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.
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.
(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???
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.
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!
This is baby “Joel.” He has arthrogryposis like some of the best people on this planet do. Below are copied and pasted articles and stories of the reality for those with arthrogryposis in certain parts of the world. Donating a few dollars to Joel’s account by clicking on his picture will help save him from this fate by off-setting the cost of his adoption. He could be Laelia. He is so similar to her it’s scary. He haunts me. Please help me support him.
In you the orphan finds mercy.–Hosea 14:3
Never take advantage of any widow or orphan. If you do and they cry out to me, you can be sure that I will hear their cry.–Exodus 22:22-23
Around age four, children with special needs (despite maybe having no mental problems) face mental institutions.
Little has changed since that video above was made by the Today show.
And I just imagine Laelia here and it makes me hurt deep within.
Below are other stories.
“Lillian Horodysky, founder and Executive Director of DVOU commented on the alarming condition of orphanages in Ukraine, ‘There were rooms after rooms full of children, lying in their beds, just staring up at the ceiling. All that could be heard was the rustling of their covers, if they moved. It seems as though the thoughts in my own head sounded louder than a disabled orphans barely audible sigh.’ The conditions of most Ukrainian orphanages are deeply concerning. Most orphanages for children with special needs are located in remote areas of Ukraine[...] and orphans’ chances of survival are dramatically reduced even further because of substandard medical care, childcare and little or no education.’”
(http://www.artukraine.com/uasupport/dvou.htm)
Because I rescued the poor who cried for help, and the fatherless who had none to assist him. – Job 29:12
Learn to do good. Seek justice. Help the oppressed. Defend the cause of orphans. Fight for the rights of widows. –Isaiah 1:17
“Within two weeks of arriving in Ukraine, Nita went to her first orphanage, Veloska, where God broke her heart for the plight of the orphans. She discovered a system which is the same throughout the former Soviet Union. Children are housed in different facilities depending upon their mental and physical conditions. It is estimated that there are over 60,000 ‘orphans’ in Ukraine. The vast majority of these children have parents and have been placed in the orphanages[...] simply because they are handicapped. When the children reach the age of three to three and a half, they are evaluated by a panel of experts who determine whether these children are ‘normal’ or ‘retarded.’ Once a child is labeled as ‘retarded’ (or ‘imbecile’), they are sent to an orphanage for the mentally retarded where they will remain until they reach adulthood.” (http://www.godshiddentreasures.org/orphanmin.html)
I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me! –Matthew 25:40
“Working in Ukraine, he [Terry Hallman] discovered that the standards of care given to disabled children in many orphanages were extremely poor, and that children often stood little chance of surviving into their teens. Terry wrote an insightful and shocking article, ‘Death Camps for Children’, which explored and exposed the key reasons behind the issue, such as a lack of funding, limited medical knowledge and large-scale corruption.” (http://www.justmeans.com/reports/Ukraine–Death-Camps–For-Children/525.html)
Speak up for those who cannot speak for themselves; ensure justice for those being crushed. Yes, speak up for the poor and helpless, and see that they get justice. –Proverbs 31:8-9
“When we arrived at the orphanage we were met by older children without coats, they were begging us to give things to them and not to the directors. It is very hard to write about the rest of this part of the trip. I cannot give a step by step account because we were all in a state of shock. We spoke to the director about our program and he told us that he knows the children need more but he said, ‘I cannot ask my workers to do more, they work very hard, clearing the road,
shoveling snow, cleaning the floors and the children, they have not time, they must work very hard all day and then they must dig graves and bury children.’ What do you say to that? Still, the staff took us around to show us how it is. Words don’t come to mind, most of our team was crying and could not stop. Dark hallways, screaming, children clustered together in freezing rooms, some in strait-jackets, haunted looking crying, asking if they were good, asking for food. Water dripping from the dark ceilings, mold everywhere. We held children who were 10 and 13 years old in our arms like infants. One team member said later that she never knew that humans are like fish and will only grow to the size of their environment. One team member threw up outside. Children never leave their beds in some rooms. These children are ages 4-16. In other rooms they leave to go to a room with just a bench and nothing else in it. They hold each other -rocking one another. I have never seen such deprivation and our photographer said it best when he said it was a concentration camp for children. Sorry, this is such a hard part to write but I looked in the eyes of many children who are dying. Their tiny bones fit into the palm of my hands. Their skeleton faces begging for help. No one in our team has really slept since. We talk about it but just end up in tears. I promised the orphanage staff we would come back with a team of people to help them. They are counting on it. The director told one team member that 20 years ago he asked for help there and the soviet minister came and visited. The visiting soviet minister told the director, ‘why do you keep these animals alive? You can kill them, you know how to do it you are a doctor.’ He never sent any money or aid to the orphanage.” (http://eng.maidanua.org/node/581)
Do not withhold good from those who deserve it, when it is in your power to act. –Proverbs 3:27
Therefore, to one who knows the right thing to do and does not do it, to him it is sin. –James 4:17
“End of the Road. The children’s home at Kalinovka in rural Zaporozhye Oblast can scarcely be called a ‘home,’ and the children, 160 in number, ages 4-40, are by no means typical ‘children.’ For this facility in rural Ukraine is the end of the road, both literally and figuratively, for some of the oblast’s most severely impaired children–kids with neurological, cognitive, and other crippling disabilities. Alyosha, for example, age five, lacks hands and feet. But he is only one of many at Kalinovka needing care and affection. Between thirty and thirty-five children are confined 24/7 to beds in a ward that has until recently been off-limits to visitors. Permanently institutionalized, 80% of the children here seldom see moms, dads, or relatives. For the 100 or so children who can walk, there is little in the way of planned activities or learning. None of these children, so we were told, is ‘educable.’ Nothing could be further from the truth. Clothing is often shabby and dirty. A number of the girls have Down Syndrome; many boys here appear to have some degree of cerebral palsy or similar neurological impairment; others lack arms or legs; some appear autistic. In 2005 a child, Nadyusha, with a congenital brain hernia was sent to Kalinovka, probably to die; still untreated, she has managed to stay alive. There is no doctor in daily residence; a physician comes once a week. The bedfast children seldom, if ever, go outdoors. As a result of limited care and nutrition, the mortality rate at Kalinovka is said to be eight to ten annually.” (http://www.deti.zp.ua/eng/show_article.php?a_id=90002)
Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you.–James 1:27
“And so it began. The road to teaching Haven new things. The road toward healing. The little angel was locked away in a room for the last two years of her life, isolated from everyone because orphanage staff were afraid to “catch” what she had if they touched her (autism, becoming non-verbal). Life for Haven was about to change. It struck me this week–the change in Haven’s life has been nothing short of miraculous. I have looked at my sweet little girl after being away from home for a while, and something has struck me over and over again. Haven has hope! It’s not that I did not know it before, because I did, but this time it’s different. I see in Haven what every single child waiting deserves. Hope! THERE IS NO HOPE FOR ANY CHILD IN AN ORPHANAGE! Nothing. Zero. Zip. Haven would absolutely have ended up in a mental institution for disabled adults. What kind of hope is that? What kind of life is that for any human being? Adoption is their ONLY HOPE! And in most countries, foreign adoption is their only hope. There is a less than zero percent chance that either Haven, Hannah-Claire, Hailee or Harper would be adopted by a local family. They have no value in their own country. They have absolutely no worth in their society. They are are defined by their ‘special needs’ in their countries. Their only hope is for a foreign family to come and rescue them. Period. (http://www.nogreaterjoymom.com/2010_04_01_archive.html)
Proverbs 24:11-12.
11 Rescue those being led away to death;
hold back those staggering toward slaughter.
12 If you say, “But we knew nothing about this,”
does not he who weighs the heart perceive it?
Does not he who guards your life know it?
Will he not repay everyone according to what they have done?
And anyone who welcomes a little child like this on my behalf is welcoming me.–Matthew 18:5
Last night some guys broke our window for the SECOND time in just under four weeks. (Causing us to fill out our second useless police report since moving in.) My husband heard the noise and a few guys running away as he was putting Laelia down for the night. He told Lali it was nothing and tried to not let her know there was anything scary going on. She got to stay up later just so we could make sure no one had broken in and that she was safe.
