Monday, March 27, 2017

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. 


Thursday, March 16, 2017

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

Sunday, February 5, 2017

Blessings

Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
Free picture slideshow personalized with Smilebox



Friday, January 6, 2017

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.








Monday, January 2, 2017