Archive for the 'pain' Category

Hard times are rare, but unusually hard

Thursday, February 27th, 2014

 

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So I never blog anymore. Mostly because I’m living more adventures than I have time to write out.

The last two weeks have been nutso. But even though I started this blog to write out my hard times and get perspective, I’m writing today with great news!

Raymond has a family! A family! A family! Raymond has a family! Tra la la la la!

Raymond is this guy, an orphan on Reece’s Rainbow, and I’ve been advocating for him for about three years. He was the focus of Bring Hope, a blog I co-author. He was the focus of Grafted Branch, a .org my husband and I run. He’s been the focus of many blogs of mine. He has also had a spot on the sidebar of this blog for many years. He’s there now. :)

One of my friends wrote to tell me that she and her husband were interested in adopting Raymond out of that orphanage he’s in, but a lot of logistics were in the way. I thought they would be the perfect family for him, but I’ve had people interested in my other kids I advocate for and the majority of the time it doesn’t work out for various reasons. But they worked out their logistics and committed to Raymond! (Stacy you are the best mom ever! So excited for you!)

And that has nothing to do with me, but it changed the direction I was heading in. I had stopped praying several months back. I’d send up an occasional weak prayer, but it was empty. So hard to pray when you know that little boy is wasting away month after month with no end in sight and we can’t adopt him right now. I had felt this complete disconnect. And Raymond’s circumstances had a lot to do with that. The morning I received the news from several friends (who get up before I do) that Raymond had a family was the first day I was able to pray again. I was praying and crying as I emailed Stacy to ask if it was her (it was). I just gushed out my thankfulness to God for this one little life soon to be saved.

Life has been hard the last weeks for our family. Unusually so.

Laelia had her 8 plate removal surgery on February 12th. This was suppose to be a). an easy surgery and b). her last big surgery for a while. Neither would end up being true. The whole family flew to Philly since Roland also had his appointment. (He’s looking at 8 plate and external fixator surgery about a year and a half from now.) During Laelia’s surgery while we were playing with Roland on the 6th floor I got a call that they couldn’t bend Laelia’s legs once the plates were removed. That wasn’t good. So they wanted permission to put a pain block in and do a more aggressive surgery. I ran to the 3rd floor to sign the paperwork. They did several releases in her thighs to get those knees bent. It wasn’t that successful and it made recovery a bit harder. When she woke up she had troubles breathing which is rare for her. I spent the whole day bent over her until my back was sore. That night my huband stayed the night and I took Roland back to the Ronald McDonald House where we finally (after being turned away to a hotel initially) got to stay.

Then a blizzard hit.

Public transportation was down, roads were closed… It was one of the most stressful things I’ve ever gone through–being five minutes down the road from my post-op baby and no way to physically get to her. Finally, after taking great pity on me, the staff at RMDH got James, their shuttle driver, to make a trip once it was safe. It turned out a family at the hospital were desperate to get back and I was desperate to get there so he’d make that one trip. Then we’d be stuck at the hospital indefinitely. Well long story short, the family desperate to get back was my family, Charles and Laelia. The hospital worked out an early discharge and they were on their way. (If they hadn’t figured out we were the same family it would have been terrible to have swapped positions but still be separated!) Laelia was sore and cold but once she was back in my arms she was going to be okay. Another storm was coming, but we could beat it and fly out before it hit. So that was the plan but the night before our flight home she threw up all that night. Then she threw up 12 times on our planes home. We thought it was from the anesthesia, but it turned out to be a virus that had broken out in the hospital. So after two days with no sleep and a cross-country experience I’ll never forget we got a ride home (thanks Debra!) and then got in our car and drove straight to the ER. Laelia threw up violently in the ER parking garage. But they put her on some meds and that was the last time she got that sick.

Until my husband started throwing up.

And then I got a really bad cold and I couldn’t breath, but throwing up trumps a bad cold so I was still the single parent and taking care of my husband.  But my cold was awful and the sinus headaches kept me from sleeping. When Laelia was done throwing up she had lots of complains about potty time. Turns out she had a bladder infection, which involved another doctor and another medication in the middle of everything. So she’s been sleeping with a towel under her at night because the bladder infection makes her feel like she has to go all the time.

So I was putting that darn towel under my daughter and stupid me decided to just pick her up and move her onto it… while bent over her… while twisted a funny way. I blame the complete lack of sleep for my idiotic move there. She weighs like 50 pounds of dead weight by the way. Yeah I completely threw out my back… which not only kept me up all night in pain, but required two out-of-pocket trips to the chiropractor and put me out of commission for things like dishes, doing the kids’ stretches, walking, bending over, etc. That put a lot of strain on my husband for several days. And just when my back felt better I got another different cold, this one with mucus. Seriously.

So that’s where we’ve been. In Stressville. So why am I smiling like a crazy person and jumping (awkwardly because of my back) for joy? Because Raymond has a family coming for him. I have a major headache while my son is shaking a bottle of Tylenol right by my head like a maraca. And Raymond has a family. I’m coughing so hard I accidentally peed. But Raymond has a family. I leaned over to grab a toy off the ground and was not able to stand up again. Well, Raymond has a family. I haven’t slept in weeks. But Raymond will soon have a safe place to sleep under the roof of his family. My hair looks like this.

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But Raymond has a family. ;)

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Raymond

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Flying to Philly

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Laelia and Roland at the RMDH

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Roland’s friend Luke at RMDH (whom Roland calls “Mylukey”)

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The Please Touch museum in Philly

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Motorcycle at the museum

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Bakery at museum

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Hospital at museum where Laelia had the most correct medical knowledge and vocab of any of the kids there.

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Waking up after not much sleep (it was 3am our time) for Laelia’s early morning surgery.

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Waiting for surgery

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Roland waiting for surgery… in the toy room :)

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Going into surgery

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Laelia waking up from surgery looking like she has princess hair. My daughter is magic.

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Snow plows excited my son like nothing else.

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Snowpocalypse!

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Back at the RMDH after surgery

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Mean mommy made Laelia do the required homework.

The next day was Valentine’s Day. These are the cards I got:
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Yeah, Roland wrote his to the bus. :-/

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While we were snowed in Roland and I took down the snow decorations and put up Valentine’s day ones.

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We hated snow at this point. Trash it, Son!

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Laelia standing that night without braces! (Later that night she started to throw up.)

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Flying home while sick was hell.

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Laelia at the ER here in San Diego. She’s still wearing her flight wings.

 

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.

Grief and pain and brokenness–confessions of a mom

Monday, March 25th, 2013

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If you see the title of this blog post you’ve already guessed something is not right. In fact this has been so hard to talk about that I’ve deleted the whole thing more than once out of fear and shame and then had to re-write it.

So let me start out by showing you happy pictures.

This is my little girl winning three medals for running track at school.

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This is my son and I playing and cuddling.

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And here’s Laelia who now reads sentences!

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All I could do in kindergarten was finger paint rainbows. Only rainbows. She is learning tenses and memorizing lines of plays. Wow.

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And here’s Roland eating his breakfast while running around the house. I sneak fish oil in those fruit and veggie packets he loves. Then we have a vitamin D gummy that he loves and some oatmeal with flax seed that he doesn’t love. His diet is healthier than mine will ever be. Still making up for some nutritional gaps from the almost two years he was an orphan.

I really get a lot of personal satisfaction from being their mom.

Can you tell?

(Yesterday at church our pastor introduced us to a man with ten adopted grandchildren. My husband said, “Oh we couldn’t fit them all in our home!” I piped up with, “YES WE COULD!” and got a hug from the pastor for that comment. ;))

I want more AMCers. It’s no secret. I love having AMCers and one weird reason is that they fit into my “leveling up” video game mentality. Just like you would level up characters in a game, I level up my kids by giving them their stretches, vitamins, doing physical therapy, taking measurable steps towards walking, self-feeding, potty training, etc.  My son started walking after only being home six months! Walking everywhere! I don’t even know how I would parent a typical kid without AMC. It would be boring. After all, I’ve leveled all my video game characters as far as they’ll go, even when it’s not necessary to beat the game. Typical kids wouldn’t even need physical therapy. What would I do with myself?

