Adopting Grace

The journey to bring our little girl home

Surgery Update

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Just a quick update for those who were praying for Leeza today…surgery went really well and she’s awake and doing fine. She did not need as much bladder reconstruction as we originally thought so the surgery was only 6 hours long and she doesn’t have quite as much to heal from. That said, the poor kid has tubes coming out of her all over the place to drain most of her abdomen as it heals and some are pretty sensitive. Unlike her other surgeries, this one took place in an area where her nerves work pretty well so she feels most of it. Obviously two of those holes in her will remain (part of the surgery was to install ports for cathing and enemas), but the others will be allowed to close up when the drainage tubes are no longer needed. The doctor was completely surprised when she opened Leeza up to find that her bladder and appendix (which was used to make the internal part of her enema tube) were larger than most adult organs. We’re not really sure why this happened, but it made the surgery MUCH easier and seemed to make the residents who were watching the surgery to learn very happy because it was easier to see. Once again God was watching over her and helping her through another procedure that could have been much messier and dangerous.

Thank you to everyone who has been praying for her today and please keep praying for pain management and that we would be able to help her keep all those drainage tubes in place while they are needed.

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Summer 2012

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As we head into another season of school and surgeries I figured it was time to update how Leeza’s been doing. Unlike the rest of the Midwest, we’ve spent the summer enjoying these hot temperatures and have spent a LOT of time outside. I’ve kept the kids outside most afternoons and Leeza is fast enough on her crutches this year that she pretty well keeps up with everyone and can go anywhere they can (with the exception of the garden…crutches are not friendly to my plants!). She has learned to swing independently, climb the rock wall on the fort and likes to run races down our long driveway. She and Josiah have been attending summer school to help her retain what she learned last year and I took the opportunity to have her practice  using the 2 flights of stairs in the school instead of riding the elevator. Not sure she was too happy with that choice initially, but she’s become a pro and I think she’ll be good enough when school starts back up to keep using them with her class. We still work on stretches every day to help release some of the contractures her body seems to like to develop and we’re supposed to be doing a lot of core workouts to help compensate for the muscles that didn’t develop in her lower body, but getting a 5 year old to cooperate with that has been challenging. I suppose that gives us a goal to work towards this winter!

We have also enjoyed adding Mrs. Joyce to our team as we care of Leeza. I drug my feet on having a home health nurse for a long time, but we decided to give it shot this summer. We all love Mrs. Joyce!! She comes 5 days a week in the morning to do part of Leeza’s daily care and it has relieved a lot of tension in the house and made the day flow smoother for everyone. We will lose her once Leeza starts back to school and we’re really hoping we’ll be able to schedule with someone else to come in the evenings.

We’re also in the countdown for the next set of surgeries. Leeza will be admitted August 20th to be prepped for bowel and bladder surgeries. Thankfully, they can all be done at the same time, but it will be a loooong day! We’ve been told to expect her to be out for 8.5 hours as they place abdominal ports for urinary and enema catheters, rework her intestines so we can do antigrade enemas, enlarge her bladder, reposition her ureters and tighten up an internal sphincter so she is no longer leaks urine. By the time it’s done she won’t have much of her original anatomy down in there, but it will be a huge step towards allowing her to be continent and (hopefully!) someday independent in her care. She’ll get to hang out at the hospital for a week afterward and then recuperate at home for a couple weeks before she’ll start school a few weeks late. At least that’s what we’ve been told…typically she gets so squirmy in the hospital that they release her early and she bounces back faster than expected. Guess we’ll just have to wait and see how she does this time. At any rate, she should be well on her way to feeling better by the time she turns 6 in September!

