life...loooong

Last week I took Micah to the children's hospital for his Upper GI study. After the study we went out to the waiting room and were waiting to hear what the next step was. We sat quietly, Micah on my lap, then standing by my legs, then crawling away. He stood at a small kid's table and played with a book I'd brought, he walked along a long cushion made for climbing, and he crawled across the floor to come back to me- realizing he was a few feet away. In my opinion, nothing that would be seen as unusual...

Across the room from us (this is a large waiting room built just for kids in the diagnostic waiting area) is a mother and presumably her teenage son... but possibly the baby's father?? That one I never did quite figure out. Mom is obviously older but it seems to me this is her first child. Maybe the son is hers and the girl is a granddaughter? Anyway, she looked at me like I was evil for letting my child get down on the floor and as hers squirmed and tried to get out of her arms, squealing and twisting, I'm sure she was just a bit envious as well. After a few dirty glares as I redirected Micah to the areas I was letting him play in I started the conversation and asked how old her little girl is. 10 months. I should have seen it coming, but didn't really think about it (nor care) and she asked how old Micah is. "Two." Long silence...

Ok, she doesn't really seem to notice that he has Ds, at least I didn't get that impression. So why is my 2 yr old crawling, cruising, and obviously not near walking yet? I see the thoughts racing through her mind as she then puts her daughter's feet on the ground, holds onto both of her hands, and lets the wobbly tippy toe'r make her way around the room. It was almost like the trot down the cat walk where you walk down, turn, pose, turn, pose, then go back... Quite funny in my eyes at the time.

I said nothing, didn't necessarily watch them but of course they were right in front of me. Micah was back to playing with a book on my lap when the 'mom' says to me "She's doing so good walking, I'm sure she'll be there soon." There. She said it. I knew she I wanted to, but I wasn't really believing she would. "Oh, that's great. She'll be there before you know it." Ok, I don't mind playing into parents' fantasies of the early walker that talks and does math facts before their first birthday. Fine by me, but it's definitely not what I'm striving for...

Then the... young boy... whatever that relationship might be... starts saying that his friends are in a class break and they were texting. The mom says "tell them to meet you at the lockers, then they'll be late for class!" Um... yeah, that's nice to do to your friends. Of course, my mouth is shut. This is about the time that I started thinking that mom is grandma to girl and son is dad... but still, who knows.

Next thing I know the 'mom' is walking around carrying the 10 month old girl and walks up to a painting. "Kite, look at the kite." The baby points. Good good, teaching the child words, using the time waiting to do something resourceful... teach the child. "Kite, look, that's a kite!" Then they walked to another picture "Kite, see the kite?" At this point I could see them in my peripheral vision and realized... that wasn't a kite. Not in either picture. It's a windmill. You know, the kind that are 5 different colors and on a stick for kids to blow? This was a bigger one stuck in the ground with a closeup picture of it with a grassy field behind it. That was NOT a kite...

Another family entered the room and sat down. Their chubby little girl we soon heard was a year old and just adorable. She had her thick black hair pulled up in tight braids to her head and wore little shining earrings and a cute little dress. There was an older sister along too and she was 2 years old- and about 3 feet tall. "How old is your son?" "Two." "Really? He's tiny" (as in, smaller than my 1 yr old...". "Yes." Polite, kind, smiling, no dirty looks. Nice people, cute kids.

At this point I realized that so many social stigmas still exist for raising children. I don't generally stop and think about it because within my realm of mommy friends- most of them don't hold to these stigmas.

Some parents think they need to appear to be the best, the fastest, their child the smartest, most developed, and that they need to have it "all together" all the time. Problem being, they slip up and 'real life' hits between the exterior and they tell their kid to make his friends late for class, they teach their child that a windmill is a kite, and in reality, you realize that they are really not a very kind person, much less educated (ok, so that might be taking it a step far, but you know what I mean..). They've got on a facade and are trying to show that things are perfect, when reality says it's far from it.

Then there's the family with the REAL perfect family. And unfortunately, this family will be looked down on still more often than the first family. Simply because of the color of their skin. The family with the 1 and 2 yr old daughters was black. Somehow, though it shouldn't in any way, I could see in her face the question of whether she would be accepted in that room. Why wouldn't she? Her children were adorable, well behaved, and she was kind.

Then there was me. Micah is kid #4, I'm not worried about what everyone else sees us as, and yes... it's obvious to many people that Micah has a disability. Do I come across as superficial and trying to put up the "perfect family" front? I hope not! Do I come into a room wondering if the obvious differences in my family will make a difference that day? YES, sometimes... And I can't blame the other mom for wondering as well... she's obviously had some difficult experiences in life-- or even just with hospitals maybe-- that make her question her acceptance.