It’s weird. I know.

But I’m trying to explain why I continued to do my son’s stretches for two+ weeks despite how much he protested. I’m trying to explain what kind of person would be so bent on gaining range of motion daily that she would have no inner voice telling her something was wrong.

I had no idea.

I had no idea Roland had a broken arm.

For weeks.

And I was stretching it daily.

If you’re an AMC mom then that last sentence put an ache in your stomach. We have to stretch our kids. We know they don’t like it. We know it’s best. But we always wonder what this discomfort is doing to their little psyches.

Since the day we adopted him, Roland was both an incredibly strong and an incredibly sensitive child. He was the one who timidly asked for cuddles and also screamed for them. He is the kid who is “always happy” and “so mad” all in the same situation. He is also hard to read. He learned “no” and “ow” pretty early on and has used them both appropriately (“no” he doesn’t want that) and inappropriately (“no” he DOES want that). And he says “ow” when he sees a shadow, someone claps their hands, we go over a speed bump, he hears a cat meow or if he legitimately gets a booboo. Not only does he say “ow” in all those situations, but he also becomes whiny and sniffle-y. Thunk goes the neighbor’s front door. “Ow mama,” sniff sniffly sniff sniff goes the Roland.

Lately it had become a bit worse. To quote myself from a blog post twelve days ago, “Some days I’m only one more ‘No!’ or ‘Ow!’ away from grinding my teeth to nubs.”  But I had no idea when I wrote that how Rolly had been privately dealing with a great deal of physical pain. And how much worse had those “ow”s and “no”s and grimaces gotten in the last weeks? I had attributed it to becoming a typical little boy complete with melt-downs and tantrums. But in lots of ways he wasn’t typical. He wasn’t tough. He was loved, but still breakable–physically and emotionally.

Lately I have had to say “squeeeeeeeze” before hugging him or that big squeezey hug would cause him to yelp. But when he knows it’s coming he enjoys it immensely. I had been frustrated at how gentle he was and how pouty he reacted to me loving him. Man… and I know this isn’t the first time he’s dealt with pain, with adults who don’t know him and don’t get it. The clues to him being in real pain were there, but they were hidden.

And I keep thinking if I just knew him better, if he hadn’t just plopped into my life six months ago, then I would have caught it.

I should have caught it.

Oh God and I stretched that arm.

Worse.

It gets worse.

I started doing feeding practice once his right arm magically started bending enough to reach his mouth.  (Ugh, how long have I been an AMC mom?! Contractures don’t do that magically!) I sat him down with a child-sized red table in front of him and his favorite fish cracker snack on the table. He happily put crackers in his left hand and I corrected him. “No, use your right hand. Lefty doesn’t reach.” And I put them in his right hand. He immediately dropped them and screamed at me. A discouraging start.

“Sorry, Rolly, but you have to learn to feed yourself.” I said patiently even though I was frustrated because before recently he seemed to be right-handed. Now he seemed to be left-handed. Was this kid playing us?

He responded by dropping his head and eating the crackers off the plate like our cat eats from a bowl, hands-free.

“No no no. Use your right hand,” and I put the cracker back in his right hand.

He then handed that cracker to his left hand and tried desperately to get that hand to reach his mouth. His joint contractures in his elbow kept the cracker dangled in front of him like a carrot in front of a horse.

I put it back in his right hand and slowly stretched the hand back to his mouth.

He screamed.

I was used to his screaming. He screamed earlier when I wouldn’t give him something off the store shelf. He screamed when his sister had a toy he wanted. He screamed that morning when I told him we had to change his diaper before breakfast. We joke that Roland only has two volumes: ear-shattering, high-pitched screaming and regular voice. No in between.

He screams. It’s what he does. So I ignored him.

When I brought his right hand to his mouth he would not hold the cracker so it fell. And fell. And fell.

“I know you can hold a cracker. I don’t know why you’re being so stubborn!”

Again and again. Stretching and stretching. Screaming and screaming.

Again and again until I was losing my patience.

“Roland I know you can do this! You can hold this cracker. You can use your right arm. Why won’t you try?!”

“No!” he screamed and spit.

After a while I got so upset that I yelled, “FINE!” and stormed off, slamming a door.

I came back a few minutes later after I’d calmed down to find him face-planted in those crackers, stuffing his face.

That did it.

I picked him up and put him in his crib.

“Time out!” I said to his screams and protests. “And no more crackers!” I dumped them all in the trash, fuming.

When he calmed down from the injustice of it all I asked him, “Are you going to be good now?”

He responded weakly, “Da. Goo ba.” (Yes. Good boy.)

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Oh my heart hurts just remembering this. And I’m so embarrassed and so ashamed to share it. At first I was just terrified anyone would find out. Like child protective services would come take my kids away. I would become the cliched adoptive mom done in by the pressure. How did I miss a broken arm? The telltale bruise on his elbow? His grimacing face and heart-breaking tears every time we started doing his stretches. Which, by the way, was five minutes a day, every day… every damn day!

After the doctor told me it was broken I went into shock. I live four minutes from the hospital so did manage to get us home before I threw up and balled my eyes out. The next day I didn’t want to get out of bed. Roland turned on his music box in his crib (the only clue he’s awake) and part of me didn’t want to get him knowing I would see that cast and be punched in the face with that guilt and grief.

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The arrow on the right shows the fracture. The arrow in the middle shows a possible second one. And the circled area and beyond is where the bone was growing out funny because of continued trauma (aka stretching).

The whole reason we even got x-rays of his arms is because I thought his LEFT arm was bothering him. I had even discontinued stretching his LEFT arm because it seemed to cause him trouble. The doctor must have thought I was nuts when I was there for his left arm and his right was broken.

The AMC in his arm (the joint contratures in his elbow) had protected him since it left his arm stiff like someone in a splint. It also hid the break as he happily went through life the same as always. His “orphan training” taught him not to cry. So yes we missed it. But everyone did.

Ugggggggggh.

But I was suppose to be his safe place.

I was suppose to save him from pain.

Oh sweet buddy, you were hurting. How did mommy not notice?

They ended up casting both his arms because, as one family member put it, only I could freak out enough to get the other arm in a preventative cast. There was no way I was ever doing another stretch ever again at that point, and the poor doctor wanted to go home, so Roland got two casts–one for the broken arm and one to stretch the other arm.

It’s broken. Broken. Every time someone has commented on Roland’s casts I’ve always been able to say, “Nothing’s broken. He’s fine. We do this for his joint condition. It’s like braces on your teeth.” I’ve repeated that line so many times it’s part of going out in public. But the first time someone asked me this after the break discovery I about cried. She quickly said, “It happens to everyone. Don’t worry, Mom!”

Before this I would roll my eyes that someone would assume my kids were broken, that I neglected them enough for them to get hurt. Both my kids even have t-shirts that say “Sky diving accident” on them because so many people ask us how “it” happened and serial casting is just not in the public consciousness.

But now I’m the mom who has a kid with the broken arm. And I’ll never judge anyone else again.

So what caused the break in the first place? They guessed bad nutrition–the same explanation they gave me for his day of hypoglycemia in the hospital which has not been a problem since–caused by two years of poverty coupled with stretching him too aggressively. I do around 80% of the stretching. What if I broke his arm? The thought has paralyzed me. It’s paralyzed my parenting. It’s made me feel like an abuser. A failure. How many years have I been stretching AMC limbs? How many times had I given a tutorial to new parents worried they were doing it wrong? The doctor asked if I was holding his arm down low at the elbow or up at the wrist? I instantly knew what he was going to say. I knew better. You see Roland struggles against stretching as any two year old would. And he has enough muscle in his arms to yank them out of a good stretch. So I was holding his arm too high in order to get him still enough to stretch him and a little thing called leverage is why you don’t do that. My daughter is missing a lot more muscle in her arms and never fought against the stretches like Roland does so I never held her too high. I always had the perfect position with her. But with my son I held it too high. It was too much pressure. I hurt him. And I’m so sorry.

