October 2011

Happy (early) Halloween everyone! We've stocked up on the pumpkin muffin and pumpkin waffle mixes and have visited 1 of 3 anticipated pumpkin patches in preparation of the special holiday and could NOT be more excited! I won't spoil the surprise, but Henry will be dressed in his favorite super hero's outfit if we can convince him to put it on... not the reaction we expected when we received it in the mail, but we still have time! Luckily the cape is a big hit (he has been "flying" around the living room to the sound of a space shuttle launch)! We think this is a good starting place:)

Today is the anniversary of Henry's surgery one year ago. At times we've been overwhelmed with emotion while thinking about how challenging a time that was for him and our family. It's incredible to me that a year has gone by, as I remember those six weeks like they were yesterday. I remember the chaplain rushing to us that first night when Henry took a turn for the worse and feeling the strength of complete strangers praying with us for him. I remember holding him as he struggled so hard to breathe on his own and feeling the heartbreak of knowing he would have to be re-intubated. I remember dressing him up in his Halloween costume while he was unconscious in bed and feeling the sadness of seeing him there instead of running around our neighborhood trick-or-treating. I remember coming back into the hospital after a decent night's rest in my own bed, to find my tired mother holding Henry (seemingly all night) and feeling the love she held him with despite the awful conditions. I remember the first time Henry clapped his hands in bed, and the hope we felt as we began to see Henry slowly coming out of the haze of surgery with signs of himself. I remember feeling the warmth of kindness of others so acutely- the food brought to us, the care packages, the compassion from staff of every medical discipline, the smiles of confidence from friends, the healing hugs from family and the supportive emails from strangers. I remember looking into Julie's eyes to find strength and feeling confident we could get him through this awful time. This time of reflection always reminds me of how rich with love and support our family is, and reminds me to thank everyone within this support system we are blessed with more often than I do. Thank you for all the roles that you have played in our family's recovery from this time and the celebration of Henry in the last year- it continues to heal and strengthen us in ways unimaginable.

Puts everything in perspective as I drone on about day to day challenges, huh! Happily the ups and downs of life go on and they seem like mohills instead of mountains:) Well, our evaluation and "pre-IEP" meeting with the school district have gone surprisingly well. Henry qualified for support from all areas and will be eligible for OT, PT, speech and a developmental coach/teacher support starting December 2011. We met with the school district Early Intervetion Pre-School Program representative and a teacher with Borderstar Elementary School and talked about the options available in order for Henry to access these needed services. Julie and I are now considering the two main options for Henry that include 1) keeping him in his part-time (three days a week) private pre-school he has been attending since April and taking him to the Borderstar/public school to receive the therapies over the course of his two days off or 2) transferring him to Borderstar Early Intervention classroom that meets for a half day Monday through Thursday where he would obtain services during the course of the school day/morning. We will have to make a decision by the end of this month, but the good news is that I don't think we have a bad option to choose. We have a parent teacher conference with his current teachers the middle of this month as well as a visit with Sherry, Henry's current OT who has recently observed him at his school, so we will get some needed feedback in order to help in the decision making. So more on that soon!

As we dig around for winter clothes we realized our man has grown quite a bit in the last year- another thing to be very thankful for!! Much more in the height department than weight of course, but very impressive to see Henry's long pants all look like "capris". Grandma helped us stock up on the fleece PJs and we even found one with rocketships on them... Henry might have difficulty sleeping those nights:) We hope you have a wonderful time over Halloween as we kick off the holiday season ahead!!

Much love,

Kate, Julie and Henry