I'm very happy to report that Raquel did well at school this week! What a relief. It's been such a long process it seems. She will have PT (applied physical education) once a week, speech twice a week, and occupational twice a week. There is also a behavior therapist, but I don't think she has regular times.
She had her first applied physical education session with Coach Tim on Tuesday. He said he didn't push her too much, but she displayed no behaviors - not during the session or in the classroom afterwards. Yesterday, Raquel actually fell asleep in the sensory room when they put her in the ball pit. She was playing around in it and then all of a sudden got really quiet and they realized she was sleeping. Today, she fell asleep at circle time. Hopefully sleeping in class won't be her normal thing. :-)
I also spoke with my new social/case worker at Regional this week. Her name is Heather, and she'll be coming by on Monday, March 9th, to meet with us and go over Raquel's goals for the next year. I think I will have her until Raquel turns five.
It's been a very busy but productive week. Looking forward to a quiet and restful weekend!
Friday, February 27, 2009
Thursday, February 26, 2009
Initial Neurological Exam Complete
Raquel had her first neurological exam at Children's Hospital yesterday morning. I was very nervous, didn't know what to expect or if I was prepared to hear the words from the doctor. But it went really well!! He could not have been more encouraging - telling us that we had no reason not to feel very optimistic about Raquel's outcome.
What was really nice was to finally get some answers. He completely ruled out certain things, giving us detailed information as to why a particular disease or syndrome wasn't the case. He doesn't feel she is autistic, doesn't feel she has cerebral palsy, down syndrome, or any metabolic disease. When I asked him what diagnosis he would give her - after his 45 minute exam, plus reading the reports from the Regional Center as well as her medical file - he said, drum roll please... Mild Pervasive Developmental Disorder.
How could he say that after only seeing Raquel for the first time? Because he was able to rule out a lot of things by how she was interacting with Gabby. Gabby always seems to play such an important role in this. They were playing this game they always play with each other. Gabby says, "Head!" to Raquel and Raquel touches her head. Then Gabby says, "Tummy!" and Raquel acts like she's going to touch her tummy, then either shakes her head no, with a huge smile on her face, or she'll touch her head again while laughing hysterically. The neurologist loved watching this exchange - especially since Raquel was really teasing Gabby and being very playful. He was also impressed with how much Raquel understands words. It was very clear to him that she understands much more than she says. Those two things were pretty huge to him. That, and the fact that she doesn't have any atypical physical characteristics that stood out. He said she is just a beautiful, proportionate, little girl.
He put in the request for an MRI as well as a 24-hour EEG. The EEG is to rule out seizures, which he doesn't think she is having but since it's in the file that she lost speech at one point, wants to have this done to document that it's been ruled out. We are on a waiting list for these tests - and probably a 2-month one. Two weeks after the EEG has been completed, we will meet with the neurologist again to review the results of the tests, as well as the chromosome blood screens we did after the appointment.
By no means am I saying that Raquel doesn't have any issues. Of course she does. It was just really wonderful to hear a specialist tell us Mild PDD - especially after the school district painted such a horrible picture of her. Last night was the first night since the IEP that I think I really slept okay. Once I left the neurology appointment, a huge weight was lifted. Even though I never believed the district reports and thought their assessments with Raquel were a complete joke, I still had "severe" in the back of my head, just wondering if maybe I wasn't seeing things accurately. But when I asked the neurologist flat out if he would consider Raquel "severe", he just about fell out of his chair in disbelief and asked me why I would even THINK such a thing. That was all the reassurance I needed to hear. That, plus him telling me to stop blaming myself, that this is not my fault.
The neurologist also prepared us for not ever knowing what the underlying cause is, that the hardest part of his job is to be unable to tell parents what or where or when or how something went wrong.
The bottom line is this: a true diagnosis is irrelevant at this point. What IS relevant is early intervention, and getting her the most therapy and most services available to her. The more she gets the younger she is, the better. And that's what I'll keep pushing for. If the test results show something different, then we'll make adjustments then. Right now we'll just keep moving forward until we hear otherwise.
