Encouragement

Lydia made it to 15 lbs!!!! Hooray!

She is doing really well with her prop-sitting. She impressed Aunt Becky and some other family members at our family reunion on the 4th. She sat up on my lap for a long time. Her record has been 47 seconds. We're working on increasing that.

Still no rolls since the one at the beach, but we're trying to encourage that too...when she picks herself up on her hands or elbows (which is still getting easier and easier for her) I'm trying to show her how to lean to one side and roll that way. I'm sure that's how she did it the first time by accident...she just leaned so far to the right while she was holding her head up that she fell over.

I recently came across a caring bridge site for a boy with a mitochondrial disorder with defects in Complexes I and III, same as Lydia. It was very encouraging to see how well he is doing. Let me make this clear, so that there are no false expectations...even though they have defects in the same complexes, it doesn't mean that their symptoms or outcome would be the same. Dr Superneau describes it like this....think of the complexes as offices. We know from Lydia's tests that Office I and Office III are not putting out efficient work, but science has not advanced enough to get into the offices to find out which "worker" is causing the problem. So, this little boy's "problem workers" may not be the same as Lydia's, which means that their presentation of the disease and symptoms and control of those may be different. With that said, this is the first case that I have come across with even the same complexes involved. Most that I have seen have only one complex involved. Anyway, you will be amazed at how well this little boy is doing, and any encouragement is wonderful.

I emailed his mom with a brief description of Lydia and her issues and these questions:

When was he diagnosed?
Who is his doctor?
Do you see a mito specialist regularly?
How old is he now?
What symptoms did/does he have?
When did you start to see improvements?
What improvements have you seen?
What has been his prognosis?
Has he exceeded any of the doctors’ expectations?

This was her response:

"Well, our paths sound similar! I will let you check out the "My story" section on his Caring Bridge site (www.caringbridge.org/visit/calebryankelso) for the specifics.

We first heard the term Mitochondrial Disease when he was almost 9 months old. Thanksgiving Day 2005.

Dr Shoffner did his muscle BX, but we see a local mito doc (Dr Hainline) here in Indiana about every 6 months.

He turned 3 in March and right now we deal with reflux and constipation. Along with some developmentally delay and some speech delay. He runs only about 6 months behind.
We started seeing improvements about 3 weeks after starting the cocktail (CoQ10, Riboflavin and Carnitine). And the improvements have been HUGE!!!! And quick at coming. He started smiling again on 12-15-2005 and by New Years Day he was rolling over. He has exceeded ALL of the doctors expectations, and they still look at him with their mouth hanging open.

He is completely potty trained (for about a month now) and we started the process right at his third birthday. So it took about 3 months total for complete training. Not too bad!!!

As with most mito patients, they don't say much about his prognosis. Simply because they just don't know. He is doing well, but that can change any given day. We try to keep him healthy and we make sure he is always WELL hydrated and fed. Caleb is our miracle. They don't know why he made such huge progress and for, all intents and purposes, is now a normal little 3 yr old. We had LOTS of prayer from around the world and wonderful therapists. I stayed home to work with him and we worked CONSTANTLY on what the therapists suggested."

Just wanted to share this encouragement with you. I've been telling Martin lately that I feel like Lydia will walk one day...I can actually visualize her doing it. I see her standing at a little walker, with her head tilted to one side (like she often does) and with that "this is hard, but I'm determined to do it" look on her face...taking small, difficult steps. I just see her as a hard worker. We have been so proud of all that she has accomplished so far. She is such a little trooper. Everytime we have our 30-45 minute medicine sessions, I tell her how proud I am of her...it's terrible for her, but she gets through it. She is an inspiration to many of us. What a precious gift! Thank you God for putting our little Lydia into our lives!