Growth: Back to Basics

I originally started this blog for a two reasons:

• Documentation:  My friend and co-worker lost her daughter who had just had a baby. She had her baby right before I had Kaitlyn.  I wanted to capture my memories of the girls and our experiences so that if anything ever happened, they could have this to know they're loved and wanted and how I cherish them - and when I say "them" or "the girls" - that's certainly Taylor included. And - so when I'm old(er) and gray(er) I'll remember all of these times too!
• Health: My next reason was due to all of the dr's appointments I was having to go to with the babies. At 6 months, Kaitlyn was diagnosed with a Variant of Turner's syndrome.  By the time Kaitlyn was 9 months, I was pregnant with Macy..so back to the dr I go!  Kaitlyn was having to undergo lots of testing to then find out Macy had something wrong with her heart valve with they thought might be an indicator of Down Syndrome.  Turned out, after high risk dr's and cardiologists, that it is "only"  Patent Foramen Ovale, which is an abnormality, not a disease.  There are no known risk factors.  Apparently 1 out of 4 people have it and most never know.  With that being said - I want the girls to have a place to look back at and know the names of dr's and what all has been done or identified - or not identified as the case may be.

So it's time to get back to the basics of the blog and have a health update.


After much prayer, deliberation and research (4 years worth) Bruce and I have decided that Growth Hormone Treatment is the right thing to do for Kaitlyn due to her Variant of Turner's Syndrome.  I have researched countless websites and joined several groups on Facebook with girls that have Turners as well as parents of the girls.  I have also met a girl Kaitlyn's age that has classic Turner's along with her mother.  They live in Florida but were up here visiting so we had the pleasure of meeting and sharing stories while letting the girls play.  Another couple I have known since I was Kaitlyn's age has a daughter too that has this. Bruce and I were able to set down and visit with them recently.  That family and ours are starting this hormone therapy at the same time coincidentally.  Since 1 in 2000 girls are affected by Turners and many go undiagnosed if symptoms are few, I think it's rare and an odd blessing to have someone who understands what it takes to come to this decision and what that means for our daughters, to accompany us on this journey too!  I say "odd blessing" only because you hate for anyone to have health issues, but we're blessed to have each other.

A blessing is a blessing and I'll take them anyway they come!

On Dec 20th, 2013 we had a scheduled appointment with Dr. Joel Steelman, Kaitlyn's Pediatric Endocrinologist with Cook's Children's Hospital Specialty Clinic.  This appointment initiated our Growth Hormone Treatment.  Such a brave girl - and Macy is always there for a good dose of moral support ready to have her measurements taken too!

I understand that some people are short - and those people probably reach their growth potential on their own and their height is as tall as they were meant to be.  However, with this syndrome, Kaitlyn won't be able to reach her growth potential without this treatment.  So it's not about being short, or cute or little, it's about reaching her full potential. I also think it's important to note that I've heard kids in Macy's class, 2 year olds, asking who the baby is with Macy.  Kaitlyn of course gets frustrated and defensive.  If this is happening at the age of 4 for Kaitlyn - think how the rest of life will be.  She's pretty easy to spot in this crowd - but maybe not others! (She's the one shielding her eyes from the sun so she can see her momma!)

To plagiarize a bit from The Turner Syndrome Foundation :

Short stature is the single most common physical abnormality in Turner’s syndrome, and individuals not treated with growth-promoting techniques achieve an adult stature 20 cm shorter than that of the normal population to a final height on average 4'8".
GH deficiency can be treated through growth hormone replacement or injections of growth hormone. GH deficiency is treated by replacing GH with daily injections under the skin or into muscle. Costs of treatment in terms of money, effort, and the impact on day-to-day life, are substantial.

Dr. Steelman is suggesting that Kaitlyn will probably need to be on GH for about 9 years.

Growth Hormone is a specialty drug that you get from a specialty pharmacy.  It's not something you get from your local CVS or Walgreens.  There are several different manufacturers of this drug but the one we will be using is called Norditropin.  

Their website is full of answers to all kinds of questions! They have excellent informational videos too that we have watched and Kaitlyn has watched with us.  Visit the Norditropin Website


The drug is an injection that will be administered on a daily basis.  The pens look like this:

The needles are some of thinnest on the market according to the site.  The site does a great job comparing the needles to a dime.  A dime is 18mm and the needle is 8mm.  Kaitlyn could actually put the needle on the pen.

