Archive for the 'hooray' Category

Different Like Me is (finally) here!

Thursday, October 2nd, 2014

It was a two-year process, but Different Like Me is finally published!

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To find out about that trip you can order a copy from Amazon here. All proceeds go to support orphans with arthrogryposis who need adopted, and other kids with arthrogryposis (not my own) who have equipment needs.

Birthday girl, Laelia, walking without braces!

Thursday, October 2nd, 2014

First off, HAPPY BIRTHDAY LAELIA!!! She turns 7 years old tomorrow! Here’s the birthday video I did for her last year documenting the years it took her to learn to walk.

Well now we’re doing this walking thing even better!!!

I need to preface these million videos with a few comments. First off, we didn’t think Laelia would ever be able to take steps without her braces. And there was much doubt in the medical community if she would ever take a single step, so ambulating with braces is still a miracle. But without braces? I didn’t really think it was possible. There’s only so many years of trying and failing before you assume she’s just missing those muscles. My hope, truthfully, was in some not-yet invented robotic.

Laelia largely directs her own physical therapy now, so when she showed a bit of trepidatious interest in walking with her KAFOs (full leg braces) unlocked at the knees we of course tried it. And lo and behold she got pretty good at it! Then we decided to try GRAFOs which are ground-reaction AFOs that cover much less of her legs requiring her to do a lot more work. (Dr. vanBosse in Philly had suggested these.) This led to the four month battle with our insurance that still haunts me, but we got them! She was super wobbly her first try in the physical therpist’s office, but she did great!

Next came walking in GRAFOs all by herself using crutches. “Stand back, Mom!”

Then getting so good at it she could go down the ramp and lift her crutches off the ground!

Then one day during physical therapy at home she just shed those crutches all together!

A few days later she was walking like she’d been in GRAFOs all her life!

So we decided, why not? Let’s try walking with NO BRACES! The crutches came back out for balance and she did it!

Then we moved up to walking in just her socks! Not even shoes on!

Then two steps all by herself without a walker!

Then four!!!!!!!!

Then she just held my hand and walked all over the place in nothing but socks! (Had to cover up our foster kid’s face in this one.)

And finally just once (she hasn’t been able to do it since, mostly because of her leg length difference) she walked across the room in nothing but socks while holding on to NOTHING.
(Sorry about the white box, but it’s the only video I have!)

We have so much hope for the future! I think she’ll be walking even better as she gets older! So exciting!!!

I wrote a Children’s book!

Sunday, June 1st, 2014

AlexisBook I wrote a Children’s book! It’s not yet published. If you would like updates about it, or information on how to order it once it becomes available, please join our Facebook group by going here!

Different Like Me is a book about a little girl with arthrogryposis who goes on a grand adventure across the ocean to meet her little brother! Well, if you follow this blog, you already know the story. But you’ve never seen it quite like this! With 25 fully illustrated pages of pure delight your kids will love it! (Oh, wow, I sound like an ad. LOL)

For all of those people who asked me to write a book. THERE! It’s just 25 pages written at a 2nd grader level, but that’s pretty much all I could manage. :)

It was wonderfully brought to life by Lauren Burke from Hey Hey Designs. She does work for blogs and ads and so much more!

This whole project has taken over 18 months to complete, but it has been well worth the effort just to see Roland joyfully freak out every time he sees himself or his sister in cartoon form. :)

Finally a book they love that breaks up the hours and hours and hours of Mo Willems material that gets devoured in our home!

Proceeds will go to support the medical needs of AMC kids (ones not living under my roof :)), orphans with AMC and the families adopting them, and hopefully, if we sell enough, AMCSI!

Also, and foremost, this will promote arthrogryposis awareness! (Or Hall’s Contractures! Or what I’ve been calling it lately just to dumb it down: Multiple Fixed Joints.) Awareness is my main goal, and something I believe in since we need awareness to receive funding, research, insurance approvals, a place at the table, etc.

I have broken up the word arth-ro-gry-po-sis and tested it on six year olds who can now pronounce it! So the hope is that this word becomes easier to say! Laelia and her peers read it fine, even with the big arthrogrywhatsis word in there! In the beginning of the year when Laelia’s reading tutor, Danielle, would come over, she would bring strips of paper with big medical or scientific words on them. Laelia got to keep the strips if she said the word correctly, which was hugely motivating. It was amazing what giant words she could then pronounce once they were read one syllable at a time! Like lepidopterist! It’s lep-i-dop-ter-ist, a.k.a. butterfly scientist! Even my brain goes to mush looking at lepidopterist, but I calm down when it’s lep-i-dop-ter-ist. :)

Please feel free to share our Facebook group far and wide! Thank you!

Expecting the unexpected

Friday, March 7th, 2014

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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!

