10-10  Ryan started Kindergarten and is loving it!  We have battled a cough or two but overall he is doing great.  He loves his teacher Mrs. Neller (Kayla had her last yr and she is a wonderful teacher!!) and he loves having so many friends at school.  He is just amazing!  He has adjusted to school so well,  Not many people know about Ryan's entire story at the school, I don't really advertise it.  So, what I am trying to say is that looking at him you would never know what he has been through.

 

7-26-10  Boston Check up!  We went to Boston Children's for our annual transplant check up and Ryan is doing awesome!!  His iron was a little low so we will replace that with iron supplements but all else looks great.  They did run many blood test and we are still waiting for the CMV results but since transplant they have always been negative so I am of course hopeful :)

 

It was interesting traveling with 3 kids, 2 who have CF and all their equipment and meds!  We lugged one vest and one nebulizer with us and they just had to make due with taking turns.  Airport security didn't question all the meds, syringes and feeding tube apparatus we had.  However, they did take our nebulizer apart to make sure we were not hiding a bomb lol!  I wanted to say to the guard... "believe me, if you knew all we've been through to keep these kids healthy and living you would never have to question us or worry about us blowing up a plane!"  But, we did our thing and lugged all our stuff... you've got to do what you've got to do.

We had a great trip to Boston and got to see lots of family and friends.  We spent a couple of nights up in New Hampshire and surprised Ryan with a "Day out with Thomas" his favorite train!  That was priceless!!   I am just so very thankful that all went well with Ryan, we are so blessed!!

 

Ryan did have his check up with the ENT this week to check his newly placed ear tubes and the poor kid has an ear infection so we are doing drops for a week and then being rechecked.... he never complains of pain etc.  He's not to fond of ear drops but he does them.

 

I often think of that "Dr" in the nicu that told me basically there was no hope and at some point we would have to make the decision to take Ryan off of tpn and just "let him go"  she obviously had no idea 1. Who she was dealing with, and 2. what the hell she was doing!!  I'd love to take him back there and just say "look"! 

 

My hope is that somehow, somewhere this message gets to someone who is going through what we went through and we can shine a little "HOPE" on them!!  Because there is always hope and Ryan is living proof.

 

5-3-10  Happy 5th Birthday Ryan!!!!!  We Love you so much!!!

 

3-1-10 Wow another year to add on the update bar!  Thank You God!!

Ryan is doing great, his development is right on track.  He is loving prek and having his own little friends. I can't believe he will be starting kindergarten in the fall!  I know he is more than ready but I am not quite sure I am!!  He is such a smart little guy and has an unbelievable memory..it is scary at times!  He has such a funny sense of humor and an outgoing personality....he is just a joy!  I am just so very thankful that I am his mom.

 

Health wise, he is doing great.  He had a short stay in the hospital along with Kayla, they both had RSV.  We have had some problems with coughing since. Both kids are doing their vests each night along with pulmozyme.  They don't really like it but they know they have to do it and this is our life. 

 

We are planning to take a trip up to Boston during the summer to see the docs at Boston Childrens and then we are going to have some fun, see family and friends and take a mini vacation to the Cape or New Hampshire, we'll see. 

 

Ryan is also very excited for his 5th birthday coming up!!  We gave him a choice to go away as a family or have a party and he chose to go away.  We have a mini trip planned and I'm really looking forward to it.  Can't believe my baby is going to be 5!