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“Do you feel if you can’t do something to perfection, you ought not bother? Do you frequently feel pressure to perform tasks that will result in applause? When you blow it, do you wait a long time before trying again?”

That’s what Beth Moore asked me last week. Or at least it’s what she wrote to her readers in a book anyway. I’m reading her book about an orphaned girl named Hadassah who rescued thousands of people from death and was the hero of Persia around 480 B.C. She didn’t do it perfectly. In fact she seemed to hesitate more than once. And she was afraid. We know her by her Persian name, Esther. When I lived in Israel we celebrated her story during Purim. And it didn’t matter how she did it, she saved lots of people. She did what she needed to do. Even saying, “If I perish, I perish.”

Yes I feel like I need to do parenting perfectly or it doesn’t count and God isn’t honored. Or if not “perfectly” at least almost perfectly with tiny little mistakes where I don’t cause great pain and suffering to my children. (My children should all suffer from the horrible haircuts I give them! Nothing else!) But my track record includes having two unnecessary surgeries on my daughter before we found her doctor in Philadelphia and breaking my son’s arm. And it’s darn scary to keep trying when I’m constantly reminded about my failure.

I never liked the story of Esther because it was so “human.” Other Bible stories are so supernatural. God takes the reigns and saves the day. Moses parts a sea and it’s a powerful sight! Joshua fights a battle and wins. Deborah defeats an army and songs are sung about her leadership. These people are larger than life! But Esther was a glorified orphaned hooker, shaking and trembling and hesitating, yet she did was she needed to do.

And although it doesn’t say this, I bet she had small children too. She had been married for five years in a culture that valued offspring. And no pill. I wonder how that affected her decisions and made her hesitate. For a character I never liked, I now respect her, the mess she was.

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Roland seems fine, but I have just cried and cried over him, holding him close and rocking him gently. Now when I hear “ow” (like just now when his stuffed animal fell off his walker) I just lean down and say, “Oh sweet boy are you okay? Did your stuffie get an owie? Poor stuffie. Have some cuddles.”

Roland is still bonded to me. I didn’t scar him for life. He still looks to me for comfort despite my failings. He still takes my hand and puts it on his tummy when he wants “ticky ticky” (tickles). He still enjoys peek-a-boo with mom. He still demands “up” and gets held and kissed. I’m not perfect and nothing about adoption is pretty or perfect. I’m not overly good or overly bad. If every orphan waited for perfection in order to be rescued then no one would be rescued. If every mom waited for perfection before adopting then every orphan would remain an orphan.

It’s okay to just do your best. I’m an okay mom doing an okay job. Some days I rock this job. Other days I don’t. Behind every great kid is a mom who thinks she’s doing everything wrong… or so I read on Pinterest.

And I want to thank the many, many people who wrote me during this time and told me about their whiny kids who days or weeks later turned out to have a broken bone! I appreciated it greatly! (I’m sorry it happened to your loved one, but I’m so glad I’m not alone!) And thank you especially to the AMC mom (you know who you are) who told me about breaking her son’s arm during stretching! Maybe this is more common than we think! It’s a club we never wanted to be in, but I’m glad to have company who understands.

So I am getting back up, picking up my kids and holding them close. I’m rejecting the lie that my son was better off where he was. I’m rejecting the lie that I’ve ruined my kids for life by making mistakes. And I stand by my claim that having AMCers is the best. They are bright, able, loving and precious. They make the game of life worth living. They deserve a mom who is trying, and one who doesn’t give up and doesn’t stop learning and changing to be what they need. I’m going to shed this shame and the fear of people knowing I’m not a great mom and just do better.

Roland’s knees and legs

Saturday, February 16th, 2013

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I’ve already done a blog on my daughter’s knees and their progression from bendy to straight so you all already know how amazing this little girl’s story is. We went from doctors absolutely flatly refusing to cast her knees five years ago (and denying us for stretching knee splints because Laelia was too “disabled” to utilize straight legs) to commuting to Philadelphia so Dr. van Bosse could get this little lady’s legs super straight and walking everywhere. She’s even begun to climb small steps!

Five years later and one of the original doctors who didn’t want to cast Laelia’s legs straight was all too willing to cast Roland’s legs straight. (Saving us weekly flights to Philadelphia.) Medical practice evolves, thankfully, and I want to believe my daughter was a pioneer in that regard, at least in a small way. I do know her pictures were used in many occupational therapy presentations across the country, and I have met people who have seen this blog and changed their expectations for their AMCers based on it. Her story was made stronger by the dim predictions of some of the best doctors in orthopedics early on. And I’d like to think there was a reason we did not have instant access to the best advice and therapy techniques. Maybe it was so people could learn from our mistakes. Maybe it was so we could travel to Seattle and Philly and Kansas City and meet many people. Maybe so others who had also missed the boat could get hope that if Laelia could start walking at age 4 and independently at age 5 then their kids could too.

Well, I know one AMCer who has had his life changed by Laelia’s experiences: her brother. Someone who was not believed to ever walk himself and started doing that very thing after six months* of Ponseti casting, bracing and stretching.

(*Now Laelia’s experiences seem to be at one end of the spectrum  and Roland’s at the other. Roland responded really well to casting. He avoided tibial subluxation (a complication of casting knees) and he had enough of the right kinds of leg muscles to walk without needing years of PT intervention first. What has taken Laelia years has taken Roland months. We know we got off easy with him. So I guess I’m not saying, “Roland achieved ambulation in six months and so can you!” The same exact therapies would not have worked as quickly on Laelia’s body. Every AMCer is different. But I am saying even the most severe cases of amyoplasia can be ambulatory. I know two adults around my age who have decided to start the process of ambulation or easier ambulation later in life. And Dr. van Bosse has seen many many adopted older kids with AMC and increased their functionality greatly!)

Okay now on to the Roland pictures. Here’s what’s been going on for the last several months.

Roland’s knees

Roland's knees

(Click on any picture to enlarge it.)

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Those knees were stuck around 100 degrees for one leg and 90 degrees for the other.

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Stretching and gravity didn’t straighten them much.

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Roland’s little legs during tummy time.

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Combined with his little curved feet we knew Ponseti casting was in his future.

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After a month home we had stretched his arms to around 15 degrees of bend, but his knees only gained a few degrees of range from the stretches.

Time for casting!

Casting montage!

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Dinosaurs from Philly. Dr. van Bosse started us off with the first set of casts. The following were all done locally.

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Red

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Green

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Black

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Purple

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Blue

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Right after blue were removed. Look at those straighter feet too!

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From the side

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Red, green, blue and purple

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Orange was our favorite!

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Blue again. This is Roland playing at the Polar Bear exhibit at the zoo.

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Right after second set of blue casts were removed.

They gave him little stockinette gloves to keep him from scratching at that poor skin.

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Look how straight those knees are getting!

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PINK!!!!!!!!!!!!!!!!!!!! Just for kicks.

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Standing practice! (Hiding the pink casts under yellow socks. ;))

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Some skin breakdown meant we needed to take a break from casting. But his feet were very close to perfect!

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This is how far we got his knees. It’s easier to tell in x-rays.

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FIRST REAL BATH IN MONTHS!!!!!!!!!!!!!!!!!!!!

(The casts smelled so bad.)

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The casts were bivalved (cut in two) and became removable.

We kept them on with ace bandages while his leg braces were being made.

Those ace bandages had to be burned afterwards. STINK!

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Finally new KAFOs! (Knee Ankle Foot Orthotics) The left leg needed more time to heal at this point.

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In Payless getting his VERY FIRST PAIR OF SHOES! He’s really thrilled.

Once they healed enough (and we put a ton of liquid skin on the sore areas) someone could wear his KAFOs again!