What was really nice was to finally get some answers. He completely ruled out certain things, giving us detailed information as to why a particular disease or syndrome wasn't the case. He doesn't feel she is autistic, doesn't feel she has cerebral palsy, down syndrome, or any metabolic disease. When I asked him what diagnosis he would give her - after his 45 minute exam, plus reading the reports from the Regional Center as well as her medical file - he said, drum roll please... Mild Pervasive Developmental Disorder.
How could he say that after only seeing Raquel for the first time? Because he was able to rule out a lot of things by how she was interacting with Gabby. Gabby always seems to play such an important role in this. They were playing this game they always play with each other. Gabby says, "Head!" to Raquel and Raquel touches her head. Then Gabby says, "Tummy!" and Raquel acts like she's going to touch her tummy, then either shakes her head no, with a huge smile on her face, or she'll touch her head again while laughing hysterically. The neurologist loved watching this exchange - especially since Raquel was really teasing Gabby and being very playful. He was also impressed with how much Raquel understands words. It was very clear to him that she understands much more than she says. Those two things were pretty huge to him. That, and the fact that she doesn't have any atypical physical characteristics that stood out. He said she is just a beautiful, proportionate, little girl.
He put in the request for an MRI as well as a 24-hour EEG. The EEG is to rule out seizures, which he doesn't think she is having but since it's in the file that she lost speech at one point, wants to have this done to document that it's been ruled out. We are on a waiting list for these tests - and probably a 2-month one. Two weeks after the EEG has been completed, we will meet with the neurologist again to review the results of the tests, as well as the chromosome blood screens we did after the appointment.
By no means am I saying that Raquel doesn't have any issues. Of course she does. It was just really wonderful to hear a specialist tell us Mild PDD - especially after the school district painted such a horrible picture of her. Last night was the first night since the IEP that I think I really slept okay. Once I left the neurology appointment, a huge weight was lifted. Even though I never believed the district reports and thought their assessments with Raquel were a complete joke, I still had "severe" in the back of my head, just wondering if maybe I wasn't seeing things accurately. But when I asked the neurologist flat out if he would consider Raquel "severe", he just about fell out of his chair in disbelief and asked me why I would even THINK such a thing. That was all the reassurance I needed to hear. That, plus him telling me to stop blaming myself, that this is not my fault.
The neurologist also prepared us for not ever knowing what the underlying cause is, that the hardest part of his job is to be unable to tell parents what or where or when or how something went wrong.
The bottom line is this: a true diagnosis is irrelevant at this point. What IS relevant is early intervention, and getting her the most therapy and most services available to her. The more she gets the younger she is, the better. And that's what I'll keep pushing for. If the test results show something different, then we'll make adjustments then. Right now we'll just keep moving forward until we hear otherwise.
Monday, February 23, 2009
Happy Birthday, Gabby!
Today, Gabby turned 7 years old. I spent most of the day either thinking back to her labor and delivery, or chasing Raquel around the house. Raquel was in rare form today - wanting my undivided attention at all times. And let's just say that patience was running very thin. I had all these things planned that I wanted to do with Gabby - arts & crafts, nails, making "perfume", etc., and Raquel wanted no part of it. She wanted US, and on her terms. Finally, I apologized to Gabby for her messing up our plans, and that's when it really sank in about how she's aging.
We had a purse layed out to paint & decorate for her to take to school tomorrow. We had a diary ready for her to unlock and write & draw in. We had cake to bake, and new clothes to try on. But all Gabby could say to me was, "Mom!! She can't help it! Don't be mad at her! She's the best sister ever!"
I often find myself feeling sorry for Gabby - for her not having a "typically" developing sister. I think about how different things would be if Raquel was right on target for her age. But you know what? Gabby doesn't even care about any of that! She has a cousin (Taliah) who is Raquel's age, and they are able to play so functionally when they are together. But Gabby never questions Raquel's abilities or complains about any of it. Instead, she is the absolute opposite and embraces her sister with open arms.
