So, we've made some moves to switch M's surgery to May, if possible. The August idea seemed worse and worse as time went on. We've put in the call, now they have to try to work their magic. The one doc is only in the OR 6 days in May (that's not too unusual) but the scheduler said he's pretty open... Now to coordinate with the other mandatory surgeon, and then hope to get in with the third for sclerotherapy. Not to mention the other disciplines i'd love to get out of the way (audiology, dentistry) but i'll settle this time.
We've made some feeding progress lately, and this surgery will kill it all, and that's so frustrating i can't even put words to it. The good part is we've made tube feeding progress and can get all his calories in by tube, which is the first time in awhile.
Thursday, March 29, 2012
Silly boy.
Well, apparently Micah has decided whenever he needs a step stool, he can go get moms big pot out of the drawer, turn it upside down, and voila, a step stool.
He's nothing if not resourceful! :)
He's nothing if not resourceful! :)
Monday, March 26, 2012
Feeling... accomplished?
We've slowed down a little since the weather got a bit chillier, but it's still pretty nice, so no complaints! We had a playdate which was wonderful for mom, but Mr. Man seemed a bit dazed. He seemed to climb up to a perch and watch children his age and older buzz by him. A little bummed he's a lot more behind than i realized. Such is life.
Travis and i are finally finished w/ a little cabinet i bought a few months ago. We sanded it down somewhat and repainted it and replaced the top. Realized all of the above are NOT in my professional future. Eh, it's for M's room, it doesn't have to be perfect, and it has LOTS of storage. Oh, lots and lots of storage. So, since apparently we thought we'd be bored, we bought a new dining room table that needs some lovin'. That means we have 3 in the house. We're selling the other two, if anyone's interested. Yes, 3 dining room tables. We're THAT good.
Finally figured out how to rearrange the house for baby. The good news is M's not moving, but we'll need to paint and give him a big boy room. We'll give the baby our room and use the bedroom we've had as a spare. Got to figure out how to spruce up a room w/ dark wood paneling on the walls. Now, to go through lots of stuff and sell it! The bigger the house, the more stuff you accumulate!
No new baby news for another 2 weeks, and even that will be a "no news is good news" The plan is an ultrasound in a month, since i'm a high risk mama now. We appreciate all the love and happiness we've been able to share with so many of you over the last two weeks. We're praying all this high risk is a bunch of hype, and this one is... much less dramatic. :)
Speaking of the little drama man, we found out today that they won't schedule August surgery for another almost two months. Soooo... There's NO promise we'll get what we want, so we're not sure whether to bump it up or risk not getting in before the baby. UH OH. We've got a very small post-summer-camp, pre baby window. Haven't even bothered to see what the latest i'll be able to travel that far will be... Probably don't want to hear it! Hmmm...
Travis and i are finally finished w/ a little cabinet i bought a few months ago. We sanded it down somewhat and repainted it and replaced the top. Realized all of the above are NOT in my professional future. Eh, it's for M's room, it doesn't have to be perfect, and it has LOTS of storage. Oh, lots and lots of storage. So, since apparently we thought we'd be bored, we bought a new dining room table that needs some lovin'. That means we have 3 in the house. We're selling the other two, if anyone's interested. Yes, 3 dining room tables. We're THAT good.
Finally figured out how to rearrange the house for baby. The good news is M's not moving, but we'll need to paint and give him a big boy room. We'll give the baby our room and use the bedroom we've had as a spare. Got to figure out how to spruce up a room w/ dark wood paneling on the walls. Now, to go through lots of stuff and sell it! The bigger the house, the more stuff you accumulate!
No new baby news for another 2 weeks, and even that will be a "no news is good news" The plan is an ultrasound in a month, since i'm a high risk mama now. We appreciate all the love and happiness we've been able to share with so many of you over the last two weeks. We're praying all this high risk is a bunch of hype, and this one is... much less dramatic. :)
Speaking of the little drama man, we found out today that they won't schedule August surgery for another almost two months. Soooo... There's NO promise we'll get what we want, so we're not sure whether to bump it up or risk not getting in before the baby. UH OH. We've got a very small post-summer-camp, pre baby window. Haven't even bothered to see what the latest i'll be able to travel that far will be... Probably don't want to hear it! Hmmm...