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And he’s standing independently for the first time!!!!!!!!!!!!!!!!!!!!!!!

(And he’s thrilled about it.) :)

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You’ve come a long way little guy.

:)

Worst day ever.

Thursday, November 8th, 2012

My day started out so well. I knew it was going to be hard since Roland was getting four casts changed, but the positive thing (about the only positive thing) about a hard four-limb removal/recasting is that after it’s all over Rolly sleeps like a rock when we get home. It’s like the nap of champions for an otherwise allergic-to-sleep awake zombie child. There’s a lot of emotional energy that he expends during days like this and sleep is healing for him. I was thinking maybe I could watch something on Netflix. Maybe I could even tackle the dishes. It wasn’t going to be a bad day, at least that’s what I told myself.

Roland was awful hyper this particular Tuesday. He was his tornado self. And I wish I could get a forecast for his levels of destruction before planning anything. But alas I had today and only today to go vote and he had to come with me. The polling place was very close by and I carried my son in there. They gave him my “I voted” sticker, which made him so happy. It should have instead read, “I distracted.” Or better yet: “I did karate moves while mommy held me football style and tried to vote with her other hand. Then I almost knocked over the cardboard booth, yelled hello (my new favorite word) to everyone ignoring me and tried to grab mommy’s ballot while loudly saying, ‘daaaaaaaaaaaadoooooooooooooooooo!’ which I’m pretty sure means, ‘Don’t look at that, look at me!’ And then they gave me this sticker! Best voting day ever.”

Then straight from polling place to hospital. It wasn’t until we pulled up to our spot in the loud underground parking garage that Roland got a reality check and calmed down from his happy madness. He wasn’t even singing or kicking when we entered the double doors. He was clinging to me by the time we went back into the clinic rooms. People commented on how good he was being. That’s fear, people.

We hit a snag when entering clinic. My husband had a career change recently (last week) and our insurance is through him. And even though we were suppose to have insurance during the transition, it had not been activated. And they would not remove any of Roland’s casts without payment or insurance. I was not about to lose weeks of ROM due to money so after many phone calls that went nowhere I ended up having to pay out of pocket. It was not cheap, but I couldn’t leave my son in four casts!

As for some good news, Roland is 50 degrees away from straight knees. He has 60 degrees of bend in his right arm and 75ish in his left. (Up from, 5!!!) That means we’re looking at only another month or less of casting his upper body before going into splints and back to daily stretching. His feet also look good. He has a flat left foot and is 20 degrees away from flat in his stubborn right foot. No idea how much longer lower body casting will be. But I’m encouraged!

After the buzzing saw, clean up and recasting was behind us I got a phone call from the school nurse. Laelia had a stye  on her right eye that was going away, but had developed a bad stye on her left eye recently that had just ballooned overnight. We think Halloween makeup didn’t help. Well the left stye had burst during class and I needed to pick her up immediately. I am literally right next to the ER at Children’s and so I ask where I should take her. They tell me the pediatrician. So I go to Laelia’s school, pick her up from the nurse’s office and drive straight to her pediatrician. I am a bit panicked because her eye looks so bad. Eventually a nurse comes out and says, “Yes you definitely have to see the doctor. You don’t have an appointment, but we’ll fit you in.” (I’ll fast forward the story past the waiting drama followed by Laelia needs to go potty drama, followed by poop blow out by Roland and realizing I did not pack wet wipes drama.) All of the sudden the receptionist goes, “Wait it’s saying your insurance is not activated.” I completely forgot. Didn’t the casting clinic work out fine? Oh right I paid out of pocket. I was really not thinking straight. I tried making all the same phone calls to no avail. I asked them to please just see my daughter and I would make payments if I had to.

Well two hours later both her pediatrician and another  pediatrician told us, “Go to the ER. Now.”  So now I’m loading both children up and we’re rushing to the emergency room WHERE I HAD JUST BEEN! (Casting clinic shares its rooms with the ER.) At this point Laelia’s eye had filled with puss and she couldn’t see. As she would put it, “But that’s what my other eye is for! Can we stop for tacos?”

We had one funny moment when I storm into the ER with one kid in a wheelchair and the other in four casts where the guy behind the desk asks, “I need both their names. Was it a car accident?” I’m like, “No, you’re just seeing the cyclops.”

They said they could see her right away so I was starting to relax. Then I hear, “Do you have insurance?” Acccccccccccccc!!! Yes. No. Well it’s the ER so they saw her anyway. The doctor said he thought it looked infected so they got a culture and prescribed an antibiotic and eye drops. But when he cleaned up her eye she started screaming. So he had me finish it up while he went to fill out the prescriptions. So I’m being so very careful but notice my towel is getting pink. Then all of the sudden, just like a horror movie, blood starting gushing from Laelia’s eye. It was like a red flood. Literally. Think the scariest thing you’ve ever seen. Laelia was screaming in pain. Roland was screaming to be louder than Laelia. I had to leave them both screaming and run from the room to get someone to help. In my mind I thought for sure my daughter would go blind and my son would be traumatized. (He is still hurting with four newly placed casts and no nap.) Doctors rush in.

It turns out that she may have had multiple styes and one popped at school while the deeper one on the inside of her eyelid popped and bled after I tried to clean it. So great. My daughter’s eye just decided to explode today… twice.

 

A little puffy and crusty three days earlier.

But she’s still happy. (There’s one on her right eye too.)

One day later.

But she’s still happy.

It pops at school into her eyeball.

Picked her up from school like this. (Note the smile. Really?)

At the pediatrician.

Partially blind in that eye at this point.

Home from the ER.

Can I have ice cream?

Roland threw  hysterics  off and on from that point forward. Through the horror, through the waiting, through the check out and anytime I wasn’t looking at him. He wanted his nap, darn it. Then he quieted down for a moment, looked up at me and threw up. Everywhere.

WHAT HAPPENED TO MY NAP?!!!!!!

Followed by *puuuuuuuuuuuuuuuke*

We were a wreck by the time I got to the check out desk. At this point I was upset about not having insurance… or wet wipes. They were telling me a ton of information about how to pay for this ER visit that I only half heard. Both my kids were crying and I still had to get Laelia’s antibiotics. I just kept nodding and signing things and then they let me leave.

We walked down the road into the pharmacy. While Roland screamed and knocked things off the display shelves (yeah they loved us) I handed the lady my prescription paperwork and it wasn’t, I swear, until she asked for my insurance card that I remembered, oh yeah, I DON’T HAVE INSURANCE! Accccccccccccccccc!!! After some back and forth, I ended up paying out of pocket for the meds since we needed them immediately.

I was walking back to my car (on the other side of the world) when Roland’s front stroller wheels decided to stop making any turns. So I was pushing him while dragging Laelia’s wheelchair behind me with her facing backwards, then having to stop and readjust every two feet. Thankfully a good Samaritan saw me and, even though we were going the opposite direction and well out of her way, she grabbed Laelia’s wheelchair and started small talk with her while following me to where they stab and rob people… I mean the RMDH parking garage. Specifically into the farthest, darkest corner of it where I parked when it was daylight and now was pitch black. The lady was nice enough to help without asking why my son was in four casts or my daughter had blood all over her face. Smart woman.

I had been calling my husband all day, but I had his other number to his other work phone that he had in his bag. He wasn’t able to find out we were in the ER for several hours. In fact it wasn’t until the very end of the day that he was able to come help. He made it to the ER just as we were leaving! We headed in two directions so Charley could get the tacos and I could get the ice cream for the little cyclops princess. Charley then fed the kids and gave me a little break to check email. The first email I read was letting me know the child (orphan) we had been advocating for this month had died.

I just burst into tears. My problems are so small. My insurance issues so petty. My children are happy and healthy most of the time. They are loved. This little seven, no, eight week old baby girl died alone and unloved. Three families had been interested in her. Friends had offered to blog about her and were working on their posts. And just like that. Gone. I haven’t gotten any details, but last I heard she had some fluid in her lungs from not being upright (read: held) enough. She was left in a hospital, but not getting the care she needed.