 

AMC Mini Meet Up and Day Before Surgery

Sunday, October 6th, 2013

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Face painting by Madison

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Laelia, Roland and their friends

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AMC only picture

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Barbara

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Big accessible playground and Rolly just wants the toy cars

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Willow was yelling at him, it was adorable

Well I thought I had a bunch more pictures, but I don’t. Anyone with pictures send them my way and I’ll probably get them next week! We had a lot of fun and the kids really enjoy seeing other people like them. They do not, however, enjoy the five hours in the car. Laelia was good, Roland was a crazy screaming monkey pants. He especially hated when I sang along with the radio. :) I told him I feed on his displeasure. Yummy yum yum yummy yum.

Roland for the first solid 30 minutes in the car: “Mama doing? Doing Mama? Mama? Mama doing? Doing? Doing?”

Roland after 30 minutes in a car: “No Mama! Noooooo! Noooooooo! No Mama! NO!”

Me: “What do you want Roland?”

Roland: “Out.”

When we had the ocean in view I said to my husband, “The ocean, she calls to me.”
He replied: “If the ocean is saying, ‘Mama doing? Mama doing?’ I’m hearing it too, and I don’t think that’s the ocean.”

Oh and another funny story. While we were out I asked my dad to plant this one tree out of the ten trees in the front. There was this pipe in the way so I hadn’t gotten around to breaking up the pipe. It was old, was only six inches under the soil so it wasn’t important. And it already had holes in it so it hadn’t obviously been used for a while. Well guess what. Yep, he broke right through that pipe. (Yay!) Which had cables in it. (Uh oh.) Which took out all the cable and Internet access for us and our neighbors. (Boo.) A guy from Time Warner came out (today, Sunday, a few hours after the incident) to figure out what the heck happened. Dad handed him the pipe and asked, “This one yours?” Yep. So they dug up the pipe and put a temp fix on it.

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So my tree still isn’t planted and they may have to rip through the rest of my trees to bury the cables deeper. Ugh. We saved up forever to buy these darn trees and it took tons of work to level that area with a shovel and plant them. They are the only plants I haven’t killed too. It makes me want to cry. Save the trees! No Internet for anyone! :)

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Oh and we have great news! Yesterday Grandpa installed a new toilet that is several inches lower than a normal toilet and a bidet for it too! Now Laelia can get on the toilet ALL BY HERSELF!!! For the first time in her life. And that bidet makes her laugh hysterically every time. :)

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The blue and pink thing is six phone books duct taped together. The adaptive PE teacher made that for her. She can get on the toilet herself only when using that to step up.

Seriously she learned this trick two days before I have a surgery where I won’t be able to lift her onto the potty for weeks. Her timing is not my timing, but I’m so thankful she did it. And this will really help me care for her after I recover a bit.

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And Grandpa is also building a ramp to get to the garage. It will get done after I go to the hospital so my only picture is of boards lying around. This is the last space in our home that’s not accessible. I don’t know what the kids would do in the garage, but now they’ll be able to get to it. Maybe I’ll make them sweep it. :)

Well I just drank an entire bottle of laxative. So I need to… um… go… now.

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Surgery tomorrow!

I’m ready!

Double Birthday Fun!

Saturday, October 5th, 2013

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Laelia cut her own hair.

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And the lady at Supercuts evened it out for her birthday. (It’s short, y’all.)

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Grandpa and Grandma drove the ten hours down to stay with us for a couple weeks.

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They wear the kids out. :)

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And they bake the kids cakes!

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Hand-decorated by Grandma

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Birthday hair band

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On the go!

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Wink

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“It’s my party and I’ll cry if I want to.” Whiny boy was cold. Mama didn’t mind all the cuddles to warm him up.

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Presents!

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More presents!

Tomorrow we drive up to LA for the AMC mini meet up! Can’t wait to see all our AMC friends!

These last several days were nuts. In the the last 12 days and next two we had/will have:

1 ministry fair
1 major all-day metabolics clinic we waited 8 weeks to do, with testing
2 visits to the orthotist
1 battle with insurance over a shoe lift
2 school meetings for Roland since he no longer qualifies for Head Start because of his diagnosis and we have to transfer him
1 meeting with regional center (2 hour psych eval for Roland, he’s now testing at 26 months old, he’s three)
1 wedding
2 trips to AWANA with verses memorized
2 ball games (Miracle League) for Laelia
Cleaning the house for 3 visitors coming to stay with us
1 blood draw and doctor’s appointment
3 special writing projects
1 trip to Laelia’s school for her citizenship award
2 trips to Sharp to meet with doctors
1 Compassion Int. conference where we worked the booth
1 AMC meetup in LA
1 double birthday party for both my kids
2 orphan blogs due on the first
1 giant fundraiser with multiple vendors that I’m organizing

And of course my surgery is Monday. I’m donating my kidney to a stranger same as my hubby did a year and a half ago. Kids will hang with their grandparents while I’m recovering the next couple weeks.

Then naps for everyone!

Video of Laelia

Monday, September 16th, 2013

I created this video of Laelia learning to walk as a present for her 6th birthday. I used all of the videos I had of her where she is moving her lower limbs. And let me just say that there were not many videos of her even moving her lower half for the whole first year there, despite daily physical therapy and stretching. Wow, it’s amazing how far she’s come and how hard she worked. Laelia’s birthday party isn’t for a couple of weeks yet, but tonight she caught me editing, saw it was videos of her and then squealed and demanded to see it. (By the way this is my first video editing job EVER and it was really hard and I cussed a lot and now I hate technology.) So the cat’s out of the bag and I’m just going to make it public.

