The Latest...

I'm sorry it has been so long since I've updated...we have been crazy busy lately!! I am keeping a log of all of the phone calls that I have to make on a daily basis with each response I get...I don't trust my brain to keep it all....doctors, insurance companies, etc. I'll try to re-cap some of the info from the last several days:

Phone conversation with Dr Alberty (GI):
Martin and I decided to move forward with plans for the G-tube. I called Dr Hollman Monday morning and told her not to worry about coordinating with Lydia's other dr's...we feel like it is the right call. After looking over Lydia's notes from the last month, I realized that she has not gained a single ounce since June 1st. That hit home. That coupled with the medicine struggle made the decision pretty clear this time. So.....I called Dr Alberty Monday morning...he agreed that it was the best idea. He said that in dealing with mito patients, nutrition is often a concern....he said that we want to maximize her brain function and functions of all her cells, so we want to take nutrition out of the equation. We want to be sure that we are doing everything in that regard to give her the best life possible. He also said that mito patients need more calories in order to gain weight than typical kids. That explains why she has not gained in the last few weeks even though she has still been eating well (until recently, anyway). So, the plan is to get the G-tube and then schedule an appt with him to discuss the plan for nutrition. We will probably do night-feeds, which means that she will eat as usual during the day...then, at night we will hook her up to a machine to supplement feeding while she sleeps. That way, we won't supress her hunger during the day, and she will still eat as she usually does.

I called to schedule an appt with the surgeon, but I need to follow-up on that tomorrow. I wanted to schedule an appt for Lydia and Elise together....Elise has a little skin tag on her bottom that we saw a surgeon about several months ago...he wanted us to come back in a few months. Well, another surgeon was highly recommended by a couple of friends so I wanted to switch. The receptionist said that they had to ok it with the first surgeon before they could schedule the appt....still waiting to hear back from them.

I was a little worried about Lydia today because she seemed to be more tired than usual...maybe even a little lethargic. We'll keep a close eye on it, but I think it is because we just started the second round of upping the Keppra (seizure med) last night. She is now at 1 ml twice a day...next week, she goes up to 1.5 ml twice a day and that is what she will take from then on out. Both Susan and our Blue Cross Nurse Case Manager told me that it takes about 2-3 weeks for kids to get accustomed to taking a seizure med and that it is perfectly normal for her to be a little less alert. Susan said that it is because it relaxes the central nervous system...makes sense. We've noticed in the past week that she doesn't smile quite as much and seems a little more "out of it." Hopefully after her body gets used to the med, we will see her get back to normal. Tonight seems better though....she is vocalizing a lot and seemed to be "playing" with Elise earlier. She is really responding better to her lately. They have a little bond now.

NO SEIZURES since the three last Monday!!!!!!

Pushing up her upper body while on her belly seems to be getting easier and easier! You wouldn't believe it...I'll have catch a shot of it. She gets her head way up in the air and she does it all by herself...without me putting her up on her hands. That is great news!!! Any progress is encouraging! She has her own little cheering section here too...it's fun! If Martin, Audrey or I see her doing it, we yell at each other to come see, and we all cheer her on. Even Elise will point at her and laugh and say, "Yiya." That's "Eliseeze" for Lydia. Our newest trick is to put her on her belly on one of our small throw pillows on our bed....she'll lean to one side and accidentally roll (or fall) to her back....we all cheer and she smiles every time. We figure that if she feels that motion enough, she'll feel confident enough to do it on her own on a flat surface. We'll keep trying!

Lydia has also been doing a much better job of prop-sitting...resting her hands on her legs and sitting up. I usually have her do it in my lap....last night we counted 46 seconds!!!! That's big!!!

Susan and I talked yesterday about Dr Hollman's prediction about not talking or walking. She agreed that most kids she has seen with myopathy do not talk. (Lydia has encephalomyopathy...which basically means brain and muscle weakness.) But, she said that she has had success with some kids in a walker. She had one patient that started in a walker at 18 month....he didn't have the balance reaction to walk alone....and he still walks with the walker at 7 years old, but he gets himself around pretty good. We will consider that a possible option for Lydia. She noticed that she does move her feet alternatively when you stroke the tops of her feet, so that is encouraging. It may be a pre-cursor to crawling and/or walking.

Lydia has an appt with a pediatric cardiologist Thursday afternoon...Dr. Crapazano. Please pray that we get good news.

I will be working the next couple of days...and we leave for a much needed vacation on Friday! Big Thanks to Ms Hilda for taking us to the beach!!! Yeah! We'll be hanging out with the Poche family for the weekend. So....I expect to update again early next week.