Thursday, January 05, 2006


Yesterday I had a lengthy meeting with the coordinators of the local Birth to Three program. They help you navigate you through the system of medical clinics and the various therapists to get Max on a good path towards success! I was quite eager to have this meeting because I want to move full force ahead with his therapy....we have some catching up to do after that lengthy ICU stay! Great to have that all in motion now...hopefully therapy can start next week once the "paperwork" is all in place. :)

I had to answer a million questions to determine where Max is according to the developmental charts. The one he scored the best on was "social/emotional" and his lowest was "communication" due to his significant hearing loss. That is going to be one of our more difficult areas until Max adapts to wearing his hearing aides. And even then, we must determine if they are truly working for him since he has a mixed loss. I am hoping once they fit better and he becomes more used to them, it will make a big difference for him. If not, we would be looking at cochlear impacts in the future....IF he is a candidate.

I am REALLY looking forward to starting our work with the therapist...hopefully Max enjoys it too! We worked with OTs in the hospital but so many of the times Max was not up for it because of his fragility. But now that he is getting stronger and more stable, I think we will really start seeing changes! :)


Ruthie said...

I am so glad he didn't have to go into the hospital. And I am sure that Max will enjoy his development therapies- anything to make his mommy happy! I love, LOVE the pictures! He looks so handsome in his white pj's especially. And the hand thing while he sleeps just shows how content and happy he is having you and all his family around him to squeeze and love on him. You guys are doing great and I am so happy for you! Sending my love-

ang said...

I commend you again on Max's care. To keep up on top of it and ask many many questions regarding all the what ifs and what abouts.

I can't tell you how many times they told me cody wouldn't be able to do something and he proved them wrong. He's 11 now, and has more surgeries to go. But each time he comes through with flying colors and they are just amazed how he keeps a positive attitude.

I hope you will be able to do baby sign language with Max. It helped so much with Cody not being able to talk properly and his hearing problems. I was able to understand his needs a bit better he picked it up quickly. Milk and cookies mom!!! (LOL=Laugh out loud)

You're doing great..Just remember to exhale, and then of course inhale again.


Heather said...

Brady just graduated from Whatcom Center for Early Learning (WCEL) and I know that Maxwell would love it there, they are part of the Birth to Three program, and Brady was so happy there, it broke my heart when he turned three. And Missy Bartel at Connections SLP has worked with Brady for over a year now, and she is one awesome lady if you can get in, she works with Bradys speech and eating (oral/motor).
We are lucky to live in a county that is so supportive, take advantage of all you can!

jen said...

Your little guy is darling and you are amazing. I have loved seeing all of the photos. I just wanted you to know that you and Max are in my thoughts and prayers.

Anara said...

I'm so glad that Max wasn't admitted to the hospital. It
sounds like you are getting all situated in Billingham. I think
that Max will like his therapy, and
I'm sure that our amazing little guy will excell in it. You two take care, I am praying for Max's
development, hearing and all of
his sweet little self!!!!
I love you two, lots of smooches
for Max.

Love, Anara

JenEspo said...

Oh my! He is so cute - him in his little hat and stroller is my favorite! I didn't get to say congratulations on coming home - so congratulations! I'm so happy he didn't have to go back into the hospital. Keep the pictures coming! They are adorable!

wakara said...

Amy and Max,
Max looks absolutely gorgeous as always. Amy you're doing a great job as usual. I hope all is settling down after his little sickness and you're able to get in a routine. I'm so happy for you two. Remember to take those much needed coffee breaks. You and Max are amazing and you're both doing an amazing job. Keep up the good work and I'll keep you in my prayers and thoughts. Miss you tons-

eileen said...

Amy and Max, Welcome to Bellingham, a community of great support for individuals diagnosed with CHARGE syndrome! It is wonderful you two have finally made it home from Children's Hospital in Seattle.

Reading the article in the Bellingham's paper on Sunday brought back memories for my family and I. My son, Shaun, is presently 12 yrs. old and in 6th grade. Shaun also has been diagnosed w/ CHARGE syndrome. Numerous surgeries, and more to come... but after a while it's just part of our daily expectations.

Shaun too has exceeded the doctor's expectations in more ways than one... We too started with the Birth to Three program, then on to Whatcom Early Learning Center, on finally on to Developmental Preschool in the Public School System. These programs are FANTASTIC, because of the wonderful qualified specialists in each of these programs.

I could go on & on....but...the main reason I'm writing is to let you know that YOU have support here and it's a wonderful community.

We live in Blaine and am available at any time if you would like to contact us. Have a great day!