Thank you, Gabby, for constantly reminding me what's important in life. You are the best. Happy Birthday!
Friday, February 20, 2009
District Talks Resume
Earlier this week, the district coordinator, Tracy, called me to find out why Raquel wasn't in school. Needless to say, I went off on her. She asked me when I would consider putting her back in class, and I told her that I would consider it once they start treating her like Raquel instead of just a number. I felt better after the conversation - was really able to voice my frustrations with the process - and also remind her that I requested a Behavior Support Plan at the IEP, and that the district denied it. And what did she need on her first day of class? A Behavior Support Plan. I told her that until the district acknowledges that I know her best and that my voice should count, she wouldn't be going near the classroom.
She agreed that things weren't handled in the best manner, but really wants her in school and that school is the best place for her. I don't agree with that - she continues to talk more and more, is getting into her little routines, and is very happy and content around here. Why mess with something that is working? Because we need the therapy resumed. Early intervention is the key, and the more therapy she gets the younger she is, the better her outcome. So I asked Tracy to provide me with a therapy schedule so I can decide when and where I can take her.
I spoke with her this afternoon and they are requesting that I take her to school from 1pm -2:15pm daily. 1pm is when therapy starts. I agreed to try it out next Tuesday when she will be able to have her session with Coach Tim. He is the only one that Raquel seemed to like (because he bailed her out of two really bad assessments) so I figure that if anyone has a shot at it, it's the Coach. We'll have to see what happens. She can't go on Wednesday because that is when she has the neurological appointment, and Thursday I have to pick Gabby up at 2:15pm and obviously can't be at two schools across town from each other at the same time.
I did hear from Regional this week and have been assigned a new case worker. The last one I had only has children up to age 3, so now that she's turned 3, her file was transferred to another person who will handle her up until, I think, age 5. I haven't had the opportunity to speak with her yet but plan on doing so at some point next week. She will be able to help me determine what my options are if I keep her out of a school setting. Raquel still qualifies for ongoing services regardless of her being in school or not. I just need to figure out exactly what is involved and how to go about getting it started.
She agreed that things weren't handled in the best manner, but really wants her in school and that school is the best place for her. I don't agree with that - she continues to talk more and more, is getting into her little routines, and is very happy and content around here. Why mess with something that is working? Because we need the therapy resumed. Early intervention is the key, and the more therapy she gets the younger she is, the better her outcome. So I asked Tracy to provide me with a therapy schedule so I can decide when and where I can take her.
I spoke with her this afternoon and they are requesting that I take her to school from 1pm -2:15pm daily. 1pm is when therapy starts. I agreed to try it out next Tuesday when she will be able to have her session with Coach Tim. He is the only one that Raquel seemed to like (because he bailed her out of two really bad assessments) so I figure that if anyone has a shot at it, it's the Coach. We'll have to see what happens. She can't go on Wednesday because that is when she has the neurological appointment, and Thursday I have to pick Gabby up at 2:15pm and obviously can't be at two schools across town from each other at the same time.
I did hear from Regional this week and have been assigned a new case worker. The last one I had only has children up to age 3, so now that she's turned 3, her file was transferred to another person who will handle her up until, I think, age 5. I haven't had the opportunity to speak with her yet but plan on doing so at some point next week. She will be able to help me determine what my options are if I keep her out of a school setting. Raquel still qualifies for ongoing services regardless of her being in school or not. I just need to figure out exactly what is involved and how to go about getting it started.
Saturday, February 14, 2009
Wanting Some Answers
Although getting away from daily in-home therapy has been a refreshing change, it would be a stretch to say that things are progressing the way I had planned.
I was pretty confident that at her transition, I would know what was going on with Raquel, that she'd be given a diagnosis and then I'd be on my way searching for the best treatment program for her. Let's just say that isn't happening. I am no closer today than I was at the start of all of this. And I've been told so many conflicting things by so many people, it only makes the process more confusing. Yes, she has and continues to improve, and therapy is a HUGE part of this. I am so thankful that I had such wonderful people surrounding us and helping her grow. It's just frustrating because a year later, I still don't know what caused the delay in the first place.
