Adopting Grace

The journey to bring our little girl home

Patrick has a family!

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For those of you who checked out the link on the last post you read about Patrick, the little boy who needed a family so badly. I just heard this morning that a family has committed to him. They will have a long road ahead of them before they’ll get to bring him home, but he will eventually get to go home instead of being sent to a mental institution. Thank you to all who prayed and please remember him as his family works to bring him home!

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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

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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.’

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Jonah Almost Has A Family

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Here’s the update on Jonah…

 

Jonah’s family is ONE STEP CLOSER to Jonah.
Today they were in the Capital city and had their SDA meeting.
Tomorrow they get a piece of paper (referral) which gives them the right to visit Jonah and commit to him.
In just a few days they will have the unbelievable privilege of taking him in their arms – this child they have watched and come to love over the last number of weeks – they will get to take him into their arms and whisper in his ears that he is their son.
I wish I could be there to take pictures of that moment.
Sigh.

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Gage is Almost Home

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Some of you might remember Gage, who we met at Leeza’s orphanage. He is a pretty impressive little guy who seemed to stand out to every family who met him. After some drama with his committed family not being able to finish his adoption and another family stepping up at the last minute, Gage is just weeks away from going home. As of this week he is now Ethan Ruslan DeVowe. His parents will return home for a couple weeks during the waiting period and return to bring him home to a house full of excited siblings! You can check out their blog at http://hebrewselevevone.blogspot.com/2011/06/ethan-ruslan-devowe.html.

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Jonah Update

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I’ve been watching my computer like crazy for news of Jonah all weekend and just found out from Julia (the friend who originally wrote about him asking for prayers) that the US gov’t had OK’ed the family for 2 kids instead of just one on Thursday. Unless you’ve been through the paperwork of an adoption you have no idea how amazing it is that this change could be made this fast. It is truly an answer to prayer! What we don’t know is how fast that paperwork was able to make it across the ocean and how fast that gov’t will process it. So please keep praying for God’s will in this process.

Thanks!

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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!

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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.

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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!

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6 months

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Leeza’s been home with us for 6 months today. She’s come a long way (and so have we) and she still has a long way to go (and so do we).

She had another MRI scan Wednesday and there was no positive change. Because her brain isn’t growing the doctor is having to allow her ventricles to enlarge again to fill up the space so we can get rid of the fluid that’s surrounding her brain. Her surgery for May has been postponed until her brain grows and stabilizes and there’s no telling how long that will be. We’ll go back in in 2 weeks to do the whole process over again. We’re getting quite a collection of MRI ear plugs here at the house.

After seeing her MRIs I suppose I shouldn’t be surprised when we have conversations like this:

(after being in time out for whining)

Me: Leeza, can you tell me why you were in timeout?

Leeza: Ummm…Jesus?

Me: No, Leeza, I’m asking why you were in timeout.

Leeza: Spank?

Me: No, you didn’t have a spank. What did you do to go to timeout?

Leeza: Daddy?

Me: Leeza, do you have any idea what I’m talking about?

Leeza: Gracie?

Me: Never mind. You can go play.

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