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Yes, We Are Still Alive

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Leeza Dean

Wow, keeping up with blogs hasn’t been my strength lately! Leeza did make it home from the hospital just fine and spent the next 3 weeks hidden here at the house while she healed. It was important that she didn’t catch anything during that time because if her surgical site became infected it could turn into meningitis. We made it through that time fine and her back is almost completely healed now. She missed a month of school, but did school here with the rest of us to keep her in her routine. Since the surgery her core strength has improved and she’s able to use her crutches much more often. The hope is that some day she’ll be able to use them as her primary mode of transportation, but for now we’re just letting her get stronger and continuing to remind her that she can’t use them as weapons when someone upsets her. She has gained some sensation in her lower body, which has changed some of her bathroom routines. She still doesn’t feel pain in most parts of her lower abdomen or legs, but she can feel pressure. It’s taken her some time to figure out that pressure isn’t pain and she’s stopped yelling every time she feels something unusual. She has gone through another growth spurt after the surgery and it’s been wonderful to NOT see her regress as her nerves are pulled around her body. We met with Dr. M yesterday and he said this growth spurt is not allowing her internal stitches to hold together tightly, which is keeping a very small part of her back open enough to leak some spinal fluid. It’s a very small area and it should heal right up when she stops growing so we’ll keep it covered until then. In the meantime we get to see lots of Xrays of her and it’s funny to see that insanely long shunt tube wrapping all over her abdomen.

After surgery we also experienced a shift in her demeanor. It’s hard to explain, but more days than not she’s starting to act more like part of our family. Even friends have noticed that she’s responding to direction with a look of respect instead of defiance. She’s seeking out approval and hugs from me and is slowly starting to accept the structure I set for each day. And after being home for over year she can now participate in holidays and traditions because she understands at least a little of what they are about. Our hope has been that this will be the year when we get to really start to see who Leeza is and it’s starting to look like God is answering the beginnings of that prayer.

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She’s back!

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I got a call this morning that Dr. M had decided Leeza was done at the hospital and she would be discharged this afternoon. She’d been off pain meds for several days, had blown the 6th IV and refused to stay still enough to keep any monitors on. They had also started her back on her regular bathroom routine and I don’t think the nurses were too excited about having to keep up with that. All of that added up to an early discharge, which was fine with us! Philip is exhausted and Leeza needed to get back into her normal schedule and needs to start building her stamina back up. She’s excited to be free, but can only walk for about 2 minutes before she’s too tired to keep going. We’re supposed to keep her pretty much in isolation for the next week so she doesn’t catch anything while her immunity is down and then we’ll go in next week to get sutures out and do a quick check with Neurology.

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Movin’ on up

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Leeza was allowed to sit up today and put pressure on her back and so far, so good! She’s totally off pain meds and seems to be doing fine and is getting back to her usual ornery self. :) She has had some trouble keeping food down and we’re still not sure what that’s all about. She continues to give the nurses fits with IVs. The sites keep getting either messed up by the antibiotics they have to give her or just won’t stay open. It sounded like they had half the hospital in there this morning trying to get a good site picked out and fixed on her. Since we can’t do our regular bowel program at the hospital yet she is on meds to help her system keep moving, but it’s making some rather messy results that keep making a mess of her incision site. Because infection is still a danger at this point every messy diaper means someone from Neurosurgery has to come up and clean her up. I expect they will be troubleshooting with us very soon to find a way to get her back to her regular program! We did ask today what shape they expected her to be in when she’s ready for discharge and we were told she should be able to be up moving pretty normally (but obviously with a lot of precautions to protect her back). I still don’t know exactly what that will look like, but I’m going to bring her walker up tomorrow so she can start trying to get up and we’ll see how the site holds up. The kids got to come up and visit for the first time today and it was good…and tiring…to see them all together again. They were all excited to see Leeza and then immediately wanted to start playing with all her new goodies, which started the sibling squabbles back up. Philip and I will (hopefully) be experts at conflict resolution by the time this gang is grown!

Leeza ended up with a roommate today and we got to see one of her friends from a previous visit who is also back. Please be praying for these little girls. They’re there for very different reasons, but it’s hard on their families and them.  We’ve prayed for a while that God would give us the chance to minister to some of the other families we meet up there and we continue to hope for those opportunities. Thank you for your continued prayers for our family…they are felt and it’s obvious that God is answering them.

