Wednesday, June 4, 2008

Preemie Follow Up!!!!

This was Maryam when we woke her up this morning to head to San Diego.
This is Maryam wearing a skull cap that Mike put on her, what goes with a skull cap? A guitar! What do you use when you don't have a real guitar? A Guitar Hero Guitar of course!!!!
No Paparazzi! No photos please.
Our Guitar Heros, Jake and Maryam!

Where do I start? We had a GREAT Preemie Follow Up appointment! Maryam weighs 23 pounds 12 ounces and is 32" tall. She's in the 50% for her ACTUAL AGE. In the Preemie World, that's a HUGE deal, especially for a baby under 2 years old.
We started with respiratory; Maryam's O2 sats were at 100% on 1/8 lpm in the office. So her Dr. suggested that we spot check her during the day time while she's playing and see how she's sating. If she does well, she wants us to do a 12 hour trace at 1/16 lpm over night. If that looks good, which we all think it will, then she wants us to try having Maryam on room air during the day. She wants us to do several spot checks on room air and see how she does. All while weaning her diuretics down to once a day for 2 to 3 weeks. If all of this goes well then we'll discontinue her diuretics and see if we can keep her on room air during the day and 1/16 lpm of O2 at night!
OK, now I know that's A LOT of IF's, but I have TOTAL FAITH that she can do this. Maryam has come such a long way. She's such a fighter, she can fight her way off of oxygen no problem. There is a reason we call her a miracle, because she is. God heard the world's prayers and helped her fight her way back to life. He's going to help her through this as well. You all have no idea how many times Maryam wasn't supposed to make it, and she did! She did EVERY TIME!!! She can do this, I just know it.
Then we went on to GI. Dr. Bromberger wants us to back Maryam's calories down from 900 cals/day to 800 cals/day! She thinks this might help Maryam get hungry. And since she's managed to gain so much weight in the past 6 months, almost 9 pounds, she doesn't think it will affect her weight gain negatively. We're supposed to change her Prylosec down from twice a day to once a day and alternate for a week between night and morning to see if which one helps with her morning retching. Dr. Bromberger said that since Maryam is starting to drink pretty regularly that we should try giving her some of her formula orally again. She said that she's seen many babies start drinking their formula in the summer because they get hot and thirsty. So, we'll start trying that tomorrow.
As for the CP. Like everything else in Maryam's life, Dr. B called her "at risk for Cerebral Palsy" because she saw some of the signs. She did a neurological exam and found that Maryam's reflexis in her knees and ankles were "brisk." Apparently a sign of CP. She also found that Maryam has low muscle tone in her hips and shoulders which is another sign of CP. So, based on that criteria, Maryam is "at risk." She didn't want to give her a diagnosis yet though. She said those are both things Maryam could outgrow with PT. She wants to wait until Maryam is walking or at least until she's 24-36 months before she gives her an actual diagnosis. And even at that point she wants Maryam to see a Neurologist too. She said since Maryam is getting all the services she'd receive with a diagnosis, she sees no reason in rushing a diagnosis like CP. If at 3 years old she was still having problems and Regional Center or California Children Services was looking for a diagnosis to continue services then she'd rush a diagnosis.
As for the problems Maryam has been having sleeping, Dr. B is going to do a referral to an Ears, Nose and Throat doctor. She said Maryam's tonsils are large, and that they could be obstructing her upper airway causing Maryam to be restless trying to reposition herself for easier breathing. She also wants the HEENT Dr. to look at her vocal cords to see how much paralysis is still there and also to check her adenoids.
OK, so I think that's it for now. If I think of anything else between now and the morning, I'll add it tomorrow. Right now, I'm going to hit the rack and have ONLY sweet dreams! (Until Maryam wakes me up in an hour or so! he he he)
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1 comment:

Anonymous said...

Hey Maryam. All great reports. We will not think about that other one cause we know it ant so.
You are diffently alittle fighter.
God looks down on you and says this little gal is okay. He wll keep you well and safe.
Love you sweetie.
Granny Sharon