Wednesday, March 21, 2012
Super fun... it's summer in disguise!
can't really see them, but there are two wildflowers :)
Crooked Lake Nature Preserve
Pokagon State Park (haha, same outfit! can you blame me, it's so cute!)
Chain O' Lakes State Park (maybe not the most interesting one!)
We have been here and there and everywhere. So many places, so little time! Literally, so many places.
Sorry for only a few pics, blogger doesn't love my internet connection. Steal someone's facebook account and check them all out!
Sunday, March 18, 2012
And then there were 2...
We can finally make it official! Travis and i are expecting baby number two at the end of September! :)
Friday, March 16, 2012
Cuts in services
So, my child shouldn't have been born in a recession. The cuts in services continue. Rumor has it that indiana used to be a good place to be for special needs, and while it's better than some, it's getting worse. This time, our speech appears to be cut in half. Apparently a speech therapist can fix his feeding/verbal speech/sign/AAC issues in an hour a week. Except she couldn't get it done in 2. And of course, we switched to split the 2 sessions between two people w/ two different specialties... this week. Offfff course. Really hoping we can get this appealed, and soon. His school services will slightly help (he'll get AAC help, probably), but that won't start until his birthday.
We appreciate the input on the AAC.. it's a complicated place to be when you don't agree with the powers that be, nothing new though. Hopefully we can do it on our own, in our own way. (And w/ speech cut in half, that might be so!)
We got his request for evaluation papers, and the 8 page history to fill out to go with it. Oh, aren't i so lucky.
But here's what you really come here for... We've been outside a lot lately, because a certain mommy is desperate for sunshine. Yesterday we went to the local state park and to a small park we hadn't been to before. And, it had a merry-g0-round, and there was plenty of merry to go round, even if he's not smiling in one.single.picture. He's still pretty unsteady on most things, but he does it over and over, so i have to imagine he's having a good time.
We appreciate the input on the AAC.. it's a complicated place to be when you don't agree with the powers that be, nothing new though. Hopefully we can do it on our own, in our own way. (And w/ speech cut in half, that might be so!)
We got his request for evaluation papers, and the 8 page history to fill out to go with it. Oh, aren't i so lucky.
But here's what you really come here for... We've been outside a lot lately, because a certain mommy is desperate for sunshine. Yesterday we went to the local state park and to a small park we hadn't been to before. And, it had a merry-g0-round, and there was plenty of merry to go round, even if he's not smiling in one.single.picture. He's still pretty unsteady on most things, but he does it over and over, so i have to imagine he's having a good time.
Tuesday, March 13, 2012
Meet PECS
Meet PECS.
PECS is a communication system that uses pictures to communicate. This is a page from the inside of a binder. The goal is that Micah could use this to tell others what he wants. At first they start small, but many pages can be added, arranged by topic. This is how our first day of speech went w/ the new therapist.
(she has a toy he wants)
1) Open the binder
2) Find the picture of the toy he wants
3) Pull the pic off the vertical velcro strips.
4) Close binder
5) Put pic on sentence strip (the blue thing at the bottom, but ours is not on the same page as the pics.)
6) Pull the sentence strip off the velcro it's attached to.
7) Give to therapist
8) Point to pics "i want" "fire truck"
9) Get toy.
Do i even NEED to explain why this had me in near tears after 45 minutes? i did remind her he is in fact, 2 1/2 years old. Not to mention the challenges from a occupational therapy perspective (fine motor)... MAN.
At least it's sunny, amen? We had a great play date today w/ Micah's "cousins" :)
Monday, March 12, 2012
How to enjoy ice cream...
These were from the evening he spent in the hospital :) You can tell he wasn't too distraught. He's SO my child.
How to enjoy ice cream!
1) Dip
2) Shovel in
3) Repeat
He means business!
How to enjoy ice cream!
1) Dip
2) Shovel in
3) Repeat
He means business!
New stuff...
