Fancy meeting you here!
I'm so sorry things have been so dull on the blogosphere. We've had a big change...
Please welcome to the world my darling Matilda Mackenzie!
(not actually Tilly. But I thought a baby announcement should come with a picture of a cute baby)
She was born almost six weeks early, but she's doing well. When Maisie was born, I had an emergency c-section to save her life. My uterus was pretty traumatized by the experience and has some pretty heavy duty scar tissue. It got to a point where my OB/GYN didn't think the uterus would be willing to stretch much further. Rather than test the limits and possibly risk rupturing my uterus (nothankyou) I had acupuncture to induce labor. Guys, that was INSANE. I had one session. I was in labor fourteen hours later. Labor normally starts within 48 hours after acupuncture, so that was a bit fast. But anyway, it worked. Matilda was born at home on May 19th and taken right to the NICU, where she spent five days before coming home. She weighed four pounds and fifteen ounces. At four weeks, she now weighs five pounds, four ounces.
And, of course, she has her limb differences. I talked about this a long time ago when we first found out, but honestly it hasn't bothered me. Tilly will not struggle with the hundreds of other things that Maisie copes with every day. She will probably be able to walk and run and write and play. She'll be fine. She'll adapt.
Basically, Tilly's right foot is permanently curled in, sort of like a club but far worse and less fixable. She's missing a number of bones in that foot and ankle as well as two toes. Her left leg is completely normal. Her right arm is amputated at the elbow and her left hand is sort of triangular, like her thumb is tucked into her palm and her fingers are all squished together. Imagine the "quiet coyote" hand signal but without the pinky and index fingers up. And again, she's missing a lot of bones in her hands. An orthopedist tried to talk to me about corrective surgery but honestly all I wanted to hear was that there were some options and then I asked to him leave. I just delivered this baby! I don't want you cutting her up just yet!
So anyway, enough about Tilly. I'm sure you're all dying to know about Maisie the Great, my beautiful almost-SIX-year-old girl.
Maisie, my friends, is doing A-MAISIE-ING. She was decannulated just last week -- that means her trach is GONE! Gone! Whoo-hoo! She is so big and strong. She is FINALLY over 30 pounds -- yes, I did throw a party when she weighed over 30 for the first time at a checkup. In fact, she weighs 34 pounds and is almost 40 inches tall. Which puts her in the 5th percentile for weight (which is actually AMAZING because she's hardly ever even on the chart, she still isn't for height.) She's still pretty skinny and no one believes she's almost six years old, but she is making progress and that's all we can ask for.
A big part of Maisie's therapy lately has been stretching. I discovered a few weeks ago that her muscles were pretty seized up from lack of use, so I started stretching her arms and legs to regain mobility. I think it's helped a lot, and her physical therapist agrees with me. I think it's also increased her strength, because she will push her legs against me or engage her abs when I bring her legs up.
What else? She started group occupational therapy a few weeks ago at the recommendation of a special needs mom friend of mine, and I think she's really enjoying it. There are four kids in the class and they all practice drinking from cups, washing hands, blowing noses, etc. Maisie is the only one who isn't a great conversationalist, and I think it's been great for her to listen to other kids talking.
I think the last time I talked about her speech was in February, when she only had about a dozen words. She's up to I think 44 now, I have to check. We recount once a month so that number is from her May physical, which was I think May 7.
All in all, this royal disaster is doing really well. She's growing, developing, walkin' and talkin'. And I have a hunky husband and a cute new beanie to boot. Life is good.
