A's jaw distraction is scheduled for September 11th. She'll be in the hospital for about 2-3 days and then she'll be in the distractor appliance for about three months - three weeks of which we'll be turning screws to pull her jaw forward. The reason that this surgery is necessary is because her airway is blocked by her tongue due to the fact that her jaw is recessed so severely. This is the reason why she has a trach and a feeding tube.

This surgery is has an extremely high rate of success, and we're really excited that she is going to be able to go ahead and have it done. The sooner she gets this done, the sooner her trach will come and and the sooner the g-tube can come out. It is extremely important that we get that tube out as soon as possible because of the risks to her development (particularly nutritionally) that having it in so long causes.

A doing SO great at school and in her therapies. She's learning new signs all the time and is really making huge progress in physical and occupational therapy. She's gained weight AND height, and her pediatrician is really pleased with where she is on the growth chart (even though she's in the 5th percentile, she is height/weight proportionate). She's also drinking A LOT of water with a regular cup these days, so much so that we have to watch out to make sure to close the toilet lid and tip over any water receptacles in the yard, or else she'll be chugging that down.

We're working on helping her learn her colors and to point at pictures in books. We read tons and tons of books. We also like to make music with our drums and the new rhythm wall that K and I have built for her in the backyard. So far we've got a "chime" made from recycled formula cans, a beer cap chain that jingles, and a bamboo mobile that makes very pretty sounds. Lexi likes to carry around utensils from the kitchen to bang on her new wall. We LOVE it!

Anyway, please continue to keep her in your prayers, and us too. It's been such a joy learning from and with her, and we are so grateful to have her in our lives.

She's Tall! - Um, No.

I was just folding A's clothes and thinking how tiny she is. She's wearing 12 months and she's 25 months old. What's really funny is that every once in a while someone will ask how old she is and, when told, say, "Wow, she's so tall!" Cracks me up!!! I guess it's because she's so skinny as well as being short.

But, I'm only 5 feet tall myself. So, I kind of like that she's tiny. I always loved being the littlest one around. I figure, she's got her daddy's red hair, and my height. It's my own little way of "claiming" her, since she's adopted.

Kids like to try to grab her trach. I guess they think it's jewelry or something. But I really don't mind that. Actually the worst comments I've heard are from parents of other children at the therapy clinic. It's like they've never seen something as strange as her. Yet, they are the parents of a special needs kid. Strange.

Structured VS. Child-Led

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So, for the third time in two weeks one of dd's therapists gave as "homework" 10 minutes of structured time about 8 times a day.

Somehow I'm supposed to add one more hour of "structure" to the day of a child who already spends 5 hours hooked to a feeding pump, at least 2 hours in therapy, and approximately 2 hours buckled in a car seat heading to therapy . . . . OH, and then, because she's two she's gotta take a nap. And how about family time in the backyard playing with the doggies and daddy?

Please tell me how this is supposed to work.

What the therapist is ten minutes on a start-to-finish project like stacking and playing with blocks, then cleaning up. Or matching colors on a peg-board or putting the appropriate face parts on a Mr. Potato Head. I don't know if I have the attention span for that!!!

Problem is, A is so, so independent. I like that about her, but I do see (as I'm peering through the therapy and school windows) that she's more easily distracted than other little ones her age. She doesn't like to finish stuff - a whole book is too much most of the time.

Best I can do, right now, at least, is read to her while she in the bath (after the screaming bathing part). I can *almost* "command" her attention then.

Typical?

A. has Pierre Robin and, therefore has an atypical cleft palate (is there actually such thing as a typical c.p.?). Anyhow, yesterday we went to see her craniofacial surgeon to discuss her upcoming jaw distraction in September. We also asked about the time-line for getting her palate repaired and were told that the tissue on her palate is in bad condition due to poor previous attempts to repair. He said that the only option at this point (beyond an obturator) is to sew her tongue to the roof of her mouth for (I think) 3 months and then slice off the part that has adhered to the palate to create a new palate.