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Quick Update

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Leeza was moved to a regular peds floor today, which is much more entertaining for her. She has a low fever, but it’s come down some since yesterday so no on is too worried. She was started on pretty high doses of an antibiotic just in case because the risk of infection after this surgery is one of the biggest dangers and because she has a shunt, which can also get infected. Turns out that antibiotic can be toxic to flesh and, according to Philip, it blew out her vein and swelled up her arm. The ‘antidote’ is 5 shots given simultaneously by 5 different nurses and then 5 little band aids. I’m surprised we didn’t hear her yelling all the way here at home. After more problems with IV sites they finally settled on one near her elbow so now she not only is stuck laying on her side, but she also can’t bend one arm. Hopefully a better solution can be worked out soon.

She also leaked a little bit of some fluid on her bandage and it’s unclear whether or not it was a little spinal fluid or not so she’ll have to stay on one side for 5 days instead of just 2 to make sure it doesn’t happen again. They flip her from side to side every 2 hours to prevent pressure sores, even at night, so sleep has been a little rough. Philip said they did manage to flip her and perform a whole neuro check (flashlight in her eyes, make her kick, make her squeeze their fingers) last night without her ever waking up. That’s one tired kid! Somehow Philip stills looks amazingly good. I’m going up every 2 days to bring meals for Philip and new things for her to play with. Hopefully the other kids will get to visit her for the first time on Tuesday. They understand that she had surgery, but can’t figure out why she and Daddy have to stay gone so long.

Despite all the drama today, things are going amazingly well. Leeza is on a slight sedative that makes her a little less antsy than usual and she is now allowed to eat. I hear she had a blast making some trick or treat bags tonight with some of the volunteers and another group came by with candy. A borrowed IPad is making life SO MUCH easier up there since she can’t do much but lay there. Her incision site looks really good so far and Dr. M is still hopeful that she’s gained some more function when he checked her today. Our church family has rallied around us again and is helping take care of all the little details we can’t handle right now and we have even more people praying for us. And at the end of the day, even with a tense moments, God is still in control and helping us walk through this.

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Vacation

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Leeza in HospitalOur life has been a little unconventional lately, so it stands to reason that our vacation would be as well….we’re spending it at University hospital while Leeza recovers from her surgery! She had her spine detethered today and it went great. What was expected to take 6 hours took 3 and as Dr. M came to talk to us his face reminded me of one of the kids when they know they just did something really cool. He explained that her lower spine was pretty much a mess, partially due to spina bifida and partially due to whatever procedure was done on her when she was born. As they traced up her spine they found that the spinal chord was totally unprotected from about L5 down because the bone and muscles that should have grown over them just hadn’t. She had as little as 3mm of skin covering parts of this area. I am so glad we didn’t know that beforehand! Dr. M was able to pull the muscles together over this area, use a graft, and do some creative suturing to give her about 1.5 inches of protection now. He also noticed that some of the bones in her lower back/hips had no padding and those were buffed down a little to prevent them from turning into sores later as they rubbed against her skin. The nerves were detached from the bony part of her spine and then tested to see how they were responding. When the same test had been done yesterday she had no response from most nerves, but today there was a response in a hamstring and a big toe. There’s no way of knowing now if that will correspond to increased function as she heals, but it does mean it’s possible, which is VERY exciting! She’s currently hanging out in PICU while Philip and a team of nurses try to keep her from rolling over onto her back, ripping off her bandage or pulling out her IVs. Not the most relaxing vacation, but it’s one we’re awfully glad has finally come!

Once again it was amazing to watch as God’s hand so obviously took care of this little girl. She has had so many close calls and as Dr. M was explaining that her spinal fluid and nerves were almost totally unprotected I started crying. Once again, God had kept her safe. This surgery wasn’t supposed to make anything better, but we’re coming out of it with the possibility of more nerve function. Philip has this funny feeling that one day Leeza will walk by herself and I’m beginning to wonder if she will too…not because she should be physically able to, but because God just seems to keep allowing her to do things that surprise us. I have no idea what He has in mind for Leeza, but His continued care of her is amazing to watch and keeps leaving us praising Him.

