Today is Nova's 2nd birthday and I know Erin and Scott are most likely not having a good day today. I can't believe it's been two years already I miss him so much he and Ryan were going to be best friends and grow up together. I wish with all my heart that he was still here. I love you Erin and Scott you are both in my thoughts {{{{{{{{Hugs}}}}}}}}} for the whole family. If you need me you know where I am.
A friend that wants to stay annomyus is going to match by 50% the donations taken in from the afghan raffle below. Time is running out fast and so far we have a total of $10.00 so come on she really wants to spend way more than $5.00. Who is going to make this mommy break the bank.
I am going to raffle off a hand made afghan (that I will make after the raffle in colors of your choice) The money made will go to the AHA for team Nova. It will be one entry for $3.00 or 2 for $5.00 go to paypal.com and send the money to erin@poeticacceptance.com and be sure to put "afghan raffle" in the note space. The raffle will run until Sept 7th.
Here is the afghan design I will be using........
Congenital heart defects are the #1 birth defect. In the US alone, over 40,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 100 births.
(To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.) Nearly 4000 of the 40,000 born of those with a congenital heart defect will die. That makes Congenital Heart Defects the leading cause of defect related death in children.
Even though Congenital Heart Defects are the most common birth defect, they remain the most unheard of. Without raising awareness, the advances we're hoping for won't be available. Funding for childhood cancer research is five times higher than that of CHD research, although twice as many babies die from CHD's.
And yet, most people have never even heard of Congenital Heart Defects unless their child or another family member is diagnosed with it. Two of my children were diagnosed, and died, of CHD.
So far we've had no bad side effects YAY. The drooling has gotten much better already and it's been a week today. She has also decreased how often she bites her hands I have only noticed her bite once in two days and it used to be like 50 or 60 times a day that she would bite and this has me very excited I might be able to get rid of the gloves if she continues to do well YAY!!!! We go back July 12 to see the neuro and update him on how she is doing.
Seizures
When we went in for the botox the neuro increased her Keppra from 400mg a day to 600mg a day because she had a seizure two weeks before we went in for the botox. She seems to be doing well with the new dose and so far no seizures that I can see so cross your fingers that this is the dose for her.
Schools out
She has been a bit bored since school got out but taking her to events has helped a little so that is good. Today I put her in my big garden tub for a swim and she loved it she loves the water. I will have to get her out a little more though or invite people over to help keep her busy so she isn't so bored though because she is a monster when she is bored. I hope you all are having a nice summer break with you kiddos chime in and tell us what is going on with your little one.
Well let me see we have had a couple of good things that have happened. First Shelby has gotten used to the seizure meds and is doing great on them she is back to her old self and making progress again. I am thrilled she is doing so well. Her teachers have even noticed that she is doing better so I guess the seizures were effecting her more than normal.
Now for the better news we went to the Orthopedic doc and her curvature has not changed in 5 months yep you heard it NO change at all so we can wait for surgery we don't have to go back until November and if all goes well then we can wait another 6 months. I am so excited even though I probably didn't seem to be at the appointment. I had gotten myself all prepared to schedule surgery when we went in so when he said we could wait I guess I was a little shell shocked and worried that waiting might cause other problems but the longer I can put off someone cutting on my baby the better ya know.
It was great she had a wonderful time and got to meet some really great kids that go to Piedmont high and seriously they were awesome with the kids that came out to enjoy the VSA. For anyone that doesn't know what the VSA is here is a little description. Piedmont raises money every year to help out special needs kids in Union County they hold an Art festival with some of the money they raise and award prizes to the kids that win the art contests they also gave 5 teachers a surprise package for their classrooms this year. This year there were all kind of art booths set up where the kids could make things like macaroni necklaces, they colored muffins and made little pillows out of them they had their pics taken and the kids from Piedmont put on an awesome play where they acted out the book if you give a mouse a cookie (and they were wonderful) I think I had just as much fun as Shelby did. Seriously every year the VSAF gets better and better and I am glad that Shelby and I can participate. Here is a link to the pics I took there are just way too many for me to post here. The pics are a bit dark because my camera sucks when I'm inside and far off from the subject but hopefully you will be able to see some of the wonderful costumes and background. A little FYI the background was painted by the art class at Piedmont middle and it was awesome.
Special Olympics
We had a pretty good time but I have to say we had a better time at the VSA. They just wern't very organised at all and the kids had to wait forever for their turn and they didn't stop the events for the kids to eat lunch anyway I was a bit dissapointed. I did get some great shots of Shelby and some of her friends playing the games.
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