There was a moment where Laelia’s eye looked super gross that I considered for only a moment just going home and doing my best to take care of her there. It was because of my insurance situation. She had an infection and her stye would have burst at home. That would have been awful. And Laelia is the most precious thing in the world to me. But my insurance situation almost kept her from getting the care she needed. For those who don’t have insurance, who can’t afford it, who live without it, well, I just can’t imagine what they face.

Roland screamed off and on until well past midnight. He turned out to be dehydrated from throwing up, but he was able to keep down some water once I got him to drink it slowly. We were up anyway watching the elections. “President Awana” (Laelia’s words) won the election. And I have to say that I was relieved that Obamacare won’t be repealed. It will save lives. It will be there for NICU babies. It will be there for those with preexisting conditions like my two. I know Obamacare is unpopular to some people, but right now I want to give every penny I have to helping those without health insurance. I want to raise funds for those without it, especially those at risk like children or the elderly. I’m heartbroken for these people. I see this need with new eyes. But at least now the Affordable Health Care Act won’t be repealed and more people will get the access to health care that I have enjoyed most of my  privileged  life. Sorry this didn’t start out to be some political talking point. Definitely with elections having ended I’m not trying to make people think or vote a certain way. But I’ve heard a lot of dumb things during this election (which seemed even more petty as we sat in the hospital), and a few people didn’t stop to think about the hurting human beings they were referring to before spitting out their views on who deserves what. Bottom line: People in different situations than me deserve food and health care. I am not better than them.

It’s now Thursday night. Laelia swallowed a whole pill in a spoonful of apple  sauce   I’m pretty proud of her. She even held still for her eye drops. Roland threw up his peas and it makes me feel a little better thinking it might be a stomach bug and not stress from what we went through a couple days ago. We ended the night by lighting the candles in the fireplace and singing songs before bed. Laelia knew all the words. Roland… didn’t, but that did not stop him from making noises we’ll call singing. ;) We prayed for the orphans still waiting for families. Especially Aubrey, Elizaveta and Raymond. Then I tucked my children who I’m so so so thankful for into bed. They are gifts to me. I’d go through a hundred days like Tuesday as long as I get to be their mommy.

The hard times and the good

Tuesday, September 18th, 2012

Peek-a-boo!

Today was the day I was going to write about my son’s one month home. He’s been with us one month. I have so many pictures of this trouble-maker, you have no idea. And videos. And accomplishments. And joy. And love. And a high number of just his finger. (Stop pointing at the camera, my love, and keep doing the cute thing you were doing. I give up. Cameras are too cool and must be pointed at.)

But life is happening and it’s too much to find the time to write. I will share–believe me these picture demand to be shared–but not until next week. I hope next week. After we’re back home from medical travels. (Oh I’m not looking forward to having Mr.  Trauma  back on a plane. God help us.)

You see today is hard. Today my husband is sick. Today we missed the school bus. Today Roland has an appointment to get casts and we’re going to the appointment but refusing the casts… again… because our son is not ready. Tomorrow we fly to Philadelphia and Delaware for medical treatment for both kids. We arrive so late that we can’t get into the three Ronald McDonald Houses and must get a hotel. Today I called the rental car company and found out our reservation wasn’t put in. Today I feel defeated, busy and stressed.

But where my focus really is, even if it shouldn’t be, is that today is the last day of work for me. I had to leave my career. It was work-from-home, but my position required coming into the office for some much-needed meetings, and I just can’t. I don’t know when I could as my little one learns he is safe and that we won’t leave him. My family demands so much right now. I was pulling all-nighters to get my work done. Leaving my job to care for my family has made me feel like the biggest quitter ever. Six years I put into my company. Six years. I won’t even have more free time if I do this, just a couple more hours sleep a night… when Roland lets me. Oh and I’m good at what I do. I get a sense of self from what I do. A sense of pride. And we rely on my income. I don’t know what we’re going to do, although I know we have a few months to figure it out. Today is hard. Not just because I have a ton of work to do for my company before I leave everything in other’s hands, but because this was my life. The life I liked.

“If this life I lose I will follow you.”

This life is a blip. A blip. One tiny speck on our timeline of eternity. In that perspective it’s easy to lose this life to gain so much more. Is my son worth it? Damn right he is. Damn right.

(Yep cussing on the blog. First clue that I’m overly emotional.)

And I haven’t packed for Philly yet. In fact (shocker) I haven’t unpacked from Ukraine yet. Heh.

So instead of writing about all the joys of the first month, I’m going to leave you with some of the beauty in the pain.

I’ve talked a lot about the first three days of non-stop, mindless screaming from our new little son. (It helps that I’ve spoken with another family who adopted out of his orphanage and some of my  suspicions  were supported.) That was hard. But by day four, I don’t know, I was filled with love for this screamer. It could have been the wonderful prescription medication I was on, but something was different that day. We had just settled into the uncomfortable knowledge that this could be our life now. It could be our life for months or years. And we needed to function despite that. It’s scary when after three days you have no light at the end of the tunnel. Three days is long when your child is screaming at top volume, but it’s longer when you don’t know if it’s just three days or a lifetime.

Want to see a glimpse of day four? Turn your volume down and click here. By day four I loved this little boy. By day four his screams were not high-pitched anymore, and he seemed to be asking for comfort instead of reacting to an unseen terror. I held him on the couch after not showering or brushing my hair or teeth for three days. I held him and whispered love to him. I was able to smile–a small miracle. My husband took a video. We wanted to capture daily life.

Then, and I cry as I remember this, then this happened: This. For the first time ever he came back to us. Back out of the world he was in. I can’t describe how for three days his eyes were just blank, unfocused. Then he started to make eye contact. Then he didn’t thrash when I touched his face. He came back. He came back.

And he made kissy faces. “More kisses mom. Yep right there on my forehead. Perfect.”

When I wrote the blog post about (not) living happily ever after, I was being very honest. I thought maybe people would not want to adopt after reading how we were adjusting. Then THREE people emailed me after that and said that they read the post and were definitely going to adopt. One started the process. Another picked an agency. A third is definitely, seriously considering it a few years down the road. Wow. Wow. Really guys? After I post about screaming? Welcome my fellow crazies! Haha!

They get it; it’s about people.

Now do me a favor and click here. Read  this story and then you can tell me that we’re all crazy. (We won’t argue.) Go ahead. I read that link and cried my eyes out. It speaks truth to me. It lets me know I’m not a freak show for wanting to go back and get another one, or support others getting theirs even though I know it’s so hard. Just read it. (Despite the amazing support we’ve received, we still have the same crowd mentioned in the story.) Do me a favor and just read it. I didn’t write it, but we sure lived it.

See you in a week, friends. Hold onto this promise from me, incredible joyful stories are coming. Just give us one more week or so of hard. Pray for us.

Three steps forward, one step back

Thursday, March 15th, 2012

So after our three hard days of evil AFO adjustment came our breakthrough: Laelia slept through the night and woke up without her face all scrunched up with pain. We relaxed and considered it a victory. The very next night Laelia slept a bit and then woke up screaming. For all our caution the shoes had caused a deep red mark on her left foot. She cried for twenty minutes after I removed the brace. I finally put her in a hot bath and the heat soothed the pain. She stayed in the bath for three hours begging me not to remove her. With a red mark that fierce I can’t put the AFO back on and I can’t tighten the straps. The orthetist can’t see us until Friday to adjust them either. Crap.