 

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All Growed Up

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Leeza - Apple Doll

Leeza and her apple doll.

Despite Grace and Leeza’s best efforts to convince me they are ‘all growed up’ and can do what they want, they are in fact still just 3 and 5. However, Leeza’s brain HAS been growing, which has been cause for much celebration around here. Over the past 2 weeks we’ve had 2 more MRIs done and the fluid on the outside of her brain is almost completely gone. The growth is obviously changing how her brain functions because she is suddenly able to remember most of her colors, shapes and even how to write most of her name…ok, so you have to be looking for it, but WE can tell she’s writing her name. It also means we’re finally back to a place where it’s safe to try to move forward with the spinal surgery. She is scheduled to have her spine detethered October 28th. Basically, the doctor will remove all the nerves that have become attached to the bony part of her spine. This won’t really improve anything, but it will stop further deterioration of her nerves every time she goes through a growth spurt, which lately seems to be every few weeks. We would really appreciate prayers over the next month as we try to get her to this surgery. She has to remain healthy and this has become increasingly difficult because she got MRSA a few weeks ago and is now a carrier. We’re doing everything in our power to prevent another outbreak, but in the end no amount of sanitizing or washing or medicine or bleach baths can keep her well. We’re just going to have to pray that if God wants her to have this surgery at this time that He will protect her.

While we’ve seen progress physically, emotionally she’s taken a few steps backward. Watching her regress is a lot like sleep training an infant who then refuses  to sleep at night anymore…we know what she’s capable of, but she won’t/can’t do it anymore. The fear of abandonment has resurfaced and, with it, the screaming fits. All I have to do is walk out of the room she’s in and it can lead to a major tantrum. Her self control and feelings of security had been doing so much better this summer, but now are returning to what we saw from her last winter. We’ve also noticed that as she and I were beginning to bond she began to sabotage our time together. None of it was a conscious choice, but it’s still incredibly effective. As I learn more about how kids respond to early neglect part of me gets frustrated and doesn’t believe all the psycho babble and that something that happened when she was 1 month old could affect her this way 5 years later, but it’s pretty obvious that she doesn’t react to things the way other kids do and then I have to admit that I don’t understand it, but I do have to learn how to help her get through it. Watching these steps backward makes me realize that all those hopes of a quick recovery, that every adoptive parent has, are misplaced. This will be a long road and it’s hard for me not knowing what that journey will look like at all. And once again I’m convicted that I’m supposed to be faithful and trust God with this journey. So I ask for prayers in this area as well…that we would be able to walk through these next few months of surgery and recovery and not get bogged down in the details, but be able to see how God loved and provided for us.

