Still not sure what's bothering his leg. It's not keeping him from walking, he's just a little unsteady and limping. As long as he has tylenol, he's quite a bit better. Doctor doesn't think it's a fracture, which is good (can you imagine if it was...ugh I'm not sure I could take it!) We avoided an x-ray for today, but may do one if things don't improve.
We had a laundry list of bloodwork to get done, I think 7 different tests in all! That might be a record. We should have the first round back this afternoon, and the rest back later this week. We've been in contact with various docs all weekend/today... The bloodwork will hopefully rule out infection, although it seems highly unlikely at this point. Unless is IGG comes back in the toilet we may not have to go down to Cincinnati this week! We are seeing a new ENT in FW to see if he can fix the drain situation. Also, learned we can do IVIG in FW if need be, although we seem to always need to be in Cincinnati for something. (Plus, I'm not sure if they'll do it at the same fast rate we've become accustomed to, since they don't have proof he tolerates it just fine). I'll take the 8 hours of driving and 3 hour infusion over the 8 hour infusion, LOL!
Is it me, or do things just seem really complicated right now? It's my life and I can't even keep it all straight!
Monday, October 10, 2011
Saturday, October 8, 2011
Something strange.
Update: It's Sunday morning, and no real change. Tried tylenol last night, didn't seem to help. Got a baseline for where he was this morning (worse than yesterday) and am trying tylenol again. There's a fair chance we're going to stop the rapamycin, either just for awhile or maybe entirely. It can cause joint aches, and the hematologist isn't convinced it's doing anything for him. It's hard to say, since he was only on it two weeks, off it ten days, and been on it for about ten days again. Unfortunately, we can't get blood work unless we go to the ER. So, we'll go get it as soon as we get the order in on Monday AM. It can take 2 days to get the rapa level back, although we should be able to get the CBC/IGG back sooner, if they order them.
Micah's got some strange symptoms going on. His right leg seems to be causing him pain and is weak. He's limping/dragging his right foot just a little. The reasons could be endless. Luckily, the hematologist called me today (on a sunny Saturday afternoon) because it could have been an infection, which at this point is a trip to the ER. Looking less like an infection, and more like just about anything else. Hoping to figure it out soon. Could be entirely innocent, but it's been going on for 24 hours now, so who knows.
Micah's got some strange symptoms going on. His right leg seems to be causing him pain and is weak. He's limping/dragging his right foot just a little. The reasons could be endless. Luckily, the hematologist called me today (on a sunny Saturday afternoon) because it could have been an infection, which at this point is a trip to the ER. Looking less like an infection, and more like just about anything else. Hoping to figure it out soon. Could be entirely innocent, but it's been going on for 24 hours now, so who knows.
Friday, October 7, 2011
Coming soon!
I've been invited to take part in a really fun project, Lymphatic Malformation Awareness Bears! They will be named Luke and Leia (teehee, I didn't pick them, but they're cute!) The bears travel the country, visiting children that have the same condition as the bear. Each bear carries a story of a child with LM, and Luke will carry Micah's story! The bears are outfitted with the medical equipment of the child (trach and g-tube in our case) and carry a passport and journal.
Isn't this a super fun idea? You can read much much more at
https://www.facebook.com/#!/pages/The-Traveling-Awareness-Bears/280749945273598
and if you're not on Facebook
http://www.travelingawarenessbears.org/
They have bears for different conditions, including pediatric stroke, congenital heart defects, chiari malformation, cavernous venous malformations, and esophageal atresia/tracheo-esophageal fistula. Those bears are off on their adventures, and it looks like more are in the works.
It will be a little while til Luke and Leia begin their adventures, but you can request a visit on their website.
Isn't this a super fun idea? You can read much much more at
https://www.facebook.com/#!/pages/The-Traveling-Awareness-Bears/280749945273598
and if you're not on Facebook
http://www.travelingawarenessbears.org/
They have bears for different conditions, including pediatric stroke, congenital heart defects, chiari malformation, cavernous venous malformations, and esophageal atresia/tracheo-esophageal fistula. Those bears are off on their adventures, and it looks like more are in the works.
