack without any issues and got more and more comfortable with it as the day progressed. This morning pretty much was her breaking point. She wanted no part of it and it was really difficult distracting her.
I left for Children's Hospital around 10:30am - to give me plenty of time to park and find a shuttle. Raquel was pretty irritable the whole way down, tugging at the gauze and just not being a happy camper. When I opened the back door to get her out of the car, I was shocked at how much damage she was able to do in such a short amount of time. I don't know how to even begin to describe it - except that she certainly didn't look like a Smurf anymore. Gauze was torn, the princess cap was nowhere to be found, electrodes were exposed and loose in some places, and her hair was just sticking up all over the place. I did my very best to try to "fix" it, but the damage was pretty much already done. People were giving us double takes as we walked by them, and the shuttle driver said, "She didn't look like that yesterday!" then mumbled something in Spanish that I couldn't quite make out.
When we finally arrived at the EEG building, we had to wait, which really set her off. And as soon as the technician saw her, he immediately burst out laughing and asked me what happened. I had to hold her down so they could take everything off and get her hair cleaned up, and boy did she put up a fight. She wanted out of there. She kicked and screamed from the EEG room, to the shuttle ride, to the parking structure, managing to lose a brand new shoe somewhere along the way. As soon as I got her in the car she started to calm down, realizing we were going home. I never would have thought that removing the EEG would be more challenging than putting the thing on!
I am so glad this is behind us and am assuming that this is the last test she'll be having for awhile. At least that is what I promised her today.
I left for Children's Hospital around 10:30am - to give me plenty of time to park and find a shuttle. Raquel was pretty irritable the whole way down, tugging at the gauze and just not being a happy camper. When I opened the back door to get her out of the car, I was shocked at how much damage she was able to do in such a short amount of time. I don't know how to even begin to describe it - except that she certainly didn't look like a Smurf anymore. Gauze was torn, the princess cap was nowhere to be found, electrodes were exposed and loose in some places, and her hair was just sticking up all over the place. I did my very best to try to "fix" it, but the damage was pretty much already done. People were giving us double takes as we walked by them, and the shuttle driver said, "She didn't look like that yesterday!" then mumbled something in Spanish that I couldn't quite make out.
When we finally arrived at the EEG building, we had to wait, which really set her off. And as soon as the technician saw her, he immediately burst out laughing and asked me what happened. I had to hold her down so they could take everything off and get her hair cleaned up, and boy did she put up a fight. She wanted out of there. She kicked and screamed from the EEG room, to the shuttle ride, to the parking structure, managing to lose a brand new shoe somewhere along the way. As soon as I got her in the car she started to calm down, realizing we were going home. I never would have thought that removing the EEG would be more challenging than putting the thing on!
I am so glad this is behind us and am assuming that this is the last test she'll be having for awhile. At least that is what I promised her today.
Wednesday, April 22, 2009
Dealing With The EEG
Earlier today, I took Raquel to Children's Hospital to have the EEG put on. I've got to say that Raquel is such a trooper. She didn't even make a fuss and the technicians/nurses raved about how cooperative she was throughout the procedure. It probably took about 30 minutes to get it completely set up.
Here's Gabby being the best big sister ever and feeding Raquel some yogurt - with Kermit the Frog watching, of course. At Children's, it's definitely all about the kids.
We were the only ones in the waiting room and they took us in just as soon as we arrived. Raquel was wrapped tightly in a sheet to prevent her from moving, then the electrodes got placed all over her head.
Once that was done, her head was wrapped in gauze, then covered by a princess hat, then covered by a gauze helmet. I was concerned that Raqi would be able to take them right off, but no such thing. She has to get through 3 layers before she could even start messing with the electrodes.
She was given a backpack to wear that carries the device that monitors the electrode activity. I have to record things that happen with Raquel (ie. when she eats, sleeps, tantrums, etc.) in a log sheet, which I turn in tomorrow. The first entry is: "Time = 13:20. Mom dropped device by accident - HARD." Not really how I wanted to start it out but it is what it is...
I am amazed at how she is leaving her head alone. And the weighted backpack brings back a lot of Karin/Occupational Therapy memories when we were trying to find something like this to help her sensory issues.
But, if she was blue, she'd definitely look like a Smurf...
And Mike didn't know what to say when he first saw her...
The hardest thing so far - besides her not being able to have her beloved bath tonight - is having to watch her sleep to make sure she doesn't get the cord wrapped around her, which basically means no sleep for me. I'm just thankful this is nearly over and probably the last test she'll be needing for awhile.
On a school note, she's now throwing for the Coach, being very non-compliant with the speech therapist (she had to be removed from therapy because they were "not getting along"), and continues to make progress in class, which is a wonderful thing. I'm even seriously contemplating putting her on the bus.
Glad this is almost behind us. The EEG results take about two weeks, then it's back to the neurologist for a follow up.
Here's Gabby being the best big sister ever and feeding Raquel some yogurt - with Kermit the Frog watching, of course. At Children's, it's definitely all about the kids.
We were the only ones in the waiting room and they took us in just as soon as we arrived. Raquel was wrapped tightly in a sheet to prevent her from moving, then the electrodes got placed all over her head.
Once that was done, her head was wrapped in gauze, then covered by a princess hat, then covered by a gauze helmet. I was concerned that Raqi would be able to take them right off, but no such thing. She has to get through 3 layers before she could even start messing with the electrodes.
