Archive for the 'Scared' Category

Pray

Saturday, March 23rd, 2013

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Guys my heart is breaking! Please, if you pray, please pray. The orphanage my sister is adopting from is right outside Lubumbashi where rebel fighters have just attacked! The last time rebel fighters attacked (they attacked Goma), the militia killed all the women and children they could find… *after* savaging them. My nephew is in this city! Right now the orphanage itself is six miles outside the city and spared, but pray it stays out of harm’s way!

Now remember my sister is not adopting a child currently in the orphanage, but one of the next children to arrive there. So there’s a good possibility that my nephew is in Lubumbashi that is being attacked right now. That means that most likely my nephew is right now becoming orphaned and suffering abuse and trauma at the hands of the militia before being transferred to the orphanage. My sister’s heart is super heavy this morning.

Reminds me of something I read in the book 7 about Jen Hatmaker’s adopted daughter, Remy:

“During the first week of October, I suffered inexplicable sadness for our Ethiopian kids, yet unknown to us. I couldn’t quit crying. I couldn’t stop worrying. [...]

‘God is prompting you to pray for your children for some reason.’ [...]

So Brandon and I prayed desperately for our kids. Were they losing a parent? Were they suffering? Were they tender and lonely? [...]

[Three weeks later]

I went back to those dark days of prayer. It was the week she was brought to the orphanage. Shipped twelve hours north of her village, her people, everything she knew to a crowded orphanage with children and workers who spoke a different language, it must’ve been devastating. She must’ve felt so alone. At age five. Except Jesus never leaves His little ones, His most vulnerable. He was there in the scary van ride north. He was there in her confusion and fear. He was there as she was assigned a bed and communal clothes and had her beautiful head shaved. He was there that first heartbreaking night. And He made sure we were there in spirit, too.”  (pages 198-201)

UPDATE (from my sister): “Thank you to everyone who prayed this morning and this afternoon. The news reports no more fighting in Lubumbashi, as the militia group was stopped by the local army and peacekeeper forces. Please continue to pray for the people of DRC, our child, the orphanage owners/workers, and our future trip there. Only God can provide safety and peace in such a wartorn area.”

Roland don’t ever scare me like that again, you hear me!

Tuesday, January 1st, 2013

It went like this.

Super happy crazy boy one minute…

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(Click here for video.)

And seizures and vomiting the next minute.

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We had a super fun time with pizza and friends. Everything went great. I put two hyper, pizza-covered kids into bed around 9:30pm. The next morning around 8:00 Roland woke up covered in vomit.

After that he stayed in my arms for the next three and a half hours. I admit I enjoyed it. Baby in one arm and Facebook in the other. We took naps together and he snuggled under my chin. Then he would make a noise, I would get out the bucket and he would puke and then go right back to sleep in my arms. I just purred over him. He is usually so crazy rambunctious so this was nice. We even took a picture to remember this.

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But the poor guy kept throwing up which worried me. He threw up small amounts eleven times in those three or so hours. I had a cup of apple juice ready for him but he wouldn’t stop puking or sleeping long enough to get any fluids. Then right before noon he started his first seizure. I ran him out to the living room to show my husband. It was the tail end, but Charley took a video. When he started another one we ran out the door. I jumped in the driver’s seat while Charley loaded him into his car seat. He didn’t look good. The emergency room is only about four or five minutes using back roads so I took off instead of calling 911. Roland had five (maybe more) seizures after that. He was seizing in my arms as I ran him into the ER, and he continued seizing as the RN took him from me. The RN’s name was Steve and he was a big guy. My little guy looked *so* little in Steve’s arms as they quickly made their way through the double doors. Whereas I was a panicky mess, Steve calmly described the seizure as it was happening and that made me feel like maybe this wasn’t so bad. Maybe everything was fine and they see this every day and it turns out okay. So I calmed down a lot.

Then I answered about 800 questions about arthrogryposis and adoption, none of which were helpful for a seizure, but the doctors needed his history. One doctor asked if I was his mother and then demanded to know why I left him in an orphanage for almost two years. I explained I adopted him and he’s been home four months. She replied incredulous, “Wait, but you said you were his mother!”

