Ok so I know we are not to give specifics about our location and such in our blog but it has to be said.....Lawrence is a great place to be right now! We had so much fun this past weekend with all the basketball hype. Saturday night we went over to Tom and Jan's and watched KU kick UNC. It was awesome!!! After the game some of us took a ride down to Mass Street. There were some 30K people down there and it was crazy! Of course we had to watch the championship game at the Pollard's too, we wouldn't want to do anything different than we did from Saturday night :) I thought Saturday night's game was fun but last night was FANTASTIC! I was not around for all the excitement in '88 so I find this all incredibly fun! The really cute part of it all is watching Raelynn. She gets just as excited. Her favorite player is Sasha Kaun and when he was sitting on the bench at one point she asked me why he was sitting out. I told her he was resting. She told me he had rested enough and should be playing.....she is definitely my daughter.....no sympathy! Anyway, we all had a great time!!! Tonight I heard Terry already preparing her for next year with her new favorite player.....Cole Aldrich.
Tomorrow we head to CMH to see Coop's cardiologist again. Each time I just hold my breath hoping this isn't the time we start making preparations for his next surgery. He is really doing well. I think I had mentioned that we had started infant massage with him. Well I don't know that it is because of that, but he has really seemed to be doing better. We don't have crying outburst anymore and other than him fighting sleep he seems to be much easier to care for. He also wasn't much of a cuddlier but now is really starting to snuggle with us. Whether it is the massage therapy or not, things really started to change since we began the therapy. He still has had a some rough times with Lisa but I am hopeful that it will improve as he seems to be doing so much better at home. I am just so thankful for him. He is getting such a personality and is laughing and smiling and talking. I know I worry like crazy about his next surgery but I feel so fortunate to have the medical advancements to care for him. There is a family that is very close to some friends of ours that spent much time and money trying to get pregnant. Miraculously they finally did only to find out at about 19 weeks that their son has Trisomy 13. Those with Trisomy 13 have additional DNA from chromosome 13 in some or all of their cells. This causes several abnormalities and if they make it to birth, the usually do not survive past infancy. So I read this blog about this family and am humbled by the Mom's grace. She has completely turned the situation over to God and seems completely at peace with whatever she is given. Which leaves me wondering why I cannot feel completely secure with Cooper's situation. I have far less to be concerned with and yet it occupies so much of my thoughts. I have never felt anger with Cooper's situation. I have felt sad and worried and so many other things but never anger yet I find myself wanting this Mom to be just a little bit angry at the situation. So I have no idea why I am writing about all this except to say that this Mom is amazing and every time I get really scared or worried about what might happen next to Cooper I look to her for strength and she doesn't even know it. I think if she can trust God with what she is dealing with I can feel pretty certain he is looking out for us too. It just seems you find strength in different places and many times she is mine.
THANKS TO THE HAWKS FOR GIVING US A VERY FUN YEAR!!!
Burden Bearer's
9 years ago
2 comments:
I just found your blog... I wanted to share with you other families living with trisomy 13 and their amazing stories.
http://www.livingwithtrisomy13.org
You'll read in many of the stories how God has given grace to these families and how grateful they are to have had the time to hold their child. Even if it was brief.
Your son and family will be in our prayers.
Blessings,
ThereseAnn
mom to Natalia, full trisomy 13 - 7 yrs.
Hi im so glad to here that cooper is doing great. It will be hard to find out about his next sugery but like you said god is watching out for him.
Love Aunt Karli!
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