Just as the title of this post suggests...where did the summer go? The girls were busy...Kianna was at camp and gymnastics ...Kelsey was .......
BUSY GROWING!!!!!
Yesterday she had her 3 month visit to endocrinologist and she grew another INCH!!!! So that is what she has been busy doing....so much for the adhd med slowing that down lol!!! She has grown a total of 3 and 1/2 inches in the 1 year that we have been giving her the growth hormones!!!
Now I think the crisis of changing insurance and the medical paperwork and medicine changes and all the phone calls to pharmacies and doctors and finally to the insurance companies themselves is what blew my summer away!!! (actually it is what blew the month of August away)
August was the month of drug trials.....or drug fails for Kelsey. One insurance company covered the adhd med that worked wonderfully for her....no side effects and she was happy. Change insurance and it is no longer covered so they gave her a "comparable" med....yeah it did nothing but keep her up till midnight every night!!!! So call pediatrician and find out that we can get a prior authorization for the old medication but she has to have a failure on 2 of their approved medicationsbefore they will approve the old medication. So one to another med...which changed my child into Linda Blair...I was waiting for pea soup to spit out her mouth!!! The suggestion...up her dose..so we did and it was the worse 10 days of our lives ...well I am exaggerating just a bit but you get the point....she was miserable...I was miserable.....I wanted to bring her to the insurance company's office and let her sit in their office all day and see what it was like!
Finally it was over and she got her approval and she is back on the original med and all is well...back on the omitrope for gh and she is ready to start 2nd grade!
She has one of the 2 teachers I wanted her to have ...although she is not with the bulk of her friends...including her best friend....I know I posted before about the importance of these friends and I hope that they will still stand by her even thought they are not in the same class. I will now have to work a little harder to foster her friendships but it is worth it in the end.
Here is hoping that I can say where did the fall go.....as it means that all is well and my girls and my life is busy and happy .....time files when you are having fun!
Friday, August 24, 2012
Friday, June 1, 2012
Onward.....and upward :)
Well the GH switch was successful!!! Kelsey grew another 3/4 of an inch and gained 2 pounds in 3 months. She is happy with not having to get shots in her belly anymore....when you can't pinch an inch it hurts to get stuck there... I knew she had grown as she is finally out of toddler sizes!!!!! I can pass her 3 t's down to my niece!!!(who is 2 lol) Kelsey will be 7 in July and is finally in a 5!!!!! (ok so some of them are 5t but hey they are babyGap...I am not passing those up!)
There have been many other changes for Kels....a dx of ADHD (duh..I have been saying this since she was 2!!!!) and we have begun a med trial with her and hope to see positive changes for her. I am praying for a miracle but not holding my breath.
She has also been referred for an OT evaluation for visual-spacial LD ....I am waiting as usual with the Neurodevelopment Center to get on it and get her an appointment but since it took a year to get the first evaluation and 10 weeks to get the feedback appointment...I do not hold out hope that they move at more than a snails pace. I don't think they like me very much as I called every month till they gave her an appointment and then after I called weekly till someone got back to me about feedback.....then they left me sitting there for 45 minutes till they met with me....for 20 minutes....but they told me NOTHING that I did not know about Kelsey except confirm what I always knew and gave me the piece of paper to get the ball rolling to try other things (meds) and the power to get her the IEP when she needs it....,now I will call them to get the appointment for the OT before school starts in September so that she can get what she needs!!!!
I AM MOMMY HEAR ME ROAR!!!! HEEHEE!!!!
I am not fighting for her IEP just yet...I am going to see where she is placed for September...Miss Apple says I will be VERY happy...I am going to tell the Princess (principal) that I want her 504 kept fully intact and we will revisit in October with the new teacher once she knows Kelsey (and I have established a relationship with this teacher and have her firmly ensconced on my side) I am not letting her be placed in the collaborative yet....I just do not see it as a place for Kelsey at this time. She does well with good, positive behavior models and if that is the majority then she will model that...if poor, negative behavior is the majority then that is what she will model.......monkey see...monkey do :-) She still hasn't made the 220 wall but she is trying and every day we try those damn flash cards and I am praying for one more chance.....but she is reading at a level 8 (whatever that means) ...and now I know why her spelling, math and writing is so damn atrocious (v/s ld) but she WILL over come this too....she is too strong and determined not too.
It was a year ago that we started on this journey .....with a simple trip to the dermatologist ...and one simple question...has she always been this small? She is getting bigger with every day...onward and in this case UPWARD!!!!
There have been many other changes for Kels....a dx of ADHD (duh..I have been saying this since she was 2!!!!) and we have begun a med trial with her and hope to see positive changes for her. I am praying for a miracle but not holding my breath.