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A Blessed Mess of a Year

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This time last year Philip and I had just arrived in Ukraine to start our adoption process. A year ago Thursday we met Leeza for the first time. As I’ve been reading over some of the blog posts from last year it’s reminded me what an insane year we’ve had. In some ways it’s been our best…we’ve seen God move in ways we’ve never experience and got to be a part of something He orchestrated. In some ways it’s been our worst…at many times our lives felt upside down and I’ve been faithless and furious at God for straddling us with more than we can bear. Our pastor has been doing a serious of sermons on the Exodus and I can so clearly see how I’ve been exactly like the Israelites this year, deciding to ‘test the Lord saying, “Is the Lord among us or not?” As our pastor went through the story and compared it to other verses that showed that the Lord allowed them to go through difficult times to test their faith I could see how He’d done the same thing with us this year. And I could see how so many times I’d failed. He was faithful to do the impossible and keep Leeza alive and bring her home before she was transferred, but then I had a child who spoke no English, who screamed anytime I put her to bed or walked more than 2 feet from her and had bathroom issues so bad we couldn’t leave the house for weeks at a time and couldn’t keep her clothes or shoes on because her only mode of mobility was scooting on the floor. He was faithful to bless her with an amazing ability to learn our language, to learn to start trusting us and doctors who knew how to start healing her body and finding equipment to help her walk. Instead of realizing the provision, I’ll admit, I was consumed with doctor’s appointments that just wouldn’t stop, medications that caused more problems than they solved, fighting a stubborn streak in this little girl that turned any instruction from me into a hysterical fit and getting frustrated that she couldn’t remember anything because of the problems she was having in her brain. As we’re nearing the end of this round of tests…doctor’s appointments are fewer and sometimes we even get a week without one, medications are working pretty well right now, her self control is improving and her brain is growing…God has been good to show me how faithLESS I’ve been and how faithFUL He’s been. Over the past few weeks He’s repeatedly put this lesson before me, probably because He knows I’m slow to learn or even recognize a lesson is even happening. It’s not that I didn’t know I was wrong, I just had no idea what to do about it. No matter how hard I tried I couldn’t seem to be enough. I didn’t have enough patience to take all 4 kids to all her appointments, to deal with attitudes and defiance, to keep up with all the extra care she and other kids have required as they go through different stages. I failed daily and felt defeated. As I approached a friend recently about this she gently reminded me why we had chosen to go through this year. It wasn’t to fix Leeza or prove what great parents we were or show how much patience we could muster up…it was to fight for her soul. She wasn’t being raised to know Jesus and we had stepped out in faith to bring her home and give her every opportunity to know the Savior we know.

When that really sunk in I realized just how off-track I had gotten. I had replaced that goal with one that was never going to bring me or our family anything but frustration and exhaustion. It was incredibly humbling, but also freeing because it reminded me that I WASN’T ever going to do this alone. I was going to have to go back to relying on Jesus and His strength and to truly trusting that not only was He going to heal our family, but that He was going to give me the strength and love to raise our children in a manner that glorifies Him. I’m hesitant to say I won’t backslide because I have so many times this year, but for now I can feel His power allowing me to make the right choices. For now I can clearly see the desert of the last year and that it was put there for good reasons…to grow our faith and prepare us for whatever is next. And without the lies before me that I’ve been believing I can start to see the blessings again. I will likely (ok, definitely) spend much time down on my knees asking for grace to get through whatever has happened that day and asking to be reminded that this is a battle for 4 little souls to know their Savior. And today I will rejoice that I have an (almost) 5 year old daughter who speaks English, walks, loves her siblings, feels safe, has learned to recognize the letter ‘L’ (!), is going to school, has an amazing laugh, is beginning to learn who Jesus is and who I am learning to love as my own.

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Gettin’ Better!

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We headed over to the U today for an MRI to see what Leeza’s brain had been up to these past 7 weeks and got some good news! The fluid that we’ve been trying to get rid of around her brain has shrunk quite a bit so her body is finally kicking into gear and adjusting to the pressure change the shunt created. We had hoped to hear that Dr. M would either relieve the extra fluid at this point or be happy enough with how her brain looked to schedule the spinal surgery, but the down side of her body doing it’s job is that now he wants to wait a little longer to see if it will finish on its own. We left (not being able to see him today) with the thought that we had to wait 6 more weeks to recheck and were probably looking at surgery in December or January. I got a call later in the day, after he’d had a chance to review the scans, and he wanted to see her in closer to 3 weeks and is hoping to get her on the list for surgery in October instead…much better news for us!

Leeza also started alternative Kindergarten a couple weeks ago and is doing pretty well. She’s keeping her teacher and principal on their toes, but they’ve been great to keep trying new approaches when we realize something isn’t working. Getting her (and the rest of the class) from room to room in the school in a timely manner has been challenging because she can’t walk anywhere near as fast as anyone else. Getting the whole class in the elevator has provided some interesting stories, including one where Leeza and another child ended up being almost left in a closing elevator (no telling where she would have ended up!). Her trouble focusing and sitting still have become pretty obvious in the classroom, but we’re working with her teacher to practice some skills at home . Overall, it’s been a great experience for her so far and we’ve been so thankful for the wonderful teacher God provided for her.

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