I found out last week that the neurology appointment on the 25th is just an initial consultation. No tests will be performed at this visit. Raquel will basically have her first neurological exam and then the doctor will make recommendations on what tests should be done, and then I wait for an appointment. Kind of a bummer, but I guess that makes sense.
I am really looking forward to the allergist appointment on the 5th. Not that I'm looking forward to him doing the skin testing - I'm told that he can do it on me first so I'll know how it feels - but I'm so happy that I will finally have an ANSWER to something about Raquel. The skin test itself is supposed to take about an hour, and when I leave his office, I will know exactly what Raquel is allergic to. What wonderful news - especially considering this past week has been really hard dealing with her sinuses. I don't know what it is that is setting her off, but it's something and she has been very miserable at times. She will be playing and acting fine, then all of a sudden starts rubbing her nose and sneezing, her eyes start to water, and then she starts hitting her forehead while usually saying, "Owieee!" I'm assuming that must be a sinus headache, and from what I've heard from those suffering with them, they can be pretty excruciating. Antihistamines help, but also make her very groggy, and she can't take them five days prior to her allergy appointment.
I really feel that a big part of this has to do with her allergies. She just hasn't been the same since we had the fires out here and she developed croup. She has had sinus problems ever since. And to see her laying on the floor, holding her nose and in obvious pain, has been tough to watch. It will be a relief to finally know what she is allergic to and how to deal with it.
As far as the school district goes, I am still waiting for the current therapy schedule so I can have her sessions resumed. Hopefully I'll hear from them this week. If not, I'll find out who my new contact is at Regional and see about getting some in-home sessions again.
I was pretty confident that at her transition, I would know what was going on with Raquel, that she'd be given a diagnosis and then I'd be on my way searching for the best treatment program for her. Let's just say that isn't happening. I am no closer today than I was at the start of all of this. And I've been told so many conflicting things by so many people, it only makes the process more confusing. Yes, she has and continues to improve, and therapy is a HUGE part of this. I am so thankful that I had such wonderful people surrounding us and helping her grow. It's just frustrating because a year later, I still don't know what caused the delay in the first place.
I found out last week that the neurology appointment on the 25th is just an initial consultation. No tests will be performed at this visit. Raquel will basically have her first neurological exam and then the doctor will make recommendations on what tests should be done, and then I wait for an appointment. Kind of a bummer, but I guess that makes sense.
I am really looking forward to the allergist appointment on the 5th. Not that I'm looking forward to him doing the skin testing - I'm told that he can do it on me first so I'll know how it feels - but I'm so happy that I will finally have an ANSWER to something about Raquel. The skin test itself is supposed to take about an hour, and when I leave his office, I will know exactly what Raquel is allergic to. What wonderful news - especially considering this past week has been really hard dealing with her sinuses. I don't know what it is that is setting her off, but it's something and she has been very miserable at times. She will be playing and acting fine, then all of a sudden starts rubbing her nose and sneezing, her eyes start to water, and then she starts hitting her forehead while usually saying, "Owieee!" I'm assuming that must be a sinus headache, and from what I've heard from those suffering with them, they can be pretty excruciating. Antihistamines help, but also make her very groggy, and she can't take them five days prior to her allergy appointment.
I really feel that a big part of this has to do with her allergies. She just hasn't been the same since we had the fires out here and she developed croup. She has had sinus problems ever since. And to see her laying on the floor, holding her nose and in obvious pain, has been tough to watch. It will be a relief to finally know what she is allergic to and how to deal with it.
As far as the school district goes, I am still waiting for the current therapy schedule so I can have her sessions resumed. Hopefully I'll hear from them this week. If not, I'll find out who my new contact is at Regional and see about getting some in-home sessions again.
Tuesday, February 10, 2009
Come Play!
