Adopting Grace

The journey to bring our little girl home

Browsing Posts in The Process

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.

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.

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.

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.

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 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.

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.

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!

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.