Scary.
They broke that window the first time the day after the house became ours. Brenda swept up the glass before we moved in, and Alan replaced the window for us just two weeks ago! (Both Fellowship folks.) We also found broken bottles around the area and shards of glass in the grass. And cigarettes in the driveway… and we don’t smoke. This time they probably used a base ball bat. The screen stayed in tact (My dad says, ”When I make a screen, I make a screen!”), but the window shattered and shot glass across the garage. Charley spent last night cleaning up glass. I spent the afternoon cleaning glass out of the cat food, the baby’s crib and all the other places Charley couldn’t see last night. It really rips away my sense of safety; I had nightmares all last night. If they had decided to destroy the next window over to the right they would have shattered glass all over my daughter’s face.
I love clinics. Not. (I’m being super mature today. Not.)
At least I know how they work now so it’s not so overwhelming.
I got the recorded reminder call two days before our appointment with the following list of things to bring and do:
1. Your appointment is at 8:15. (We showed up at 8:40, and then didn’t have to wait around for the appointment. Hehe. :))
2. Bring all equipment and braces to appointment. (I forgot.)
3. Bring your insurance card (they didn’t ask for it), immunization record (didn’t have), and child’s social security number (couldn’t find).
4. Bring $ for parking. (It’s free on Fridays, duh.)
And here’s what they didn’t ask for:
1. $40 copay. (Apparently “clinic” doesn’t always mean “free.”)
2. Child. (Ha!)
3. List of questions and child’s medical history. (Very necessary.)
So I spoke with the doctor and we’re very glad our orthopedic guy (AFO-maker) suggested him. This doctor does NOT do surgeries, but instead looks at the whole body. He noticed that in every one of Laelia’s x-rays she was “backed up.” We knew she was having trouble with constipation, but we also knew this was normal for AMC kids, or kids with physical disabilities in general—something about not having the muscle strength to help with the digestive process or not being active enough. But I hadn’t given it much thought until she started bleeding every time she went #2. (To the teenage Laelia who is reading about her childhood. Yeah I put that on the Internet. And I showed it to your boyfriend. Love you!)
It turns out that Laelia’s sacrum is not fully formed. X-rays clearly confirmed this. I remember doctors looking at her sacrum in the past, but there were always bigger issues at hand so it was never the main focus of attention. Now it was the biggest issue we were looking at, and all the potty questions followed. I felt bad for having a three-year old still in diapers for one thing. (Although that is our next goal in OT.) She goes #2 in the potty, but still goes #1 whenever, wherever. The questions scared me a bit. I didn’t even laugh when my daughter removed her sock and threw it at the doctor’s back while he studied the x-rays. (Which was pretty funny.)
Fortunately there is an all-natural, tasteless medicine that will help. The only problem is that we have to give it to her daily, for the rest of her life. Don’t get me wrong, I’m grateful for the fix, but having to give my daughter something everyday will be a challenge. Antibiotics everyday for her infection was hard enough. I know there are moms in much worse situations than I am, with real medicines and worries, and I won’t dwell on it, but I’m bummed about this news.
Laelia and I both get a little nervous about clinics. It’s always emotional no matter how routine. I always come home a little down and out. So when Laelia saw the fountain outside of Children’s Hospital with statues of children playing in it, well…
(*THE FOLLOWING STORY IS AN ADMISSION OF GUILT. DON’T TELL CHILDREN’S HOSPITAL!!!*)
So she really wanted to throw pennies in the fountain. “Pweeze Mama?” And she was a bit scared and a bit weepy about going to clinic, meaning her little request was pathetic and heart-breaking. So I said she could. But when we approached the fountain (carrying the nine pennies I found in the bottom of my purse), we realized right away that this was NOT a coin fountain. But after a few seconds of internal debates, we cheerfully threw pennies anyway. Laelia’s wishes included chocolate pudding, a baby brother, a baby kangaroo, more sitting breaks during PT (fat chance, kid!) and more pennies. (That’s my kid!) Then she handed me a penny so I could make a wish. I wished for a nap. Laelia quickly informed me that she had made an earlier wish that we would play and not nap when we got home. I must have missed it. Uh huh. Yeah. Wish voided.
