Adopting Grace

The journey to bring our little girl home

Browsing Posts published by Kimmiej7

You, I and Me

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Leeza has picked up on the English language very quickly and is generally doing pretty well with it. Pronouns, however, just really confuse her. Most of the time she will only use ones that refer to herself so we get a lot of, “Will I help me?” or “Will I play with me?” We’ve been rephrasing these for her for months, but we’re not making much headway. In an attempt to clarify it for her this evening I overheard Philip explaining it this way…

‘Leeza, you are me and I am you. You is I and me. I is you. See?

I just had to giggle from the kitchen because even I was confused by the end of that. But, who knows? Maybe she’ll remember it this time!

The Dad here…. just to get that odd little gem above out of your head, here is a video of one of our Neurosurgery visits.  We “stopped” in for an MRI and visit on our way down to Texas to visit with Kim’s family.  As luck would have it we ended up with almost a two hour wait.  So, what else do you do with four kids under five in a 6′ x 10x room full of medical equipment? We weren’t sure so we recorded it. I hope you enjoy!

MRI

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Just an  update because a couple people have mentioned they are waiting to hear how the MRI went today…Philip took Leeza down to the U this morning and there’s almost no change from 2 weeks ago. She still has a large amount of water around her brain so the shunt was adjusted to its’ highest level and we’ll go back next Wednesday for more MRIs. Since we thought Leeza was having a shunt malfunction this past weekend Philip was able to tell the neuro staff what we’d seen and they assured us it was not a malfunction and told us how we could differentiate it from a regular illness next time. Considering that is wasn’t a malfunction we learned that Leeza is a really whiny sick person (hopefully that’s a stage!).

We also got a demo wheelchair this week and I can’t tell you how wonderful it is to see the possible end of taking a double stroller everywhere we go! Leeza still has to build up a lot of strength to be able to use it efficiently, but she likes it and is already able to get from it to her car seat alone. Yea! And it allowed us to get out in the yard yesterday afternoon without her having to scoot everywhere. I’m loving this chair so far!

Changes

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I’ve been slow getting updates here, but we’ve been pretty busy. Leeza has continued her weekly PT sessions, along with some speech and occupational therapy,  and we’re still working on getting a wheelchair ordered. She uses a walker, her ankle/foot braces and a velcro contraption called a Theratog to help her walk when she’s at church or other open places, but most of the time she scoots to move. She got to try some crutches a couple weeks ago and she doesn’t have the core body strength to use those at this time. We hope in the future they would be an option for her. We have had a few people ask if she’s expected to ever walk independently and the answer to that is no. Both of her hips are dislocated (and there’s no way to fix that) and she’s never expected to gain control of anything below her knees. It doesn’t mean she won’t be independently mobile, just that she’ll need some sort of equipment to support her.

We’ve also been spending a bit of time at the University checking out her brain. Her shunt had been adjusted to a lower level last time I wrote, but when we went back in a couple weeks ago the new MRI showed that almost 1/3 of her head was water. The shunt was allowing the ventricles in her brain to decrease, but her brain wasn’t growing fast enough to fill in the space so her body was filling it with fluid. Not good. The shunt was put back to a higher pressure and we go back in this coming Wednesday for more MRIs to see if it looks any better. We knew that Leeza was acting more confused than usual and was just totally lost when we deviated from our normal schedule. In the past couple of weeks we’ve noticed several other changes in her, but it’s difficult to know whether they’re because of all the changes going on in her brain or because she’s growing and her spine is still tethered. The symptoms of both are very similar and very frustrating at this point because we’re watching her decline and there’s nothing we can do to stop it until her brain is stable. The spinal surgery will release the nerves that have attached to the bony part of her spine and will stop any further damage, but until that surgery can be done damage is continuing to happen and she is  losing function that may or may not be regained. At this point we just ask for prayers that her brain would stabilize so we can keep our surgery appointment in May and for patience and understanding for all of us as we learn to live with this uncertainty.

On a happier note, we got to go visit my family in Texas last week for the first time since Leeza has been home. She finally got to meet her Memama, had her first chips ‘n salsa, met her first horse (she was terrified!), met 2 more of her cousins and was in her first race. Philip and the kids, my mom, one brother and his girlfriend all participated in a race while we were there and we had a great time. Despite our fears that she wouldn’t do well on a long car ride, she did great! We spent almost 16 hours in the car on the way home and with the exception of 1 food fight in the back seat, it was pretty uneventful. Thank goodness for DVDs!

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!

March 4th

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A year ago today I first saw a picture of the little girl we knew then as ‘Grace’ while I was reading random blogs. I was just trying to relax after a long day. I didn’t intend to read anything challenging and I certainly didn’t intend to change our lives. God intended for both of those things to happen that day. As I thought about the past year I’ll admit my mind first wandered to all the hard things we’ve been through. It’s been a very long winter trapped inside with 4 little kids, we’ve made it through months of a child screaming all night and going through up to 29 diapers during the day, months of medical appointments and new diagnoses, months of wanting to respond to the stress in a loving, Godly manner and failing, nights spent asking God why He thought we could ever do this and days spent remembering the kids we had to leave behind. It’s been a long year.

But it’s also been a year in which we’ve seen God move in ways we’ve never experienced before. He’s provided around $23,000 in a few short months, brought people around us (some of whom we don’t even know) who pray for our family on a daily basis, brought Leeza home in better shape than anyone dreamed she could be in,  gave us almost immediate access to a surgeon who usually takes at least a year to get in to, preserved a spunky spirit in Leeza that amazes each therapist she works with and has brought at least 16 different families around us who have significantly invested in our family and made this year possible. He has shown me sin in my own heart that I thought I had dealt with and has been faithful to refuse to let it stay. He has used Leeza’s struggles to open Josiah’s eyes up to more of how He works. And maybe most importantly, He’s shown us that He’s faithful to stay with us when it just feels like this is too much.

