Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Wednesday, April 24, 2013

and Rainy Minnesota

Well today the snow turned to rain.  We got "winter" yesterday, "spring" today and by the weekend are supposed to get "summer". 

Today was a good day.  We met with the neuropsychologist who assessed Coleson's development.  Cognitivly he is right on track for a 19mo old.  He has some delayed speech and some delay in his motor skills but otherwise doesn't seem to have any serious developmental delay.  It is expected that the chemo and BMT will halt some of his development but hopefully he will recover in these areas.  We will start occupational, physical and speech therapy and meet with all these specialist tomorrow.

We had a little bit of a break from the Drs. today and Paul even got to run along the river. 

We headed back to the hospital late in the afternoon to meet with the cardiologist.  His EKG and echocardiogram and x-rays all looked good.  He has a very small opening between the Aorta and Pulmonary arteries which is unrelated to MPS.  All babies are born with this opening but it typically closes within 48 hrs after birth.  His is very slight though and the cardiologist is consulting with another to determine if this needs to be corrected with surgery.  The cardiologist was surprised at how unaffected his heart was by the MPS (he must have gotten his father heart - not mine!).  There is some slight thickening of the valves but on the spectrum his is on the better side.  We left the hospital feeling good that at least he has a strong heart.

It was Bingo night at the RMH and Paul won on the first game.  He got Coleson some Hot Wheels which he is thoroughly enjoying. He is getting a bit bored of the few toys we brought.  It is amazing the number of prizes they had and they gave away all of them tonight.  Families who won multiple times received numerous prizes.  Which for these kids who are here for weeks/months at a time is so very appreciated and needed. Bingo is a weekly event and I am amazed at the donations that RMH receives.  It truely is amazing.

Peyton is having alot of fun.  We are so fortunate to have technology like Skype to be able to see and talk to her nightly.  She had fun at Grant's house on Monday and went to Rachel's friends Monday evening to play with her kids.  Tuesday she went to Issy and Quinn's house and played with stickers, Kim sent me pics, and Brody came over Tuesday night.  Today she had Gymnastics and my friend Andi's mom is watching her while Rachel is at school. I think she is having so much fun that I'm not sure she wants us to come home!  But I do miss her dearly and can't wait to be able to give her hugs.

Tomorrow is a busy day with all the therapies, the ENT and the pulmonologist.  Friday is the Big day.  He has surgery to place his hickman line and G-Tube as well as has a sedated eye exam.  He also will get his first inthrathecal injection and our first stay overnight.  Saturday he will have his first ERT and hopefully we will be able to go back to the RMH by Saturday night.. and home on Sunday. 

I have received several emails and texts over the week from friends, family and colleagues.  I truly appreciate everyone's kind words.  I may not get a chance to respond to all of them but do know how much they help me get through this.  Today was a good day but they won't always be good and it will be the emails and texts that I will reread again that will help in those times.