So we walked out of there with a stack of prescriptions and they are going to try to add us to the muscle dystrophy clinic so the doctor can keep up with her. Arthrogryposis is neuro-muscular thing so they’re going to try to finagle us into that clinic. Unlike Seattle, San Diego doesn’t have an AMC clinic.
So that was our clinic day. It’s over now. Our brand of normal often gets interupted by these things, but now it’s back to real life. And if anyone from the hospital asks if we know how the fountain got clogged and flooded, we’ll just point out that we don’t have a baby kangaroo and demand our money back.
The first 24 hours are the worst. If your child is getting this surgery and you can get through those hours, you will have gotten through the worst your child will ever go through. Surgery itself is cake compared to this.
She cried. And cried. She arched her back and grimaced. She would sweat profusely through her pillow case and sheets. She didn’t speak. She squeezed her eyes shut but couldn’t get respite through sleep. She cried. And moaned. And cried.
And we couldn’t do anything about it; just be there watching her in pain. And we couldn’t leave the room to use the bathroom without her startled cries and elevated heart rate (machine beeping at us) pulling us quickly back to her bedside. Sometimes she wanted me to hold her hand. Sometimes she hated to be touched. Sometimes she wanted a hand on her tummy. Sometimes she just wanted to scream in my face and look at me accusingly for not fixing her pain.
Charley adds: “She was reduced from her super articulate three-year old self, to a tiny baby without the ability to communicate anything except need. She would cry something that sounded like, ‘I want I want I want I want…’ but without a way to finish that sentence. It was almost a full 24 hours before she learned, through the pain, to form a full sentence again. It was, ‘My legs hurt a lot.’”
I started to second guess my decision to have this surgery done. I kept thinking how much she has gone through, all to possibly one day stand or walk. This was too much; I was a terrible mom.
The incision site was above the cast line.
The casts were not a spica, but instead full leg casts connected by a bar. This is so she will have more mobility later, but for right now it’s just hard to move her. You cannot move the cast separately from the hip or twist her or lift one side or anything you need to do! It’s so hard, and I’m so intimidated to even touch her.
My husband broke down again somewhere in the first few hours. For some reason that made me stronger. Because if he was the strong one, then I would break down. I don’t know how any single parent goes through this.
Nurses, God bless them, were wonderful yet we wanted them to all go away. They had to check her vitals every 15 minutes. So every 15 minutes Laelia screamed her head off. But it was different than when she’s throwing a fit or when she’s got a boo-boo. She was downright scared. Her cries were desperate and hoarse as if she were being tortured. Laelia couldn’t stand having the blood pressure cuff on her arm. So I took it off. Then a nurse came in to put it back on, but not to take her blood pressure–just to leave it there. So I took it off. Laelia was scared of it and in a lot of pain so I asked it be kept off until they needed to use it. When I got the “it’s the hospital policy” line, I tried using her amyoplasia as an excuse. I said she was special and this hurt her. I lied through my teeth which is quite unlike me. (Also I forget that people have actually heard of her condition at this hospital.) The nurse wrapped it onto the bed rail and hit the top of it in frustration and left. She came back later with her superior who put it back on my daughter. I told them all that if they needed to take her blood pressure every 15 minutes they could darn well come in and do it themselves as opposed to leaving it on her arm to go off automatically and freak her out the whole time it was on. I was at my wit’s end and I made it clear that I would take it off as soon as they left the room anyway. I watched that cuff try to take the blood pressure of the bed rail more than once. It gave me a grim satisfaction.
Lali refused to keep the oxygen in her nose, so the doctor put it on the top of her head unintentionally making those who tried to cuddle her light-headed. Despite being largely mute, she was very particular about her own care.
Laelia also sounded like she had a bad cold. She was congested due to some fluid in her lungs from intubation. And that meant she had to have breathing treatments done. Which she hated. A lot. And up until now things had been done to her, so when she finally had the power over a part of her own care, she was darn well not going to participate. But when her breathing was affected by the junk in her chest we had to force the respiratory device into her mouth and tell her we wouldn’t take it out until she breathed into the device. It worked, but the last thing I wanted to do was force more hardship on this little soul.