  

We have had phone calls from the drug manufacturer now to setup help with copay and to schedule the nurse.  We've had phone calls from the specialty pharmacy to schedule delivery.  The medicine does ship overnight and packed in ice as it needles to be kept refrigerated.  The medicine will arrive Wednesday, January 29th, 2014 and by the time this blog entry is posted, we will have scheduled the nurse to come to our house to teach us how to administer it.  The drug manufacturer is also sending a backpack filled with items for travel and information that should arrive by tomorrow too.

One last noteworthy piece is, in all the research and girls I've been able to reach, EVERY ONE I have seen that has taken GH has been most thankful and happy about the results.  I have seen many say they wished they had the opportunity to take it.

We're very excited about the possibilities this brings for Kaitlyn.  We're very nervous about the idea of a daily injection to a 4 year old...on through to a 13 year old (and we're nervous to think about a 13 year old Kaitlyn too haha).  We're hopeful that we're making the right decision.  We're anxious to get this started and to see results.  We're a little bit scared.  We, I feel, have to some extent, selfishly, gotten to really enjoy Kaitlyn being little.  They grow so fast as it is and when you have two so close in age during this infant and toddler stage they make another mile stone in a blink of an eye!

 

One more minor health related topic to mention is: When we began using the ECDC, we switched pediatrician's and started using Dr. Jay Murphy with Fort Worth Pediatrics Clear Fork Office.  We did not get off to a good start but I think we're starting to have a better understanding of one another.  The kids are both current on their shots, which I had let slip for a while, but they're good now and Kaitlyn is all ready for Kinder! (no flu shot though - for now anyway)  

Auld Lang Syne x 2

I am ashamed to say it has been over a year since I have posted.  I had a strong feeling, to say the least, when I found out about being pregnant with Macy that life was going to be that much more full! I didn't realize though that my work life would be equally as hectic as the home life!  Using the word "hectic" often can come with a negative connotation as well.  I think it needs to be said that I can do hectic and like it.  Often times, I wouldn't have it any other way -- I am living life to it's fullest potential - no doubt about that.  I have said that I don't hear mothers talking about how hard it is raising kids - at least two under two. So when I use words that are normally used in negative tones or come across as complaining - I am not.  I am just realistic.  Life since this last blog entry, and the one before has been extremely hectic and hard but most of all rewarding.  I'm always up for challenges, and I believe there's nothing I can't do if I put my mind to it. While being the kind of mother, step-mother, wife and employee I want to be and be proud of, I have met my biggest challenge!

Let's get work out of the way:  My line of work entails maintaining the software that is used to keep 26,000 student's gradebooks, course details, transcripts, student demographic data, etc........

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 1/27/2014   TWENTY FOURTEEN!  TWENTY FOURTEEN!!   Well the above intro was found left hanging in my drafts from this same time TWO YEARS ago!  It was appearing that work was trying to win over my home life from the sounds of things so let's fast forward shall we!

Oldest to youngest:
Bruce is going on his 6th year working with FWISD and his third year helping to coach club volleyball.  He is truly the best husband and dad! When he's not busy working or busy with volleyball, he's making sure dinner is ready when we get home, laundry's all done and put away, grocery shopping is done, animals are fed and watered and turtle tank is clean.  So glad he's my partner, best friend and teammate!

I accepted a new job in October 2012 after being with GPISD for 10 years.  I started work for Grapevine-Colleyville ISD.  This district is half the size of Grand Prairie and my responsibilities are just slightly different.  The bonus and deciding factor was what doors this opened up for the girls.  The schools are some of the best public schools in the metroplex.


Taylor successfully made it through middle school at The Young Women's Leadership Academy getting to travel to places like Houston and Austin and dissecting sharks at Texas State University.  It was here at YWLA she continued her career in Volleyball and began her career in Cheer.  Lots of opportunity and great study habits to begin her High School Career.
Taylor is now a freshman at Arlington Heights High School in Fort Worth.  She's on the JV Cheer Squad, plays on the Freshman Volleyball team, maintains all A's with one or two very close exceptions and participates in the AHHS FFA.  She'll be showing a rabbit at the Tarrant County Junior Livestock Show soon. - That makes our house to have grown by a turtle (used to be 2 turtles), a dog: Hunter, and now a rabbit!
We have also been driving with Taylor preparing for the exciting and inevitable DRIVERS LICENSE!  She's doing quiet well though if truth be told.  I'd like think she's one of the more responsible and sensible teenagers - so far anyway!