It will be a little while til Luke and Leia begin their adventures, but you can request a visit on their website.
This is Pat, the Pediatric Stroke Awareness Bear :)
Thursday, October 6, 2011
Post #301... Super exciting!
I've got something exciting to share... but you'll have to wait to find out!
(And no, I'm not pregnant... this is a Micah medical thing, sort of!)
(And no, I'm not pregnant... this is a Micah medical thing, sort of!)
Abbreviated surgical history
This is for my medical mama friends (and myself, it's hard to get all the info in one place!), the rest of you guys can feel free to read it if you'd like.
8/31/09
Birth- EXIT to airway, intubated 3.5 tube
9/3/09
Micro laryngoscopy/bronchoscopy (ML&B), Neck dissection (bilateral)
10/2/09
ML&B, G-tube w/ Nissen fundoplication
10/7/09
Tracheostomy, ML&B
12/10/09
ML&B
3/4/10
Ultrasound of head/neck mass, ML&B with lasering of lymphatic malformation in airway, ABR hearing screen, bilateral PE tubes
4/12/10
Sclerotherapy, ML&B with lasering
6/23/10
Sclerotherapy, ML&B
3/3/11
Neck dissection (behind ear)
3/8/11
Sclerotherapy
3/15/11
Sclerotherapy
8/22/11
Neck dissection (bilateral), right parotidectomy
9/1/11
ML&B
12/16/11
Coblation tonsillectomy/base of tongue lasering
3/1/12
ML&B, sclerotherapy right temple
5/10/12
Mass excision right side, removal of right masseter muscle
6/15/12
Abscess drained (Lutheran)
8/31/09
Birth- EXIT to airway, intubated 3.5 tube
9/3/09
Micro laryngoscopy/bronchoscopy (ML&B), Neck dissection (bilateral)
10/2/09
ML&B, G-tube w/ Nissen fundoplication
10/7/09
Tracheostomy, ML&B
12/10/09
ML&B
3/4/10
Ultrasound of head/neck mass, ML&B with lasering of lymphatic malformation in airway, ABR hearing screen, bilateral PE tubes
4/12/10
Sclerotherapy, ML&B with lasering
6/23/10
Sclerotherapy, ML&B
3/3/11
Neck dissection (behind ear)
3/8/11
Sclerotherapy
3/15/11
Sclerotherapy
8/22/11
Neck dissection (bilateral), right parotidectomy
9/1/11
ML&B
12/16/11
Coblation tonsillectomy/base of tongue lasering
3/1/12
ML&B, sclerotherapy right temple
5/10/12
Mass excision right side, removal of right masseter muscle
6/15/12
Abscess drained (Lutheran)
Sunday, October 2, 2011
What you really came for...
This was at the Camp Mack Festival on Saturday. We all had a good time, and I know I can say I ate entirely too much delicious food.
The other is him just bopping around the house. I'd moved this chair out of the way, and now it's his little climbing sanctuary. 
Avoiding this...
I've been avoiding the blog mostly lately, because I don't really feel confronting what's going on. The kid isn't swallowing. Okay, maybe he is sometimes, I don't know... But not for the most part. Which means he's not eating or drinking for the most part. He's trying to eat and drink, for the most part it's just staying in his mouth or dripping back out. Speech and occupational therapists want another swallow study. ENT doesn't think he did anything to cause such an impairment. His 2 yr molars are near the surface, which could cause drooling, but something else is going on... The possibilities are nearly endless and I don't know where to start, if we can even convince ENT there's a problem.
We go back down tomorrow. Someone asked how many times we've been down there... I think it'd be interesting how many days we've spent down there in the last 800 or so days... Including the time we were there before he was born, we're at roughly 120. That doesnt even count the clinic visits/follow ups/day hospitals. Maybe someday I can figure out a general number. It's kind of depressing, so maybe I shouldn't.
We go back down tomorrow. Someone asked how many times we've been down there... I think it'd be interesting how many days we've spent down there in the last 800 or so days... Including the time we were there before he was born, we're at roughly 120. That doesnt even count the clinic visits/follow ups/day hospitals. Maybe someday I can figure out a general number. It's kind of depressing, so maybe I shouldn't.
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