Well a week of growth hormone shots and she is dying to know if she grew yet!!!! Too bad I don't have the heart to break it to her that they don't exactly work that fast :) She thinks she has grown...so we are running with it!
Last Thursday Kelsey and I went to Dr B's office to meet with the awesome angel of a nurse that set up the whole enchilada for us. We went in with her entire kit and I learned how to give Kelsey her shot. I was so nervous I was shaking (on the inside ....I was not going to let Kelsey see that I was scared) Kelsey sat on that exam table crying and whimpering but not the hysterical fits that I was envisioning taking place (that had taken place when she needed blood work done) M went over the kit and how to give the shot and we practiced on the "dummy" and then it was my turn and I was to give Kesley her first shot.
I went through the steps and with a shaky hand gave her a shot in the leg......her choice (leg, arm, belly or butt) ....and we put on a band aid...got hugs and she then tells me ...mommy that's not too bad!!!
I was so proud of her! We wrap up with Dr B and Nurse M and get all the side effects I need to look for (none so far ) and pack up all our gear. On our way our Dr B asks if we would like to meet with another mom and daughter with TS that happen to be there for an appointment and after a little wait we meet. It was great to meet another family IN PERSON!!!! Now I have another mom with an older girl (11) who I can bounce questions off of and feel like I am not crazy. (well that is debatable ..especially to the people who know and love me!!!) So for the next few days we learn to give shots in the different spots (she hates her butt ...she says it hurts more...but she will take it because it will make her grow and wants to be big!)
Well then along comes Hurricane Irene!!!! I was damn near terrified that we would loose power and I would loose Kelsey's meds (which need to be refrigerated) and my wonderful neighbor stops by to tell me that the generator is gassed up and ready to go just plug in and it will be running as long was we need it .....love him!!!
To the point his daughter texts me Sunday night to see if we have power because her Dad (my neighbor) would not let her take generator if Kelsey needed it.....I really do need to make him some cookies :)
So Lets see Darryl has had shot lessons..and successfully gave her one and Nanny has watched once....Kianna is fascinated and I feel like a circus side show each night as everyone wants to watch. Kelsey is bearly even flinching! She may whimper or cry a bit but she want to grow so badly that she says "just do it!!" and counts to 5!
So last night we drew a line on the door jam of her bedroom door.......8/30/11 Kelsey Ryleigh --------------
Let's see where the next one is.........
Wednesday, August 31, 2011
Monday, August 22, 2011
Big Events In the House
What a week it was.....Kelsey's kit came for her growth hormones....a visit to the ENT means another set of tubes ....the letter announcing who Kelsey's teacher will be and finally something for Kianna...her braces are coming off!!! I think I have my week a bit discombobulated up there but it was a very busy week so I will break it down for you all....
First was Kianna braces....that poor girl has had those suckers on for the past 2 years ....4 front ones to get those pearly whites in place. Finally that last tooth is in place and they are ready to come off. Hopefully this is it and she will be done. I am ready to be done! :)
Then it was there was THE LETTER....I began hearing from other moms(and dad) who their kiddos had gotten via Facebook and text message and I began to panic....I had not gotten my letter...did it mean that Kelsey got the one teacher I had beg and pleaded that she NOT get.....no it just meant that my mail man is slower than the rest of WW...lol Kelsey got her letter and we are very pleased. She is with her some good friends (good mom friends too) and good teacher. I have already spoken to her and we seem to be on the same page. I emailed her and on Saturday she called me and we spoke for a long time about Kelsey, her learning and her Turner's....Ms Apple (my name for her as I will call her for my blog) was very informed ...she let me know that after my email she looked up Turner's and looked into what educational issues Turner's girls have in the classroom...I thought that was really proactive and I liked her right away..I think Ms Apple and I will get along just swimmingly...
