Monday, December 17, 2007


A is now 30 months and is in a stage where she is kicking us during diaper changes, and when we have to do things to care for her special needs (she has a feeding tube and doesn't want anyone to touch it - though we, obviously, have to). I have been trying the "be gentle with your feet" tactic and have seen some response, but, at a certain point, I just find myself having to restrain her just to get the diaper on.

I guess my question is if restraint qualifies as gentle discipline. I know it can't feel good to her, and I'm terribly concerned about it hurting her, but I just don't know what else to do. I try to keep the restraint as brief as possible and I absolutely don't express any anger or anything - it's just a means to an end.

The other question is whether or not it's appropriate to *force* her to walk with me to do this or that (like clean up or coming out of a room she's not supposed to be in or that sort of thing). I try very hard to hold her in such a way that she can't dislocate her shoulder or anything dangerous while I (almost) drag her to whatever place or away from whatever place. I know I could just pick her up to remove her, which is what I do in emergency. But this is for when I'm trying to teach her to move away from (or toward) something that she doesn't want to do.

Friday, November 30, 2007

Post Thanksgiving Post

A is doing pretty well. We're still really struggling with the reflux and the chest congestion, but, at the same time, she's talking and running like crazy. She's made lots of friends at school and loves, loves jumping on the trampoline at therapy (Santa's actually bringing her a mini therapy trampoline!). She also has lots of fun with her three cousins and her uncles. She's the belle of the ball for certain! A two-year-old ornery belle.

We are really looking forward to Christmas with her. It will be quite a change for us. K's mother passed away about four weeks ago, so it's bittersweet, but A has really been a comfort to him - a little piece of his mom still in the world. We are having to restrain ourselves from going too crazy. I've actually considered wrapping up toys from the bottom of her toybox that she hasn't seen in a while. That's awful, isn't it? But, my goodness, it can be expensive!!! She really doesn't need any more toys. I don't know what I'd do with them!

She is having surgery on the 11th of December to remove the pins from the jaw distraction. It moved her jaw forward 15 millimeters! She looks both the same and very different. And now she can make all kinds of noise. We are planning to have the trach removed in the first part of next year - isn't that amazing?!

Saturday, September 8, 2007

Sad News

K's mom is in very grave condition. She's on life support and is not expected to recover. We already had to go to Nashville for an appt. at Vandy for A on Monday, so K's going to drop us off there today and head on up to Knoxville this afternoon. Please pray for him.

Secondly, A is struggling with a serious chest infection, which the anesthesiologists are very concerned about for surgery on Tuesday. If it has to be postponed it won't happen until after then new year.

Friday, August 3, 2007

Too Much Going On?

Oh, yeah. I am right there. It seems like there's just too much. But someone reminded me the other day that therapists know we can't do it all, they're human too, they just have to lay it all out there because that's their job. Our job is to sort through all that stuff and figure out what's going to work best for our child and for our families.

A's therapists keep telling me we need more structured activities (I've posted, in exhaustion, about this before). What I've finally come to realize is that I'm only going to be able to provide a certain amount of structure. Aside from that, she has to be able to LIVE for goodness sakes. And unstructured time is what is most precious, and creative and educational and therapeutic, in my house. I think (I hope) she's learning all of those things that they want her to learn in a structured way by interacting with her daddy and me in the garden; walking on uneven ground; touching sticky, wet, gritty stuff; barking at the dogs; tasting her pool water (ick, I know - but she's SWALLOWING, something we couldn't get her to do in a "structured" environment); etc. If she had siblings, there would probably be even more of that (but that's not happening).

All that to say, I have to do what my heart tells me. I know what's best for my kiddo, better, even, than therapists. This I know for sure.

Monday, July 30, 2007

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.

Sunday, July 29, 2007

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.

Tuesday, July 24, 2007

Structured VS. Child-Led

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.


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??

Sunday, July 22, 2007

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.

Saturday, July 21, 2007

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!

Friday, July 20, 2007

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.

Thursday, July 19, 2007

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.

Thursday, April 26, 2007

So Here's What Happened

I kinda had baby. Actually, had, is not the right term. I acquired a baby. So, if you're someone who has followed this blog (back when I was actually writing in it), you know that the irony of me "acquiring" a kid is rich. REALLY rich.

For years I struggled with the "I-want-to-be-a-mom-but-I-can't-so-I-don't-care-na-na-na-boo-boo" syndrome. And just when we had bet the farm on grad school, bought a house in a "bad" school district, and settled on spoiling our niece and nephew rotten as an investment in our future childless-but-in-a-nursing-home-so-who's-gonna-visit-us selves, Alexis pops into our world.

And we totally fucking love it!

Wednesday, April 18, 2007

She's Hatched!

It's a beautiful day in Knoxville, y'all. I'm sitting here in a tiny hotel room looking at awe at the tiny red-headed baby napping in a crib next to me. We went to court this morning and the state has given full legal custody and guardianship of A. We're stunned, elated, exhausted and really, really happy.
It has been an emotional week. Our social worker Tiffany was a regular Julie McCoy and had us hopping and running for three days straight. We got to spend some wonderful time with the foster family, which works with Youth Villages. A was their first baby to foster (for the past two months). They usually get older children. Foster Mom was just amazing. She completely fell in love with our little girl, and cried all day at court today even though she is so happy that A is going to get to be with family.
In fact, we have yet to meet someone who hasn't cried at the thought of A leaving their care. No joke. There's just something about this little one. She's an incredible fighter. Despite the trach and the g-tube, she runs and laughs and squeaks like crazy. She loves television, though we're planning on going cold-turkey off of that for a little while at least. Also, she looks just like K - in a good way.
Well, we'll write more later and will send some pictures soon. If you're tired of hearing our saga, please don't hesitate to let me know. I certainly don't want to bug anyone. We so appreciate everyone's thoughts and prayers that have been sent up for us over the past two months. Things like this make us so grateful for the wonderful friendships with which we've been blessed!

Tuesday, February 27, 2007

We're Pregnant, Sort Of!

Hi Friends,

K and I want to introduce you to A.M., who is, hopefully, about to become a member of our immediate family. She is our niece and has some medical issues that have made it difficult for K's sister to care for her adequately. We have already begun the process, but still have to undergo a home study by the Department of Children's Services. A is in foster care in Knoxville at this time, so we really hope that the home study can be done speedily.

Say a prayer for us as this is really going to be a life-changing experience. A has Pierre Robin Syndrome, which has caused her to have to have a feeding tube and a trach.

We are feeling overwhelmed, as you might imagine. But, more than that, we are feeling very blessed to have this opportunity to share our blessings with this sweet little girl.

Can't wait for you to meet her in person!