Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Wednesday, February 15, 2012


We have so much to be thankful for! February is a time we reflect on those we love and those we appreciate as well. I am thankful for CHD Week or heart week to remember all the love that we have felt through out our heart journey.

We all decided that if we had a chance to throw all of our trials and life lessons into a basket, we would surely take our same ones back out again. It was hard to experience the things that we did, however the blessings and lessons are so much more amazing that it is so worth it all.

Gator's special heart is amazing. 1 in 100 babies are born with some degree of CHD.... Wanna know something interesting... There are five people on our street alone. Two mom's who didn't even know they had a CHD till they were past having children.... The other two boys years older than Gator and yet still amazing to me. Five on one street!!!!

We wore our heart clothes each day! We also did a kick off at the wonderful Taylor Andrews!

Gator had his testing done.... He blew the speech therapist out of the water with his vocab/description of things. He didn't qualify for any of the wonderful programs. However, there are things to work on. With a list of places to procure items that will help me, I am determined to help this little guy be ready for kindergarten. There is still time and we can be better. I was right in feeling that his fine motor skills need some help. They want us to make cookies as therapy. Digging out the chocolate chips and then pushing them all in again. Hey I can handle that kind of therapy. We are to also try a peg board. We have been using Legos and that is helping some but Gator will still try to compensate by using his mouth/teeth to get little things apart or together. So we think a peg board will help. I am going to check out some apps and we are also going to check pintrest and see if there are others out there with more methods...

Munchie needed more heart things to I made her a skirt... I wanted to make shoes too, but I ran outta fabric... Meh... next year!

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1 comment:

Cynthia said...

I'm so glad he's doing great! I suppose both of our twins would qualify as the 1 in 100, though it appears their issues have resolved, thank goodness!

On the fine motor skill thing- you're on the right track. I regret terribly that I didn't push it more with my son. Logan is so physically adroit that it never occurred to me he might need extra help with motor skills. His handwriting is still terrible though much improved with help from my Aunt. Just keep going with the fine motor development because it's better to do it while they're little than to play catch up.