Kaitlyn has now doubled her age since my last post! She's now 4...and a Half!  (When I started my new job, we left the girls for a while at "Punkin's House" and I commuted from Fort Worth taking Taylor to school every other week and to Grand Prairie and then onto Grapevine.  Grapevine ISD provides a wonderful "school" for Employee's children.  It truly tore me apart when deciding to move them from the Hanks' House to the GCISD's Early Childhood Development Center, however, we all knew this was going to be a natural progression and advance the girls socially while preparing them for school) So - in January of 2013, Kaitlyn had transitioned from Punkin's house to a classroom/daycare setting.  Her Pre-PK teacher had asked me if she'd been in school before because she transitioned so well!   The second week into school though, Mrs. Rebecca told me she thought Kaitlyn was finally missing me because she found Kaitlyn setting on the bench outside crying.  Come to find out, her friend Dean didn't think girls could be super hero's so Kaitlyn couldn't play with them.  That was remedied and all was right with the world again and that was the beginning of Super Heroes Hot Girl and Hot Guy! (I think she really meant her super hero name was HAWK girl and Dean was HAWK guy - but that's not what she'd end up saying)  By the end of PPK, I hear Dean had reported to his parents he was falling in love with Kaitlyn while watching Wreck It Ralph at school.  From that day forward Dean has become known as her husband and Kaitlyn as his wife.  These kids came up with these things all on their own - it's been quiet and interesting journey to watch unfold :)

Kaitlyn aka Hot Girl (and Dean aka Hot Guy) are now in Pre-K and learning to write and beginning to learn to read.  Kailtyn has lost her first tooth on January 22nd and the 2nd is not far behind.  The Tooth Fairy was nice enough to leave behind her tooth so she could show her friends and then later lose in my car!  She did leave behind a glittery $1 though.

Macy had a little harder time transitioning, as she was younger but after about two weeks did just fine.  She was in an Older Two's classroom since she and Kaitlyn potty trained the summer before at the same time.  July 4th week of 2012 was independence week from diapers and pull ups for my 20 month old and just weeks shy of being 3 year old!  At 2 Macy was saying her Pledge of Allegiance!  She has learned to keep up with Kaitlyn in walking and talking among other things!  She's growing like a weed.  The projects they do at their school are pretty impressive.  Macy has learned to be a pretty good napper and has eventually become a fairly good sleeper at night too. (It's taken til 2014 for them to not come into our bed or me be in their beds on a regular basis)  She had her moments to in the recent past with her stubbornness and temperament, but all-in-all, she's very loving and pretty good about minding - better than Kaitlyn!  She seems to be a pleaser and if she disappoints, she wears her heart on her sleeve.
This year at school, right before picture day, Macy had a run-in with a locker in her class and had to have 5 stitches above her eye. 
She has a silly personality and a great imagination.  For the past two Christmases, she has been more brave than Kaitlyn when it comes to talking to Santa.  Macy knows how to take care of herself!!

Both girls have been in Gymnastics for about a year now and making progress - we're going for the gold! ha  We have also taken the girls to homecoming parades and the Grapevine Christmas Parade. We've been to the Omni and the Zoo, to the Rodeo and the movies.  We also took them to meet up with friends to see CHHS' production of Suessical the Musical which they really enjoyed and sat through fairly good.

Pets:  The two cats, Maverick and Maddie are still surviving.  We acquired 2 baby red-ear slider turtles from our pool around mother's day last year.  We named them Franklin and Tuck and one is still surviving.   Then last November we got a Great Dane Mix named Hunter and Kaitlyn is for sure in love with this dog!  She says all the time how she loves him and he's the best dog ever!  Even Taylor likes the dog!!


Whew! That may not have been fast, but we're now at least ready to move forward!  That's a pretty quick synopsis but I feel like the last two years have been a whirlwind!  I do like to include pics with my blog entries, but I have at least kept pics up and stored on Facebook.  I like having my better photos kept there and I print in groups of 100+ every now and then so this entry will match that album once I get the pics all printed and in order.  MAYBE! Hopefully - from here on out though, I can add pics with my entries.

Stay tuned for more exciting events and adventures and short stories of past reflections .....