Happy 5th birthday Abigail

One of the most beautiful cakes I have ever seen!

 Pin the horn on the unicorn

Happy 10th Birthday to Olivia

First Day of 4th Grade

Ever since Olivia was 2-3 years old, she has loved the name Lilly (always with 2 L's.)  It's similar to Abigail's name "Dessa."  Every doll and stuffed animal was named Lilly and Olivia hopes to have a daughter named Lilly someday.  So, it's pretty special that she got Mrs. Lilly for 4th grade.  Her first day was today.  I can't wait to hear all about how it went.

And, yes, she wore a dress for the first day.  She has NEVER worn a dress to school before.  I was in awe.  She is maturing by leaps and bounds. 

Quick Update

Well, we are doing well.  Olivia has been on growth hormones for almost a month.  It has been a tough transition, but we are all adapting.  Plus, she has grown an inch since the beginning of June!  And it's quite possible that she could make it to 50 lbs by her 10th birthday!! 

Also, I am still painting and making signs.  Be sure to check out my etsy shop called Show Me A Sign Designs!!  Here are a few that I have done lately.  I have really enjoyed this new hobby of mine!!

Growth Hormone Injections

For many years, I lived in denial over fear of growth hormone injections for Olivia.  She still hardly tolerates haircuts and having her nails cut and teeth brushed. . .how in the world would she do daily injections.  So, even though she has never been above the 3rd percentile, I never pushed the issue because I didn't want growth hormones to be the answer.  Well, I finally pushed and asked and questioned.  She had a growth hormone stimulation test last November and surprisingly passed with flying colors.  Her body makes enough growth hormone.  So, why is she falling off of her growth curve and is now in less than the 1st percentile?  My daughters, who are five years apart, are now only 3-4 pounds apart.  After many tests over the past year, it is determined that she makes enough growth hormone, but her body resists it. . .it does not utilize it like it should.  Yesterday, insurance approved her for growth hormone injections.  I was expecting a fight and lengthy appeals with the insurance company because I've heard that once you pass the stimulation test, they don't want to pay for it.  But, they approved it without any problem.  Within the next few weeks, we will get trained on it because it is reconstituted and has to be mixed, etc.  So, it doesn't sound like a simple "dial the dose."  One fear of mine is knocking on the doorstep, but it doesn't seem so scary up close (to me, I can't speak for Olivia.)  It is not just about her being small or being short and wanting to make her taller.  It is a health issue as some of her internal organs do not seem to be growing at normal pace either so it affects more than outward appearances.  And I pray and pray that this is what her body needs to grow and thrive.  It is heartbreaking to watch your daughter get older and struggle to grow.  It's like climbing a mountain with a really really heavy backpack and no matter how much you try or how determined you are, you can't get anywhere.  We've tried OT, feeding therapy, increasing calories, etc. and NONE of it has made a difference.  To be honest, she is a better eater than Abigail at times.  But, it doesn't make a bit of difference and for the past "almost 10" years that has made me feel like a failure of a mom.  So, I just ask for your prayers as we begin this long journey of daily injections for the next 5-6 years at a minimum.  I pray that Olivia tolerates them well without side effects and adjusts to them easily.  Hopefully soon they will be just another part of life.  No one ever said parenting was for the faint of heart. . .

Show Me A Sign Designs

I have recently discovered something about myself.  I won't give you the long story because it is one of those this led to this and this led to this.  The short story is. . .I found out that I love to draw.  For 39 years I have only drawn stick figures, I have NEVER drawn anything and for the past two weeks I have been making 3-4 signs per day.  And now I have an etsy shop.  Someday I will go into the long story.  But, here are a few that I have made. 

This is my #1 viewed sign on etsy.

Olivia begged me to draw a beanie boos sign for her room.

For our sailing themed family room.

This also goes perfect in our sailing themed family room.

This has been one of my favorite sayings for many years.

This is one of my favorite signs. 

This was an Ooops.  I didn't like how it turned out, so I painted over it and had to use brown so that it would be covered up.  So then I had a brown canvas and came up with this.  I thought it turned out cute.

I have wanted a Playroom Rules sign for a long time. 