Some families seem to sail through the adjustment after an adoption with grace and peace…that hasn’t really happened for us. It’s gone smoother than it could have, but it’s still been the hardest thing we’ve ever chosen to do. We are still very much in the middle of this process. We’re still learning to love this child as a daughter, learning to let go of some of the expectations we had for our family and how to grow new ones, learning how to be ok with whatever diagnosis gets thrown at us and whatever that means to our daily comfort and time. It’s not a fun process many times, but it is a good one. And through the process we both have the feeling that God is just preparing us for something else. Right now neither of us knows what that is and, frankly, when I try to figure it out the possibilities scare me and I have to trust that God knows what He’s doing and that He’s leading us somewhere that will glorify Him. In the meantime we will celebrate that we are one year into this journey and we have a lot to be grateful for. Thank you!

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.

A Bad Hair Month

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Just when I figured the poor kids’ hair couldn’t possibly get any worse we realize she has surgical glue ALL OVER her incision. She hasn’t been aloud to bathe for almost 3 weeks,  a fourth of her hair is shaved and she has a mom who is still trying to figure out what to do with those beautiful curls. Her ‘do is a bit funky right now. On the up side, she doesn’t really care, she has cute hats thanks to Nanny and Mrs. Marcia and the sutures are off! We just got back from the U to have them removed and she gets to take a bath tomorrow. It took 3 of us to hold her down and the promise of a cookie for lunch to get those sutures out, but it’s done and she’s having fun showing off her scars to Josiah.

She also had some MRIs done today and I got to see how much the ventricles in her brain are starting to shrink because of the shunt. There has been some big change, especially towards the center of her brain. Because it’s changed so quickly there is a thin layer of fluid around her brain so they decided not to change the pressure on the shunt today to give her brain a chance to regulate itself. We’ll go back in a month to check it again and possibly change the pressure. By that time we should be getting close to the pressure they want to plan the spinal surgery. All in all the appointments went well today. And once again, our church family bailed us out of a tight spot by watching some of the other kids who were sick while I took Leeza in. Thank you! Next week we see Urology and Orthopaedics again.

‘I Like-a Straw’

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Leeza doesn’t really understand what just happened this week…we explained that the doctor put a straw from her head to her tummy because she likes straws. She actually seemed to like the hospital. Everyone waited on her and she had one-on-one attention from us. She got to eat chicken strips and chocolate milk (when she had an appetite) and stayed up late each night. Life was pretty good, and then we came home and chores and broccoli became a regular part of her day again. It’s going to take some time for her to get used to this! Her shunt seems to be doing just fine and we’ll go back in 2 weeks to have it adjusted to the next lowest pressure and have her sutures taken out. We’ve got reminders of what a shunt malfunction looks like in my wallet and on the fridge and, Lord willing, we won’t have much practice in what that looks like.

The other kids were shuffled between church friends for the beginning of the week as Philip and I took care of Leeza and then Nanny and Ms. Sandy came to hold down the fort the rest of the week. Once again, this week wouldn’t have worked without all the help from friends and family.

All in all I think it went pretty well. Leeza is recovering well, the kids loved having family here and Philip and I learned how the hospital system works so we’ll be better prepared next time. We know now which units have showers, that parents aren’t fed, how to get parking paid for, that the uncomfortable-looking cots aren’t so bad and that we will take charge of Leeza’s meds next time. We also met a wonderful social worker who is helping me wade through the DHS paperwork (yeah!) and got to see my buddy in urology who has helped us through so many difficult days. The next surgery will be in 3-6 months and I feel like we’ll be going into is a bit more prepared than we were this time around.

Just Fine

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Just a quick note that we’re doing fine. Leeza was back to normal today and enjoyed playing with some new toys and snuggling with us all day. One hand splint got to come off if she promised to leave her IV alone (so far so good). She ate her breakfast, most of Philip’s and half of mine…safe to say her appetite is coming back! She was moved out of PICU tonight to the regular ped’s floor and we’re hoping she’ll be able to scoot around soon because we hear there are plenty of toys and crafts to keep her busy if we can get out of the room. We’re expecting a Thursday or Friday discharge, but we’ll have to wait and see what the Dr. M says. Philip and I will be swapping places tomorrow afternoon and I’ll stay full time at the hospital with her so if we don’t get posts up in the next few days it just means she’s keeping me busy! Thanks for the prayers!

Shaved

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This is going to be short because I’m tired, but just wanted to let everyone know Leeza made it through surgery just fine. Her shunt looks good so far and the doctor said he didn’t find any surprises today (always good when you’re talking about a brain!). She is in ICU for a day to make sure she’s responding alright and is not so happy that her hands are all taped up to prevent her from ripping out her IV and monitors. She’s also not going to be happy when she sees what they did to her hair. Dr. Menezes heard that she was concerned about them shaving her head so he tried to be conservative and left some curls around the front of her face…everyone else will be able to see the big bald spot, but she probably won’t! She did great through the whole thing and is resting pretty well right now. All in all, it’s been a good day full of lots of blessings from God. My favorite part was watching her heart rate in the recovery room as Philip told her he loved her. Each time he said it her rate would increase. We all know it’s important to tell our kids we love them, but to see her responding to it on the monitor was cool.