Makily is a whopping 32 lbs.
I promise you, she feels more like 40 to me. SERIOUSLY.
She is super tall at 37 1/4 inches!
Her chest sounded good, ears clear (one tube totally out, the other one is on it's way). She half heartedly stood up for Dr. Pierre and when I started saying she was being lazy she stood up real tall for a few seconds. :-)
My sister Deborah went with me to help out with Little J. He did really well but got bored after waiting a while. He really wanted to get down, crawl and terrorize the office but I didn't think that was a good idea!
We saw Neuro last week and she will be having an EEG and a CT scan. Both are just "routine". The Neuro, Allen and I and Dr. Pierre are all in agreeance that even though she has not had a seizure since 6-2006 we will be keeping her on the Topomax rather than trying to wean. I don't see the point in trying to wean her, the medication is NOT causing her any problems. If she has another seizure like the last one if it doesn't kill her, it will ME! Seriously though the neuro did say it is possible that another bad one like the last one could be "fatal". It's funny because at first I was so against the seizure med and now I am NOT wanting to take her off it.
Dr. Pierre and I also discussed the fact that Makily most times has "Petechia". They are little pinpoint "red dot" bruises on her skin. The Neuro noticed it at our appointment and suggested it was possibly due to the fact that Makily is on 1/2 a baby aspirin a day. Dr. Pierre does not think this is the case, she said that the dose Makily is on is so low, it's hard for her to believe that is what is causing it. I have a call in to the cardiologist to see what she thinks but for now we will just wait and watch. Makily is INCREDIBLY fair (she could have been "Powder's" stunt double), and has REALLY sensitive skin. When she bruises she takes FOREVER to heal and that's really been all her life, even before the aspirin. We'll see what cardiology says though.
Dr. Pierre wanted to go back up to her original button size.
After our fiasco last month (click here to read about that) we finally had gotten the correct size button in. We actually had it two weeks ago but Dr. Pierre was out of town. I am totally fine with changing the button if it's the same size or even if it's smaller but I am NOT too comfortable with putting a button in that is a size bigger. If it does not go right in I start to panic and I KNOW it's painful for Makily. If I HAD to do it, I think I could but I just wasn't comfortable..
Dr. Pierre did it today and Makily slept though it. She is so brave.
Since she had the "non-traumatic" button change we opted to wait on her four year shots until the school complains. Hey it's four shots and she technically does not need them until right before she turns five!
Tropical Storm/Hurricane Fay has done NOTHING in our area. I knew it wouldn't and so it's sort of lame that school was closed for TWO full days because of it. It's rained and been a little windy but for the most part it's not been any different than any other Florida storm for us. It hit harder down south (which it always seems to do).
That's all for now. I have a couple of pics from the well check but honestly I am too tired and lazy to upload anything! Maybe tomorrow.
I promise you, she feels more like 40 to me. SERIOUSLY.
She is super tall at 37 1/4 inches!
Her chest sounded good, ears clear (one tube totally out, the other one is on it's way). She half heartedly stood up for Dr. Pierre and when I started saying she was being lazy she stood up real tall for a few seconds. :-)
My sister Deborah went with me to help out with Little J. He did really well but got bored after waiting a while. He really wanted to get down, crawl and terrorize the office but I didn't think that was a good idea!
We saw Neuro last week and she will be having an EEG and a CT scan. Both are just "routine". The Neuro, Allen and I and Dr. Pierre are all in agreeance that even though she has not had a seizure since 6-2006 we will be keeping her on the Topomax rather than trying to wean. I don't see the point in trying to wean her, the medication is NOT causing her any problems. If she has another seizure like the last one if it doesn't kill her, it will ME! Seriously though the neuro did say it is possible that another bad one like the last one could be "fatal". It's funny because at first I was so against the seizure med and now I am NOT wanting to take her off it.
Dr. Pierre and I also discussed the fact that Makily most times has "Petechia". They are little pinpoint "red dot" bruises on her skin. The Neuro noticed it at our appointment and suggested it was possibly due to the fact that Makily is on 1/2 a baby aspirin a day. Dr. Pierre does not think this is the case, she said that the dose Makily is on is so low, it's hard for her to believe that is what is causing it. I have a call in to the cardiologist to see what she thinks but for now we will just wait and watch. Makily is INCREDIBLY fair (she could have been "Powder's" stunt double), and has REALLY sensitive skin. When she bruises she takes FOREVER to heal and that's really been all her life, even before the aspirin. We'll see what cardiology says though.
Dr. Pierre wanted to go back up to her original button size.
After our fiasco last month (click here to read about that) we finally had gotten the correct size button in. We actually had it two weeks ago but Dr. Pierre was out of town. I am totally fine with changing the button if it's the same size or even if it's smaller but I am NOT too comfortable with putting a button in that is a size bigger. If it does not go right in I start to panic and I KNOW it's painful for Makily. If I HAD to do it, I think I could but I just wasn't comfortable..
Dr. Pierre did it today and Makily slept though it. She is so brave.
Since she had the "non-traumatic" button change we opted to wait on her four year shots until the school complains. Hey it's four shots and she technically does not need them until right before she turns five!
Tropical Storm/Hurricane Fay has done NOTHING in our area. I knew it wouldn't and so it's sort of lame that school was closed for TWO full days because of it. It's rained and been a little windy but for the most part it's not been any different than any other Florida storm for us. It hit harder down south (which it always seems to do).
That's all for now. I have a couple of pics from the well check but honestly I am too tired and lazy to upload anything! Maybe tomorrow.
6 comments:
tara said...
you'd better put pics up tomorrow!
There should have been some sort of *warning*...for us "newer" readers. So I linked to the siezure post and am now typing through tears!!! How awful...I know that feeling of begging...Not yet, please not yet....
Alright, as I compose myself....glad the well check went...well. :^)
So glad everything went well at her appt. Stopping by to say hi. I'm hoping my place in Florida didn't get hit by the storm as well. Maybe we'll be able to meet in person some day, I would love it. Take care
http://oserofamily.blogspot.com
Glad to hear that you guys are all safe down there. Also happy to hear about the well check-up! Makily would NOT cover as Powder's stunt double. Don't say that, lol! She has beautiful porcelain skin. Love you, J
tara said...
WHERE'S THE F@$#@ING PICTURES?!!?
OMG Trish, Morgan has Petechia also. She hasn't ever been on aspirin though. We 1st noticed in the NICU...and maybe only a total of 4 times. Weird huh?
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