She has also been referred for an OT evaluation for visual-spacial LD ....I am waiting as usual with the Neurodevelopment Center to get on it and get her an appointment but since it took a year to get the first evaluation and 10 weeks to get the feedback appointment...I do not hold out hope that they move at more than a snails pace. I don't think they like me very much as I called every month till they gave her an appointment and then after I called weekly till someone got back to me about feedback.....then they left me sitting there for 45 minutes till they met with me....for 20 minutes....but they told me NOTHING that I did not know about Kelsey except confirm what I always knew and gave me the piece of paper to get the ball rolling to try other things (meds) and the power to get her the IEP when she needs it....,now I will call them to get the appointment for the OT before school starts in September so that she can get what she needs!!!!
I AM MOMMY HEAR ME ROAR!!!! HEEHEE!!!!
I am not fighting for her IEP just yet...I am going to see where she is placed for September...Miss Apple says I will be VERY happy...I am going to tell the Princess (principal) that I want her 504 kept fully intact and we will revisit in October with the new teacher once she knows Kelsey (and I have established a relationship with this teacher and have her firmly ensconced on my side) I am not letting her be placed in the collaborative yet....I just do not see it as a place for Kelsey at this time. She does well with good, positive behavior models and if that is the majority then she will model that...if poor, negative behavior is the majority then that is what she will model.......monkey see...monkey do :-) She still hasn't made the 220 wall but she is trying and every day we try those damn flash cards and I am praying for one more chance.....but she is reading at a level 8 (whatever that means) ...and now I know why her spelling, math and writing is so damn atrocious (v/s ld) but she WILL over come this too....she is too strong and determined not too.
It was a year ago that we started on this journey .....with a simple trip to the dermatologist ...and one simple question...has she always been this small? She is getting bigger with every day...onward and in this case UPWARD!!!!
Tuesday, March 13, 2012
INSURANCE.....
Well I guess the good news is that Kelsey grew again....another 3/4 of an inch....she has made almost 2" in the past 6 months. I am so happy (as is Kelsey!!!) Its the little things...she can reach the door handle on the back door of GAP's car....she can turn the bathroom light on by herself.....without jumping!!!....she can sit in the regular booster seat in car...(but I haven't told her that yet....)
The bad news.....the girls got new insurance and that means a med change for Kelsey.....bye bye Omnitrope hello Neutropin AQ....not to thrilled as this is the med that I have heard has more side effects than others....but we will push forward....
Now the old meds used to come in a cooler and be left off in the breezeway of the house no problem.....this company someone has to be home to sign for them and REFRIGERATE IMMEDIATELY!!!
Really....so now I have to give her an address of some one who will be home to get this all day....so I give her my dad and hope to god he will be home. (which after a few phone calls we figured that he could do it this time and after this we can have it delivered to either my mom's office or Darryl's work) but now I need to see when it comes why it can't be delivered like it used to be.....complications!!!
So far no big changes other than the med change has resulted from the change in insurance but I hold my breath waiting for the other shoe to drop.....
The bad news.....the girls got new insurance and that means a med change for Kelsey.....bye bye Omnitrope hello Neutropin AQ....not to thrilled as this is the med that I have heard has more side effects than others....but we will push forward....
Now the old meds used to come in a cooler and be left off in the breezeway of the house no problem.....this company someone has to be home to sign for them and REFRIGERATE IMMEDIATELY!!!
Really....so now I have to give her an address of some one who will be home to get this all day....so I give her my dad and hope to god he will be home. (which after a few phone calls we figured that he could do it this time and after this we can have it delivered to either my mom's office or Darryl's work) but now I need to see when it comes why it can't be delivered like it used to be.....complications!!!
So far no big changes other than the med change has resulted from the change in insurance but I hold my breath waiting for the other shoe to drop.....
Wednesday, February 1, 2012
February is Turner Syndrome Awareness Month
February is Turner Syndrome Awareness Month.
I am not a huge activist for anything....I keep most of my views to myself...I do not engage in activism or march on anything....that is just not me. But I have friends that do and I am very proud of them for it. I will support them every way I can. So today I am going to take the plunge for myself....for Kelsey....
In the beginning of this blog I wrote about what Tuner Syndrome is and how it affects girls....so I will not bore you and repeat myself....you can go back and read the first posts...
But I will link a few awesome resources for you including a neat video...
Faces of TS Video by TSSUS
The Turners Syndrome Society ...which has everything you ever wanted to know about Turners....and more! http://www.turnersyndrome.org/
and another Turner Syndrome Mom's Blog ...go meet Sarah and her cutie pie Lily Sarah's blog
So that's it for this quick PSA....
up next.....my insurance saga........
I am not a huge activist for anything....I keep most of my views to myself...I do not engage in activism or march on anything....that is just not me. But I have friends that do and I am very proud of them for it. I will support them every way I can. So today I am going to take the plunge for myself....for Kelsey....
In the beginning of this blog I wrote about what Tuner Syndrome is and how it affects girls....so I will not bore you and repeat myself....you can go back and read the first posts...
But I will link a few awesome resources for you including a neat video...
