Monday, October 31, 2011

One day at a time

Over the last couple of weeks Caleb has been making some great progress! He has been gaining weight (a big deal seeing as he hadn't gained any weight for about 4 months) he put on half a pound in the last 10 days!! He is over 18 pounds now. (18 months old) he has put on 3 pounds in just the last 2 1/2 months! The Dr was very serious about him gaining weight and told us he has to be eating or he would have to have a feeding tube. Caleb is still finicky sometimes, but he is eating way more than he used to and not throwing up, like at all! He has only thrown up twice in the last 2 months and it was not near like the crazy episodes he had for so many months. We are so amazingly thankful!!
Tonight he was also sitting better than he has in a long, long time! He was even using his hands while he was sitting and didn't need them for support. So great!
I don't think it's any coincidence that everything seemed to really start going uphill very quickly after he was prayed for by family, church, and friends. Thank you to everyone who has been praying for our precious little guy. We have heard from lots of different people that "God's got this." How that plays out we are not sure but we know that we are not alone, and God has a plan and purpose.
So we will keep believing for miracles in our little boy's body, and celebrating the improvements we can see.


Friday, October 28, 2011

A Hard Day

Opening a care package from Gateway                        Riding his Harley

                                                                                                                   A "few" weeks ago :)
Thank you to everyone who commented and who have expressed their love and prayers.  We are so blessed to have such wonderful family and friends to support us on this journey. I know some of you have looked up Mito and Leigh's Syndrome.  If you found any of the things that we did they were anything but promising.  Most of the kids have lots of tubes coming out of their body, some have full time nurses, most don't leave the house, and some sites say patients only have months to a year to live.  However, that is not the case with our Sweet Caleb.  (and I'm believing that will never be the case!) We still don't know so many things, but I do know that today Caleb doesn't have any tubes, we haven't been worried about whether he will wake up tomorrow, and so many things that parents of kids with Leigh's worry about.

But that doesn't mean we don't have our own struggles.  Today was a rough day for me.  Caleb has actually had a pretty good day,and a really good week.  (besides having a little cold, however it has only been a small cough so we are thankful for that) He has had an appetite and has been motivated to play.  A few weeks ago he just sat in his chair and watched TV and then when that got to be too much he would lay on the floor and watch TV.  Someone asked me if the Mito makes him tired all the time or if he sleeps a lot.  He isn't necessarily sleepy all the time, more just physically worn out.  Even if he hasn't done anything.  His cells don't make the energy needed to function properly and so far that is most evident in his muscles.  He doesn't walk and at this point is a long way from walking.  That is not really something we are even that concerned about at this point.  

Anyway, I was playing with the kids on the floor and I started thinking about 8 weeks ago and what Caleb's energy level looked like.  He was pulling up more and crawling around more.  Then he was rolling a truck around but had to lay down to do it, he just didn't have the energy to sit up.  It makes me sad for my little boy that he can't do the things that other 18 month olds can do.  He can't stand up and look through a toy chest without getting tired and sitting down.  He can't sit up straight and play with his toys.  He can't run around outside like he wants to so bad.  He can't ride his tricycle around and chase his sister.  

I try to take each day for what it is and enjoy it with my precious gifts, but some days are just harder than others.

Friday, October 21, 2011

A Partial Diagnosis for Caleb

I've been wanting/procrastinating on writing this post. I want to keep everyone in the loop but am struggling with how to put it all in words.

Caleb had his MRI a little over 3 weeks ago. I got a call from the neurologist the next week with the results. He said there were little parts of Caleb's brain that had died and this information coupled with some of the blood work confirmed that he has a Mitochondrial Disease. (Mito for short) The Dr had already contacted a specialist at Children's Medical Center and had an appointment set up for the next week if we could make it.

So this past Friday we went to see Dr. Pascual. The following is an email I sent out to some people later that night.

Well we had Caleb's appointment this morning. The Dr was amazing, one of the leading physicians in the country if not the world for Mitochodrial Disorders. He had done his homework and knew all about Caleb and his history without us telling him anything.

He diagnosed him with Leigh's Syndrome. (feel free to google it if you would like more info. The UMDF website is a good place to start) The Syndrome explains Caleb's issues over the last months, the eyes, feet, vomiting, weak muscle tone, low energy, not walking. The Mito is the cause of the syndrome. (different Mito diseases manifest in different ways) There are at least 20 Mito disorders that cause Leigh's, so the next step is Caleb will have a muscle biopsy in a few weeks and they will try and find the specific genetic mutation.

The disease is inherited so the Dr basically told us not to have any more kids and to take measures to be sure. (Allison is out of the water, she would have symptoms by now. Jordyn could have it, but we have to wait until she has symptoms to test her. We are not concerned at this point) anyway, I don't know that I was ready to be done having kids. (Jason was done but I figured if I give him a year or two he might change his mind) So while the thought had crossed my mind the finality of the Drs statement was hard to hear.

We really have to wait for the muscle biopsy results to know anything more. As a whole Mito diseases are not curable. It is considered a Rare Disease and there are still many unknowns. The method of "treatment" is HEAVY vitamins. He gave us 4 prescriptions for vitamins today (vitamin C, B-1, coQ10, and L-carnitine) but we can't start them until after the muscle biopsy. There is a chance they won't be able to find the specific mutation, IF they do, then they can tailor the vitamins more. Everything is a little overwhelming still.

He said it does shorten his life and at this point can't predict how it will continue to affect Caleb. (get better, stay the same, or get worse) Caleb had a really hard day today, didn't eat much, threw up, really low energy, so that made it really hard too. We are trying to work through the emotions still.

We trust God and believe He is big enough to heal our precious boy. And yet seeing him like he is hurts us. Anyway, prayers are welcomed.

Since Friday we have gone through lots of emotions and tried to begin to process what this means. Thankfully Caleb has had a MUCH better week and that has made it easier. To tell you the truth my days are too busy to think too much about it. Trying to figure out how to carry Caleb and Jordyn down the stairs at the same time keeps my hands full. (literally!) Jordyn has been a wonderful baby and sleeps most of the day and I'm so grateful!

We have been so blessed with friends and family who are praying and comforting us. I hope to be able to post a little more frequently, If not about updates then just a place to process through some things. Comments are always welcome and please feel free to add Caleb to any prayer lists or groups you have.

Some Grief Guidance

So few people know how to grieve WITH people. And I'm no expert, but I have walked down the road myself a few times and wanted to s...