Then there was the ENT.....he was too was not surprised when I told him Kelsey had a dx of Turner's...."well it makes sense"...this form the man who suggested that she was allergic to milk and helped me get a rx for soy when she was a baby for WIC as WIC said the one from the pediatrician wasn't enough...WTF..... So he looks in her ears and says "well these tubes aren't working" and proceeds to tell me that she should probably have another set (#6) and that we will see if there are no infections this year and she does well with the growth hormones that maybe this maybe the last set...but if her hearing is still dependant on the tubes (the tubes keep the fluid from building up) then its a no go and she keeps the tubes .....so its a waiting game...but big news none the less...
On to the KIT....
I come home from work on Friday and there is this HUGE box in front of my back door....Kelsey is all excited to see what is inside (way too many House Party boxes have come our way LOL). So we bring it in an open her up....a big black backpack....inside is a book, a board game, a foam microphone (right up her alley) a cute stuffed dog, a sharpes container, a container to store meds in the fridge and a bag to transport meds to keep them cold with ice packs....plus the pen and directions on how to use all this stuff...so as I am reading it all she is obsessing over the microphone and the book and the growth chart (shaped like a guitar) and the stuffed animal...then it hit her...ITS FOR HER SHOTS!!!!! (wait till the meds show up on Tuesday)...But that appointment isn't till Thursday....stay tuned......
First was Kianna braces....that poor girl has had those suckers on for the past 2 years ....4 front ones to get those pearly whites in place. Finally that last tooth is in place and they are ready to come off. Hopefully this is it and she will be done. I am ready to be done! :)
Then it was there was THE LETTER....I began hearing from other moms(and dad) who their kiddos had gotten via Facebook and text message and I began to panic....I had not gotten my letter...did it mean that Kelsey got the one teacher I had beg and pleaded that she NOT get.....no it just meant that my mail man is slower than the rest of WW...lol Kelsey got her letter and we are very pleased. She is with her some good friends (good mom friends too) and good teacher. I have already spoken to her and we seem to be on the same page. I emailed her and on Saturday she called me and we spoke for a long time about Kelsey, her learning and her Turner's....Ms Apple (my name for her as I will call her for my blog) was very informed ...she let me know that after my email she looked up Turner's and looked into what educational issues Turner's girls have in the classroom...I thought that was really proactive and I liked her right away..I think Ms Apple and I will get along just swimmingly...
Then there was the ENT.....he was too was not surprised when I told him Kelsey had a dx of Turner's...."well it makes sense"...this form the man who suggested that she was allergic to milk and helped me get a rx for soy when she was a baby for WIC as WIC said the one from the pediatrician wasn't enough...WTF..... So he looks in her ears and says "well these tubes aren't working" and proceeds to tell me that she should probably have another set (#6) and that we will see if there are no infections this year and she does well with the growth hormones that maybe this maybe the last set...but if her hearing is still dependant on the tubes (the tubes keep the fluid from building up) then its a no go and she keeps the tubes .....so its a waiting game...but big news none the less...
On to the KIT....
I come home from work on Friday and there is this HUGE box in front of my back door....Kelsey is all excited to see what is inside (way too many House Party boxes have come our way LOL). So we bring it in an open her up....a big black backpack....inside is a book, a board game, a foam microphone (right up her alley) a cute stuffed dog, a sharpes container, a container to store meds in the fridge and a bag to transport meds to keep them cold with ice packs....plus the pen and directions on how to use all this stuff...so as I am reading it all she is obsessing over the microphone and the book and the growth chart (shaped like a guitar) and the stuffed animal...then it hit her...ITS FOR HER SHOTS!!!!! (wait till the meds show up on Tuesday)...But that appointment isn't till Thursday....stay tuned......