Has anyone had this done, or even heard of it?????? Doc says it's pretty awful. And when a doc says it's bad, I worry. Would it be better to just leave the obturator in forever??? Anyone have experience with obturators?? With jaw distraction??

Working it Out

I've been thinking about my previous post, and, instead of changing it, because I think it's important for me to chronicle this journey as I'm experiencing, I'll just add an addendum. What I meant was that we were not actively seeking to adopt any child before the advent of A to our lives. We feel so blessed, though, with the opportunity to give her a shot at life. She was NEVER going to be allowed to go back to her BM because the court was going to make sure that that would not happen. What we did for her and for her child was to ACTUALLY MAINTAIN AND PRESERVE their relationship. I think it is a gift.

I AM her mama now. Legally and practically. The other person is always, always welcome to be with her daughter when it's appropriate (she is not allowed, by the court, to be alone with her). And she will ALWAYS be her "first mama" - in fact, I don't care if dd calls her mama also. My heart is very open to this girl (my sister-in-law). I have known and loved her since she was a baby. That can't and won't stop just because of these circumstances.

I know that I have issues to work out for myself. All mothers have their lives changed by becoming mothers. I just had ZERO, literally zero, preparation for this particular change to my life. A requires an even higher level of care because of her medical issues - many of which have been gravely exacerbated by her BM's neglect. I'm still learning how to cope, and it would be a comfort if A and her birth family - MY family - would acknowledge me. Sorry if that seems selfish. Perhaps it is.

I know that A loves me. I know that I have improved her life. I know that I am her mama.

Correcting A Therapist - Ick!

Yesterday I had to ask my A's PT (physical therapist) to change the way she spoke about dd's posture and legs. She tells dd to "sit pretty" to correct (necessarily correct) her legs. It had been gnawing at me for a couple of weeks because I don't want dd to be told that what she does **naturally** is **not** pretty. I know the PT doesn't mean it in a negative way, but I so think that, especially as she's developing her own language skills, the language that is used to and about her is so critical. I don't mind people saying that she's pretty, it's not that I have a problem with that. Does this make sense?

So anyway, I asked the therapist to not use pretty as a litmus test. She was really sweet about it, but she did look at me strange.

I'm actually pretty proud of myself!

From the Peanut Gallery

I find it kinda funny in a sad sort of way, that when people are like "oh, I'm so sorry that your daughter has problems." And people often notice dd's trach and humidivent and ask, "Will she get better?" It really gets to me. I usually say, "Oh, she's actually fine. She's not sick at all, it's just how she breathes."

I guess having a child with special needs is kind of like being pregnant: people feel less inhibited about touching and making comments. You know, like how perfect strangers feel just fine about rubbing a preggo tummy.

Usually, I just try to blow it off, laugh at the goobers. But, as A gets older and becomes more aware of language I think I will be more fierce about cutting people off. And that's where it will get hard. I don't want her to have her attention drawn to her disability. I don't want her to ignore it either. I just want, so badly, for her to roll with it.

She Won't Call Me Mama

Even though it's only been three and a half months, I'm getting a feeling that there is something beyond her low-verbal state that is making dd not call me mama. My 19 year old sister-in-law is her birth mother and we only have A she was taken into foster care. What I mean is that we were not pursuing adoption. However, we are so utterly delighted and so in love with our little girl.

Anyway, A hasn't seen her BM in the entire time we've had her, and she only saw her three times while she was in foster care (2 months). And yet, I know, just know, that A's thinking about this person who neglected her to the point of life-endangerment. It started with the the fact that A (who uses some sign language) uses the sign for mama to refer to my husband. And, though she will/can say mama as a sort of babble, she refuses to point at me when asked "where's mama?"

This is all so complicated because her calling me mommy has been an emotional issue for my husband's family (dd's blood family). They want to maintain the idea that A's BM is still her mama.

A loves me. She expresses that often. I just want her to love me as her mama. I'm really sad.

Sorry for the rant.