So today we go see a new speech therapist (we have the old one still once a week) The new one will be seeing what type of alternative communication he can use. Speech isn't coming anytime soon (well, it may veeerrryyy slowly) and they insist giving him something he can use that will talk for him will let him communicate with those who don't use sign. Not sure i buy it entirely. The low tech systems will only help with adults, and the high tech things are a stretch at this point. He needs to understand sequence (if i push this icon, this page will come up, then i can choose another icon) and have the dexterity to push small icons on a screen. We've tried with our Nook color and he's not there yet, for sure. Really hoping this isn't a waste, because our other speech therapist has more than she can do in 2 hours, let alone one.
Now the poor kid has 4 therapies at different times throughout the week. 9:45, 11:45, 1:00 and 2:00. Where's the nap consistency? Yeah, that's what i thought too.
Now the poor kid has 4 therapies at different times throughout the week. 9:45, 11:45, 1:00 and 2:00. Where's the nap consistency? Yeah, that's what i thought too.
Something new
So today we go see a new speech therapist (we have the old one still once a week) The new one will be seeing what type of alternative communication he can use. Speech isn't coming anytime soon (well, it may veeerrryyy slowly) and they insist giving him something he can use that will talk for him will let him communicate with those who don't use sign. Not sure i buy it entirely. The low tech systems will only help with adults, and the high tech things are a stretch at this point. He needs to understand sequence (if i push this icon, this page will come up, then i can choose another icon) and have the dexterity to push small icons on a screen. We've tried with our Nook color and he's not there yet, for sure. Really hoping this isn't a waste, because our other speech therapist has more than she can do in 2 hours, let alone one.
Now the poor kid has 4 therapies at different times throughout the week. 9:45, 11:45, 1:00 and 2:00. Where's the nap consistency? Yeah, that's what i thought too.
Now the poor kid has 4 therapies at different times throughout the week. 9:45, 11:45, 1:00 and 2:00. Where's the nap consistency? Yeah, that's what i thought too.
Saturday, March 10, 2012
Fluke?
Glad spring got the memo. 50's today, 60 tomorrow and 70 by Wednesday. Unfortunately, all signs point to the fact he's coming down with something. Slow moving tummy, reflux, coughing, extra suctioning. Really hoping it's a fluke.
Friday, March 9, 2012
Transition meeting and is it Spring yet?
His transition meeting was a little underwhelming, you could say. They don't agree with me that he needs to have a nurse in the classroom with him. Funny how even medicaid disagrees. if it was appropriate to send a "trained" person to the house, you better believe they would. But no, they send a nurse. Apparently, the school system says if there's a nurse in the building, that's good enough. Except, when Micah can't breathe, he doesn't have time to call the school nurse, get her down there and get his stuff out and fix the problem. That's a long time without oxygen for a little guy. Adults probably couldn't hold their breath that long! So, their recommendation is that i send my own nurse with him. That's not a big deal NOW, but what about when he's going to school 7 hours a day? And, how is it my responsibility to be sure he gets a free and appropriate public education. Some states say (logically) that they aren't going to pay for hours to be used that way because it's not their responsibility. Not sure what the case is here.
They said they have a trained aide in the room, but the training sounds informal and it would be hard to imagine informal training would ever hold up in court. So, i pointed out that they have a certified person in every classroom to deal with breathing related emergencies (the teacher), why can i not expect that for my own child? One document i read said that the lay person could tip suction (the top of the trach, not down the trach), but to go down the trach (what really helps 90 percent of the time) they should go to the nurse, and the nurse should be the one responsible for putting the trach in. What if the nurse is busy with another emergency she has to deal with? Hmm.
There were a few other things that don't sit well with me, for instance, parents aren't really welcome in the classroom except for class parties. Apparently this is the case in public school now. For a parent who is relying on someone else to keep their child alive, i don't care for the fact i can't drop in and see what's going on. Not cool. Plus, their class limit is 20. For 3 year olds. That's high. She said it isn't always that high, but wow. And that there's no set "3's class". All the 3's are in one class,but there's 4's (and inevitably 5's) in there as well. So, he will be the youngest anyway, in a class with children much older than him.
The big bonus is that the teacher uses sign language to some extent in her class, but not sure how much. Since that's Micah's language, that would be better than nothing.