So where do you fall? Are you secure in your parenting? Do you need to prove yourself? Are you beaten down by previous encounters with difficult (and generally stupid) people? What do people think of you in that waiting room while you're sitting at the hospital? I'd love to know what people actually think of me. I wonder if it's anything close to what I think myself...

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Kristopher came in while I was getting clothes out today and told me that he and Brianna are pretending and they want to adopt me. He's the daddy, Brianna is the sister but she's his princess too, and I'm their kid. They'd like to name me Mewedif (pronounced by Kristopher!). It's ok that it's my real name, they'll name me that too. Then he and Brianna pranced back off to go play. I love pretending!!

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I picked up all the scripts and blood work orders and info from the doctor's office yesterday! I've had a stack accumulating for a few weeks probably. It's time to get them filled! Blood work for Emma, PT/OT/ST scripts for her, DAFO script, and a swallow study script for Micah.

Monday I take Emma down to be fitted for her DAFO's and knee immobilizers. I got a call from her PT yesterday saying that she wanted to go with us if it was ok. She wants to talk with the person making the orthodics so that together they could come up with the best fit for something that will help Emma, and they wanted Emma there to do it. We really are blessed with a great team of therapists! I'm thankful she's willing to go out of her way to do this for us.

Here's a little about the orthodics... Emma is starting to put weight on her feet!! It's wonderful! The problem here is that she hyperextends her knees so badly that she needs support at the ankle and knees to properly extend and bare weight. A DAFO (dynamic ankle foot orthodic) that keeps the ankle just a little bent will help with her knees hyperextending and keep her feet square under her. A knee immobilizer will keep her from hyperextending at night in her crib by resting her feet on the rails and letting them sit that way all night. But... would a full length leg brace work better? One with a joint at the knee that allows it to flex but not hyper extend? One that supports up to the hip? We're not sure what the path is quite yet, but Emma also has a tendency to pop her left knee out of the socket whenever she's really upset. So the ankle and knee both need good support and we just have to figure out what we need to do to do that... Monday will tell more.

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I'm noticing more and more lately that the effects that the orphanage had on Emma are long lasting and still 'rearing their heads' in new ways. For instance, here's a situation... she has started chewing the nipples of her bottles and has chewed holes in a majority of them. I've been throwing them away and buying more, but they're not really supposed to just be disposable and also aren't priced to be! So we're trying to get her to stop chewing on them and just to drink and put it down. We've given her other things to chew on, chewy toys and bibs... but she still chews on the bottles. After a few days of this I started taking the bottle away and saying "no" very pronounced to her when she started chewing. I'll also cup her face and rub her cheeks- a calming thing for her- when I talk to her. She would immediately retract and not just startle, but look afraid and curl her arms in, fist her hands, and open her eyes wide.

Of course I hate that she looks to be scared and I've tried to be more subtle, but still, she associated that she's getting "in trouble" chewing the bottle and continues to do so... yet when she has the bottle taken from her and is told no- regardless of how gently and smooth toned, she pulls her arms in and tucks her fisted hands and looks up with wide eyes. What has happened in her past to make her so affected by food and to be so afraid?

We've seen similar things with her eating her socks. I bet you never thought about socks as choking hazards before, have you? Emma cannot wear socks without shoes or she pulls them off and shoves them- THE WHOLE THING- in her mouth. She gets a little squirrel look on her face and gnaws on them until they're removed from her mouth. Usually just one sock at a time, though. (and this also has put holes in quite a few socks... those aren't meant to be disposable either...)

When I would first find her with the socks in her mouth I would try to remove it by opening her jaw (kind of pushing on the cheeks) and take the sock out. Then she realized that this was bad and she started retracting when she was caught- before I even got to her. Now she will take a sock out of her mouth- usually- given the verbal prompting to do so. But sometimes she doesn't and I have to go pull it out of her mouth. These times I'll tell her a firm "no" because she didn't take it out on her own.

It amazes me the strong reactions she has at times and makes me more aware that she was not just in a bed for 5 years, there were likely nice people with patience and not so nice people with very little patience that were her caregivers. A strong voice doesn't startle her, but directed at her when she knows she's doing something she shouldn't be- she pulls in tight. We have a lot to work through in that area still. And I am still learning how to teach her without having her be fearful that I will hurt her too...

