First Roll!

Thanks for the prayers for good weather at the beach...after my last post, it was storming....in just a couple of hours we were back at the beach! We had a good time....a bit of bad news: Audrey was stung by a jellyfish. She was with her dad and granny...in hindsight, I'm glad I wasn't there...her dad said she maintained a screaming cry for about 30 minutes...probably too much for mom's heart. :) They took good care of her, and she was fine by the time they got back to the room. A bit of good news: While they were on the beach, Lydia woke up from a nap...I could hear her "talking," so I went to check on her....she had rolled over!!! That was the first time ever, by herself!!! She hasn't done it again since then, but I think it is only a matter of time.

Appt with the surgeon is set for Monday. Hopefully, plans for the G-tube will progress quickly. I was a bit down in the dumps yesterday....I weighed her for the first time in about a week...she had lost weight. She is now at 14 lbs. 11 oz. We also got her CoQ10 in, so she is on a very full med schedule...with her added antibiotic for the UTI, she is taking 13 doses of medicine per day. She is getting pretty tired of it, pretty quickly...so am I. I feel so sorry for her...I understand why she hates it so much. One good thing is that she has not reacted any more adversely to the CoQ10 than any other medicine....I had been told that the taste would be so bad that we may have to add it to fruit juice or yogurt or something (which would be another fight). Lydia doesn't seem to have a taste preference...she pretty much can't stand to have anything in her mouth...it doesn't matter if it is strong, bad-tasting medicine or tasty banana pudding, her reaction is the same. At least the G-tube will make giving medicines easier. I won't have to worry about upsetting her with taking medicines or that she is getting the full amount (since she often spits out plenty of it.)

She is now on the full dose of the Keppra (seizure medicine)...since Monday...so, please pray that she does not have any more seizures. She hasn't had any since the one last week.

I had been told by other parents of mito kids that we would see a huge difference when we started the CoQ10...more awake and alert time, more stamina, etc. So far, we haven't seen that. In fact, she has maybe been even more tired the last couple of days. Of course, she's only been taking it since Tuesday...so, I won't give up hope yet.

Those of you who visited the website, Jude's Mito Journey that I mentioned in another post...might have seen the Fais-Do-Do that was advertised. It is a fund-raising event in Sulfur, LA organized by Jude's mother to raise money for mitochondrial disease research...the money goes straight to the United Mitochondrial Disease Foundation. Martin and I have plans to attend. You can visit http://www.judesmitojourney.com/fundraiser.htm for more information if you are interested. It is an adult-only event...only kids with mito are invited to attend. If you would like to purchase tickets, you can go to http://www.kintera.org/faf/home/default.asp?ievent=277894. If you wish to make a donation to UMDF in Lydia's honor, we're asked to solicit donations during Mitochondrial Disease Awareness Week, which is September 21-27. An interesting fact in the email from Jude's mother: "If you measured the government's funded projects as a football field, mitochondrial research would account for about 3 inches of that field. "

Thank you all so very much for your continued prayers and support. We feel your love. God is so very good to us, and we praise Him for sending you all to us! I want to extend a very special THANK YOU with love to the eighth grade students and Ms. June Hebert at Holy Family School in Port Allen. We recently received a very special card with a special donation that they collected for Lydia during the school year. THANK YOU for remembering Lydia in your prayers this year and for sharing this gift with her. We are so very grateful!