Apparently, this isn't going to be easy. The school system would pay to have him go to one of three other private preschools in town, but i don't know the reputation of any of them.
We need to move to Warsaw where apparently we wouldn't be having this fight.
*sigh*
Oh, and where is spring? i really could use that right about now. Our little bit of spring was spent in the hospital. Bummer.
They said they have a trained aide in the room, but the training sounds informal and it would be hard to imagine informal training would ever hold up in court. So, i pointed out that they have a certified person in every classroom to deal with breathing related emergencies (the teacher), why can i not expect that for my own child? One document i read said that the lay person could tip suction (the top of the trach, not down the trach), but to go down the trach (what really helps 90 percent of the time) they should go to the nurse, and the nurse should be the one responsible for putting the trach in. What if the nurse is busy with another emergency she has to deal with? Hmm.
There were a few other things that don't sit well with me, for instance, parents aren't really welcome in the classroom except for class parties. Apparently this is the case in public school now. For a parent who is relying on someone else to keep their child alive, i don't care for the fact i can't drop in and see what's going on. Not cool. Plus, their class limit is 20. For 3 year olds. That's high. She said it isn't always that high, but wow. And that there's no set "3's class". All the 3's are in one class,but there's 4's (and inevitably 5's) in there as well. So, he will be the youngest anyway, in a class with children much older than him.
The big bonus is that the teacher uses sign language to some extent in her class, but not sure how much. Since that's Micah's language, that would be better than nothing.
Apparently, this isn't going to be easy. The school system would pay to have him go to one of three other private preschools in town, but i don't know the reputation of any of them.
We need to move to Warsaw where apparently we wouldn't be having this fight.
*sigh*
Oh, and where is spring? i really could use that right about now. Our little bit of spring was spent in the hospital. Bummer.
Tuesday, March 6, 2012
Here goes!
Well, consensus is that August would be our first choice for surgery. Our surgeon's people are going to be in contact with the oral surgeon's people (two different hospitals!) Sometimes scheduling is hard with one surgeon at one hospital! We're trying to get it on the schedule now so we don't have that problem.
Busy time, Travis has his class now which means BUSY BUSY BUSY.
Got neuro on the calendar.. For May.. LOL. Good thing he doesn't actually need it! Have to get his mri from Cincy (for the appt he doesn't need). Really, do i have nothing better to do? (Well, some days, no, but most, yes!)
Now we need to have our second SMO appt, then i'll feel "normal" again. Funny how small things REALLY throw me off... About as much as surgery.
Phew.
Oh, yeah, tomorrow is his transition meeting. A clear mind would be advisable, and i'm beat. Good thing my mom will be there! Here we go.
Pretty day today, when we weren't getting blown away. Still nice to go outside NOT in a winter coat!
Busy time, Travis has his class now which means BUSY BUSY BUSY.
Got neuro on the calendar.. For May.. LOL. Good thing he doesn't actually need it! Have to get his mri from Cincy (for the appt he doesn't need). Really, do i have nothing better to do? (Well, some days, no, but most, yes!)
Now we need to have our second SMO appt, then i'll feel "normal" again. Funny how small things REALLY throw me off... About as much as surgery.
Phew.
Oh, yeah, tomorrow is his transition meeting. A clear mind would be advisable, and i'm beat. Good thing my mom will be there! Here we go.
Pretty day today, when we weren't getting blown away. Still nice to go outside NOT in a winter coat!
Monday, March 5, 2012
Decisions
We've been advised of the almost inevitability of the muscle surgery.. As we figured, really. Question is when to do it. We all agree he needs some time off, and the surgeon bets were safe to stay within the 3 months to a year range (summer, fall or winter). Due to Travis' work situation, summer is more or less out. Winter is a bit tougher to be sure they're healthy, so that leaves late summer/early fall, probably. That'll give him some time off (us too!).
We have his first "transition to school" meeting on Wednesday. That's one of the big factors, whether to send him to preschool next year, and if we should do it when he's old enough (almost the beginning of the year) or to get surgery well out of the way before starting.. Although that'd be cold/flu season... No good answers here either! He could use preschool though, pretty bad! Maybe spring semester!