Faces of TS Video by TSSUS
The Turners Syndrome Society ...which has everything you ever wanted to know about Turners....and more! http://www.turnersyndrome.org/
and another Turner Syndrome Mom's Blog ...go meet Sarah and her cutie pie Lily Sarah's blog
So that's it for this quick PSA....
up next.....my insurance saga........
Wednesday, January 11, 2012
A Balancing Act
Now another month has slipped away from me and I have left everyone hanging here for too long so for that I apologize. I am doing my best to keep it all together lately and I must admit I don't think I am doing a very good job at it...something has to suffer...what is the phrase "jack of all trades....master of none"
Report cards came out and let me tell you I think you need a PhD to decipher them. So I will go by the work that she brings home and the homework that we do together as a barometer of how she is doing. The work she brings home is often incomplete and I know that she is struggling....but making progress as at least there is some work on the paper and it is in her writing. She is still working on her 220 sight words.....still no where near 220 but she plugs along trying her damnest to get them. We struggle to get the homework done each week....she is tired. She really has trouble with the work....I have to do it with her...no one else has the patients...sometimes it takes us a hour but we plug along....I am reading to her ....funny she takes books out of the library that are so far above her....she is running around with Tinkerbell Fairy series right now...its a damn chapter book...really people doesn't anyone encourage these kids to take out books they might actually have a chance at reading!!!
She knows all her letter sounds and can put them together to make words she wants to write. She seems to be having success using the computer to write her work since I know penmanship is a huge issue for her.
Spelling tests have started and after one success, she is having failure after failure.....and that is making me feel like a failure....Plus we have added math fact tests!!! Oh joy! One more thing! At least she is trying to memorize them and can count on her fingers the facts.....as long as we don't go above 10 we are golden!
Then there is the social aspect....I worry about her.......does she have friends....do they like her....does anyone play with her...I ask her all the time...who did she sit with today for lunch....who did she play at recess with...its always the same couple of girls and a few boys but I am skeptical of all but 2 who I know are nice to her. A friend said to me awhile ago that his daughter told him that "no one plays with Kelsey at school" ....it has stuck in my head ever since....I worry about my girl...I know that Turner's girls can have social issues....I just don't want that to be one of the hard parts of her life....she is so outgoing and loves everyone so much. It would crush her to think that the kids she talks about all the time don't like her. I know she is rough around the edges and just says what ever she is thinking but she is a good kid who just want to be friends with everyone. I don't know how to fix it....again I feel like a failure as a mom. It was easy when she was little her friends were my friends kids. School screws all that up...she has to find way herself....and when your child struggles with behavior that some find different or troubling or odd or annoying then it becomes a balancing act....
Okay...pity party for one is over....maybe I am not a failure for Kelsey....maybe it is just that a balancing act ....and I just have more balls in the air than others.....then again maybe less...........
Report cards came out and let me tell you I think you need a PhD to decipher them. So I will go by the work that she brings home and the homework that we do together as a barometer of how she is doing. The work she brings home is often incomplete and I know that she is struggling....but making progress as at least there is some work on the paper and it is in her writing. She is still working on her 220 sight words.....still no where near 220 but she plugs along trying her damnest to get them. We struggle to get the homework done each week....she is tired. She really has trouble with the work....I have to do it with her...no one else has the patients...sometimes it takes us a hour but we plug along....I am reading to her ....funny she takes books out of the library that are so far above her....she is running around with Tinkerbell Fairy series right now...its a damn chapter book...really people doesn't anyone encourage these kids to take out books they might actually have a chance at reading!!!
She knows all her letter sounds and can put them together to make words she wants to write. She seems to be having success using the computer to write her work since I know penmanship is a huge issue for her.
Spelling tests have started and after one success, she is having failure after failure.....and that is making me feel like a failure....Plus we have added math fact tests!!! Oh joy! One more thing! At least she is trying to memorize them and can count on her fingers the facts.....as long as we don't go above 10 we are golden!
Then there is the social aspect....I worry about her.......does she have friends....do they like her....does anyone play with her...I ask her all the time...who did she sit with today for lunch....who did she play at recess with...its always the same couple of girls and a few boys but I am skeptical of all but 2 who I know are nice to her. A friend said to me awhile ago that his daughter told him that "no one plays with Kelsey at school" ....it has stuck in my head ever since....I worry about my girl...I know that Turner's girls can have social issues....I just don't want that to be one of the hard parts of her life....she is so outgoing and loves everyone so much. It would crush her to think that the kids she talks about all the time don't like her. I know she is rough around the edges and just says what ever she is thinking but she is a good kid who just want to be friends with everyone. I don't know how to fix it....again I feel like a failure as a mom. It was easy when she was little her friends were my friends kids. School screws all that up...she has to find way herself....and when your child struggles with behavior that some find different or troubling or odd or annoying then it becomes a balancing act....
Okay...pity party for one is over....maybe I am not a failure for Kelsey....maybe it is just that a balancing act ....and I just have more balls in the air than others.....then again maybe less...........
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