She was given a backpack to wear that carries the device that monitors the electrode activity. I have to record things that happen with Raquel (ie. when she eats, sleeps, tantrums, etc.) in a log sheet, which I turn in tomorrow. The first entry is: "Time = 13:20. Mom dropped device by accident - HARD." Not really how I wanted to start it out but it is what it is...
I am amazed at how she is leaving her head alone. And the weighted backpack brings back a lot of Karin/Occupational Therapy memories when we were trying to find something like this to help her sensory issues.
But, if she was blue, she'd definitely look like a Smurf...
And Mike didn't know what to say when he first saw her...
The hardest thing so far - besides her not being able to have her beloved bath tonight - is having to watch her sleep to make sure she doesn't get the cord wrapped around her, which basically means no sleep for me. I'm just thankful this is nearly over and probably the last test she'll be needing for awhile.
On a school note, she's now throwing for the Coach, being very non-compliant with the speech therapist (she had to be removed from therapy because they were "not getting along"), and continues to make progress in class, which is a wonderful thing. I'm even seriously contemplating putting her on the bus.
Glad this is almost behind us. The EEG results take about two weeks, then it's back to the neurologist for a follow up.
Friday, April 17, 2009
Allergy Follow-Up Complete
Raquel had her follow-up appointment with Dr. Welch yesterday morning. It was pretty uneventful. He received a copy of her MRI results and said that because it showed that there was just "thickened" sinus membranes and not "infected" ones, that it proved to him that she did have an hidden sinus infection and that the 20-day antibiotic took care of it. He said that by saying "thickened" meant that an infection was previously present. He recommended that I give Raquel a nose spray once per day to prevent a hidden infection from returning.
Then he apologized for not having any answers for me. He said it was frustrating for him as a doctor not to have any, and that he couldn't imagine being a mother and not able to get any. I thought that was very nice of him to acknowledge. And I'm bummed that I don't get to see him anymore. He said there was no need for a follow-up, that treatment can be handled through Raquel's regular pediatrician at this point. I guess that's a good thing. But once you start dealing with specialists, it's kind of like you are on a different level. They value your time and expect you to value theirs - so waiting in lobbies and medical rooms does not exist.
So what's next? The 24-hour EEG next Wednesday. I still don't know how they think she's going to be able to keep that thing on for 24-hours (I guess it goes into some kind of head "backpack"), but we'll just make the best of it. Her neurologist said that they would observe whatever data they could and wasn't too concerned about it not being the full 24-hours. Once that is done, we meet with the neurologist two weeks later and go from there.
Right now, glad to make it to Friday and looking forward to the weekend. Raquel is back to school on Monday.
Then he apologized for not having any answers for me. He said it was frustrating for him as a doctor not to have any, and that he couldn't imagine being a mother and not able to get any. I thought that was very nice of him to acknowledge. And I'm bummed that I don't get to see him anymore. He said there was no need for a follow-up, that treatment can be handled through Raquel's regular pediatrician at this point. I guess that's a good thing. But once you start dealing with specialists, it's kind of like you are on a different level. They value your time and expect you to value theirs - so waiting in lobbies and medical rooms does not exist.
So what's next? The 24-hour EEG next Wednesday. I still don't know how they think she's going to be able to keep that thing on for 24-hours (I guess it goes into some kind of head "backpack"), but we'll just make the best of it. Her neurologist said that they would observe whatever data they could and wasn't too concerned about it not being the full 24-hours. Once that is done, we meet with the neurologist two weeks later and go from there.
Right now, glad to make it to Friday and looking forward to the weekend. Raquel is back to school on Monday.
Friday, April 3, 2009
MRI Results In
I spoke with Dr. Mower, Raquel's neurologist, this afternoon regarding her MRI. He said that the test showed no abnormalities in her brain, that everything looked fine. What wonderful news! He did say that it was noted that she has thick sinus membranes, especially in the Maxillary area. There are 4 large sinuses - two inside the cheekbones (Maxillary) and 2 above the eyes (Frontal). When I told him that Raquel's allergist thought she had a hidden sinus infection, Dr. Mower said that the MRI results would agree with that and that she may need to go on a long-term nasal decongestant.
Next in the neurology department is the 24-hour EEG, which is scheduled at Children's Hospital on the 22nd of this month. Once that is complete, we meet with Dr. Mower two weeks later to review everything. He'll have the blood work results by then as well.
Raquel meets with Dr. Welch, her allergist, on April 16th for a follow up. It will be interesting to hear what direction he would like to go in, especially considering that she was just ending a 20-day dose of antibiotics when she had the MRI. For the MRI to show there was still something going on after being on the antibiotics that long, must mean she's got quite the infection in there. Poor baby. No wonder she's been so miserable!
In the meantime, I am welcoming Spring Break and looking forward to having fun with my girls!
Next in the neurology department is the 24-hour EEG, which is scheduled at Children's Hospital on the 22nd of this month. Once that is complete, we meet with Dr. Mower two weeks later to review everything. He'll have the blood work results by then as well.
Raquel meets with Dr. Welch, her allergist, on April 16th for a follow up. It will be interesting to hear what direction he would like to go in, especially considering that she was just ending a 20-day dose of antibiotics when she had the MRI. For the MRI to show there was still something going on after being on the antibiotics that long, must mean she's got quite the infection in there. Poor baby. No wonder she's been so miserable!
In the meantime, I am welcoming Spring Break and looking forward to having fun with my girls!
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