This morning, Raquel's babbling woke me at 4:15am. Ever since we got her the new bed, she has been consistently sleeping until atleast 6:30am, so I was very surprised to hear her awake so early. As soon as I cracked open her door, I was greeted with a very animated, "Mama! Come play!" Even though it was shortly after 4am, I've got to say that Raquel has this smile that melts my heart, and, although I knew that both of us needed our sleep, I caved in and layed on her bed, where I was immediately smothered with hugs and kisses. We didn't play, though. I just wanted some one-on-one time with her, and, after about 30 minutes, she fell right back to sleep.
But I didn't. I was dreaming of coffee by then. And then my mind started the usual racing and something popped in that I wasn't really expecting: a comment in Raquel's final medical evaluation done at Regional. The doctor was great, very encouraging, and says in her report that:
"Raquel is a beautiful little girl with no dysmorphic features" and that "she has generalized developmental delays of unclear etiology."
She goes on to say regarding family history: "Raquel has a 6-year old sister who is healthy and normal developmentally. Raquel's mother lost a pregnancy at 24-weeks secondary to Trisomy 18 in the fetus. She also had two other miscarriages."
The part that popped into my head was her little side note where she said: "It should be noted that Raquel's mother was offered an amniocentesis during her pregnancy but declined, so no genetic testing has been done."
I don't know why that bothered me this morning, but it did. True - I did refuse amnio, but only because of the risks of it causing a miscarriage. I was under the care and guidance of a fabulous OB-GYN (who always makes me want to have another baby whenever I see her!), and I did have a very intensive ultrasound outside of my OB-GYN, where they were able to see all of her organs in high definition and confirm that everything was working the way it should and where it was supposed to be.
But then I started to really think about the comment. How is it relevant that I declined the procedure? What if I would have agreed to the amnio and found out something was wrong? Would that have changed anything? Absolutely not! I'm a big believer in not getting more than you can handle, even though that's questionable at times. But spending 4am with Raquel this morning just confirmed how special she is and how thankful I am to have her as my daughter.
But I didn't. I was dreaming of coffee by then. And then my mind started the usual racing and something popped in that I wasn't really expecting: a comment in Raquel's final medical evaluation done at Regional. The doctor was great, very encouraging, and says in her report that:
"Raquel is a beautiful little girl with no dysmorphic features" and that "she has generalized developmental delays of unclear etiology."
She goes on to say regarding family history: "Raquel has a 6-year old sister who is healthy and normal developmentally. Raquel's mother lost a pregnancy at 24-weeks secondary to Trisomy 18 in the fetus. She also had two other miscarriages."
The part that popped into my head was her little side note where she said: "It should be noted that Raquel's mother was offered an amniocentesis during her pregnancy but declined, so no genetic testing has been done."
I don't know why that bothered me this morning, but it did. True - I did refuse amnio, but only because of the risks of it causing a miscarriage. I was under the care and guidance of a fabulous OB-GYN (who always makes me want to have another baby whenever I see her!), and I did have a very intensive ultrasound outside of my OB-GYN, where they were able to see all of her organs in high definition and confirm that everything was working the way it should and where it was supposed to be.
But then I started to really think about the comment. How is it relevant that I declined the procedure? What if I would have agreed to the amnio and found out something was wrong? Would that have changed anything? Absolutely not! I'm a big believer in not getting more than you can handle, even though that's questionable at times. But spending 4am with Raquel this morning just confirmed how special she is and how thankful I am to have her as my daughter.
Saturday, February 7, 2009
A Very Happy Girl
As the days go on, Raquel is becoming a very content little girl and continues to make lots of progress. The biggest thing I'm noticing right now is not only her increasing vocabulary - it's her understanding of words. I've always known that she understands more than she will say, but now she intently listens to conversations I have with Gabby and responds to what we are saying. For instance, Gabby and I were talking about taking a drive to get some water or going for walk instead. We were going back and forth about what we wanted to do when Raquel says, "Go walk! Go walk!" and then took the PECS of the stroller off our back door.
