Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged urology

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!

Catch Up

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Let’s see…what’s happened since the last post? Leeza went on her first fairly long road trip to visit the Ferdon’s (the missionaries we stayed with in Ukraine) while they’re here in the States. It was good practice for our trip to Texas later this Spring and she did really well. She also went to the dentist for the first time last week. Josiah went first so she could see how it was going to work and she did great with it all. After a urodynamics test and brain surgery a teeth cleaning was a cinch! We learned that the discolored marks on her teeth are probably because she was so premature. The enamel on her teeth is thin and not complete in those sections, but amazingly they look fine and we were just warned to not let her drink juice or pop often (not a problem since we don’t keep those in the house). It was such a relief to have a doctor say she looked normal and didn’t need any unusual follow-up appointments!

Leeza Lounging on the floor during a lazy Saturday.

We also had another University day. I’m starting to feel like we live there. We saw Orthopaedics this week and finished the fittings for her AFO’s (plastic leg braces). These will keep her feet and ankles straight while standing so she can’t keep walking on her ankles. They will also prevent her feet from continuing to turn in. Unfortunately because they are so big she can only wear one style of tennis shoes with them, further limiting her wardrobe. Thankfully, because her feet and legs are so small we are able to use store-bought shoes as opposed to having special shoes made. I expect at some point she will get tired of having to wear these, but for right now she thinks they are very special and pretty and she’s very proud of them. We also got a referral for a physical therapist so we can start figuring out what equipment she’ll need to make her more independent. Since she’s come home we’ve been home-bound because she has no way to maneuver around our yard or a park…with the promise of warmer temps soon we are determined to find a way to get outside and enjoy it!!

We spent the rest of the day in Urology with our favorite University friend, Mrs. Margaret. This is the lady who spent a good portion of the last few months on the phone with me trouble shooting urine and bowel programs. We learned we are doing a good job with her cathing and that NO bacteria showed up in her urinalysis…that’s amazing and very unusual. We also learned that we’ve probably done about the best we can with her bowel program and that to get any better will require surgery. It couldn’t be done until after her spinal surgery and it’s not something that has to be done right now, but we’re interested in finding out all the pros and cons because no one is happy with the way it’s being handled right now. We’re hoping to speak to someone with more knowledge of the details when we go back to the University at the beginning of March.

I think that’s about for now. We get one week off and then head back to the U on March 3rd for a full work up at the Center for Disability and Development.

Can I Applesauce?

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Leeza celebrated her first Christmas and New Year’s at home and was, I’m afraid, pretty confused. However, with all the  cake, family and presents involved it didn’t seem to bother her one bit and she had a great time! She understood that we kept telling her it was Jesus’ birthday, but since ‘baby Jesus’ is a small toy in the nativity set to her I can see where that would be a bit hard to understand. She kept giving us a ‘my parents are so confused’ look and telling us it was HER birthday. Despite not really knowing what was going on she had a blast wearing her new tu-tu, pink satin gloves, playing with Cooties, eating fun treats and enjoying her Daddy being home so much. She got to spend her first real holiday with family and has spent the last several days wondering where they all went and telling us her Nanny and Sadie are ‘silly hooses’ (silly gooses).

She’s been home about 2.5 months now and while it has not been as smooth a transition as I’d hoped for, we’re starting to see some real progress. In the midst of all of her medical issues and her still trying to figure out our family it’s easy to lose sight of how far we’ve all come. She now goes to bed and nap as easily as any of the other kids, eats most of what I feed her, can be left in a room alone without panicking, will sit fairly still during reading time, will play games with the other kids and is learning to be obedient. She’s starting to try to write her name and is beginning to focus enough during school time that she’s learning her shapes and how to recognize a pattern. Her English is continuing to grow, which is great, but it’s the odd phrases she comes up with that we enjoy the most. My favorites right now are ‘I like-a snizzle’ (I like snow) and ‘Can I applesauce?’ She is fascinated with the word applesauce and obviously thinks it means something else because she adamantly tells me that jar of yellow stuff in the fridge is NOT applesauce.

We got a new date surgery date for January 24th and are in the process of making sure she will be infection-free so it’s not postponed again. I am now on a first name basis with the PA in Urology at the University and talk to her more than my own husband some days. With a lot of work, medication and prayer she should do her pre-op on the 21st, have surgery the 24th and spend the next 5 days in the hospital as her shunt is adjusted and the pressure in her brain is monitored. One of us has to stay with her around the clock during this time so we would really appreciate prayer as we try to figure out child care for the other 3 kids for the week.

The Weirdest Goody Bag

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After 7 hours, 2 tests, a doctor’s visit and a teaching session we are home from the hospital. Leeza was not a big fan of the tests (can’t really blame her), but she did great. The staff in pediatric urology was amazing and went above and beyond to make us feel comfortable. They even sent Leeza home with her first Barbie doll for being such a brave patient.

We got new toys too in the weirdest ‘goody bag’ I’ve ever received. We are now the proud owners of a catheterization kit. We learned that Leeza does not have any kidney damage from reflux (a major answer to prayer!), but in order to prevent it from eventually happening and to protect her bladder from further damage she needs to be cathed several times a day. They gave us a crash course in how to cath her, which was amazingly easy at the hospital, but not so easy at home in poor lighting with 3 other kids all crowding around wanting to see what’s going on. With 4 kids 4 and under there is no privacy in our house. :) We came home with a lot more knowledge about how to help her body work for her and we’re just so grateful that once again God seems to have protected her from harm. We have no reason to believe the orphanage ever cathed her so the fact that her body looks as healthy as it does and she hasn’t been overwhelmed by infections is pretty amazing. We’re getting used to hearing doctors say, ‘Well, I don’t know why this hasn’t hurt her but she’s ok.” I’m not sure what God has planned for this little girl, but His hand is certainly on her.

4 Weeks

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Just a quick request for prayer tomorrow as we head to the University for a day of testing. Leeza will go through a full urology work-up and then meet with a specialist at the end of the day to go over the results. At least one of the tests really doesn’t sound too fun and I’m hoping it goes smoothly.

On a happier note, we got our first ‘I love you’s from her this week. It sounds more like ‘I blue you’ coming out of her mouth. She had her first chocolate milk and drank it so fast she almost choked herself. A few toys are starting to catch her attention, although I’ve noticed she’s only attracted to those designed for about 2 year olds. She’s trying so hard to learn how to hold a pencil and it’s amazing me how quickly her fine motor skills are developing. And speaking of developing, she’s gone up an entire clothes size in just 4 weeks! She’s going to keep us on our toes. :)