Enjoy.

First day of school!

Friday, September 6th, 2013

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First day of 1st grade and first day of preschool WITH bus service!!!

(How dare this girl be in 1st grade!!! She was in newborn diapers yesterday! And didn’t we just bring home Roland from the orphanage ten minutes ago??? Not right!!!)

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After so many weeks of wanting to ride the bus, little Rolly was doubtful this would happen.

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When the first bus arrived they started cheering!

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It was for Laelia. This marks the very first time our bus service has worked out correctly on the first day of school. For preschool the bus never came and we ended up fighting them for a while until they realized we were NOT backing down and gave us a bus. For kindergarten the bus took Laelia to the wrong school while both Charley and I drove to the correct school and then went crazy looking for her.

But today with the same bus service nothing went wrong! Well except for Roland cried when Laelia left. I should have known that would happen. He wanted to ride the bus with her. “No bus! Ba back! (Come back) No! Waywe-a! (Laelia) Ba back Waywe-a! Bus! Boo (school) bus! Boo bus!! No mama no!”

Yeah after 15 minutes of that, his own bus showed up.

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Roland’s bus driver strapped his car seat in. (Yes still pink. By the time he’s in college we’ll get him a blue one.)

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Actually I was really worried. Roland went blank. I asked if he liked his school bus that he’d been begging for all summer and he didn’t say anything or give eye contact. He did not understand when I got off the bus without him and I watched his blank expression as he drove away. I was getting flashbacks of his trauma coming out of the orphanage.

But his daddy was waiting for him when the bus pulled into his school. Charley called me right away and reported that Roland saw him and was all smiles and happy to be back in his classroom. Then he chittered endlessly about his school bus adventure in Rolly language. He gets bus service two days a week and he has school for only three hours in the morning so it’s not too much for him.

After I put Roland on the bus I shot over to Laelia’s school for orientation. I met her teacher and aide and gave them all the usual warnings. ;) Laelia clung to me doing her “fake shy” thing. But two seconds later she was in the swing of things. We even decided not to bring her walking sticks this year and see how it goes!

The only sad part was when Roland came back home on his bus all smiles and then went through the whole house looking for his sister who has three or so more hours of school a day. He asked maybe three thousand times, “Waywe-a where?”

When Laelia finally got home she was sound asleep on the bus (as usual) and Roland screamed his hellows so forcefully and so jubilantly that she woke up. Then they hugged a lot and two minutes later they were fighting over something. 0_O

Love these kids.

And these kids love school.

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Videos!

Tuesday, June 18th, 2013

Here’s Roland standing up by himself (using the wall) for the first time ever!!!

Here’s Roland riding a bike for the first time ever!!!

I usually get to sleep in on Saturday. This was my wake up song. (Roland only knows two letters: B and Y.)

Which quickly de-evolved into this. My kids are insane.

Laelia climbs down by herself!

Sunday, June 2nd, 2013

Tonight as I left Laelia to brush her teeth and wash her face (and then prayed she wouldn’t just goof off the whole time as usual) I sat down exhausted and caught up on some email. Roland came toddling in and said to me, “Lay lee la down.” He looked back towards the bathroom and then looked at me expectantly. “Yes Laelia is brushing her teeth and I’ll put you both down for bed soon,” I said absently. He said, “Kay,” and walked away. A second later he came back, “Ba da da! Na down!” He really is trying to communicate something, and usually I would get up and take his hand and he’d walk me somewhere and show me what he wants, but it’s the end of the night and I’m tired so I just say, “Okay Roland wait a minute,” and go back to reading. A third time Roland says urgently, “Down Mama! Down da Mama! Layla!” I am only catching the “down” part clearly so I ask him if he wants to sit down and he says no. I ask him if he wants his doggy to come down off the piano where hubby had placed it. Roland says no and then thinks about it and in a cute little voice says, “Ummmmmmmm. Da.” (Da=Russian for yes) Okay then, “I’ll get your doggy down before bed, but let me finish these first.”

A second later Laelia says with a big grin, “Hi Mama!” And my mouth says, “Where did you come from?!!” Before my brain realizes that all those Roland warnings were about Laelia attempting to get down from a very tall chair all by herself and unsupervised.

Now don’t get me wrong, we had been practicing this. But she had never shown an interest in trying it without a lot of motherly hovering.

Plus this had happened the night before so it’s not like I had a lot of confidence. ;)

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I don’t know if she is really stuck or if she just wanted some attention. :)

So getting off a chair without bending your knees is a very hard thing to do. (Remember Laelia has a bit longer in the straight leg braces that do not bend before her plates come out and she can bend her knees again.) And how she does it is totally impressive! She grabbed her daddy and me to show us exactly what she did. This video is the second time she’s ever done it independently.