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

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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

Saturday, December 17, 2016

Merry Christmas


May your holidays be merry and bright!  Sending lots of love from our family to yours!

Ryan, Jodi, Olivia and Abigail

Saturday, December 10, 2016

Spreading Christmas Cheer

I haven't updated in awhile.  I have a lot to talk about including Olivia's test results, Abigail's 4th birthday and the fact that I'm returning to work full time on Monday!  But, for now I will just leave you with a few Christmas pictures.  I hope you are having a wonderful holiday season and I will write more soon!!






Today is also Olivia's Homecoming Day.  We brought her home from the hospital nine years ago today.  She has not spent another night in the hospital since! 

Sunday, October 23, 2016

Happy Halloween

Happy Halloween from the Power Puff Girls and Professor Utonium



Saturday, October 22, 2016

New Bikes


Abigail received her cousin's old bike this week and was ecstatic to learn to ride a bike.  This is something that Olivia has always struggled with learning.  She previously became so frustrated with learning to pedal, that she just gave up learning.  Well, little sisters are good motivators.  So, we went ahead and bought Olivia a new bike.  Now, I have two bike riders!  We've had a lot of fun riding bikes this week and I'm sure the training wheels will come off in no time!!  Who knows. . .I may need a bike before too long.  Pretty soon my legs won't be able to keep up!






Friday, October 14, 2016

Growing Up

As a mother, it's so rewarding (albeit a little sad) to watch your child grow. . .mentally, emotionally and physically.  As much as you want them to stay little. . .you want them to grow into the person they are to become.  It's tough when you don't see much physical growth.  Over the past 9 years, we have celebrated every ounce that Olivia has ever gained.  I even threw her a 32 lb party years ago because I didn't think we would ever get past 31 lbs.  But, I always knew there was a problem.  She has never been a good eater, but even when she eats well. . .she still doesn't gain.  She's always been below the growth chart or around the 1-3 percentile. Sometimes I would find myself strongly "willing" her to gain weight!!  Praying!  Please. . .just gain one more pound so that I don't worry when she gets sick and loses 2 lbs.  It's like trying to get to the top of a hill and no matter how hard we try. . .we cannot make it to the top. 

At her nine year check up, her doctor became concerned.  Olivia did a bone age study last week and the results weren't good.  It showed her final height to be 4 ft 10 inches tall at most.  Most likely she has a growth hormone deficiency.  She is being referred to a pediatric endocrinologist.  If it is a growth horomone deficiency, she would need daily growth hormone injections.  Olivia is someone with multiple sensory issues.  Cutting her nails and hair is still very difficult for her.  I can't imagine daily injections.  Growth hormone deficiencies don't just affect growth. . .they affect lipids (Olivia has high cholesterol) cardiac issues, blood sugar, etc. 

So, I ask you, as you have for the past 9 years, to hold Olivia close to your heart.  Please pray for her continued growth in all areas of her life. 

I'll leave you with my favorite Olivia-ism.  She wants to be a preschool teacher when she grows up.  She talks all of the time about the wonderful ideas that she has and she would be an AMAZING teacher!  I talked with her about having her growth tested and not gaining like she should.  She replied:

God must have known I wanted to be a preschool teacher.  You don't have to be very big to do that.

She may not be big in size, but she's big in wisdom!


Halloween Preview


Guess who loves the Powerpuff Girls?  Yep, Abigail is going as Blossom and she makes the cutest Blossom in the history of the world.  Not only that, but she has convinced the entire family to join in.  Olivia is Buttercup, I'm Bubbles and Ryan is the Professor.  LOL!  Oh, what a sight we will be. Look for more pics coming later this month. 


Wednesday, October 5, 2016

NIne Year Checkup

Today Olivia had her 9 year checkup. . .nine years!!  Sometimes I just can't believe it!  I always post her stats here so that I'll know where to look when I need them (and inevitably lose the piece of paper it's written on.)

Weight:  45.0 lbs  = less than 3%
Height:  48 inches = 2%
BMI: 13 = 5%

Her growth is not quite as good as they want it.  I don't think it matters how tall she ends up, but for her sake, I hope she's at least over 5 ft.  When reminded of her small size, Olivia smiles and says:

God must have known I wanted to be a preschool teacher.  You don't have to be very big to do that.

I love her outlook.  If only everyone could approach life the Olivia way.

Olivia is having a bone age study done, which is basically an x-ray of her hand.  That will determine whether we need to test her growth hormones or not.  Here is a bit more information about it.

http://kidshealth.org/en/parents/xray-bone-age.html

I haven't written on here about our struggles over the summer.  Sometime I will try to write a post about it.  I'll just say that Olivia now currently sees a pediatric nephrologist and urologist.  It was a stressful summer searching for answers.  It's an ongoing health issue that we've been dealing with since about May.  So, I ask for prayers in regards to that health issue, prayers for her growth, overall health and happiness.  I'm not sure anyone reads this blog anymore since I stopped blogging for quite awhile.  But, if you still read it (and have from the beginning or just started) I would love to hear from you.  Leave a comment or simply email me at jsail63@hotmail.com.  In the comment section write something about the blog as I'm known to just click through and delete messages.  Thanks!


Tuesday, October 4, 2016

Olivia Paige

I worry about my children just like any other parent. . .okay, probably a bit more knowing me.  My worries change as my children change and grow.  I've recently realized that Olivia has a lot of trouble knowing how to just hang out and socialize.  This worries me as a lot of what pre-teens and teenagers do is socialize instead of play together. It is extremely difficult for her to have the reciprocal communication needed on the telephone and any back and forth conversation between peers is tough.  She socializes with her family just fine as we know her and understand her.  She's such a kind, lovable, extremely funny girl with many talents that the world has yet to see.  But, as a mom I worry.  Olivia is so blessed with the friends that she has who understand her, help her and love her (how can you not?)  I pray that the world is kind to her and that she learns to open up to other people.


Our new family picture at the pumpkin patch

My sweet Olivia Paige


She was brave and tried and zip line for the first time and loved it.

Slingshot pumpkins


These are two of her very sweet friends.




This is my new favorite picture of the girls with their cousins/best friends.  Olivia is extremely close to her cousin, Izzy, who is just a week older than her. 

Monday, September 5, 2016

Updated Pics

It's been a long time since I updated the blog.  Yikes!  We are doing well.  Olivia is now in 3rd grade and just celebrated her 9th birthday.  Abigail started preschool last week and will be 4 years old in November.  Time flies!  I will try to update again before 6 months passes me by.



Friday, February 12, 2016

My Girls


I am so blessed with these two amazing girls.  They are so different from each other, yet both so wonderful and special.  And they are truly each other's best friend. 




Wednesday, January 20, 2016

Growing Up

I hope all of you are having a wonderful New Year. We have been doing well.


We got our hair cut recently and Abigail was adamant about getting green hair. Ha! What does this say about her teenage years? Yikes!



She is a born leader, however, at this age I cringe when I hear her say," Hey, I have an idea!" You never know what she has come up with. She is the first of my children to cut her hair, put a Lego up her nose, swallow a penny, etc. Her ideas aren't always the best. Ha!


Olivia really likes second grade and got all As and 1 B on her report card. She continues to take piano lessons and does really well with that.



Love my two girls. I am very blessed.


Jodi- Posted using BlogPress from my iPhone

Saturday, December 19, 2015

Christmas #1































Jodi- Posted using BlogPress from my iPhone