Happy Thanksgiving!

I hope everyone had a happy thanksgiving and was able to enjoy some time with friends or family yesterday. And if you are shopping today - what the heck are you thinking? Some of the stores in Houston opened at 4am! Are you kidding me? That is crazy. Having worked retail at Christmas you couldn't pay me enough to be out shopping today!

We spent the day with Sean's Dad and Step mom (and lots more family). The boys LOVE going to grammy and grandpa's house and playing. Here are the pics from the day.

Both Riley and Miles like to take pictures so there are some different approaches to photography in this album...

Thanksgiving

Everyone have a great 4 day weekend!!!!!

I forgot...

The Holter was completely normal!! (very cool)

We went to the renal specialist this week. He is now 94.7cm!!!!! (up from 88cm in April) So we are growing!! Also he was 14.5kg! (up from 13 - all year) We are happy he has decided to grow. There have been no seizures, only mild pukes, big big attitude, and a cough. He has been on breathing treatments 4 times a day which is a drag but he is a trooper and his chest is sounding clear! Thank goodness! This time last year we were already on our third case of pneumonia. Found out this week that there is Strep going around the daycare but supposedly he doesn't 'hang out' with that class - hopefully those germs will stay away.

Geez! I almost forgot to say...in 6 months we will do a trial off of the blood pressure meds to see how his blood pressure does...fingers crossed! (initially the doc said he would have to take captopril for 5 or 6 yrs because it is scar tissue that causes the high BP and it has only been 1 yr- I guess we'll see)

hugs to all our heart friends!

New Meds Follow-up

So the medication seems to be working wonderfully! He has had no pukes/pass out episodes since we have started taking it! We are so very happy about that :) He did have one giant puke at school but who knows what that could be from. It is hard to distinguish between his pukes sometimes. The first day we took the trileptal it made him sleepy but he has been fine since.

Halloween is around the corner and Riley will be superman and Miles will be batman. They dressed up yesterday for the It's My Heart 'Boo'l-a-thon. They were so super cute! The whole event went really well! We had about 100 people (we could have had up to 220 in the center, but 100 ain't too bad). The costumes were great and everyone seemed to really enjoy themselves. Sean and I did not dress up but alot of the other grown ups did. Corrie and her husband were Al and Peggy Bundy, Sharon and her husband were Homer and Marge Simpson. They looked great! Since I didn't celebrate Halloween as a kid I never think of dressing up. I have done it a few times over the years but not this year. I think the last time I dressed up I was cat woman, Sean was Robin, Riley was batman (same batman costume as Miles) and Miles was cat baby. By cat woman I mean black outfit and ears...not like Halle Barry or anything.

I got to see a glimpse of the It's My Heart Cookbooks yesterday. I can't wait to get mine! They are only $10, not bad. If you are interested go here to check them out or order your own. These are definitely going on my Christmas list this year! :)

Answers to Questions...

Recently the puking and getting tired (seizures) have been more frequent but I personally think he has been doing it since he was 6 months old. He had a day where he had 6 episodes of puking and passing out. Then on the 6th one he stopped breathing, pretty scary. The EEG then was normal.

I think it is a product of his CHD because it is a vessel, I don't have the cardiologists opinion yet.

We have a diagnosis...

Epilepsy. Interestingly enough it is a 'product' of his CHD!!!!! He has a congenitally underdeveloped vessel in his right temporal lobe where the seizures are originating from. I guess because it is part of his vascular system it is CHD related. (that is how the Nurse Practitioner put it). An incidental finding is that he also has a very small cyst next to this vessel but they don't think has anything to do with his seizures. He will start Trileptal tomorrow (the pharmacy has to order it). His seizures are on both his left and right side which (she said) goes along with epilepsy - something about if it were only on one side it wouldn't be epilepsy...I don't know. Anyway, the meds should take 2 wks to work but will make him drowsy and possibly dizzy. It won't interact with any of his other meds but we will need to monitor liver function I believe (as with most epilepsy meds). I just realized that because it is caused by a congenital defect he won't ever grow out of it...that sucks.

So I guess I have to get him a new medic alert bracelet...