The truth is shocking. He has no medical history. I don’t know what he weighed at birth or if he came early. I don’t know how healthy his mom was or what surprises are in his genes. I don’t really know what they gave him at the orphanage. I don’t know what drugs he’s been exposed to. I know he has a lead count of 2 (at 3 they do medical intervention) and he has had to catch up on vaccinations, but other than that I’m no help at all. I kept being asked, “Has he ever done this before?” And kept having to answer, “Not in the last four months!”

And in the back of my mind was the knowledge that he had been misdiagnosed with convulsive disorder in Ukraine. That diagnosis turned out to be false. (The “doctor” had mistook a jerking arm for a convulsion because she didn’t realize AMC came with muscle loss and he would need to swing his body or bounce his arm to move it. After meeting Laelia and seeing how she moved the doctor said Yegorka [Rolly] did not have convulsion disorder after all.) But what if it was true? It was scary to think about.

I was worried Roland would be scared of the hospital or strangers, but at this point Roland was completely unresponsive–no eye contact, couldn’t close his mouth, non verbal, limp, eyes rolled back. The nurse was checking out his head and shoulder for veins, but finally it was decided that he needed an emergency cast removal in order to place the IV. I was glad Laura (from Dr. W’s clinic) was there to do it since we know her and she is super fast. Roland had a startled response during the sawing part, but he was not “there.” His eyes were crossed and downward, the right side of his mouth did not move while the other side twisted in pain and he looked like he was in a coma. I kept crying, “That’s not normal. He never does that.”

Roland was given ativan and glucose. He was hypoglycemic with a blood sugar count of 19! Normal for his age is 70s to 80s! Eventually Roland made a noise. I asked him to say hello but he couldn’t. (I ask him to say hello about a hundred times a day and he happily complies about a hundred times a day.) He was rolling his eyes looking around the room, but unfocused. It was creepy. Eventually he looked right at me and seemed to recognize me (he had not up until this point) and he lifted his arms for me. The nurse said, “That’s the glucose working!” I asked him again to say hello and he tried so hard to speak but couldn’t. A tiny squeak came out, but you could tell he was trying. It took him a while to come out of the seizure. Eventually Roland looked at me, right at me, and said “da.” Then he looked down at his arm which now had no cast and an IV and wires and he just looked baffled.

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Roland’s right arm without a cast and with an IV.

Every finger had to be poked more than once so eventually he was just covered in bandaids.

Charley and Laelia then came through the doors at this point. We were transferred from the ER to the critical care unit as a family. Because they had to move fast and Laelia cannot walk that quickly Steve put her on the bed. She comforted her brother and enjoyed the ride. Roland was still completely out of it and barely noticed his sister.

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We left the ER and arrived at the critical care unit. Roland was connected to more monitors and the doctors came up with a game plan. They wanted to get Roland’s numbers up, keep them up long enough to make sure he was out of danger, and then purposely lower them again in order to run tests. So he went from 19, up to 120, then artificially crashed back to 40 to run the tests. Poor guy was so scared every time someone took his blood pressure or poked his finger or anything. Then when they introduced glucose again after the blood draws his numbers shot up to 250! His poor body just couldn’t regulate.

The hospital had Christmas presents for patients left over so they gave him a dog pillow. Roland hugged and kissed it (he’s really attached to stuffed animals) and then fell asleep with his wittle face pressed against the bars. That was his favorite way to sleep.

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After the tests were run we had to wait overnight to get answers. In the afternoon Roland was sick of the hospital and tried to take a nose dive off the crib and pull his wires out. I ran home with Laelia and we grabbed Roland’s pillow, blankie and teddy bear for comfort. (Also a toothbrush for Daddy.) Roland settled at that point and fell asleep… only to be woken up several times with blood pressure tests and blood draws and finger pokes and monitors beeping.

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Okay here’s what we know. We know the seizures were absolutely caused by low blood sugar. Not an injury (that boy is always bumping his head), not a brain condition (so no MRI needed) or anything like that. Here’s what we don’t know: why vomiting caused his blood sugar counts to crash that much. It shouldn’t have. Also we don’t know if the low blood sugar caused the vomiting or if the vomiting cased the low blood sugar.