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We have a crib mattress on the floor for Brianna to learn walking on soft surfaces. It also works as a toy for Emma and Micah to crawl (or scoot on her back) up on to. Kristopher thinks it's a trampoline. Mike has taken to helping the kids do somersaults on it and flips them over quickly. Yes, we've had the kids' necks checked ;) (except Bria's who we're a bit more careful with for now). The kids giggle and laugh out loud when they go on there.

I've also discovered it's a great therapy tool for Emma in even more ways! I can get her into four point on there without the worry that when she comes out of it (aka falls) she will hit her head. She likes to hit her head... she thinks it's funny. And it doesn't matter whether it was her fault or someone else's. Case in point, we had company the other night and I was 'dipping' Emma and she was laughing. Brianna walked under us and I didn't realize it and the two bonked heads when I brought Emma down. Brianna of course was horrified that her head was bonked, but Emma laughed.

Anyway, Emma does great on the mattress and we've worked on holding 4-point (crawling position), being up on her extended arms on her tummy, and tall kneeling up against the side of it. Who knew the mattress we had in the garage the past few months would be such a neat therapy tool?

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I've been slowly trying to write down the therapy and school stuff for Emma. The newest update is that she hasn't been evaluated for OT and PT because they thought she wasn't going to receive services until March when they expected her to come to the classroom. We've decided not to put her in a classroom this year since the only one available for her right now is a good 30 minutes away and I cannot see that she would benefit THAT MUCH from me driving 2 hours each day with the other 3 kids to get her there and back. We'll continue with her home teacher 2 hours/week and hopefully get these therapies going soon too. But.. since I waited the 8 weeks they told me to before bringing this up... now they're telling me it's going to be another 6-8 weeks before she can be evaluated because they're just now putting her back on the list to be scheduled. Hmm... this doesn't sit right with me. That means that it will have been 4 months with no school services before they get her started. That means it would likely be January before they even do an evaluation.

I (kindly) said that I didn't think this was right since Emma has waited the 8 weeks that we were told. I don't think it's appropriate to have to wait another 8 weeks because one person left the meeting with a different thing written in her notes. Regardless of misconceptions, the reality is she NEEDS therapy and the school is required to PROVIDE therapy, and that has yet to happen. I understand that they'll be doing the evaluation "as soon as they can schedule it..."

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On Wednesday night all three kids had GREAT speech sessions! Micah ate an entire 4 oz jar of baby food with a spoon!!! And... it only took 25 minutes! Generally he finishes about 3 ounces in a 30 minute session if that much. He has the strongest tongue thrust I (and his ST) have ever encountered but he is beginning to want the food, which is helpful!

Emma was given a baby doll to pretend play with and after being shown once how to feed the baby and mix in the bowl she did it! She took the spoon, clinked the bowl, and put it to the baby's mouth (then her own!). Now... someone tell me again that her cognitive age and her 'performance' have too small of a variance to qualify for speech therapy? Say it again? She is LEARNING SO MUCH!

Brianna was a bit more of a stinker for her session, but she chats and babbles and 'helps' during the other kids' sessions and does better with theirs than she does with her own. She's really imitating more sounds lately and is doing wonderful :)

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As for Micah's aspirating, I've been trying to schedule the swallow study but had to wait for a script from the doctor and yesterday I called and left a message at the hospital but haven't heard back. I'll call again in a few minutes. A swallow study is basically done similarly to the upper GI from my understanding and has a speech therapist there as well. They use barium and an x-ray machine still but will slowly thicken the liquid until they find a texture that is 'safe' for him to swallow without aspirating it. This should be interesting getting him to drink/eat it. I think it also is a 'starved' procedure so he might just be hungry enough to cooperate.

Until then, though we haven't been given any instructions to do so, we're thickening all of his bottles. If we know he's aspirating, and he sounds AWFUL junky in his chest a lot of the time, then this just makes sense. When I asked the doctor I was told there are no special instructions though... Hmm....

Best case scenario we're talking about thickening his foods for a while and more reflux medications. Worst case scenario we're talking about a fundo and g-tube. Either way he'll still be getting calories and growing and doing, and how he's fed isn't the end of the world. Been there done that with Brianna and though I don't wish a feeding tube on anyone, once you've done it you realize it's not as scary as it may sound.

Hopefully we can control it with diet and medication though!

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If you made it this far feel free to applaud yourself! Especially since I still can't get any pictures off my camera. My computer was shipped off today for repair though, so I'm hopeful that I'll have it back soon.