Adopting Grace

The journey to bring our little girl home

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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.

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.

 

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.

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.

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.

2 Stories

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We’re enjoying our summer…getting the kids out as much as possible, swimming, wearing flip flops and using the heat as an excuse to eat a little more ice cream than usual. We’re in the process of getting Leeza fit for twister cables, which would help keep her legs facing forward, and trying to figure out why she seems to be overheating so easily, but for the most part we’re in a slow period as far as medical appointments. The real purpose of this post is to re-post something from a friends’ blog. Julia has done a wonderful job of advocating for other kids and families since bringing her son home last summer and this is one of those posts that needs to be read by as many as possible. There is one little boy who desperately needs a family and another who will soon be leaving his…both of them need our prayers and for the body of Christ to come along side them during this time. Please take a few minutes to check out Julia’s blog at

http://covenantbuilders.blogspot.com/2011/07/not-abandoned.html

Hospital Day

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We just spent another day hangin’ out at the University Hospital, making our rounds to all the departments Leeza needed to see today. Here’s what we found out…

Orthopaedics: As amazing as it seems, we are not hurting her joints when we can’t keep her in her full leg braces. Despite the fact that she can literally walk on the tops of her feet or spin her right leg 180 degrees backward (and never realize it), it’s not causing damage at this point because she’s so little. As she gains weight that will change, but for now it’s a relief. We are going to try a new leg brace system that is more rigid and will connect to her ankle braces, which is supposed to be much faster to get on than her Theratogs. We were also warned that when she’s about 7 or 8 we will likely be looking at major leg surgery that would break the leg bones and reset them so they rotate out like they should instead of allowing her legs to turn inward. Sounds horrible, but apparently it’s fairly common for kids like her and will reduce the need for leg braces as a adult. At that point she’ll also have built up enough strength to figure out what type of equipment she will likely use as an adult (walker, wheelchair or motor wheelchair).

Pediatric Specialist: We’re reworking the bowel program and trying some new meds. We have a few meds we can try to see how her system reacts before we have to move on to more invasive procedures. A J tube is still a possiblity in the future, but not until after her spinal surgery.

Neurology: The right side of her brain has no external fluid!!! It did as of 2 weeks ago. We’ve been waiting for this fluid to drain for months and suddenly it disappeared for no apparent reason. The left side still has fluid, but has also improved a little. We’re going to give her 6 more weeks to see if the left side takes care of itself. If it doesn’t, she’ll have a hole drilled to drain the fluid, we’ll wait a bit to let the brain reattach to the skull (it’s pulled away because of all of the fluid) and then we should be in a place to have the spinal surgery to detether her spinal nerves. Dr. M is sure we’ll be able to get to that sometime this year, which was very encouraging.

All in all it was a very productive day. Since we didn’t have other kids to keep up with we could walk slower and let Leeza push her herself in the wheelchair. She did really well and throughly enjoyed everyone stopping her to tell her how cool her pink chair with the flashing wheels was…and of course all the usual comments about ‘all the curly hair.’

Jonah and the Zoo

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This was posted on a friends blog this week.

http://covenantbuilders.blogspot.com/2011/06/story-time.html

It’s a great story and this family really needs prayer right now. They are in country and waiting for a miracle to happen so they can bring little Jonah home. Please be praying for them!

In news from the home front, Leeza’s wheelchair is here!!! I can’t tell you how relieved we are to finally have it. She still uses her walkers most of the time, but long distances are just too hard right now. And it came just in time because we had been invited to the DesMoines zoo for a Dreamnight, a time set aside especially for kids who spend a significant amount of time at the U with chronic and fatal illnesses. We had a wonderful time and I was a little caught off guard by how great it felt to be around other families who have children with challenges that most people never have to think about. It was the first time since we became a family of 6 that I felt like we were normal and it was a relief. We were a little concerned how Leeza would do around the animals since she’s basically terrified of ALL animals. We’d spent the last 3 weeks studying animals she would see and making our own pretend zoo here at the house. She did great! She’s still deathly afraid of every dog, cat, squirrel and bird that gets close to us, but animals in enclosures were fascinating to her. I’m going to count that as a step in the right direction!