This bottom sign is my main goal.  Please read my poem on the right side bar that I wrote to Logan a few years ago called Playing In Heaven Instead.  Below is the picture that I made to go along with it.  I would like to personalize one for each parent who has lost a child who would like one.  Ideally I would like to make enough money from my other signs to provide one at no cost to each parent.  There is just something special about each personalized treasure received with your child's name on it to show that they were here and that they will be remembered.  So, I opened an etsy shop called Show Me A Sign Designs. 

https://www.etsy.com/shop/ShowMeASignDesigns?ref=search_shop_redirect

Take a look around and let me know what you think.  I am totally new at this.  It's honestly like I woke up one morning and it seemed like God wanted me to paint signs.  So, here I am.  LOL!  If you have a favorite saying, quote or verse, I would be happy to put it on a canvas for you.  I will do a wide variety of things and I am learning something new every day.  You can comment on here, go through etsy or just send me an email.

Anyway, I may be sharing a few more signs in the days and weeks to come.  Here are a few pictures from today, however.  We went to Ryan's company picnic at Tanganyika Wildlife Park. 

I thought this was a really cute picture of Ryan and the girls.

Olivia got new glasses yesterday and they are really cute.

And this. . .this!  The camel even smiled for the picture!!!  So Cute!!

Fly

In less than 9 months, I will enter my 4th decade of life.  Seriously, when did that happen?  I've realized a lot about myself lately.  Other than "talking" from behind my computer, I don't speak up and I don't take risks.  I don't mean skydiving or coloring my hair purple.  I don't ever risk failure.  If there is a 1/10 chance that I could fail at something. . .I won't do it.  Because of that, I don't ever feel successful either.

When I was in high school, I played the bassoon.  We had a competition in Chicago and there was a bassoon solo.  In fact, the piece began with a bassoon solo.  The first song we played which began with the bassoon solo would be the first thing that the judges heard.  The solo was mine to do and I passed it to another bassoon player.  I didn't want to mess up.  But, I also missed an opportunity to shine.

Many of my 40 things I may fail at.  I don't know.  I've never tried them.  I could be really good at them too.  Number 12 on my list is to write an autobiography. . .I have always wanted to write a book.  I am happy to say that I am up to chapter 12. . .College.  I hope that I am able to finish the book.  Sometimes I have great intentions, but poor follow through. 

What is the saying?  How can you explore the oceans if you never lose sight of the shore?  I am not sure I have ever gotten the boat in the water  But, how can you grow as a person unless you risk failure and take chances?    Life is not about just preventing failure it is about living and learning and growing and falling down and getting back up again.  I want to teach my daughters to take chances, to believe in themselves and to try without being afraid.  I know one day they will soar.

Update on Olivia

Many of you have followed Olivia's blog since the beginning.  There may be new people who are at the beginning of their journey.  Whatever led you to my blog. . .I'm glad you are here.  I also feel that I should share what life looks like almost 10 years down the road.  We are blessed, that is for sure.  At piano lessons tonight, Olivia played Shepherd's Song by Beethoven so beautifully that it gave me chills.  She is very gifted. . .amazingly so. . .at piano. 

We recently had a psychological evaluation done in order to update her IEP and better prepare her for the future.  I'm not sure if I have shared before, but she does have autism level 1. . .very high functioning.  There are a few things socially that she struggles with (reciprocal communication, social norms, conversing with peers.)  A fellow mom who has a child with high functioning autism explained it best. 

I'm weird, your weird. . .everybody is weird and has their quirks.  Those with autism just don't know which sides of themselves to hide. 

To me that is beautiful because with Olivia you see her for who she is. She doesn't pretend to be somebody she's not. 

Besides autism (which micropreemies are at high risk for) she also has pretty severe ADHD.  I always knew that she did so this was nothing new.  The question is whether we do medication or not.  For health reasons, we cannot risk appetite suppression, but we also don't want the ADHD to impede on her learning.  There is a fine line that we must walk and that has been difficult. 

Her IQ is in the average range. . .no intellectual impairments. She does have a poor working memory (short term memory), which is the ability to hold onto information while doing something else and then go back and obtain it.  A lot of times this goes hand in hand with ADHD (which micropreemies are also at high risk for.)  She is borderline for a learning disability in math.  We are retesting in the fall to see where she is at.  Math is something that she struggles with and does not like.  We are not sure whether improving her attention could help with some of these difficulties. 

