Wednesday, July 13, 2016

Eight Years Old!

Sarah turned EIGHT last month! Oh how the years have flown by and I can't believe how far she's come. I decided to do a bit of a review on her stages and development, if not for my reader's sake, then for my own.

June 22, 2008: Sarah Anne was born. Nine days after my due date she finally made her appearance coming in at 6 pounds, 1 ounce and 17 inches tall. When I first held her, I recall thinking that I had never seen or held a baby so tiny. Doug had to go out and buy a preemie sleeper for her to come home in. One of the things I clearly remember about driving home from the hospital was that she cried the whole way. To this day, she still doesn't like being in her carseat and often pushes or pumps her legs while driving.

August 27, 2008: Sarah had gained her first pound by two months old. Yes, it was at this point that we took her to a specialist regarding her extremely slow weight gain after my midwife suggest we get Sarah checked out.

September 5, 2008: Sarah had a cardiologist appointment this afternoon and were told that she would be given an EKG (electrocardiogram) and an echocardiogram (ultrasound of the heart). Since the patient has to be relatively still for these tests, Sarah was restrained by Doug, myself and one nurse. Yes, it took three adults to keep a spirited 2.5 month old still. We were told that if she didn't settle for the echo, she would have to be sedated and my aching mother's prayer was answered and she took her soother and relaxed for most of it. 

October 10, 2008: (Taken from a previous blog post) Doug and I have just arrived home after Sarah's appointment at the pediatrician (Dr. Lee). It was not a positive event for us. First the stats: Sarah gained 3 oz and 1/2" in height over the last 10 days. Unfortunately her head circumference stayed the same.
We are thankful for the weight gain, but it is still less than half of what it should be. The height increase is good, and put her back on the right track there - but the lack of gain on hat size indicates 
stagnant brain growth. 

We are needing to do more blood work for genetic testing as well as get an appointment for an MRI to determine that her brain and skull are growing as they should. (the MRI will require general anesthetic for Sarah) 

In light of the growth that has been seen, the pediatrician did not think it necessary to admit Sarah to hospital at this point, though that is a very real possibility if these trends don't change. Our next 
appointment with Dr. Lee is on October 22nd and we were given the impression that we should come prepared to hear that Sarah will be put into the first available bed. This is obviously NOT the route we want to travel!

October 22, 2008: (Another blog post) Good evening. Well it was another eventful day at the U of A hospital for us. Certainly a more positive outcome than the last time. 

So, first the stats: Sarah gained 13 ounces bringing her to 8 pounds, 4.2 ounces and yes, I'll count in the .2! She also put on an additional 1/4 inch in length. Her head circumference went up 1/2 cm which is ok but not great yet. She's still falling away from the curve on that end. That being said, we don't need to see the doctor for another 6 weeks!!

Her weight gain is certainly an answer to prayer and we are thankful for every one of them. As for her head... her pediatrician has requested an MRI just to make sure her brain is developing normally even though it is small. This is procedure is probably the most stressful for me now. All I know is that she will need to be sedated and I won't be able to feed her up to four hours before. Then there is all the pre-op work to do as far as getting the IV started and such. The MRI itself is about 30 minutes and then there will be her wake up time before I will be able to see and feed her.

The MRI at this time showed nothing significant.

December 2008: At six months, Sarah was 11 pounds, 3 ounces

May 2009: When she was 11 months old, she began to crawl

June 22, 2009:  At one year old she was 13 pounds and 11 ounces.

December 2009: When eighteen months rolled around she was 16 pounds and started to walk on her own.
** When I think back to this moment, I wonder why I never saw any red flags. All my other kids walked at a normal time and so this was so late. Sarah was also SO very small. I'm sure she was still wearing 9-12 month clothes at her 2nd birthday.**

December 22, 2010: I remember writing in a previous blog post that she wouldn't go to kindergarten in diapers. It makes me smile to look back and think I had no idea what the next few years were going to hold for us. She was 22.5 pounds.

April 2011: Doug and I were beginning to wonder about Sarah's speech and after having it tested, found out that there was a lot more that we would be dealing with.

May 16, 2011: Oh the plethora of information that we received this morning.  There are quite a few issues where Sarah's development is concerned.  In most areas, she is at the age of a 24-25 month old.  In one area (visual recognition) she's at the level of an 18 month old and only in her social skills is she at the correct age.  So in all areas of development, she is significantly delayed.  

July 18, 2011: We had our first appointment with a new pediatrician who deals mainly with special needs kids. This is when our journey into an unknown future began...

September 27, 2011: The doctor's very first diagnosis, without even doing any testing was that Sarah has developmental delays and Microcephaly. Microcephaly means a smaller than average head due to a lack of brain growth. The doctor suspects that early on in my pregnancy, her brain was deprived of the necessary amount of oxygen and she suffered brain damage.  As a result, she will always need special education. She has documented delays in speech, fine and gross motor skill and visual memory. Her condition is chronic and organic. She will not get worse but there will probably come a point when she no longer developed cognitively - she'll most likely need someone to care for her for the rest of her life.

November 24, 2011: We were given the results of the MRI.  Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different.  They also found that there is "periventricular white matter", consistent with "periventricular gliosis", WHICH as I understand, is the cause of her balance issues.  All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy.  

The next few years were a blur of tests, assessments, doctor appointments tears and prayers. I look back and am so thankful I had the clarity of mind to actually write about it. In fact, I wrote so much, that I can't even really write about it in this blog as it would take too long. 

Our latest very exciting development for Sarah is that she is diaper free. I had started to see signs of her being ready and her "carrot" was a camping trip that we take with our church each year. I told her she couldn't go camping in diapers and within a few days, she was completely done. There were times when I was sure I would be doing diapers forever. 

I am excited to see what will happen in the coming year for Sarah. I look forward to writing all about her wonderful-ness very soon! 



Seventeen Years

Oh how the years go by
Oh how the love brings tears to my eyes
All through the changes the soul never dies
We fight, we laugh, we cry
As the years go by
(Amy Grant)

As the years go by, the hurt doesn't go away. It maybe fades and becomes less sharp over time but the ache for her isn't very far away. I can remember the last time I saw my mom alive. We were having a camp fire with her and dad and as Doug and I walked away, I remember glancing back and waving good bye to her, having no idea I wouldn't see or talk with her again. I miss her. A lot. I wish she could have seen her other three kids get married - she'd have been a wonderful mother in law. I wish she could have seen all her grandkids - she would have loved them so much. I could come up with a thousand more wishes but of course that won't change the path I'm walking today. I can look and see how proud of us she would be and I'll hope that God gives her some updates as He feels necessary. She was beautiful, both inside and out and I will be forever thankful for the years that I had with her. 

When I receive a beautiful bouquet of yellow roses, I am reminded that she is still part of people's hearts and that I am loved by many others. I have an amazing family, friends who are like family and a network of loved ones. I am so blessed. My Father loves me more than anything and I take joy and comfort in knowing that one day I will see my mom's face again. Until that day though, I will live life the best that I can, glorifying God in all I do!

My in laws always remember...

Majesty, worship his majesty;
Unto Jesus be all glory, honor, and praise.
Majesty, kingdom authority,
Flow from his throne unto his own, his anthem raise.
So exalt, lift up on high the name of Jesus.
Magnify, come glorify Christ Jesus, the King.
Majesty, worship his majesty,
Jesus who died, now glorified, King of all kings.


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