Walking!

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As of last week, Leeza is officially a walker! We got her new outside walker that allows her to maneuver pretty easily on uneven ground and moves so quickly that she can almost jog in it when she really gets going. After a short conversation with her physical therapist we decided if we were going to expect her to walk as an adult now was the time to enforce that she’s a walker…not a scooter. Except for quiet time each afternoon she uses a walker all the time and it’s been amazing how much stronger she’s getting with all that practice. Her core muscles are so much sturdier (no more falling over all the time) and she’s suddenly become aware of her feet and where they are some of the time. Because she can’t feel them and hasn’t used them most of her life, this is a pretty big deal! She is not always aware of where her WALKER is so our walls and shins are taking quite a beating, but hopefully that will get better with practice. All this walking means she has to wear her Theratogs (hideous velcro therapy torture to position her legs) almost all the time. I used to cry every time we had to put those things on because they are so confusing, but I’ve gotten to were I can get them on her about 5 minutes. Thankfully, Leeza doesn’t really seem to mind them. At our last PT appointment her therapist was amazed at how much progress she’d made in the last month and we rejoiced when we realized the contractures in her leg muscles had stretched out enough that she is in the ‘normal’ range for someone in her condition, which allows her to stand up straighter.

After a couple days of enforced walking Leeza did finally ask me why she couldn’t scoot anymore. I asked her if she wanted to scoot when she was a mama and she got a horrified look on her face and told me she wanted to cook when she was a mama. I told her she had to stand up to cook and she informed me, ‘I stand and I COOK!’ The kid is motivated.

We have friends who are going back to Leeza’s orphanage to adopt a second child in just a few days and we’re hoping to get a video together to show the doctor and therapist who worked so hard with her to keep her healthy. They had told her she had to stay strong so she could learn to walk some day and she apparently believed them because she’s never really doubted that she would. I wonder how often they ever get to hear what happens to the kids they work with and Philip and I both wish we could see their faces when they get to see Leeza running around her front yard like everyone else.

Please check out our friends’ blog at http://hebrewselevevone.blogspot.com. They are a truly remarkable family and are adopting Gage, who we blogged about months ago, and just brought home Madeline a few months ago. They are a wonderful example of trusting Jesus and I’m sure they would appreciate your prayers as they go through the process of bringing Gage home.

Balance

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It’s been another busy week around here. Philip was traveling and got stuck in the middle of the tornadoes down south, Leeza started preschool and we had a University day. Philip is (thankfully!) safe and home, Leeza LOVED school and we were told not to come back to the U for 2 months. We’re letting Leeza finish the last 3 weeks of the school year up at the local preschool so we can all get a better idea of what she can do and what kind of assistance she might need next year. We attempted to write up an IEP (individual education plan) for her a couple weeks ago with the principal, teachers, therapists and district reps and basically we decided we couldn’t do much until they could really see her. One of our biggest hopes was that she would be able to receive some of her therapies through the school district and I was told at this meeting that she didn’t qualify for that. I suppose one of our prayer requests would be that after this time with Leeza they will reconsider this decision. In the meantime, Leeza is enjoying her class and looks forward to going each day. When I ask her what she did at school each morning she always tells me what they ate for snack. That’s it. If I had to guess right now I would say that her future career will have something to do with either food or clothes. We’re also requiring her to use her walker at school and only allowing a limited amount of scooting around. She has to work really hard to keep up with the other kids, but it’s a great work out for her and will really strengthen her leg and core muscles.

Her last MRI scan showed that the ventricles are continuing to close some (which is good), but that her brain still isn’t growing (not good). That means that the fluid around her brain isn’t going anywhere. Dr. M said we could either give her a couple months and see if her body kicks into gear or drill a couple of holes in her skull and drain the fluid off that way. The wait-and-see approach seemed to make more sense at this point so we don’t have to go back to the U until June!!! We’re also choosing to space out her physical therapy sessions and have opted not to schedule a few recommended, but not urgent, appointments with other doctors. We haven’t had a week since December that didn’t include multiple Leeza appointments and we’re realizing the need for a more balanced approach to her care. I think by mid-May we may hit our goal of a completely appointment-free week!