Here’s the doctor’s guess after two days in the critical care unit: Roland had very small reserves for glucose from his life in the orphanage, exposure to lead, lack of medical care and poor nutrition. The doctors say that all his medical issues from being deprived early in life will be completely reversed with time and not to worry, but we will keep an eye on his blood sugar from now on. We have been educated about hypoglycemia and what to do in an emergency. (Of course our insurance denied us for the emergency medicine that would have saved our son five seizures if we had had it. Thanks insurance!) We got a chemistry quiz and biology lecture from the endocrinologist who should really be teaching in a classroom somewhere he’s that good. When we got home we had training on this new condition, a glucose monitor that even blood-phobic me can use and an emergency plan in place. After one night’s sleep at home Roland was happy and bouncy again.

 

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Just kidding guys! I’m fine now!

:-/

 When we got home we were informed that we had end of the year adoption reports to do. They ask what Roland’s diet, daily routine and health is like at home with us. It took everything in me not to write, “Like hell you care! F you!” and send it back just like that. But if Russ*a can punish thousands of dying orphans for the mistakes of 19 American families (out of 60,000 over 20 years) then I had better do what’s asked of me and what I’ve promised to do and continue to play nice. Still I’ve been pretty mad at Roland’s birth country, orphanage and birth family as well as those in my church and community who do. not. care.

*deep breath*

But now we’re doing well and everything is slowly getting back to normal. Roland says hello.

 

 

 

 

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.

Protection

Tuesday, October 9th, 2012

Boarding up the damage. Looking more like a house.

“SAN DIEGO  â€” A suspected drunken driver was arrested early Friday after crashing into a home in Linda Vista.

San Diego Fire-Rescue Capt. Tony Jeffreys told SanDiegoNewsSource.com that a young girl was asleep in her bed when the car hit the home, intruding some five feet inside her bedroom.

She, nor the driver, were injured. He was booked into jail on suspicion of driving under the influence, police said.

Structural engineers were called to assess the damage.”

 

The picture above is our next door neighbor’s house. To get an idea of how close this is to us, that’s my car in the picture. This happened a few feet from my children’s bedroom. (Although the driver would have had to go through both our cars and some bars to get to them.) Scary scary scary. We lost their grandmother to a crazy driver.

For all the surgeries my kiddos will go through while I worry, they are never safer than in their Father’s arms. Not in their beds, not in my arms, not surrounded by ten feet of bubble wrap in an isolation tank (don’t think I haven’t thought of doing that), but in God’s loving arms. That doesn’t mean bad things will never happen, but it means he’s got them. Life is so short and so precious and so tenuous.

Please pray for our young neighbor. Having a car crash through your little pink curtains is traumatizing.

My pretty girl

Tuesday, January 24th, 2012

My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

 

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a  while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

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And why the heck not:

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Well, okay she’ll be able to walk better and have straighter legs. :)

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. :))

Scared

Wednesday, January 11th, 2012

Hey everyone. I just cuddled my daughter and put her in bed. She’s happy and healthy right now. I miss her already and wish she wasn’t sleeping. I’m tempted to sneak into her room (it’s midnight) and wrap her up in my arms.

In three weeks she’s having surgery. And from everything I’m hearing it will be hard surgery. I just spoke with two moms tonight that regret having put their children through  the surgery, not because it didn’t help, but because of the pain issues. It left me feeling awful.

Please pray for us. Pray the pain issues are under control for the next year. Pray that these pain issues don’t make my husband into a shell of a person. His little girl has him wrapped around her finger, and I’m strong enough until my husband crumples. Pray for the three days after our February 1st surgery. Those are the hardest. Then pray that the months afterwards will be okay as the plates and screws in her knees do their job. Pray for healing and that the whole thing is worth it. We can’t leave her like this–she needs those knees straight. But I’m scared.

Thank you.

Knee surgery is… soon

Sunday, November 27th, 2011

Many of you know that our next surgery is going to be on Laelia’s knees. Well now it looks like we are officially scheduled for it, and it will happen earlier than we first anticipated.  It’s now  February 1st with a follow up in  early March.

So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)

This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.

But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. :)) But because she’s now at less than 40 degrees of flextion  in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many)  releases  and then two  eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.

The plates are drilled into the bone to be removed at a later date. We just got  her  hip pins out and now  she gets more hardware in her bones! Yippie hurray (sarcasm).

The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn  24/7 for a few weeks after that. There will be hard daily therapy in there  too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April  she should be pain/discomfort free depending on the braces.

This is the surgery she was going to have around her next  (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around  her birthday for the first time in her life! She can actually age without consequence this next year!