Wednesday, August 10, 2011
So my education begins
I have always been a good student. I love to read. Well I am beginning to rethink that statement as I spent the first few weeks of Kelsey's dx reading, basically what Turner's Syndrome was all about, how it would affect her physically....as being short is what started it all :) and into the growth hormones as that was a huge part of the last doctors appointment she had. Then there was all the other appointments to keep us busy...cardiology....kidneys....dermatology (which sized and counted her moles...she was too cute pointing them out and count with the dr.) Then I began my networking and joining, reaching out, finding other moms with Turner's Girls, joining web groups and email rings and Facebook Groups, national foundations and societies, and finally writing this here blog.....but now I am taking on my biggest fight ..one I have been picking at bit by bit year after year ....Kelsey's learning.....
Kelsey has always struggled with learning....she just gets things differently than other kids do. She needs more time to process what is said to her, she needs to be shown concrete examples, she is very hands on in her learning and she can usually only do it one way until she firmly grasps the concept and then and only then maybe can you change it. My favorite story of when Kelsey was about 11 months and we were working on what sounds animals make...." Kelsey who says mooooo...." she would point to the cow...Point to the cow and ask her what it says and poor baby would just look at you.....
When Kelsey was still in Early Intervention, there was question of executive functioning disorder...it all makes sense now....her sensory integration (which through therapy that I continued (thanks to an awesome OT who taught me what to do and gave me the tools to work with her)when the school department wouldn't because she wasn't "far enough behind"...the story of her life LOL)then when I presented her at 3 and 1/2 year old it was her hearing was poor and that's why she was motor driven (after given an observation from a colleague from the Providence Center who came to observe Kelsey for me so that I could bring ti to the school special ed department for as I wanted her tested as she wasn't progressing in preschool like the other kids...she failed the Outreach screen in Providence but somehow passed in West Warwick ...makes you think?) and now with Kindergarten behind us ( a struggle) and her motor driven ways (a constant battle) and my new found language ...Turner's Syndrome, Nonverbal Learning Disorder, Spacial Relationships, Difficulty in Math and Memory, Interpersonal Relationships and Behavioral Difficulty....
I have picks the minds of some of the best teachers I know and plan to keep bugging them and others (so watch out if I haven't gotten to you yet... I am coming.....) Plus the school department has to remember not only am I Kelsey's mom ....I am one of them....I am an educator....I will be her best advocate and I will not stop at no, I will not accept anything but the best for her.....this time I have what they want........a diagnosis......and I am educated....I am her mom.....
Kelsey has always struggled with learning....she just gets things differently than other kids do. She needs more time to process what is said to her, she needs to be shown concrete examples, she is very hands on in her learning and she can usually only do it one way until she firmly grasps the concept and then and only then maybe can you change it. My favorite story of when Kelsey was about 11 months and we were working on what sounds animals make...." Kelsey who says mooooo...." she would point to the cow...Point to the cow and ask her what it says and poor baby would just look at you.....
When Kelsey was still in Early Intervention, there was question of executive functioning disorder...it all makes sense now....her sensory integration (which through therapy that I continued (thanks to an awesome OT who taught me what to do and gave me the tools to work with her)when the school department wouldn't because she wasn't "far enough behind"...the story of her life LOL)then when I presented her at 3 and 1/2 year old it was her hearing was poor and that's why she was motor driven (after given an observation from a colleague from the Providence Center who came to observe Kelsey for me so that I could bring ti to the school special ed department for as I wanted her tested as she wasn't progressing in preschool like the other kids...she failed the Outreach screen in Providence but somehow passed in West Warwick ...makes you think?) and now with Kindergarten behind us ( a struggle) and her motor driven ways (a constant battle) and my new found language ...Turner's Syndrome, Nonverbal Learning Disorder, Spacial Relationships, Difficulty in Math and Memory, Interpersonal Relationships and Behavioral Difficulty....
I have picks the minds of some of the best teachers I know and plan to keep bugging them and others (so watch out if I haven't gotten to you yet... I am coming.....) Plus the school department has to remember not only am I Kelsey's mom ....I am one of them....I am an educator....I will be her best advocate and I will not stop at no, I will not accept anything but the best for her.....this time I have what they want........a diagnosis......and I am educated....I am her mom.....
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