I put in mole skin and that helped a bit, but they still couldn’t be tightened. I really did not want to lose three days worth of pain, but didn’t want to make it worse. A friend on Facebook (thanks Martha!) suggested New Skin (the liquid bandaid) to put on the red marks to protect them from the brace. Apparently that’s what ballerinas use when their shoes are rubbing holes in their feet. It was worth a try. I called Rite Aid to see if they had some. They had it at the counter when I ran in. I explained that it was for my daughter’s braces and I’d never used it before. The gal ringing me up immediately tried to stop me from buying it! She said stuff like, “You don’t want this. This is like for burns and stuff. Let’s find something else.” And I was like, “That’s fine. This is what I want. I will… buy it… now… thank you?” Finally she said she would never put this in a child’s mouth and I realized our communication error. “No, it’s for the braces on her FEET, not on her TEETH!” We both laughed. Now that I’m back home and smelling this stuff I want to thank her even more. It’s strong, like an oil refinery. I scratched my face and it burned my eyes a little!  If this was going anywhere near a child’s mouth that would be abusive!

Thankfully the mole skin plus the liquid New Skin did the trick. She was able to wear her braces. I think the left side is a little loose because it’s hard to judge when you’ve packed it with mole skin, but hopefully it’s fine. I hate this stuff!

And just for the record this has nothing to do with her surgery. This has everything to do with her feet missing heel pads and having been severely clubbed at birth. The ankle foot orthotics (AFOs) are killer because we’re trying to avoid yet another surgery on her feet. Her knees are doing okay post plate insertion. She does not like to bend them though, and that’s probably good because we’re not suppose to work on bending them until they’re straighter. Still when she’s not in her protective KAFOs (that keep her knees straight and secure) then she will hold her breath when I pick her up because she’s worried I’ll do it wrong and bend those little knees. But she is standing again and taking steps (although not as many as in her casts), and she’s getting better everyday.

Well now that Laelia is feeling only a slight irritant instead of major pain, she has become only a slight irritant instead of a major pain. (Come on other mommies, back me up here.) One day I couldn’t take it anymore. She’s been acting out and whining a lot over silly things. Finally I called my husband and said, “I can’t take it anymore!” And I loaded Laelia in the car and we drove somewhere. Anywhere! Just needed to get out of the house. We drove to a fish store actually. Laelia wheeled herself all over the place and the whole time kept gasping and shouting out her discoveries. She loves fish. And yes I bought our family it’s first fish. ($4.99?!! Didn’t fish used to be 20 cents?!)

Meet Rocky!

Laelia’s eyes got wide at the thought of getting and naming her own fish. I was so proud of myself for thinking up a way to teach my child responsibility instead of just staying home and strangling her adorable, annoying little self. She promised to feed it and play with it and love it. We got it home and the first thing she did was pick up the container and start shaking it while loudly singing, “FISHY FISHY I GOT A FISHY!!!” She’s seen Finding Nemo so many times and yet has learned nothing from Darla apparently.

After explaining how to care for her fishy, we got it’s food out. Laelia had to finish all her dinner before she could feed the fish. (We had fish for dinner, is that wrong somehow?) Laelia gave it a few balls of fish food that were the size of dust particles before announcing, “This is boring! Can we feed him the entire bag? Can I play with him? Can we get another one?”

*sigh*

Adjustment following AFOs: Seven tricks

Sunday, March 11th, 2012

These are the things that make us quite blue.

Here they are now:  Pain One and Pain Two!

Laelia  got new braces this week. Now you’re probably wondering why that means we missed an art show at the Park Gallery (where Laelia was one of the artists), a birthday party, church  and a couple of promised  trips to the zoo. Let me explain.

There’s nothing I dislike more than painful ankle foot orthotics (AFOs). My husband and I have considered surgery over  using AFOs (not a good idea by the way)  and had our worst parenting experiences following getting new AFOs.  Dark times.

We have been through this before, but that only makes it marginally easier. When you’re looking at getting casts off and seeing your darling child’s legs again all you think about is bath time and putting them in real pants. What no one seems to warn you about is that you’re in for pain. New AFOs that are really doing their job WILL make your child weep in agony. (My first experience with AFOs when Laelia was a bitty baby went something like this.)  This time we at least knew what we would be looking at.  Still we got our hopes up just a bit that it would be easier now that Laelia was older. It wasn’t.

When I was  younger I would get  the braces on my teeth adjusted and they’d hurt. It was done after school and all I could have for dinner  a few hours later was  aspirin. Sometimes I couldn’t sleep. And I was one whiny teenager during those first two days  following an  adjustment.  AFO pain is suppose to be comparable with that, only with a little kid who could probably out-complain someone who was just hit by a bus.

(Speaking of, Laelia scared me to death when she started to scream her head off in the middle of the night. It turned out  she was frustrated with the volume control for her movie. Of course everything is major when you’re in discomfort, but still.  I gave her a stern look and asked her, “When are you allowed to scream like that?” She hung her head and guiltily replied in her little voice, “Only when I’m on fire or being eaten by a bear.” That’s right!)

So how do we get through new AFOs? There are some tips and tricks.

#1. Send husband far, far away.  My super wonderful husband  is mush when his daughter cries. Plus he works two jobs to support us and our adoption and needs the sleep. (Plus I have a personal theory that hardship makes women stronger and reduces men to tiny, helpless children. *ahem*)

#2. Remember it always takes three days with AFOs. After three days life gets normal again. Keep your eye on the goal. You can do almost anything for three days, right? Plan on getting no sleep for those nights and treat it like having the flu. Call in sick and hunker down for some hard times.

#3. The trick is to  not ease up on the dorsiflexion  straps. Loosening the straps leads to a month of this and this. I’m serious. It also leads to months of whining about loosening the already loosened straps. This is the first time in our child’s life that I have not loosened the straps. I always have caved on this point in the past. (What can I say?! I’m weak!!) Don’t do it!

#4.  Medicate the kid. Now when it comes to medication I always hesitate. I hate “unnatural” things in my body, even when they’re good things. And being a first time mom I have been scared to put anything into my precious daughter’s system, especially when she already has to have meds after surgery. But medicine  takes the edge off. So this is the very first time I actively asked for a prescription for pain meds before starting this new AFO process. It made me feel icky, but I’m glad I did it. It helps on  a physical level and also on a psychological level. When Laelia knew she was taking the pain meds she started feeling  better. When we hid them in her food she only felt marginally better.

#5.  Take the AFOs  off and check the skin.  I know it’s hard to even look at these things let alone touch them. And yes your child will scream while you remove them and then scream louder when you put them back on. But you need  to check for redness, “work” the straps and change sweaty socks.  Wet socks  lead to  skin breakdown (click on that link only if you want to see bloody pictures of my child’s foot). Then you put those braces right back on  without loosening them! Stay  strong through the begging and pleading and shaking. (Kick your husband out AGAIN when he comes to make sure his daughter is not on fire.)

#6. Be super mom. It was hell the first two nights and  we got next to no sleep. We watched kid’s shows all night while I rubbed her back and legs and the tops of her feet with the braces on.  Hour after hour after hour. She cried and whined a lot. I had to sometimes leave the room to go punch a pillow and cry before coming back to her. (A crying child does not always result in sympathy, but instead you just want them to stop!) But I always  let her know I’m in this thing too. I stayed firm about  not loosening or taking off her shoes until she finally (30 hours later) stopped asking. We got through it together.

#7. Don’t loosen the straps.  Did I mention that already? :)  Some say to work up to the lines, meaning start out with them loose and work up to full tightness, but don’t ever start tight and loosen! Not worth it. (For the record, we didn’t do that. We started with them on the lines and stayed there. That way it would be really hard for three days instead of a little less hard for a week or two. Last time an ulcer developed. Then you back off. We were lucky this time.)

The pay off:  Last night (day three) she complained when I put on the straps but  then she slept for 14 hours straight with those braces on. She woke up saying that the pain meds had worked and  her feet  didn’t hurt. She has finally adjusted. And her feet, although a bit red in places,  look beautiful and have more range of motion.

Yay! Ugh. Now what day is it? *collapses*

See you in six months!

Thursday, March 8th, 2012

It doesn’t matter how ready I am or how many business cards I hand out explaining  Laelia’s condition, people will still look at a girl in full leg casts and ask how  we broke both her legs. And that’s if they’re nice. Most whisper in vicious tones to each other loud enough for us to hear as we stroll past. On our way back from our surgery trip last month a flight attendant guy asked, “How did you guys end up  doing both legs?!!” I guess he was pointing out it would be hard for a four year old to do it alone and her parents must have helped push her off the cliff. Most just say, “Poor thing,” as they walk past. I hate that most.