With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again.  Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away,  Laelia tells  a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s  pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream. :)

Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. :) But after  Laelia voiced her preference loud and clear we have decided not  to give her sleepy juice for her  next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. :) But without it Laelia may  be  terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So  Laelia asked me in a very mature way  not to have to do it again. She  explained how brave she is now after the blood pressure ordeal.  I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.

Plus I’ll miss that little drunkard!

I have this list of things I would love if people prayed for regarding Laelia’s next surgery.

1. That Mommy  can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…

2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)

3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.

4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.

5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…

6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.

7. Rest.

8. Peace. She’ll be scared.

9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.

10. Travel expenses.  (Surgery itself will be covered by Shriners.)

11. And lastly, although it should be more important but  it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.

Thanks so much!

 

 

 

Hip Plate Removal Surgery

Thursday, November 3rd, 2011

Sleeping Beauty is out of surgery!

(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)

Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.

I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot. :)

It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?

You get them drunk. Really drunk.

There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.

 

Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!

She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.

Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.

She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!

This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. :) She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!

I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves. :)

By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. :) It had only been twelve hours!

Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!

We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. :) I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)

We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)

Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.

Does this look like a kid who had surgery this morning???

The day before surgery.

Tuesday, November 1st, 2011

Three airplanes later and Daddy finally joins us!

I got lost at the airport tonight because of the weird roads (PHILLY!!!), but we did find Daddy and then we went to meet our friends at the local diner.

Our buddies!

I had my first Philly cheese stake. Now I can say I’ve done it. :)

Sadie (also an AMC’er) and Laelia showed off their standing and walking skills at the diner.

Once we got home, and after my husband showered, we were finally feeling like a family again. That is until Charley showed me that he brought with him a ton of technology so I can blog! (Bye honey!) So I’ve been lost in my computer for the last couple of hours while my husband has been putting up with all of my daughter’s new discipline problems developed over the last nine days. :) Hehe.

But seriously we have missed Daddy. He is loved. He is appreciated.

Good news! We got a call this morning that Laelia had been bumped up to the first surgery of the day tomorrow! That’s a super great answer to prayer since my daughter is terrified of the hospital. I was so afraid that she would be a scared, shaking mess for the whole day, but now she’s first up!

We have to leave the RMDH at 6:15 a.m. to get to the hospital by 6:30. That will be difficult since we never got used to Philly time and have been sleeping in until 11:00 a.m. every morning and calling it 8:00. :)

In other good news, Laelia is not sick! No coughing, sniffling or sneezing! That’s a miracle since so many illnesses have been floating around.

Tomorrow is surgery! Finally! I see a light at the end of the tunnel!

Update: It’s now midnight. Laelia is not sleepy. Kill me now.

Updateness: Midnight has come and gone and that cheese stake is not sitting well. Maybe some Canadian candy will help…

Another update: It’s official. We’re not going to get much sleep tonight.

So much this summer!

Saturday, July 2nd, 2011

I realize that I have been behind in blogging, and I’m trying to catch up since we have a crazy summer ahead of us that I’m sure I’ll want to blog about. Now that I’m back from my work trip in Seattle I can focus on what’s ahead. Our plans for  the next month  (for those of you who have asked repeatedly) are as follows.

This weekend is our July 4th weekend and includes a party and lots of other activities.

July 6th-10th Laelia and Mama will be flying to Kansas City for the AMC Convention.

July 11th Laelia starts Summer School!

July 19th-July 23rd Laelia and Daddy fly to Philly to get a check up, a surgery date for the Fall and return the manual  wheelchair. Mama will be flying to Northern California to see her brand new baby nephew and then meet Daddy and Laelia at home. Our flights there and back are within minutes of each other.

August 7th (tentatively) I’ll be giving a talk  about special needs families to New Vision in San Diego.

So that’s what’s coming, but so much has happened! I know I just don’t have time to blog about it all, but let me give you the highlights in no particular order.

 

Baby Levi!

Laelia’s only cousin! (Born June 26th)

Little Levi  had a high and irregular heartbeat and presented signs of distress. But right before my sister, Emily,  was going to  have a C-Section, Rock music saved the day and he came out on his own. (You’ll have to ask her about that one. ;)) He was born with a fever and needed a tiny baby IV. He’s doing well now, but my sister is really sick and, you know, newborns are freakin’ hard! If anyone in the Placerville/Cameron Park  area  wants to make them some anonymous meals (so my sister won’t feel obligated to be coherent enough to be social or say thank you) that you leave at their doorstep, ring the doorbell and run away, they would LOVE that.

