Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged medical

5 months

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Leeza’s been home almost 5 months now….that doesn’t sound like much time, but it’s felt like a lot longer. Part of that is because the girl has kept us hoppin’ with all her medical appointments, but we’re making some progress! Here’s a quick run-down of where we are:

Urology: we’re basically in maintenance right now. She’ll go in for urodynamic tests from time to time, but as long as we don’t start having problems with infections she’s pretty much where she should be. We were told to start considering a surgery to help with her bowel program after she’s stable from the spinal surgery.

Neurology: We just had another MRI today and her ventricles are continuing to close well and her brain has grown enough that her shunt could be moved down to the next lowest setting. This is probably the setting she needs to have the spinal surgery done. We go back in in 2 weeks for more MRIs to see how her brain handles this change and, assuming she keeps responding well, we’re penciled in for surgery to de-tether her spine May 20th. She has grown 3 inches since coming home and we’re starting to see some changes in her body that make us wonder if some nerves are being stretched and damaged.

Dentistry: Her teeth looked great. She has spots where her enamel didn’t fully develop, probably because she was premature, but they’re baby teeth so her permanent teeth should be just fine.

Psychology: We had her tested at the University for cognitive/psychological/developmental progress and she came out at about a 2.5 year old level. It’s very difficult to tell what’s brain-based and what’s because of history at this point. We’ll go back in a year to retest and everyone is expecting that gap to close considerably.

Physical therapy: She’s going once a week for therapy and we’re doing daily exercises at home to strengthen her legs and stretch out other muscles that are tight and forcing her into an odd posture. She has a walker and we’re in the process of getting a wheelchair for longer distances. Her feet turn in so much that she literally falls over her own feet when using the walker so we’re troubleshooting how to help that. Right now it looks like a crazy contraption with tons of velcro that forces her legs to face forward. She is incredibly excited that she can walk, regardless of how hard it is. We’re also working on building up her core muscles so she has better balance.

Speech Pathology: We had a Russian translator last week (for the first time since she’s been home) and were surprised to find out that she refuses to speak Russian anymore. She still understands it, but would only answer in English. She is officially an English speaker now! The therapist recommended sessions to help her with vocabulary, but we really don’t believe this is appropriate right now and we’re amazed at how much vocabulary she already has. We will be meeting with another speech path this month because we’ve noticed she has problems breathing and chewing at the same time and we’d like to figure out what’s going on there.

Socially: Ok, so this isn’t medical, but it’s been a big change. We had planned to keep Leeza with one of us for the first 6 months, but in the past 2 weeks we felt like she was bonding well with us and she and I both needed a little space. She’s been able to stay with babysitters (with the other kids) for short periods of time and gone to the church nursery a few times. She’s done great and loves it! She was very tired of having to sit next to me in Bible study and MOPS and feels like a big kid now that she gets to go play with everyone else for a bit. She’s starting to remember other kids’ names and has learned enough of some of the routines in Sunday school that she can blend right in with everyone else during the singing and story times.

I think that’s it for now!

A Dean…Again

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Leeza is officially a Dean…again. We went to court today to petition for a US birth certificate which transfers all her paperwork to America and we can stop trying to keep up with all the different court decrees and translations from Ukraine. Trying to fill out the paperwork was challenging because it had places for the birth mom info and adoptive mom info, which seems straight forward except that on all paperwork I’m already listed as her mom (since she was already adopted in Ukraine). I messed up the form pretty good, but they still granted our petition and we got pictures with the judge and I think we’re finally done with court work!

Also good news, we got her SS# recently so we also were able to get our handicapped parking placard!! It may seems like a lame thing to get excited about, but with 4 kids (2 who can’t walk) and tons of snow this is a HUGE help. It really is fun getting to park right up front. :)

On the medical front, we’re still trouble shooting her GI care and trying a slightly different program to see if it works better. We now get to wake her up late at night to cath her one more time and while that’s not really much fun, it IS funny that she can sleep through it. That simply amazes me. Her prosthetics should be here in the coming weeks and we’ll get to see how she does with those and we’re still waiting to hear when the shunt surgery will be rescheduled. We’ve been told to expect sometime in January.

In our downtime we’ve been getting ready for Christmas with books, Advent calendars, cookies, music, Bible stories, wrapping presents and keeping Kasia out of the wrapped presents. Leeza has just figured out that some of the bags have her name on them and she’s intrigued. If she knew there was stuff for her in them I don’t think we could keep her out of them. Sometimes her lack of understanding is helpful. :)

Thankful for Sunshine

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Busy. We’ve been very busy. Not so much with lots of things to do, but every day takes a lot of energy just to do our normal tasks. We’re getting better at our new routine, but until our crowd is a little older (and a few are out of diapers) life is just going to be a bit hectic. Despite the busyness, life is good. We are learning about Pilgrims in school, learning new songs in Sunday school (Leeza only knows 2 words, but she sings them VERY loudly), learning how to use the potty, how to stay in bed until 7am, how to put on our own shoes and coats and how to chew with our mouths closed. Kasia is trying very hard to learn to walk and Josiah is surprising me daily with the new words he can read and write. Grace is my little helper in the kitchen and Leeza is learning new words every day. She can now almost sing the whole ABCs and can count to 9 in English. We’re having a few English sentences pop up every once in a while and she surprised us all when she blurted out ‘thankful for sunshine’ in the car the other day when it peeked out for a few minutes on a rather dreary day.

Just to keep things interesting, we took all 4 kids to the attorney’s office this morning to sign papers for Leeza’s readoption here in the states. She is already legally adopted, but we’re going through this so that she will be a US citizen instead of just a legal immigrant. We’ve learned that the paperwork is the same as if we had adopted her from the US, so it’s full of stuff asking the judge for permission to adopt her and change her name and let her live with us…all of which has, obviously, already happened. We will need a home visit from a social worker and possibly a judge so that they will ‘grant’ all this for us. Our court date is set for December 23rd so it looks like our Christmas gift will be having all 4 kids be Americans. :)

We get a lot of questions about medical stuff, so here’s what we have coming up…our MRI session will be Dec. 10th, we’ll be meeting with a spina bifida specialist March 3rd and sometime between those two we’ll probably meet with Orthopedics, PT and OT. After the visit on the 10th we may have a better idea of when her back surgery will happen.