Saturday, September 22, 2007

Soccer weekend...

Miles finished his holter today and we dropped it off with the valet - yes, the valet - they have a 'box' they said. Anyway, I have some great pictures from the last few days...

Suggs 9/21/07

Miles and Riley both had their first soccer games today. They were awesome! Miles played a bit and got worn out before half time, or right at the half. The shirt came off and he was ready to come home. It was nice today but the sun was really hot!

soccer fun

The cutest thing in the world is to hear my boy say his own name! We have tried for so long to get him to say "Miles" and I just love hearing it! Now we have to work on Vincent...his middle name.


I will let you all know about the holter results when we get them. I am pretty sure they will be fine! No pukes or falling down all day. He was quite sweaty for most of the experience but that is normal Miles.

Monday, September 10, 2007

A Holter Monitor...

Talked to Cardiology today. They want to do a Holter just to be sure. That will be on the 21st. The cardiologist seems to think it might be neurological in nature. We have an EEG on Oct 3rd but the pediatrician might want to move it up. He did okay today but Sunday he fell and said his legs didn't work anymore. He told me today that he needs new knees because sometimes his are broken and don't work. It is all very strange. The pc did say that his heart looked *so good* in April when we saw him last that he would be surprised if things changed this quickly! That is great! Not only is he a good lookin' kid - he's got a good lookin' heart :)

I will keep you posted...

Saturday, September 08, 2007

It's a 3 out of 6...

Went to the doctor this morning. She says that to her his heart sounds the same. Here are the technical terms/numbers. She said the murmur/gallop/swoosh is a 3 out of 6 and that months ago Dr. Tiwari had it as a 3 out of 6 also. There was a note in between those two notes in his file - there was one doc that had his murmur as a 2 out of 6 but she wasn't concerned with that because she and Dr. T agreed. His pulse ox was 96%, heart rate 118 - which is good. She checked his sugars from the last labs he had done and it was 86, which is normal. She said to be sure to talk to the cardiologist on Monday, if not before. If he has this happen again (weakness, easily tired, sweaty, inability to stand up) this weekend to talk to TCH on call cardiology. Sean said to just take him in if it happens again. She said to be sure to explain any changes in his sweating (he has always been sweaty - the only difference is that it is now his whole body instead of just his head - has been that way for months). He is putting together a puzzle with Dad right now and looks/feels great.

Another thing the doc said is that she could NOT feel his spleen. His tummy was tense when she was feeling it because her hands were cold but I am glad she couldn't feel it. I think I know his gut pretty well by now but maybe what I felt was stool (yucky but likely, he is full of it).

We are relieved but cautious. We still plan to go to the It's My Heart - Noah's Ark Water Park event tomorrow. Great - Mommy in a bathing suit - fun! I think the anxiety is already setting in...

Friday, September 07, 2007

New developments?

Talked to the doctor yesterday. She said to call cardiology today. So I called Dr. Justino and he is off on Friday's so he will call me back on Monday. I then talked to the *new* pediatrician Dr. Propst - would you believe this is the first time I have talked to her? She was very nice. She agreed that I should call Cardiology. About the spleen she said to look out for any unexplained fever or rash which I will. There hasn't been anything so far.

I am, however, a little freaked out right now...When I picked Miles up from preschool the teacher said that this morning he did the following...After 15 minutes of play time outside he was very sweaty and clammy. She took him inside, he said he was tired. He sat for a few minutes and then tried to stand up and couldn't. She said he fell down and then he tried again and he still couldn't stand up. She said she didn't call me because his color looked good. She checked his fingernails, toes, etc. but color looked good so no call. She said he rested for 'a while' and then was very hungry. She said he ate more today than any of the other days he has been there. I am not upset that she didn't call - absent the comments from the gastro this behavior would not be that out of the ordinary for Miles. Well a little out of the ordinary but would be okay if it was an isolated incident.

He seemed okay when I went to get him, aside from red circles under his eyes. He was hopping and playing and running and still is. He has been incredibly thirsty. I called the pediatrician again, just to make sure. They just called and said to watch him and if he does it again then...the phone got cut off!!!!!!! ARGH!!! How frustrating! It is after hours and I only get the recording. My guess is that if he does it again to go in tomorrow - they have office hours on Saturday.

They just called back - the doc wants to see him tomorrow morning at 9am. Off to make dinner...

Wednesday, September 05, 2007

Cyclic Vomiting...sounds fun huh?

I just watched him take his Captopril all by himself!!! What a big kid he is becoming!

Okay, on to the update...

Miles saw the gastro doc today. He said a few that he thinks Miles may have something called 'Cyclic vomiting' which means that there is something neurological that causes him to puke so much. OR that he might have epilepsy. He said we will wait and see what the EEG results (which by the way is Oct. 3rd) say and go from there. He said there are two meds that can be used to treat cyclic vomiting - both of their names are escaping me right now. One is an antidepressant that controls the vomiting part of the brain (if that makes sense - I just got an image of a little brain vomiting...) and the other controls it in some other way that I can't remember. It is getting late. The other thing that Dr. Krishna said was that even though Miles has only gained 600 grams since May that that is okay. And...drum roll...He has grown a centimeter!!!!!! Woo Hoo!!! 91cm (91.7 by the measuring device there!!!) Maybe he has decided that it is okay to grow...

and the third thing he said (and fourth) was that he could feel Miles spleen again :( He could just feel the tip and from Dr. T said before that is about 5 times normal size. Then he listened to Miles heart and said, oddly - "When is he scheduled for his next surgery?" (TWO yrs from now is what I wanted to say!!) I said, He's not scheduled right now - his PV regurgitation is severe and he still has his fenestration... He says...'Oh, that is what i hear then'

All you heart moms know how I am feeling right now right? Does it sound different to you Dr. Krishna? If it does, do we need someone else to look at it/listen to it? Does it sound louder? Or quieter? Or just different? What did you think you heard? I am so full of questions for him really...BUT...he is the GI doc, not the heart doc. He saw Miles three months ago - can he really remember what his heart sounds like??? (the answer is NO, for my sake...)

First Day of School...

Riley had his first day of school last week. He is such a big kid! He loved it and was sad when I came to pick him up. I am glad he doesn't have separation anxiety but I wanted him to be happy to see, even if just a little bit. He has had lots of fun! His favorite part is after care but his favorite part of the day before after care is recess...what a normal kid he is :) He has made a friend - Isaiah. I am glad he is making friends. We have the open house next week so we get to talk to the teacher a little more

Miles started Pre-K yesterday. Dad was concerned that there would be lots of screaming and crying. When they got there Miles ran into the gym and starting kicking balls and riding bikes. Sean walked out for just a sec to write a check, came back and he was gone! He was already off with the teacher going potty. He had a great day! He liked it alot and was sad to go home. When I got there he said, "Mommy!" ran to me and said with a frown, "I didn't want you, where is Daddy?" I know I am not the favorite but come on! :) He ate like a champ (I knew he would) and had no potty accidents. All in all it was a great day!

Miles' EEG will be Oct 3rd. I have to keep him up late and wake him up early - that should be fun. Today we will go to the Gastroenterologist. Last time we went he was unhappy with Miles' digestive system (I am sure Miles isn't too happy with it either). He said that if things hadn't improved then we would be doing another gastric emptying scan (it would be his third). I am not sure if things have improved...bad mommy! I know he has had some poops-pukes and some regular pukes but not alot. He hasn't brought up much undigested food which is good and could be an improvement. He is also potty trained now which is HUGE! Hopefully we can put off the emptying scan, he probably doesn't need anymore nuclear medicine :)