Monday, May 04, 2009

Two posts in one...

Today is Miles' 5th birthday!!!! I can't believe he is so big! He had a great birthday party over the weekend at Chuck E Cheese and loved playing with all of his new toys/games.
The last 5 yrs have gone by so quickly and so slowly at the same time. When I think of all he has done in his 5 yrs versus what I have done in my 33 yrs it is astounding. I am so proud of him for so many reasons.

He has his 5yr check up tomorrow and will need to follow up with his neuro from the seizure (if he will return our calls...grrrr!). He has been quite tired all the time since the seizure last week. No obvious reason for being so tired and doesn't seem to be sick at all unless it is coming on very slowly. He just doesn't have the stamina he did just a week ago.

Today we will celebrate again but I am not sure what we will do yet. Thank you all for being on this journey with us and praying for my amazing 5 yr old maniac :)
April 30th
I was going to post about how we got the results of Miles' trileptal levels and they are great - 23! We want it between 15 and 35 so this is perfect! But then the little stinker had a seizure last night. This time he had a petit mal seizure instead of a grand mal. It lasted about 15 minutes - which is amazing for him! Sean called me when I was at work at the bar and I rushed over to his place. The EMTs were there and the seizure had just stopped. We decided to go ahead and take him in to the ER because he has never done that before - just stopped after 15 minutes. He usually seizes much longer (like 2hrs) and we didn't know if he was going to start again or what. Texas Children's had the 1st death from swine flu yesterday (an 18 month old I believe - so sad!) so they were backed up for 4hrs. The ambulance was redirected to Memorial Hermann Children's. It was a nice hospital and everyone was very nice. However...there is so much to be said about continuity of care. Miles having never been there before with all of his issues was not a good idea. They were great, don't get me wrong, but none of his doctors are there. They couldn't get a hold of his neuro, ped, the neuro's NP...nothing. They took a chest x-ray but I am still not sure why, monitored him for a bit and sent us home. Fast ER trip overall. He follows up today with his pediatricians office - at the same time that I have a root canal so I won't be at the appointment.

Overall, despite the seizure yesterday, Miles is doing FANTASTIC! He has been healthy, not needed any breathing treatments, been doing well at school (although he did hit another little boy yesterday)...just doing great! Riley has been doing very well too! Two weeks in a row of behaving well in class (he is super silly and it gets him in trouble sometimes). Also, scored amazingly well on the Stanford again this year.

1 comment:

mina said...

Happy birthday Miles! Hoping the check up goes well, and hoping for better control with the seizures.