I can’t wait to see  Levi  in three weeks! (My internal voice got really squeaky there, in case you missed it.) :)

Charley’s family all came over so Laelia could teach them how to read a book on the iPod Touch.

They taught her how to make kissie faces while at the zoo.

And Grandpa (it was his birthday) shared his birthday hat!

Okay I have like no good pictures, mostly because her grandparents took most of the pictures. But you get the idea. :)

We celebrated Father’s Day by making Daddy bounce us on the horsey for a loooooooong time.

We celebrated Jared’s birthday at Karl Strauss. The view was incredible and the weather was great! Fun times!

Adam and Lali looking at the water.

Adam and Lali looking at each other.

Happy Birthday Jared!

Then there was the luau!

Luau Fun!

We got free tickets to a luau from our friend, Rocky! Yum!

But on our way home from the luau, we almost hit a runaway doggie when he ran into the road!

We took him home, fed him, gave him water and loved on him.

This little doggie was running in the road, and it was late enough that no one was around. I got him then looked around for his owner.  No luck. So I made my reluctant husband take him home. We gave him water,  fed him chicken and rice and gave him cuddles. Laelia fell in love entirely too quickly.  She is over the moon. I said, “No we’re not keeping him. I never wanted a dog.” Laelia misheard me and said, “I never had a dog too! Let’s bring him home!” Ugggggggggh. No doggie. Quit falling in love with him. Quit it! :)

I put him on Craigslist under lost pets, put an ad (Found Dog) in the paper and put him on Facebook. The next morning we took him to the Central Shelter in San Diego so they could see if he had a chip they could track. They said it’s best to keep him there where he’s not terrorized by our three cats who are ALL bigger than he is. They tended to his ear (that was bit) and fed him real dog food. They will call us in four days if no one comes for him. I did get one phone call about him, but it turned out to be a dog lover who just wanted him.

Laelia has been asking about her doggie. I had to explain that if she was ever lost I would want someone to return her to me and not keep her. It’s been a bit emotional for all the gals here since the doggie incident.

My family and friends are taking bets on whether Laelia ends up with her doggie. :) Daddy put his foot down, but we’re pretty pathetic and he can’t hold out forever! :)

In other craziness the other day  my tire blew out on the freeway with my daughter in the backseat. I called my insurance who could get a tow truck out there in one hour. We were told we weren’t safe and if I couldn’t pull my car over more I’d have to call 911. (I was on the side of a multi-lane freeway, underneath another multi-lane freeway. The noise was deafening and the traffic was shaking the car pretty bad!) Just then (like three minutes later) a rescue vehicle paid for by the state saved us! I cancelled my tow truck and had my tire replaced for free since it was still under warranty! All in all, it was the best that could have gone. Laelia even went home from Discount Tires with a giant yellow balloon and slept through the whole drama on the side of the road. I was about to have a heart attack, but she thought it was a fun day. Typical. :)

In other scary news we had a drive-by shooting on our street. Don’t know what’s going on with that, and it was not at our house, but we’ve been spooked ever since. Here are some pictures of the house that was hit.

Some prayers for safety would be appreciated. It has nothing to do with us, and we have a long street and this was at the other  end of it, but it’s still scary. We’re a good community and my neighbors are friendly. The cops have made themselves a more visible presence since the incident, and I now often pass a police  vehicle, or see them  talking/being friendly with the neighbors. They want to keep this neighborhood a safe one. (I jumped while writing this when I heard some booms, but it turned out to be fireworks. Oh right July 4th. Whew.)

And I want people to keep in mind that this neighborhood is 100 times safer than our last neighborhood. We moved for safety reasons, but San Diego is a crowded place and when bad things happen they happen around LOTS of people. There were three people shot and killed down the road from us in our last place that I know of! The police reports that we’re signed up to get for our new area are not nearly as  bad as they were when we lived  in the city. Still, we’re taking precautions.

Okay that’s all my news. I know I glossed over it all, but I’m out of time. We have a ton of busy times ahead!

Oh I forgot about Arthrogryposis Awareness Day! I’ll blog about that tomorrow!