Friday, March 11, 2011

Running and Running and Running

Mom here and I am EXHAUSTED! I feel like we are constantly in motion running from taking kids to daycare, mom to work, returning phone calls, kid to the doctor, running back home to meet caseworkers and new therapists. Every night this week we have had someone at our house at 5:30 either to work on adoption for our girls or to assess Andrew or to renew our CPR certification. And then today baby girl vomiting canceling out my day of work. AAAHHH the joys of parenthood.

Our big boy Andrew is doing well and is such a source of happiness for the whole family. He has been on a seizure medication called Topamax for some time now to reduce his breatholding and hyperventilation. He seems to be doing somewhat better on this medication but it has not cured breatholding and hyperventilation, which are both part of Rett Syndrome. He was placed on a nasal steriod to help reduce swelling for mild sleep apnea and a 24 hour EEG was recommended to be done from his sleep study results. Not really wanting to do that one just yet as the last time around it lasted 3 days due to faulty leads. He also got a new team of therapists, PT, OT and Speech as our insurance changed as he no longer qualifies for ABA I am super excited about getting him back on track with therapies. He finally got his wheelchair after battling with insurance and medical equipment companies for 2 and 1/2 years. Although Andrew can walk his endurance is weak and long distances aren't possible. This makes things so much easier for trips to the zoo, sea world and Morgan's Wonderland as well as the mall. YEA for Drew!!! Our big source of stress lately has been what will Kindergarden be like next year for our sweet boy. We will be meeting with a special ed director in 2 weeks to determine what kind of placement will benefit him best. Andrew continues to struggle with hand function and movements and when his hands aren't wringing he is asleep. We are hoping to find something besides his arm immobilizers to help with this. We will be taking him to the Rett clinic at TX Children's in 2 weeks so stay tuned for updates.

One big YEA for our family is that our girls will be adopted in May. Could this really be??? Finally after almost 2 years of fostering they will forever be ours. I love my girls! And I really love our new baby Norah Grace. She is such a sweet baby and reminds us of how precious Andrew was at this age. Thank you God for our sweet kiddos. Before we know it they will be in junior high.


Jenna said...

Hi Andrew
My name is Jenna and I came across your site. U are a courageous, determined and strong fighter. u are a brave warrior, smilen champ and an inspirational hero. i was born with a rare life threatening disease, and I love it when people sign my guestbook.

Jenna said...

Hi Andrew

My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a super hero, super trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. I love it when people sign my guestbook.

Lindsay craig said...

I've been trying to find people with boys with rett. My son tanner has just been tested. Should find out in 5 weeks if this is his condition. Would love to talk to you:)

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