Thursday, August 23, 2007

It is always something...

On Saturday Miles started to exhibit behavior that has us a little worried. Riley, Daddy and Miles were cleaning up a puzzle. Miles was putting the pieces in a potato chip bag instead of the box but wasn't aware that he was doing this. Sean told him to put them in the box and he said he was. Then he got this strange look on his face, stared off for a minute, vomited, became listless/lethargic and went to sleep for a long time. While he was sleeping he woke periodically but it was difficult for him to wake up all the way - that took a long time. Add a migraine in there and this behavior is just like Aunt Christy when she has a seizure (she has epilepsy). So we are concerned. We called the doc and we were seen yesterday. She wants to get an EEG and we did some blood work to make sure it isn't anything like his electrolytes or sodium being off. She said after the EEG comes back that we will talk to Neurology. She said the EEG might be as much as 4 weeks out but if the behavior continues or worsens in anyway to call to move it up or if it is really bad go to the ER. Flash back to Nov 2004 and this is the EXACT same behavior Miles had 6 times that day before he stopped breathing/turned blue - twice. I tried to tell them then all of the family history. They did an EEG then and it didn't show anything. He has had things like this happen from time to time - this is the first with the confusion. He has puked more times than I can count but many of those times were preceded by a strange blank stare an d followed by a long nap. I don't know if they are related or not. The doc did worry me about one thing - his MRI. Miles got an MRI of his brain last fall that was ordered by the Developmental Pediatrician just to make sure everything was okay. When Dr. Miller and I talked about it yesterday I mentioned that when given the results the subdural hematoma he had when he was born was mentioned. She said it should have absorbed into his brain by now and shouldn't show on an MRI. She said she would review it and see if we need another MRI. That concerns me a little bit. I LOVE Dr. Miller! Although sometimes she has a way to getting me worried about things that I may not need to worry about. She says just what she is thinking when we see her - like the time she said that Miles should have outgrown all of his digestive stuff by now and that most kids his age would have outgrown this stuff by now. Dr. T told us not to worry about that and that it is okay that he hadn't outgrown those issues. But then the GI said he might not ever outgrow it...

Anyway on to the good news - Miles starts preschool on Sept 4th!!!! We are super excited! We just hope that he can stay healthy! He already started with his normal cough this time of year so I started him on his pulmicort yesterday, hopefully that will help. I wonder if I should go ahead and do the Xopenex too or wait until he is sick? After he had the pulmicort last night he got a little rash on his back - don't know if the two are related or not. He spent a good amount of time running around on a playground last night at Riley's new elementary school so it could have been from the heat. The rash was still there this morning; we are keeping an eye on it.

Please keep Mason in your prayers - he has his Fontan today.

Saturday, August 11, 2007


It looks like Miles' tests came back NORMAL!! I am very pleased! We do have to repeat the metabolic panel because it appears as if the sample was left to metabolize before they tested it. I hate for him to have to get poked again because someone screwed up their job! It is labcorp and my husband and I have decided to call them labcrap. Our other lab choice is quest and they are the folks that twisted Riley's arm for blood and told me that they were going to have to give him bruises. I came this close to jumping out of my chair...

The blood draw will happen at TCH so worries there. Reggie (I think that is his name) does a wonderful job with Miles. On all other fronts we are doing exceptionally well! Riley will start kindergarten this month and Miles will begin pre-k very soon. Yes, I am going to cry. On the lack of growth...our pediatrician told us previously that based on Miles current height he still falls within normal range for his genetic potential. According to mine and Sean's height the shortest he should end up being - provided he starts to grow - is 5' 5". Not too bad but is quite short for a man.

One last thing, Baby Isaac did become an angel shortly after I posted for prayers. Please keep his family in your prayers.