Expecting the unexpected

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Can life get better?!!! Right after we found out that Raymond had a family, we got word that a donor had dropped several thousand dollars into Aubree’s account! Aubree is another one of “my kids” (orphans with AMC who we advocate for). Aubree now has $15,000 in her account!!!!!! WOW!!!!!!!!!!!!!! And since that money went into her grant I’ve had two moms ask me what would be involved in adopting her and that they were praying about it! Of course they are far from committing, but the financial burden being lessened is really opening up doors for Aubree who has about a year left before she’s ineligible for adoption. Whoever you are, thank you thank you thank you for giving to Aubree!

So many people ask us why we aren’t adopting all these kids we advocate for. Let me just say that if I *could* there are FIVE kids with AMC who I would adopt in a heartbeat (not an arbitrary number, three are in China, two in Ukraine). Our experience adopting our son with AMC has been one of the best things that has ever happened to us. I say all the time that I would adopt ten more Rolands. But in reality it would be closer to 20 or 30. ;) They would absolutely trash my house, but it would be worth it. :) But our lives are heading in a different direction. Several months ago we went to a Resource Parent Orientation. A week later we made the decision to apply to become foster parents. Our focus will be on reunification with birth parents (aka we’re not in this specifically to adopt again). And our social worker will be helping us care for children who will be a good match with our own children and their needs and vulnerabilities.

Three days after returning from Laelia’s last surgery we started foster parent training classes. (And if you read the last blog you know that was not a stress-free time for us.) Hubby’s classes are in the evenings after work and my classes are 6.5 hours long on Saturdays. Except for this Saturday because the kids and I are flying up north to see my cousin Nate!

Nate has done two tours in Iraq, been the subject of the HBO documentary “Shell Shock,” and spent the last several years in prison for holding a gun to a cab driver’s head when he was having a PTSD flashback. (The cab driver was Iranian and part of Nate’s job in Iraq was to do this very thing. He thought he was there.) No one was hurt at all, and they found Nate crying and completely confused at what had happened when he realized he was still here in San Diego. But no treatment was offered and the presence of a gun meant automatic prison time so he took a plea deal. He was just released Sunday. He hasn’t seen Laelia since she was a tiny thing. She hardly remembers him but she’ll see him again tomorrow afternoon. We fly out early in the morning. After doing the cross country trip from hell two weeks ago, this trip will be easy, even if I am going alone with the kids.

And after we get home from this trip we wait three more weeks and have our lives upended yet again.

Here’s the story: Two days before Laelia’s surgery we had an appointment with Dr. van Bosse to see the kids. While in the waiting room (with several other AMC families) we discovered that the upper extremities doctor, Dr. Zlotolow (we call him Dr. Z), was leaving for the day and we had forgotten to actually set up an appointment with him. We needed him to look at Roland’s elbows as we had just finished up the second round of serial casting. Thankfully he agreed to see us before he went home. He vasillated between recommending the surgery and recommending waiting. Roland’s arms look pretty good: one is at 75 degrees and the other around 90. Finally Dr. Z made the decision to keep an eye on Roland’s arms and put off any surgeries. We got a prescription for two elbow splints which work really well. I know we’ve gained ROM (range of motion) on his elbows just from stretches and these wonderful splints alone. Will he have that elbow release surgery in the future? Who knows. So far he hasn’t had a single surgery. Lucky duckie.

But we really didn’t expect the doctor to look twice at Laelia’s arms. Blessed with excellent passive ROM from us stretching her since birth she doesn’t qualify for any of the usual AMC-related arm surgeries. She also lacks the muscle for a muscle transfer. So we were very surprised when he showed us plain as the noses on our faces that she needed arm surgery to assist with feeding herself. In every picture I have of her I’m now noticing how much her arms are rotated. If you try to put your own arms into that position you’ll realize how awkward that feels. Here’s one example in a picture.

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Laelia’s hanging arms are twisted inwards with palms out.

What will fix that is derotational osteotomies (cutting the bones and rotating them). The same thing they did to her legs when she was three, only this time with her arms. If successful it will help her with reaching her mouth and holding a ball. If REALLY successful it will help her to clap her hands together. (Right now she claps the back of her hands together.)

So when is this major surgery happening? April 1st. Not an April Fools joke this time. (Although everyone will probably think so based on my track record.) She will not be able to use her arms for six weeks after that. She will not be able to walk since falling (which happens) would have dire consequences on those healing bones. She will not be able to write, play on the iPad, feed herself, etc. For all practical reasons she’ll be a quadriplegic. She’ll need constant care and supervision. And we thought this last trip to Philly would be the last one we would have for a long time. Boy were we wrong. Two more trips in April alone. Big time recovery. More stress.

Another complication recently has been with our insurance company. They are refusing to cover Laelia’s leg braces. So she STILL doesn’t have them, and it looks unlikely that she will get them before the next surgery where she won’t be able to walk. I can’t tell you how awful it is that she went through a leg surgery and now doesn’t have the needed braces! The old ones don’t fit anymore and they are hurting her. The CA doctor (more accurately his nurse) I sent the prescription to messed up big time. The orthotist tried to get them made and our insurance told them they would not be covered.

Long story short our only recourse if we don’t want Laelia’s legs to atrophy after surgery (where they stressed the importance of PT and correct leg braces for recovery) is to have them made by the same people who were so incompetent when Laelia was a baby that we fired them. And it is taking forever!!!

Laelia has huge “balls” on the bottom of her feet so we could not have her braces made in Philly as they require many many adjustments as the giant sores move and the braces are always needing to be repadded. Laelia’s feet are also starting to reclub. Ugggggggggggggh. Reminds me of this thing I saw on Facebook: “When someone asks you ‘What would Jesus do?’ remember, a valid option is to freak out and turn over tables.” Author unknown.

Yeah, I’m about there emotionally.

 

I’m going to end this post on a happy note: random pictures of my cute kids!

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Laelia’s trying on a wig.

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Laelia seeing her first ever movie in a real theater: Frozen

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He always steals my oven mits. :)

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Roland found and destroyed an entire roll of wrapping paper.

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In-N-Out philosopher

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Swing outside Children’s museum

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Roland hiding from the doctor for his appointment

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Tired Roland is tired.

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Don’t let Roland drive the bus!

 

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