But I found the best way to avoid all the drama and have some great laughs and conversations. I simply wrote “skydiving accident” on her shirt.

I got lots of laughs and lots of random people coming up to us saying they liked her shirt. Only one lady actually asked me, “Was she really in a skydiving accident?!!” It was great. :) After the shared laugh I would just say, “She has an orthopedic condition,” and it was enough. No more strangers’ nasty comments, and even  the shared whispers behind our backs were light-hearted. My favorite: the “poor little thing” people added, “skydiving is rough for anyone.”   :)

Sunday everything went wrong that could have gone wrong. We got to the airport and realized we only had parts of Laelia’s wheelchair. Charley did a mad dash back home as we checked into our flight. They held  the plane  for us. We made it with one minute to spare. It was super stressful and wouldn’t be the end of the stress. In every flight we had that day we displaced someone from their seat who was not happy with us. We had no idea that because of Laelia’s casted, unbendable legs we were required to put her in a window seat in case of emergency. No one likes to give up the window seat  we came to find out. One guy refused to talk to us even when I was thanking him for moving and offering him my free television. (Later he paid for  Laelia’s milk we found out. Apparently  he got over it!)  We landed and ran to our next plane. We boarded quickly and then sat on it for over an hour and a half as they did maintenance. The power went out and it was a little scary. Finally we were up in the air, but some people would miss their connecting flights including us. (Remember these trips are three plane affairs for us.)

During the second flight Laelia announces that she has to go potty. Of course if the plane had left on time she wouldn’t have had to go on the plane in full leg casts. I gently carried her in there, but her legs were hanging off the potty and we both didn’t fit and I bumped her head and her right leg. And she ended up being in pain and screaming for a solid twenty minutes, holding up the line. She didn’t even go potty. Lots of angry looks later we landed. The flight attendent told me that if I missed our window to get to the RMDH that maybe the airline would put us up in Milwakee. I explained that then I would miss her doctor’s appointment.  I got in the line to learn my fate and  was standing behind a family who was put on flights to Philly that would arrive at 10:30 pm. They were told they were lucky since it was the last flight they could book. My stomach was in knots because if we arrived that late we couldn’t stay at the RMDH.

(Oh speaking of the RMDH I called during this time to make sure we had a room and was told we were not on the list! Lots of stressing later they ended up finding us a place to stay, but only if we arrived by 8:00pm! Now it looked like we wouldn’t make it there!)

Well it turned out they had room on a plane for two people but it took off in 30 minutes and was with a different airline! We had to run out of the airport and then re-enter with US Airlines and do security all over again. (Where they separated me from my daughter, which made me crazy and I complained loudly until we were reunited. Not cool TSA.) We barely made that flight before the doors closed. And then we sat there as it turned out the plane was covered in ice. (I nervously counted every minute.) They sprayed it down for a while before we could get out of there. I called RMDH when we landed and said we would arrive after they closed. They said they would wait 30 minutes longer (until 8:30) only because they had a volunteer willing to wait. But they just could not wait any longer than that. Of course we exited the plane and discovered that Laelia’s wheelchair was missing. (Of course.)  We were the only ones on the plane with the cleaning crew before they found it and brought it up to us. Then we raced to get our luggage only to discover it was lost. (Not joking.) Not just left behind, but not in their system. I explained that we had been on three different airplanes and two different airlines today and they explained that it would be a miracle to get us our luggage. That’s when it hit me, besides all of our clothes and coats and toiletries, Laelia’s medication is in that bag! Ugh. So we filled out our paperwork for missing luggage and raced to the shuttles for Thrifty Car Rental.

The shuttle didn’t show up and the security guard hadn’t seen it in a while so he  suggested we take a taxi over to the rental place. Just as we were about to do that he comes running after us to tell us the shuttle finally came. We made it to the rental car place, but they left us on the shuttle! (I’m still not joking.)  The guy driving got out to help some VIP members get settled and didn’t come back. I couldn’t operate the wheelchair lift myself and kept waving that we were on the shuttle and no one came back. I got on the intercom equipment but couldn’t figure out how that worked either. Just as I was about to start honking the horn wildly the driver came back. No word. No apology. Just worked the equipment as I stood there in tears. We ran in the building to a long line. Oh no. RMDH had just closed for the night, but we still had that 30 minutes they offered us.  I cut in line and asked to speak to a manager. (I knew three managers’ names and was ready to demand them ALL in a minute.)  He helped us get our rental car  since we already had a reservation. Then when we got out there our rental car seat was too small, not in there properly and would not adjust easily. And it was against the law for him to help me with it.  I fought and silently  cussed at it in the cold as Laelia (as she’d been doing this entire trip) whined. I looked at her and said (I thought very calmly), “Not another sound Laelia.” Then  I finally got it in there, adjusted it  and  put Laelia in there when  the ridiculous harness pinched her. The thing was total and complete crap. Then I raced to the RMDH. Half way there my daughter asks, “Can I talk again now?” I had forgotten I said that! What a good girl she is! I was stressed out of my head, but managed to sing Old McDonald Had a Farm the rest of the way there with her as she laughed. (And on his farm he had a bridge! Bridge?!! Hahahaha!)  We arrived at 8:31pm.

Now they didn’t have to let us in the building. They have a strict rule we were breaking by coming so late. There were security issues involved here. But they saw how broken we were and how tired (and heard about everything that happened) and  in their way the RMDH made it all better. Laelia had a rough day, but they handed her the most gorgeous Ariel the Little Mermaid doll in the world. It’s part of a wonderful  collection we had seen in Disneyland and we wanted one so much!  She cuddled and kissed it and was the happiest little child ever. (“This is the best day ever,  Mama!”) We checked in and had our first real meal  of  the day. It took a while to calm down from all of that, plus we had to get toothbrushes, a pair of pants for Laelia for after cast removal the next day  as well as other things (like a ton of Pull Ups). We finally got down at midnight.

Laelia also developed a sty on her right eye. Ugh.

At 2:00 am we heard pounding on our door. I quickly got dressed (through the pounding) and answered. They had our luggage, but I had to get all the way dressed and go down the elevator and  outside in the cold to sign for it. I grabbed shoes and with no coat  ran to sign for my bag. So we were now fully awake. I  had Laelia’s medicine that I put in her cup and was thankful at least that I could shower and put on clean clothes. (What I shouldn’t have done is dig through my suitcase so messily. That would come back to bite me later.)

Our appointment was at 10:30am, but we probably only got four hours of sleep (and not in a row) after a long, stressful day/night. We ended up waiting for five hours to see the doctor. We fell asleep on the table waiting for the KAFOs to be adjusted. We got out of there at 6:30pm and missed dinner at RMDH where we were hoping to meet up with more AMC families. (There were about ten other families with AMC there. Just further proof that this is AMC mecca. It’s so wonderful to see all these kids through the years. I now believe completely that every child with AMC, no matter how affected will achieve ambulation!) We went straight to Rite Aid to get Laelia’s pain prescription, but they had trouble with our insurance card.  We got back to the house around 8:00pm when I discovered that they had NOT included a doser for measuring out the 7.5 milliliters.  A RMDH volunteer went out to the store and bought one for us while we ate leftovers from the meal. She refused to tell me the cost. It took over twenty minutes to get Laelia to take her darn medicine, but once in her I could tell things were going to get better.

