May 29th EEG

Anya had another EEG today and did pretty well. They got some good data. She is still showing Epileptic form wave pattern, or something like that :) BUT it is better organized than the last EEG. So there is improvement and we will take it!!!! That is good news. She's doing really well and we are very thankful. That's all for now.

New Pics of Anya B-Day Party have been added to Videos and Photos

 

5/23. Cleveland trip update

We had a good visit at Cleveland (Dr. Cohen for metabolic & Ghosh for movement disorders) and will give an update later. The short of it is we really didn't learn anything new (nor did we expect to). It did confirm we are on the right track by looking at a metabolic disorder. They fortunately aren't pushing for a muscle biopsy yet and they understand why we don't want one. They wanted to repeat a few of the blood labs and we'll get results on friday and set up a coarse of action accordingly.
For now we are stuck on a plane in oklahoma city. Bad weather in kansas city required us to divert the storm but we needed to get more fuel to do so. I guess that stuff's important for keeping the plane aloft. Anya has been great traveling. She's sleeping right now..

Happy Birthday Anya

Today is a great day to celebrate, Anya is 1 yrs. old. Happy Birthday Anya!!!! You've brought so much joy and love to our life. Mommy and daddy thank you for coming into our lives and making everyday so special. You have brought more meaning to our lives than you will ever know. We truly are blessed to have you. We love you baby girl, Happy Birthday.

May 21 Almost 1!!!!

Anya had a really busy weekend. We celebrated her birthday with a big party on Sat. It was wonderful to celebrate such a special day with friends and family. On Sunday all 3 kids had their baby dedication, it was really special. Tomorrow we leave for Cleveland to have a consultation regarding mito and a muscle biopsy. We will also meet with a movement specialist, should be interesting. Pray Anya does well on the flights, I'm a bit nervous.

 

 

May 12

Anya broke her really good run of not throwing up on Thursday. She started after dinner and a little throughout the night. She managed to hold half pedialyte and formula down Friday. It was a pretty fast recovery so that was good!

 

Happy Mother's Day to all the moms! Have a wonderful weekend.

 

 

May 4 Quick Update

Anya is doing really really well. Today she had OT, PT and Speech and they were all very happy with the progress she is making. Everything, her muscle tone (she's starting to use her stomach muscles which is great!), swallowing, tracking, smiling, verbal sounds, it's all coming together!!!! We couldn't be more proud of her, she is def. putting in the hard work to make these things happen. Great job Anya!!! We are so blessed to have been given three beautiful children. Praise God!

 

Thank you for your continued support and prayers. They ARE making a difference!!!!!!!