We have his first "transition to school" meeting on Wednesday. That's one of the big factors, whether to send him to preschool next year, and if we should do it when he's old enough (almost the beginning of the year) or to get surgery well out of the way before starting.. Although that'd be cold/flu season... No good answers here either! He could use preschool though, pretty bad! Maybe spring semester!
Friday, March 2, 2012
Phew, made it out!
The weather reports had been calling for really bad weather in Southern Ohio and Indiana today, so i was pushing to get out as soon as possible this morning. ENT came by at 6:15, God love them (although we love Dr. Nick, so it's not too bad), and Dr. Patel and Lisa came by around 8:30. We were out by 10, and home by 3! We hit one spot of hail and rain so hard you couldn't see, but other than that it wasn't too bad. Well, lo and behold there were multiple tornadoes and tornado warnings along about 50 miles of our drive come 3-6pm. They even went into tornado warning mode at the hospital, i've heard!
They pulled out lots of doxy this morning (hooray, it stayed in!) and put on a steri strip. He looks great. We know it doesn't always help the first time, but so far it's good. We have to be patient and not too excited, it could return.
The whole jaw drama hasn't come to a conclusion, and that's not a happy place for me to be. After seeing the MRI, we were a little blown away by how bad it is. His right mandible is up in his cheek. Really. What's left of the mass is resembles a sponge, not really microcysts like i had imagined. Superminimicrocysts, maybe? The space in his right cheek is full of LM, no wonder the muscles are bound up in it. The jaw splitting is off the table, really. Maybe in years when we've exhausted other options, because it's a terrible operation with very little hope of solving the problem. The muscle cutting is on the table, and the surgeon said it's almost inevitable, more a matter of time.
Here's a graphic. The muscle that may need to be removed is the masseter. You can probably gather it's rather important.
Oh,and i didn't mention that his tonsils and adenoids are HUGE. Yeah, we had a coblation tonsillectomy in December. They're going to have to cut them out, someday.
Good news is, Micah's doing great. :)
They pulled out lots of doxy this morning (hooray, it stayed in!) and put on a steri strip. He looks great. We know it doesn't always help the first time, but so far it's good. We have to be patient and not too excited, it could return.
The whole jaw drama hasn't come to a conclusion, and that's not a happy place for me to be. After seeing the MRI, we were a little blown away by how bad it is. His right mandible is up in his cheek. Really. What's left of the mass is resembles a sponge, not really microcysts like i had imagined. Superminimicrocysts, maybe? The space in his right cheek is full of LM, no wonder the muscles are bound up in it. The jaw splitting is off the table, really. Maybe in years when we've exhausted other options, because it's a terrible operation with very little hope of solving the problem. The muscle cutting is on the table, and the surgeon said it's almost inevitable, more a matter of time.
Here's a graphic. The muscle that may need to be removed is the masseter. You can probably gather it's rather important.
Oh,and i didn't mention that his tonsils and adenoids are HUGE. Yeah, we had a coblation tonsillectomy in December. They're going to have to cut them out, someday.
Good news is, Micah's doing great. :)
Found a new favorite nurse...
Found a new favorite nurse, the one who says "forget it" to his respiratory lead after not being able to stop it from beeping. Hooray! That's what i hate around here, the respiratory lead, because it always beeps... under or over the max. After awhile you become immune to it, but it's the same beep as an actual problem. He's not on any meds, so we don't worry about his respiratory drive being slowed down. And he's on a heart rate and 02 monitor, so if something were up, it'd beep.
Well, it's 5:30am here, and his feeding ended recently. Can't go to sleep because ENT will be here within a half hour to an hour, and i hate a bunch of people coming in while i'm sleeping. We've got a good fellow though, with a personality i can deal with at 6am.
The plan is to drain the drain, and get it out. Then, go home! There's a high chance of severe weather here this afternoon, so we're trying to get out as soon as we can!
