Update

Greetings to everyone that are probably viewing this because of a Google search about CPT II or through my profile link from another blog. *I'm smiling at you*

We now have three children. 

Since the last blog posts nothing major has happened in connection with CPT II. 

The only times it has come up: 

- recently when we were applying for a health cost sharing  group I realized I had no official paperwork proving Sarah doesn't have CPT II so for "Previous Health History" I had to explain our dilemma of CPT II since it is part of her history. Thankfully since she was weaned from all treatment shortly after she was one-years-old, she never showed any symptoms of CPT II. 

- at one point in the last few years she complained her legs felt tired. This made warning signs go off in my head because muscle fatigue is a warning sign for carnitine deficiency.  Since we never got a definitive medical answer as to whether did or did not have CPT II, I am aware that there is adult onset CPT II and so there is still a lingering haunting of CPT II. As I type this I'm combating anxiety about whether Sarah's lack of desire to ride a bike uphill is based on her personality, mental strength, or exercise intolerance (thus, a sign of CPT II). So CPT II still haunts us.

- when we are reminded how smart Sarah is. This is not intended to brag but is just a reality, Sarah is really smart. She recently took her 3rd grade beginning of year test (BOG) and scored 99%. When we are reminded of her smartness I might make a comment to her father or grandparents, "Thank you, daily levocarnitine supplements for the first year of her life as her brain was forming." Some of us had heard radio commercials advertising L-carnitine supplements to increase memory and brain function so we started joking that was one of the ways Sarah got extra smart as a baby. 

Well, there is our update. :-)

If you are at this blog because of a CPT II diagnoses for your child, I found the FOD Family Support Group to be so helpful during our struggle to understand all that is involved with the condition and treatment.       

Baby #2 is Born

Things are different.

The new baby is here.  She is just as beautiful as her big sister Sarah.

In the hospital I was very aware when they took our baby away for the newborn screening. It also seemed like the little prick mark from the newborn screening stayed visible for a week or two. We met with her pediartircian 4 days after she was born and he said that if anything was flagged they would call us. No news, was good news. We got no news. 
We can let her sleep. She still wakes up every 2-4 hours to eat but at least she is awake to eat.  With Sarah, we would try desperately to wake her up every 3 hours to eat and she usually would drink her bottle basically asleep.  It makes me think that Sarah would have been one of those newborns that would have slept a good chunk at a time.  I keep reminding myself not to think too much about what could've been if we hadn't gone through what we did with Sarah.  Both girls are beautiful and healthy, praise God! 
 

Important Information for Parents

At my last doctor's appointment for our yet-to-be-born child, I received a packet of informative papers and pamphlets.  I noticed the booklet "Important Information for Parents about the Newborn Screening Test." I let out a short chuckle as I flipped through it.  I don't remember getting this when I was pregnant with Sarah. 

Yes, we are still going to have the Newborn Screening done on Poema (that's our new baby girl's name).

Baby #2

Well friends, we're going on a second adventure.  Baby #2 is baking in my baby maker.  I am 16 weeks pregnant.  Through Kaiser they said I qualified for more prenatal appointments based on my initial phone interview after conceiving.  I had a feeling it was in regards to genetics.  I was right.  I have already had a genetic appointment but since there is no way to formally confirm or deny that Sarah has CPT II, we do not know if we are carriers or if the second child could have CPT II.  Basically all the genetic doctor did was add the information about possible CPT II onto my chart because the only mention was in Sarah's medical records.  She also requested 3 extra blood tests to be done throughout my pregnancy to check my liver because she said HELP Syndrome is possibly connected with women carrying babies with CPT.  I wasn't able to find any proof of this connection during my little Google search but I figured a few extra blood tests won't hurt. 

I'm going into this pregnancy way more grounded in the reality that anything can happen.  I have no control over what happens with this little life inside me (Ok, I can take vitamins and not eat junk but, ultimately, there is no control).  This understanding has made me less fearful.  I'm just letting it go and we'll see what happens.

A Can of Worms

Sarah turned 2 in July.  Her last blood test was about a month or two after her first birthday.

Jonathan and I have discussed that we should call the metabolic clinic and get a blood test done on Sarah to see what it shows about her carnitine levels.


We decided a few weeks ago.

I don't really want to.

That's why I haven't.

I'm afraid to start this drama again, the unknown and no way of really knowing.

What's the saying? What you don't know, won't kill you.

Could it kill my kid though?

Ok. I guess I'll call.

Thankful

Well, I can now honestly say that I am thankful for how I developed as a person and mother because of our whole journey with Sarah's NBS and CPT II scare.  It didn't seem to hinder or harm Sarah in any way.  I didn't enjoy the extra worries and less sleep that occured.  I wouldn't wish this journey upon anyone, but I am thankful for how much stronger it has made my faith and the bond between my husband and me.

Sarah is Smart (this isn't meant in a bragging way)

A few nights ago, as I was praying over Sarah, I realized one of my deep fears through all of the whole CPT II possibility and treatment. My fear was that she wouldn't develop properly because she wasn't getting the fats she needed. Basically, I was afraid that she wouldn't be as smart as she could be or that her brain wouldn't develop correctly. (That's why I was trying to find ways to be allowed to feed her avocado. That was me trying to control things.)

During our night night routine prayer, I was thanking God for how smart Sarah is and for the joy she brings to our lives and I was overcome with emotion as I realized that God had answered my prayers. My prayer was that God would keep her safe while we treated her and that she would develop normally.

Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6