Tuesday, December 25, 2007

Christmas Morning


Monday, December 24, 2007

Waiting on Santa

This is the first time EVER that I found Luke sleeping on his tummy. 1st time EVER!! Of course, I had to run and take a picture. However, momma bear quickly rolled him to his side. :)
My little mister waiting on Santa in his bed and fell asleep on his tummy.
Merry Christmas Eve blog family-----We love you desperately-----A

Thursday, December 20, 2007

On the road to weaning...

Ok bloggies....(see video below)

Our dietitian came by last week and said Luke gained 1 lb this past month on baby food! We did not raise the formula (that goes through his gbutton) last month...instead we raised the baby food quantity and he gained!! We were so excited as that is our first sign of tube weaning.

So, from this point forward, we will not increase the formula through the tube anymore. We will increase his baby food as his nutrition charts show each month for his height/weight.

I'm hoping in the next month or so we will be able to CUT the tube feeding amount and then the process begins! It's so exciting.

Here's our little mister eating "Nanna's". (BANANA's) He doesn't actually say "Nanna" but for some reason we find ourselves saying it that way. Not good speech therapy skills...but it's so cute to say.

Oky Doky...enjoy! I do realize that this is a seriously long process. But, I wanted to post our first official accomplishment!

Wednesday, December 19, 2007

Another CMS friend...from France

Hey everyone!
I just had to post this. Ok...it's been a long time but with me creating Luke's CMS BLOG ....I had a dad contact me from France. His name is Philippe. His son's name is Nathan.

His son is 21mths old and has the EXACT GENE MUTATION of CMS. The Rapsyn gene. Meaning, Nathan and Luke have exactly the same genetic 'gene' that is considered defective. I hate saying it that way...but you know what I mean. It's hard to explain the genetics without saying words like "defective, mutate". Etc. I like to word that one of my gene's and Jon's gene collided. But..the neuro stares at me with confusion when I state this. LOL

Ok..! So..here is Nathan. Luke's first CMS friend and penpal. He's a FRENCHBOY!
I did write the father and told him that if by chance Luke/Nathan ever meet..... would it be ok if we opted to fly to France?!! LOL. Translation: We want to come visit and stay with you for 4 weeks and you be our tour guide. LOL again.

Doesn't he look just like Luke?? It's crazy!! He started on mestinon at age 4mths!! Yes..you got it. 4mths! He was diagnosed at 6mths!! France must be way ahead of the ballgame. I was a bit upset to read that. So...with that said, Nathan is finally walking! The dad told me to get ready as when Luke walks it will be an emotional day for us. You bet Philippe! It most certainly will.

Ok....hope you enjoyed blog family. I'm just desperate to build my baby's community for him so that when he's older he'll have friends! Can't wait to see what God has in store for Lukester and Nathan.

Oh----P.S. Yes, Nathan has a tube. Their stories are crazy similar. The dad said it's unbelievable to read Luke's story as it's so familiar to him and his wife.

Love ya'll so much,