When we got back up to our room it was  clear someone had been in our room because I only locked the deadbolt before we left and now the door handle was locked. I walked in to find  a notice that said there  had been an inspection and  I needed to clean up my room.  I felt completely violated. I wanted to crawl into bed, but Laelia had just had her casts removed (which she screamed through) and needed a real bath after  a month. I put her in the tub and she soaked while I cleaned up the room, most of which were things I had thrown out of my suitcase to run out the door. We had to refill the tub and clean out the dead skin four different times. I gently rubbed her legs over the scars and sensitive skin until my back could not lean over that bathtub anymore. Then once she was out I scrubbed the whole tub. We fell into bed around 11:00pm. I couldn’t breathe and my throat was sore. It was official; I was getting sick. My back was also pretty sore. Laelia told me she was sorry I felt bad. This child had just come out of casts and her legs were throbbing, but she was being empathetic. She’s a sweet little soul. She cuddled up with Ariel and tried to sleep for about an hour before I let her watch Snow White instead.

They weren’t able to do all the work on her braces on Monday so now Tuesday they had to have us back in. No problem we’d just stop by before or after our scheduled PT appointment. “What PT appointment?” I was asked.  That’s right, scheduling had forgotten to put us in the schedule. (Mariann was on jury duty we found out later so couldn’t fix it.) Without PT we couldn’t measure and work out the lift for Laelia’s shoe that we needed because of her pronounced leg difference now that her legs were straighter. Plus we couldn’t come back a different day because we  would fly  out the next day! It was a mess. I had to wake up early to call the hospital and then they called me back to come in. When we got in, the front desk/security people didn’t know we had an appointment and it took forty minutes to convince them to let us up. We were late for the appointment. We raced through it. Oh and before any of this on our way from the  parking garage to the main floor of the hospital the elevator started to shake violently. I thought, “Just great. Philly is finally going to kill us.”

During our long wait I started chatting up the front desk lady. I asked  if she had people pointing out the error in the artwork above her head all the time. I guess not!  I notice this like every time! Anyone else? (I had to get Laelia’s crutches out to show her how they work.)

Notice the pediatric crutches?

He’s gripping invisible hand grips. Nothing is holding this boy up!

When we finally saw the doctor that we do all this to see we  talking about his newborn and my adoption and conference and fun things. Finally  he said, “I guess I’ll see you in six months. Or whenever you can work out getting both your  kids  here.” Now if you don’t know  our history, our journey with Laelia started out with every doctor saying there was nothing they could do and finishing up our disappointing visits with, “See you in six months.” I have hated, “See you in six months,” for that very reason. But when  Dr.  van Bosse said that, it was because Laelia was walking and looking great. He said that because he had fixed Laelia’s legs. A few degrees in the knees would be smoothed out as the 8 plates did their job, but she was within ten degrees and looking beautiful! She was  ambulatory!

I refrained from hugging him and sobbing. For the first time in my daughter’s life I was  thrilled to hear, “See you in six months.” (Plus I would not mind avoiding Philadelphia for a while…)

Notice the leg difference and the white lift on her shoe?

Straight legs, feet and hips.

The legs, feet and hips she was born with.

We got  home late last night. I have had  a nose bleed off and on for  the last 24 hours.  I’m also  battling a cold. Laelia wet through her Pull Up and her  pants and onto the plane seat on our second flight yesterday. Without a change of pants I just sat her on papertowels for the flight to Denver. Then it turned out we had no time between flights. We landed at 5:50 and the next flight boarded at 5:30. Really?!!! We got off the plane twenty minutes late for the next! We had to fly home in the same wet pants because of that. Then my husband showed up in a clown car (aka his VW Beetle) because he forgot he would need my car to fit everything. But we did finally fit everything including Laelia’s wheelchair, our luggage and ourselves.  (The VW Beetle is a stupid car.)  A security personel yelled at us for taking so long. Finally we were about to take off and Laelia says in her sing-song voice, “Um, I think you’re forgetting something…” We hadn’t buckled her into her car seat.  We laughed the whole way home.  It’s been a looooooooong three days. Thankfully it was so insane that it was bearable. I think if   just a few of those bad things had happened then I would be livid, but so many things happened that I had to just laugh and  treat it like some divine test. We made it. We survived. And now we gear up for Charley’s surgery. At least his is right down the street. I’m hoping we’re all healthy by then.

 

Recovery

Thursday, February 23rd, 2012

Standing kid!

Happy kid!

Sorry I have not posted sooner. We’ve been busy bees over here lately (including dealing with an outbreak of bees in our living room). Laelia’s recovery has gone a bit better than I expected mostly because I expected the worst. It’s been three weeks since knee surgery and she’s still a bit tender. Laelia’s  been getting physical therapy every day (at home by me) and doing  hundreds of steps a day using her crutches. In order to do that I had to redo her heels. She’s straighter now, and that has made her slight leg difference more noticeable. Three attempts later I think we finally found a good height for both heels using wooden dominoes and duct tape. Of course this will all change again in a couple weeks when she gets her leg braces.

 

On March 5th we’ll be in Philly getting casts  off and putting  KAFOs on. She’ll have to wear the KAFOs (leg braces) 24/7, even to bed. That will be hard, but we’ll get through it.

Laelia got a card in the mail the other day from all her Cubbie friends at Cubbie club. So cute! She also got cards from her school friends. Laelia was approved to go back to preschool, but only for two hours a day (and no bus service there).  Her friends had missed her! It was so adorable!

Our two biggest issues during Laelia’s recovery were hair and eating. Okay so physical therapy and pain management are the real two issues, but those were expected. Eating and hair were  just hard for no reason.  She hated taking her medicine. I hid it in everything: yogurt, ice cream, smoothies, pudding, apple sauce, etc. It had a strawberry flavor already so that limited the things I hid it in. Giving it to her straight made her throw up (a gag reflex), and putting it in her food just made eating suck.  Laelia was too darn smart about it too. She would finally eat only the yogurts I brought her so she was eating like five yogurts a day. After a week (we gave her meds for six days)  she said, “I knew the medicine was in the yogurt, Mama.” Then she rattled off  every food item I’d ever hidden medicine in. I asked her if she knew because she could taste it. She told me, “I  didn’t taste it, but I knew because of your face. And you made me eat every bite.” But the reason she never confirmed it with me was because she was afraid if she knew it was in there for sure she’d have a gag reflex and  throw up. Smart kid.

With her hair we just started spending money on really good conditioner and calling it a medical expense on our budget. It took 40 minutes to get the knots out everyday. The reason is that she would sweat because of the casts and being confined to a bed so much. Then she would roll back and forth on her head, for comfort and some out of boredom. It just made her hair a tangled, knotted mess that stuck straight up. I had regular conditioner and special conditioner and spray/leave-in conditioner. We had to take the microwave off the kitchen  counter to fit our daughter on there length-wise and then wash her hair in the sink so her casts wouldn’t get wet. Here’s some before and after shots.

That last picture there (post beauty treatment) is  Laelia showing Uncle Phong her untangled hair. Uncle Phong is engaged to Laelia’s Aunt Linda, although in preparation for their engagement and eventual wedding we’ve had Laelia calling him “uncle” for probably longer (and earlier) than anyone was comfortable with. Hehe.  :)  (Click here to see the website my husband did for them to celebrate their engagement. I feel that link should come with a warning of sorts. Eh you’re on your own.) Laelia is going to be the flower girl in their wedding! She’s practicing walking now, and soon we’ll add throwing flower pedals while walking to her physical therapy regimen. ;)

And for those of you who were praying she’d get over her cough and be able to do surgery, we can finally share one of the reasons the timing was so important to us. My husband is donating his kidney to a person who really needs it and may die without it. If Laelia’s surgery was postponed then Charley’s surgery would have to also be postponed. Obviously that wouldn’t have been a good thing. But everything worked out. So here’s our new timeline for life events since Laelia’s surgery worked out.

New timeline:

March 4th – Laelia and I fly to Philly

March 5th – We get her casts removed and her KAFOs.

March 6th – Physical therapy in Philly and KAFO adjustments.

March 7th – Fly home from Philly.

March 12th – Doctor appointment for Charley.

March 20th – Kidney removal surgery for Charley.

March 20th until around April 20th (or 30th) –  Charley’s recovery.

Early May – We hope to travel to adopt our son.

Early Summer – We bring our son home.