Olivia, though, is such a beautiful person. . .inside and out.  She wants to be a preschool teacher when she grows up.  Honestly. . .she would be fantastic at it!  She is so gentle and kind and loves young children as much as they love her.  I just hope, as her mom, that I'm able to give her the tools and the confidence to do whatever she wants in life. 

Life has changed a lot in almost 10 years since I sat by her side in the NICU listening to the machines beep.  But, she continues to be the same amazing girl. . .small and mighty. . .whose purpose in life is much bigger than we can imagine. To know her is to love her. 

Prayers

Wow, I have just been a bit overwhelmed lately.  Many of Olivia's health problems have just surfaced over the past year.  She has gastroparesis and was put on EryPed, which seemed to help, but it was extremely expensive.  So, we switched to the generic erythromycin and it seems to make her really nauseous.  Her doctor says there wouldn't be a difference between them, but we swear that there is.  On top of gastroparesis, she has had hematuria and proteinuria. . .of which nobody seems to have a clue why.  They are targeting a problem with her kidneys, which I believe I have mentioned before.  Next step is a kidney biopsy.  She is also having frequent headaches that no one can figure out.  Olivia also recently underwent testing for learning disabilities and ADHD.  We get those results this afternoon.  If you could just say a little prayer for Olivia. . .that doctors would get to the bottom of everything so I will know the best way to help her.  She is a trooper, as usual, but I know the tests and appointments have been difficult for her.

Olivia

 Abigail

Blessings

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Just An Update

Well, I had been waiting since last May to post anything.  I wanted to get some more information and definitive answers, but every test ends up giving us more questions than answers.  I don't like to post too much about Olivia's health since she's 9 years old now. . .you know. . .to give her some privacy.  But, we could always use the prayers. 

Last May, Olivia had blood in her urine.  A lot.  Since then, she has had multiple doctor visits, blood draws, countless urine samples, visits to a nephrologist and urologist and endocrinologist, ultrasounds, x rays and a bladder scope, etc.  We still don't know why there continues to be blood.  Sometimes it is just microscopic, but many times it is visible blood.  Thankfully, she hasn't had any pain except for one early morning trip to the ER where the pain subsided.  Not a single urinary tract infection.  Sometimes there is just blood, sometimes there is also protein or ketones.  The urologist has basically ruled out any urinary tract or bladder problem and says that the problem most likely originates in the kidneys.  There is possibly damage to the filters of the kidneys and its unable to filter out the blood, protein, etc.  We discovered over Christmas that her left kidney is small and hasn't grown any since this past summer.  But, again, we don't know what that means.   

She has also seemed to fall off her growth curve this past year and, although she has always been small and never over the 3rd percentile, she is now below the 1st.  They did a bone age study which showed her adult height would be a few inches below 5 ft, whereas genetically she should reach 5 ft 3 inches.  So, she went to an endocrinologist at Children's Mercy who seemed certain that she has a growth hormone deficiency.  But, she passed her growth hormone stimulation test with flying colors (always the over achiever.)  The way her endocrinologist described it. . .her body is making enough growth hormone, but something is inhibiting it and preventing her body from using it.  I asked whether kidney issues could be related and she said that kidney disorders can definitely affect growth.  So, I do think the two issues are related.  But, no one can figure out why or how. 

The next step would be genetic testing (already tested negative for Turner's) but our insurance denied it.  So, now we are looking into another lab with a genetic counselor and waiting to see if we need to do an appeal.  We go back to the nephrologist in February, but it sounds like the next thing he wants to do is a kidney biopsy which I don't want to do.  And we wait and wait and wait.  Who would have thought a single symptom's cause would be so hard to find!  We are still looking for answers and praying the cause is simple and easy to treat.  The past 9 months or so have been so stressful for me.  On top of it, I went back to work last month. . .part of me wanted to, but part of me had to.  Medical bills have just been killing us lately and it's been hard to watch all that we've worked for go to pay medical bills.  And, we had mold in the girl's bedrooms which cost a pretty penny to repair.  So, I'd say 2016 wasn't the best of years.

I look ahead to 2017 with hopes of happy and healthy days ahead.  Please continue to surround Olivia with your prayers.  I know all of the tests haven't been easy on her.  Everything kind of culminated this past year and we need some smooth sailing ahead.