Turner Syndrome Awareness Month ....It's her thing...

February is Turner Syndrome Awareness Month.....as most of you know I am not a huge advocate or one who stumps for causes but I need to tell Kelsey's story to as many people as I can as it has made a huge difference in her life to have answers to questions that have plagued her since birth. If you go back to the beginning of this blog you can read about how I found out that Kelsey had Turners and the journey that she and I have had to get us here a few years later,.....we are still struggling....I will never say life is easy ....I do not think it ever will be for her or me but we will always make the best of what we have and let me tell you she lives it to the fullest every day....All it took was one question of why is she so small and it took off....

It has been awhile since I updated all of you so here it is....she is not doing great in the height and weight department ....so endo gave me an ultimatum .....gain and grow or change something....

From October to March Kelsey plays 2 sports....gymnastics and hockey...both very active and strenuous sports and this is what we have figured out are causing her weight loss as she is on the ice 2 days a week and in the gym 6 hrs a week. So we have cut back her conditioning at the gym and no extra skating as she can't burn the extra calories. I am giving her all the extra snacks and meals I can fit in ....but she is also going through another period of lack of hunger (thank you ADHD meds) but she will snack so I just keep giving her high calorie food and pray for the best....

School continues to be a struggle to....although she loves it and tries so hard she is just not keeping up with the work. Multiplication is a bit easier for her and she is getting it better than adding and subtracting but anything with reading is still a sticking point. Looking into testing again as there has to be more to the story than just ADHD.....there always is....

Last Saturday she had a hockey game and scored 3 goals in the game and stick handling and skating is second nature "she was in her zone" and was thrilled with herself and from there went to her first gymnastics meet and struggled as it showed that her memory is affected as she has to recite the routines as she does them and no matter how much she loves the sport its not "her sport" ...she took 6th place on vault .... Just last weekend we were watching the Gabby Douglas Story on TV and she turns to me and says "mom I am going to play in the Olympics....but not in gymnastics..that's Kianna's thing.....I am going to play hockey....." And you know what I think she is right....she will do whatever she puts her mind to ....she has so much heart and determination....

So this is the year I am going to let her follow her dreams...she wants to try out for travel hockey......so I am going to let her....we talked about it and it may mean coming out of the gym for awhile as travel hockey is very time consuming but she is dedicated...

So no matter what Turner's or life for that matter is throwing her way she is going to tackle it and go full force ...with me by her side.....and it's her thing.....

Little news.....

Little news....she grew 1/4 of an inch ...but she lost weight! So back to trying to fatten her up!

So since we last met a few things have happened....school ended....uneventfully....she is going on to 3rd grade...she is struggling but as usual I am pushing for her and will always make sure that she has all the accommodations and supports that she needs. I think I am glad that this year is done. Not super impressed with her teacher...I think I just had such superstars for the first two years that when I got one that didn't shine so bright ..or go so far for her I was jaded....I guess I want everyone to go the extra mile for her and I have to remember that is not the norm and maybe this teacher was the norm...

She is training in the gym 2 days a week with the "Hotshots" pre team for gymnastics.....her second love..let me tell you this child has developed muscles on her muscles!  She is loving learning her routines. She loves her coaches and when she gets to work out with "the big girls" (the team girls ) she is in heaven!!!!  She seems to have a talent...if anything she is strong and determined but we knew that !!!! (Although she keeps asking when hockey starts!)

Her birthday was this past Tuesday...eight ...where did the time go....so I wrote a birthday post on Facebook as I do for each child on their birthday...here is Kelsey's ...

she came in feisty and determined as I guess someone had plans for her that we did not know about ...she came in to teach me what it meant to fight...for her.....with her.. and beside her...I have delighted to watch her unfold from a tiny infant who struggled to eat, grow and talk but had the... biggest eyes and an infectious smile, to a toddler with so much energy and hair I don't know what was bigger..lol...to a preschooler who pushed the limits and found her love of her sport...to a grade-schooler who despite her struggle comes out on top and loves everyone around her...she will do great things ...just you watch....
" Though she be but little, she is fierce!"-Shakespeare
So many liked and commented ..the love that this child carries amazes me.....so although we have little news ...she is continues to make progress....every little bit is big in my book!

 

 

Poptarts and Oreos are good for you...lol !!!!