I'm also noticing that her balance is improving. I'm back to doing her original sensory diet set up by Karin - mostly the fitness ball bouncing and deep joint compressions. When I notice her getting a bit unstable on her feet, she pushes the weighted car or we do jumping. I've stopped the crashing into the bean bag completely and have started swinging her a lot again during the day.
She is also becoming more and more demanding of Mike's attention - tapping his leg and when he turns to see what she wants, holds her arms up with a big smile on her face, saying that she wants HIM.
Putting the music in her room has been a wonderful transition for her. She still loves listening to it, but now that it's in her room, she's able to play with toys at the same time and is becoming better at that as the days progress. This is also allowing her to become more and more independent when playing on her own and it gives her and Gabby a place to be sisters, act silly, dance, and laugh, laugh, laugh, which is music to my ears.
As far as school goes, I've decided to keep her home utilizing my respite care until her neurological testing is complete and we are able to determine what is really going on with her. I know this is not what the district recommends, but it is what I feel 100% in my heart is the right thing to do. I spoke with her teacher on Friday and she will be emailing me her therapy schedule so I can begin taking her to class for the therapy sessions alone, if I choose to do so. Until then, I've been keeping up with the sessions the best I can. I'm fortunate to have participated in 99% of them and know how they work - and have a binder full of notes from every therapist with suggestions.
Gabby continues to be a huge part of this. On the last ABA session, the team told Gabby how proud they were of her and how much she is helping her sister by playing "therapist." Of course, she has no plans of letting them down and has made therapy play as functional as is gets. The other day, Raquel came out of her room with a puzzle piece and saying, "Put!" Gabby immediately set up the matching program and, when ready, handed Raquel back the piece and said, "Okay Raquel. Put with same.", which she immediately did. Raquel doesn't get irritated nearly as much during Gabby's sessions, which I'm assuming is because they aren't two hours long!
I'm also noticing that her balance is improving. I'm back to doing her original sensory diet set up by Karin - mostly the fitness ball bouncing and deep joint compressions. When I notice her getting a bit unstable on her feet, she pushes the weighted car or we do jumping. I've stopped the crashing into the bean bag completely and have started swinging her a lot again during the day.
She is also becoming more and more demanding of Mike's attention - tapping his leg and when he turns to see what she wants, holds her arms up with a big smile on her face, saying that she wants HIM.
Putting the music in her room has been a wonderful transition for her. She still loves listening to it, but now that it's in her room, she's able to play with toys at the same time and is becoming better at that as the days progress. This is also allowing her to become more and more independent when playing on her own and it gives her and Gabby a place to be sisters, act silly, dance, and laugh, laugh, laugh, which is music to my ears.
As far as school goes, I've decided to keep her home utilizing my respite care until her neurological testing is complete and we are able to determine what is really going on with her. I know this is not what the district recommends, but it is what I feel 100% in my heart is the right thing to do. I spoke with her teacher on Friday and she will be emailing me her therapy schedule so I can begin taking her to class for the therapy sessions alone, if I choose to do so. Until then, I've been keeping up with the sessions the best I can. I'm fortunate to have participated in 99% of them and know how they work - and have a binder full of notes from every therapist with suggestions.
Gabby continues to be a huge part of this. On the last ABA session, the team told Gabby how proud they were of her and how much she is helping her sister by playing "therapist." Of course, she has no plans of letting them down and has made therapy play as functional as is gets. The other day, Raquel came out of her room with a puzzle piece and saying, "Put!" Gabby immediately set up the matching program and, when ready, handed Raquel back the piece and said, "Okay Raquel. Put with same.", which she immediately did. Raquel doesn't get irritated nearly as much during Gabby's sessions, which I'm assuming is because they aren't two hours long!
Sunday, February 1, 2009
Raquel's Song on SNL
In case you missed it, here's how "I'm Yours" sounded last night on Saturday Night Live. Of course, she was fast asleep...
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