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........

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...........

And we have growth!!!!!

So yesterday Kelsey and I go to the endo for her 3 month check up. She gets her height and weight done...I can just see her itching to know if she grew but the medical assistant isn't giving anything up.....we are lead to the room and the med nurse comes in to see how the shots are going...to which I voice my concern about the amount that the pen drips. I guess that it is the "cheap" version (gee thanks medical insurance) but hey what are you going to do..we just give shots really really fast :-)  I am becoming a pro at attaching the needle, swiping her skin and jabbing her then getting the needle off ASAP!

So Dr comes in an is all SMILES ....actually ear to ear smiles....she is thrilled with Kelsey's progress...WE ARE ON THE CHART!!! WOOO HOOOO!!!! She is happy with everything...no changes in the medication and suggest that we get a consult for ADHD meds...well that's nothing new ...she is keeping a close eye on the vitiligo and the moles on Kelsey's skin and we go back in February!!!!

So Kelsey looks right at DR B and said in only the way Kelsey can..." So How much did I grow?"
Dr B looks right at her and says ..." a whole inch"
Kelsey...... "A WHOLE INCH"  (Hand about a foot and a half apart) WOW I AM AWESOME!!!(and yelling about as loudly as she can as excitedly as she can)
DR B....."Yes you are Kelsey....yes you are"  (mommy with tears in her eyes)
Dr B then tells me that the first year of growth hormone is when we usually see the most big gains and that she will slow down again....but I was just so glad to see her have a gain and that the shots are doing their thing.
Can you imagine what it would have been like to go home that night and have to try to convince her to get a shot if there had been no growth.....I am not sure I could have even given it to her....
but she stuck her leg out with a smile last night!

Changes......

Wow .....it's been over a month since I have been here...how did that happen...oh yeah I have 2 kids...a job ...and a crazy life!!!!! So here is what has been happening with Miss Kelsey since we last met....school has begun to challenge her.... she is hysterical over "tests".  Math "tests", Spelling "test", the 220 club, just about everything she encounters she feels like its a "test" but let me tell you she is figuring it out. Ms Apple is giving her spelling "tests" verbally...she can spell the words to Ms Apple and get credit for the ones she can spell correctly ....getting it on paper is just not going to happen right now. The math is done with the resource teacher so it attacked bit by bit and she is getting more number sense each day....but let me tell you her retention is still very poor. She gets very frustrated with me and I can only push her so far each day after school before she burns out.  Reading is coming along also...a few more sight words from her dolch list ...no where the 220 she need to be at but we have all year :-)

The biggest change was she had new ear tubes put in...out with the old non working ones and in with new (hopefully) working ones!!!!!
She and I  went to the ENT Center for the first time and it was wonderful! No trip to Hasbro this time! We had to be there at 7am and home by 9am! Dr said she had a tremendous amount of scar tissue in her right ear. He was able to repair some damage left behind by the last tube that had embedded itself in the ear canal and fit the tube in properly. She had a pretty bad bleed from the right ear about 2 hours after surgery. It was like nothing we had every experienced before. The blood was pouring our of her ear ....but after a bit of a frantic call to the ENT Center to the Dr ....ear drops and some gauze she was in the clear.

Hockey has begun and I forgot how much I love to watch my little girl play a game she loves. She is still learning the game and the skills but she is doing well.  She is a good little skater and if she can stop weld her stick like a tomahawk she will do just fine. (oh yeah and stop fighting with every kid who take the puck from her!)  She is on a squad that all the kids are at least 6-12" taller than her with one kid being at least 4'10....but Kelsey will hold her own ...she just has to skate faster and play harder....and I bet she is the only one who carries her own hockey bag ...even though its as big as she is!

So that is about all .....Kianna is well...got her braces off....looks beautiful....and loving all the foods that have been banned for the past 2 years. Gymnastics season is about to kick off...meet next weekend.....and we are just busy, busy, busy.... but each day I am taking time to be thankful as it is that time of year.....if we are facebook friends you will see...each day I will post from the serious to to silly ...what I am thankful for....
Stay tuned ...I promise not be away for so long this time  :-)

All is well.....so far.....

So we have made it through the first few weeks of school....through MDT meetings, a 504 plan and 2 Open Houses.....plus a ton of "extra stuff"....gymnastics is super busy...its almost hockey season....Kianna is doing show choir ...CCD has started....work is crazy....but.....

Let me say I love Mrs Apple....she really seems to get Kelsey. The first day of school was our MDT meeting (which was supposed to be the 3rd day of school but thanks to good old Tropical Storm Irene school did not exactly start on time). Mrs Apple says to me ...." Does Kelsey's Turner's make her have to go to the bathroom frequently? Me:  Ah no ...that is her defence mechanism....what did were you doing in the classroom? Mrs Apple: It was journal time ..but all I wanted them to do was color them..Me: ( thinkingg to myself .....Kelsey heard Journal and screwed out of there ) yeah she has a hard time with  journal writing...
Mrs Apple:  Ohhhhh....
And so the process of Kelsey's 504 began.....it ended on a good note....I got what I wanted which was her resource services intact ..... and Kelsey also has a plan for help with making sure she can reach things and has extra help and time to complete things as needed along with behavioral assistance and We will revisit after report cards come out and if she is failing she will get tested for IEP at my request. Homework has just started so that maybe an entire post ...stay tuned lol!!!

I am also working on getting Kelsey to sleep in her own bed all night...I AM EXHAUSTED!!!!! She wakes the entire house up...going from bed to bed...she doesn't like to be alone :-( is her excuse....I will get to the bottom of this but I need my sleep too......Then again why should this be anything new ...she has never slept through the night...NEVER !!!!!

Her shots are going very well. She is a pro! I am so proud of her. ....even when I stuck her the other night and bent the needle! I thought I broke it off but it was just bent....I am still learning but she is just the best about it all. She even lets Darryl do the one in her arms.

On another note....thank you all for the awesome support over the past weeks.....Dad is doing so much better.  My Dad had a hear attack on Friday 9/9 and as he has put it as only he can...he is glad to be on this side of the grass!  And we are VERY glad he is too!  He is doing very well...tired but learning a whole new way of life right now....the heart attack was one thing ...its the diabetes that is another right now. But he is up and  about and spending time with the girls and that's what he loves so we just keep going.
Talk to you all soon.....
PS.....Check my FB on 9/30 for a PSA about Turner's Syndrome and other growth related disorders!!!

Did I grow yet?!?!?! Just do it Mom!

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.........

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......