Been a while...

Let's see...

Cardio...Miles is doing well cardiac wise. His next check up is in February. He gets tired alot but I am not sure if that is behavioral or heart stuff. His fingertips are red all the time but who knows...that could be marker!

Neuro...He has not had a seizure since June which rocks! We missed our appt with neuro this last time and weren't able to reschedule til the spring. We are holding steady with 10mls BID which seems to work very well for him. One thing he does do is fake staring off which bugs the heck out of me!

eye stuff...It still does it but I don't notice it as much. The eye doc says it IS 4th cranial nerve palsy eventhough it does not show on the MRI. We just watch it and make sure that his head tilt doesn't get worse and follow up with the doc.

Renal...We are officially OFF of the BP meds!!! His BP was holding pretty steady on the meds so we did a trial off of them and we have not gone back on them. I have spot checked his BP from time to time and it has been a little crazy so we are keeping an eye on it, taking it once a day. The doc was a little concerned with the 112/95 but mostly we get 116/66 or somewhere around there.

We are all swine flu and reg flu vaccinated and staying healthy - mostly thanks to his breathing treatments and inhaler. As long as we stay on a rigid schedule he does very well!

Riley is doing great in 2nd grade! He got all A's and is playing the recorder. His birthday is next week on the 20th...I can't believe he will be 8yrs old! wow!

My dad's birthday is this saturday...our first one without him. I miss him so much!

I think we are all ok on all other fronts except Miles' behavior! Geez he has been a handful! We are working on that though.

still no answers...

So the pediatrician today says she doesn't think it is neuro or cardiac but possibly renal...hypertension or hypotension. I will call renal next week and talk to Beth (the renal nurse), she is great and I will get Dr. Feig to look over the tests and maybe call the ped to get her take on it. We did some blood pressure stuff today - one laying, one standing and one sitting. laying was about 103/62 ish hr was 108...standing was about 106/65 ish hr was 103...sitting was 92/29 with a hr of 39. She came back and got his hr again and she got 89 sitting. hmmm...redid the bp and got 96/59 or something like that. bettter but still very different...

today he did well. He finished the holter and that will get turned in tomorrow. I am so tired! I am off to dream land...

love and hugs to all!!!

No Answers so far...

Miles was released from the hospital yesterday with no answers. The summer camp/daycare he attends called and said that he was very flushed, glassy eyed, unsteady on his feet and slurring his words. Their dad and I rushed up there to get him/make sure he was okay. The teacher then told me that while we were on our way up there he said that his heart hurt and he needed someone to listen to it. He looked okay to me when I got there - quiet, calm, reading a book and singing sweetly - he was also not sweaty. We called the pediatrician who said to bring him to the hospital to check him out. Her concern was some sort of ingestion of something OR a partial seizure.

I love it when the doc calls ahead cause we got right into a room - not wait in the lobby. :) We figured they would listen to him, check his electrolytes, maybe check trileptal levels and send us home. They admitted him. Cardiology consulted and said they didn't think it was cardiac - we did an EKG just to be sure. The ER docs theory was Ischemia of the brain - not enough overall oxygen to the brain which caused it to seizure up a bit causing stroke like symptoms. Like a stroke without the blood clot. Neurology admitted him and wanted to see him in the morning. He had an uneventful night, they monitored his pulse ox which stayed steady at 95% or so.

Neurology said it did not sound like a seizure - the theory from him was a combination of things. He said if he has low cardiac out-put already (which I don't think he has) he may not profuse his body as well as others. Couple that with slight possible dehydration and you get strange neuro symptoms. (if he didn't profuse well - would his pulse ox stay that high?) We checked his electrolytes and they were normal - theory out the window. Neuro says it is cardiac.

Cardiology comes and looks at him and says he looks great (which he did). They put a holter on him and sent him home. We will follow up in clinic for an echo. We didn't do the echo while we were there because Miles was sick of being in the hospital and was not listening to anyone - at all. An echo would have been torturous!

So...sent home with no answers. One time yesterday while we were there Miles said his heart hurt again. I hope the holter will show something or that we can figure this out another way.

We got some pictures taken...they are great!!!! Enjoy...

Two posts in one...

HAPPY BIRTHDAY MILES!!!!!

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.