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Christopher’s Story

Christopher Lawrence Pena Jr.

Born 4/25/08 at 6:45pm

read journal entries oldest to newest for the full story- his birth story is pg47


 

 Christopher Pena Jr. was born in April 2008 with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like after birth, which causes the heart to be very weak. Christopher's cardiomyopathy affects his right and left ventricles where it is very hard for his heart to pump and function correctly. They said the only option we had to medically intervene, was a heart transplant. At that time, we opted against with only the very best quality of life in mind for him. We also didn't have guarantees he would survive if we attempted to transplant.
   Christopher was not given very long to live. Six months at the most. But we believed that the doctors could tell us what they knew from books, but our Mighty God is the Great Healer and could fully heal his heart either way. We placed him at the Lords feet and asked Him to give us strength for whatever was His will. We knew he would be okay, but we would need some help. At 45 days old, he was admitted into hospice care where he remained for 15 months. But Milestone after milestone passed.
   Christopher was released from hospice when an echo cardiogram showed that his heart function had tripled! And at 18 months, his heart function was almost normal. God still performs miracles each and every day! I thank God that He trusted me with this amazing testimony in which all praise, honor and glory goes to Him!

   In February 2010, it was discovered that Barth Syndrome (BTHS) is the cause of Christopher's cardiomyopathy.
Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with BTHS present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of BTHS include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, less than 200 known cases worldwide. So much that if people would hold hands from one end of the world, all of the way  around, only one of those people would be a boy with Barth syndrome. It was described to us like finding a needle in a haystack for the doctors to discover that he has BTHS!
   There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. Read more about Barth syndrome at
www.Barthsyndrome.org

Christopher has most of the characteristics, including cardiomyopathy, neutropenia, muscle weakness and some other problems. He has homebound speech therapy 3 times a week and is currently doing very well, all things considering!
 
With this diagnosis is affirmation to never lose sight of the trust we must have in our Father in Heaven. We still depend on miracles every day. God is in control, and He doesn't do half miracles and our trust in Him has never failed us.

You can read his full story by reading his birth story on page 26, then reading journal entries oldest to newest

"Life not matters because of the numbers of breaths you take, but the moments in which that take your breath away"-- author unknown


More sites featuring Christopher:

(News story from Dec 2011)- 
http://www2.wjtv.com/news/2011/dec/09/batson-family-patient-81311-vi-112796/



http://www.onetruemedia.com/otm_site/view_shared?p=d2b6f739d18cb5d81686d6&skin_id=701&utm_source=otm&utm_medium=text_url


(If you have faith the size of a mustard seed, you will say to this mountain, "move from here to there," and it will move; and nothing will be impossible for you. Matthew 17:20)


Latest Journal Update

Tests and more tests

Christopher told me today that in addition to being a chef, a farmer and a daddy when he grows up, he also wants to be a paleontologist.
Update on his health,
Just finally got still from decontaminating hospital germs, warming up and eating a bite to update.
It will be a little long to cover the details.
Fasted labs went as well as can be expected, now we wait to see the amino acid and pre albumin levels.
We will know based on the amino acids whether or not we discontinue arginine for good. (Whether the methionine and citrulline are enough by themselves.)
...

Neurology appointment gained us an appointment for a contrasted brain MRI due to his chronic headaches he describes as stabbing pain in the back of his head which is of concern because of location and his history of strongly suspected stroke. (Everyone is almost 100% sure but this will be the first MRI he has had.)
We need to be sure nothing is hiding in there we need to know about.
Now that Christopher is able to speak for himself he can tell them what hurts and where. He also has a strong memory of his 'stroke'.
It's a huge blessing to have him able to tell us how he feels. I didn't know until today that the headache pain felt to him like "bee stings" (stabbing pain) which he does complain of almost every day. He does also have stomach migraines but she said what he's describing is a bit concerning.

If it snows this year (which I personally hope it doesn't), we have to be very cautious if we do let him be in the snow bc of the rapid changes in body temperature being a factor in causing his issues.
He will be having a contrast MRI and normally it would be ideal to be sedated. However, "normal" isn't our destiny and the risks of sedation warrant us attempting it while he is conscious. He's a great patient, so it's worth a try.
We are changing his vitamin b-6 to a complex including b-2 which she hopes will improve the headaches. If not, we well contemplate increasing his Periactin or investigate another medicine all together. Since we do have to address the headaches and the MRI findings, he will go back in 6 months instead of a year.
We will have a very busy next few months with appointments. MRI is set to happen after a dental appointment next month.
He is also set up to see the new metabolic geneticist later this month in addition to his check ups with his other specialists.
I'm sure at cardiology we will readdress another attempt in increasing his beta blocker, perhaps more slowly next time. This past week, we attempted to increase his coreg (most likely because he's outgrown his dose and due to the prolong qt syndrome), but he became very incorrigible and easily brought to tears which isn't like him at all. His teacher, and both of us agree its the medicine. Cardiology had us go back to the original dose.
Prayers are very welcome as always.