Here's a pic from last night:
Thursday, March 1, 2012
The good news and the bad news,
Good news, there was big old macrocyst over his right temple (5.5x3.5x2.5 cm). They drained about 30-45 mL's (1-1 1/2 oz). They put in doxycline (the sclerotherapy agent) and a drain, and will drain it tomorrow. Hopefully the doxy will shut it down and we'll have a strickingly noticable result.. LOL, almost too much, they say. it'll be flat, or maybe sunken in. Oh well, we've had worse results.
The bad news... his jaw is in bad shape. Bad, bad shape. And the only options left are "radical"... and waiting. His TMJ is functional (the joint itself)... but his mouth won't open much (only 1cm). There's a muscle that opens and closes the jaw, 1 of 3 muscles, that's enveloped in LM. That causes it to be tight, essentially (think muscle cramp) permanently. They could try to cut the LM off the muscle, but it probably won't help. They can cut the muscle entirely to release the pressure, but then of course, it's gone for good. He would learn to compensate, but it's a pretty bad deal. Even with this, they can't guarantee they'd get enough of an opening (they need 1 more cm, so double what we have now!) The other, even worse deal is basically splitting his mandible, and being able to move it out of the way to get to his airway. There's multiple problems with this, as you can imagine. One, we need access multiple times over months or years to clear up his airway. We can't do this over and over again, that's a massively big deal.
There's also the question of what's wrong w/ the mandible... Which is apparently up by his cheek... oh man. That can't be good! The real question is whether the bone itself has been infiltrated by the LM. And oddly enough, they couldn't tell from the mri... So, not sure if there's any way to tell for sure. What i'm not sure of, is how big of a deal this is. it could obviously affect bone strength, and could cause more growth of the LM, but not sure if this is a cross that bridge deal or not. The only option there is removing that part of the bone. His mandible. This is obviously not good, and i'm not sure i understand enough about what's going on to say much more.
And we got labs, and they're not super hot either. His WBC is low (2.9), RBC is a little low, (3.77) his hemoglobin was a little low (11.1) and his hematocrit was a little low as well (31.8). (Numbers for your nerds who have a clue what they mean). Really, the WBC concern me, the rest are close or close enough for his. His igg is borderline low (403)... so we'll see about all these things.
That's all i got for now.
He's doing fine, not at all happy to have an iv in his foot, though. Lots of wagon rides tonight! He slept off most of the post op grouchies, and has been pretty decent!
The bad news... his jaw is in bad shape. Bad, bad shape. And the only options left are "radical"... and waiting. His TMJ is functional (the joint itself)... but his mouth won't open much (only 1cm). There's a muscle that opens and closes the jaw, 1 of 3 muscles, that's enveloped in LM. That causes it to be tight, essentially (think muscle cramp) permanently. They could try to cut the LM off the muscle, but it probably won't help. They can cut the muscle entirely to release the pressure, but then of course, it's gone for good. He would learn to compensate, but it's a pretty bad deal. Even with this, they can't guarantee they'd get enough of an opening (they need 1 more cm, so double what we have now!) The other, even worse deal is basically splitting his mandible, and being able to move it out of the way to get to his airway. There's multiple problems with this, as you can imagine. One, we need access multiple times over months or years to clear up his airway. We can't do this over and over again, that's a massively big deal.
There's also the question of what's wrong w/ the mandible... Which is apparently up by his cheek... oh man. That can't be good! The real question is whether the bone itself has been infiltrated by the LM. And oddly enough, they couldn't tell from the mri... So, not sure if there's any way to tell for sure. What i'm not sure of, is how big of a deal this is. it could obviously affect bone strength, and could cause more growth of the LM, but not sure if this is a cross that bridge deal or not. The only option there is removing that part of the bone. His mandible. This is obviously not good, and i'm not sure i understand enough about what's going on to say much more.
And we got labs, and they're not super hot either. His WBC is low (2.9), RBC is a little low, (3.77) his hemoglobin was a little low (11.1) and his hematocrit was a little low as well (31.8). (Numbers for your nerds who have a clue what they mean). Really, the WBC concern me, the rest are close or close enough for his. His igg is borderline low (403)... so we'll see about all these things.
That's all i got for now.
He's doing fine, not at all happy to have an iv in his foot, though. Lots of wagon rides tonight! He slept off most of the post op grouchies, and has been pretty decent!
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