Well I am not going to apologize for not posting in ages ...there has been little to post as I have been working hard on getting Kelsey to gain weight. I have been letting her have so many things that I have usually never let her have.....oreos (in her lunch everyday!) poptarts, pringles, skittles, extra helpings of dinner, extra snacks, and I found a protein bar that she can eat that she will eat! So for the past 3 month I have been stuffing her with "junk food" ..which kills me to do as she is my better eater who likes fruit as dessert and eats just a healthier diet than most kids her age. She had to have some blood work done so unless there is something funky with her thyroid she should be in the clear.

So.....drum roll please......... she gained 2 3/4 lbs ..close enough to 3 lbs to make the Dr happy and enough to kick start her growth again....a whopping INCH!!! She is now 46" tall and 52 lbs.....She may make it out of the booster seat by prom !!!!

Her health is stable for now. She had her ear tubes out in February. ENT has decided that she has grown enough that she doesn't need them. So out they came...only complication was a bleed and some vomiting from the anesthesia.  He repaired the hole in her ear, removed the tubes and cleared out all the scar tissue from all the surgeries. In early March we went in for hearing tests and ....HER HEARING IS NORMAL!!! For the first time in her life she can ignore me like a normal kid! I am never so happy to yell at her for not listening to me ....because SHE CAN!!!!

School is as usual a struggle... we added a few more things to her 504....as I finally got her OT eval results and it did not add anything that was conclusive. I asked for less problems on the paperwork and tests..more time on tests and if needed during classwork(which she already had but was not being followed for stupid reasons and causing anxiety for Kelsey) ....she is still decoding site words and struggling to read fluently but she plugs along and is proud of the accomplishments she does make and I celebrate each one.  She recently brought home a math test with 20 problems (which is against her 504 ...which is another issue recently addressed...ugh...) but was very proud that she got them all done and only got one wrong...which once I looked at it wasn't ,....the number was written backwards...but still and incorrect answer...

Kelsey just finished her first season as a Mite in hockey...she had a great season with two of the best coaches I could have asked for.  She scored quite a few goals this season and really enjoyed the season. She has really improved in her skating and stick handling. If only she would stop singing and dancing on the ice during games......

She is now on to gymnastics twice a week as a Hotshot at the gym. She is getting stronger every week....and is so muscular....one of the moms saw her in her leo the other day and commented on how "cut" she was....she really is and its just her body type....but it is funny to see her sitting next to the little girls at the gym and they are still "little" girl body types and then there is Kelsey .......


Well that is all for now...I hope that you have been caught up in what has happened in the last few months...I try to keep little updates on Facebook and save the drama for here...so I am sure that I will talk to you all soon....

And just remember......Poptarts and Oreos do good.....for Kelsey!!!!

 

It's A New Year!

Well I succeeded in missing not only the Fall but the holidays too...sorry friends..but life has gotten away from me.

We have not had a whole lot of good news so maybe that is why I been so quiet.

Kelsey's last appointment was wrought with issues....no growth...weight loss...a question of her heart having some "stress issues"...a new rash/vitaligo spots...if her meds are working ....and then there was school...

So we tackled the easiest first....the rash...her awesome dermatologist had no clue what it was ..cultured it (which included scraping her skin....poor kid..) and it was some type of fungus that had turned into a vitaligo spot so gave her some creams and poof 3 weeks later all better ...well except for the white spots on her chest!

Next feed her more...she has to gain 3 pounds in 3 months to kick start her growth again.....OK...most fattening things that the poor PA suggests I say "nope she is allergic :) " so Kelsey is eating Peanut Butter Crackers and Chocolate Soy milk before bed most nights. ...Oh and trips to 5 Guys with Grandpa!!!

This month we go to cardiology to check the stress on her heart...that was an issue that I had no clue and the endo said that it was nothing to be to concerned about...just get it checked out....if they didn't call you about it after the last echo then it was nothing to worry about......heart=worry to me .....

and school.....she is plugging along....reading her report card requires a PHd but that I have said before....I still feel like she is very far behind the rest of the 2nd graders and I will fight to keep her where she belongs...

So here  are the highlights...she skated on the P-Bruins ice right before Christmas and thought that it was "a miracle" her word exactly!!! She is getting stronger everyday she skates and is becoming quite the gymnast too...she is writing stories all the time for me and loves to read them to me!

When I have more updates I will let you all know until then ....a New Year.....looking for more pounds and more inches for her!!!!

How Does The Entire Summer Go By and I Missed It?

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!

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!!!!

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.....