The respiratory therapist gave Lali a gorgeous black-and-white stuffed tiger as a reward for doing her first treatment. Charley gave Mr. Tiger a voice from then on out, throughout our stay. Subsequent breathing treatments were done after a few bribes or threats of, God forbid, pausing one of her two billion viewings of Finding Nemo until she cooperated. (I’ve now seen that movie more than the animators themselves. But I’ve got to admit it was much preferred over half of what children’s programing had to offer. Dinosaur Train? Seriously?)
The next morning Laelia was still on IV meds, an epidural and a suppository. Finally she got some water and a couple bites of my breakfast pop tart (that she demanded) down so they switched her from the suppository to oral medication around lunch time. And Mama was the only one who could give it to her. So I had to squeeze her cheeks so hard it broke the capillaries in order to force one milliliter of medicine at a time through her teeth until she’d had five milliliters. During her second dose four hours later she choked and threw up all over me. Because the puke was on her IV, blankets and pillow case it meant that we had to move her to change those things out. And moving hurt her. She screamed in pain for half an hour straight after that. So finally after was seemed like hours, the doctor decided to up her epidural medication and add two somethings to her IV. About five minutes after that happened, she stopped crying and announced, “My lips are purple. And I am so very pretty.” And then she argued about the amount of strawberries the hospital had stocked. She was so very drunk off pain meds. But for the first time in too long we were able to just enjoy her.
Charley and I were so very tired. Every little stress seemed to be magnified. The cafeteria had hours they were open that never corresponded to hours we were available, we never had one dollar bills for the vending machines, my cell phone only held 50 texts (40 texts caused large delays receiving messages) which meant I was constantly deleting all of my important messages everyday to allow more to come through, the lack of sleep hurt us physically even with trips to RMD house, driving through the ghetto almost resulted in accidents or death of stupid pedestrians daily, and on top of these small issues, we felt personally responsible every time our daughter whimpered.
Many things are awful about surgery, but I think inability to sleep is the worst. Even when she was asleep she would cry. She would do a “crysleep” for ten minutes then wake up and cry out loud and then fall back to crysleep. The crysleep sounded like a snore only with her voice box making a high whine sound every time she exhaled while she grimaced. It was very disconcerting.
Even in a deeper sleep than crysleep her heart rate was 140! That’s the same as I have when jogging!
Sleeping was impossible with all the nurse interruptions, as unobtrusive as they tried to be. Even the guy who came in to empty the trash caused her fear and crying. We wished we could have had a heads up and just moved the darn trash can to outside the room before he came in! Another doctor came in at one point to look for something he’d left in the room earlier causing panic. Someone came in to lay a tray of food down. (I wish they could dress up in a different costume so she’d know it was food coming and not someone coming to check her wounds. Maybe if they dressed up like giant chickens? Shriners you can use that one. ) One nurse, Wanda, came in often to add meds to her IV or switch out the bag. Laelia screamed every time until I told her that Wanda was coming to “play with her machine” and she wouldn’t be touching Lali at all. That line worked better than, “She’s coming to add medicine to your IV.” Laelia finally was quiet every time Wanda came in after that.
There were moments of less pain. Not really pain-free moments, but starting Wednesday afternoon we had times when we could talk to her and she would talk back. We were encouraged by the pain management brochure we were given to talk with her about happy memories and future trips. So of course we talked about Disneyland. We sang the songs to her favorite rides like It’s a Small World and the couple of songs we knew from the Tiki Room.
We also read her lots of books. I was getting encouraged when she could sit through a whole book even if she was crying the whole time. She wanted me to read to her, and would grab my hand if I took the book away thinking she was in too much pain. She would moan while I read, but I went through the fifteen books of hers we brought with us over and over again.
The second night was also hard. We decided to send me (Alexis) to the RMD house to sleep through my worry for a few hours, then I would come back and switch off with Charley. I broke down in the elevator before reaching my room. And while I was telling myself she was fine, she wasn’t. Charley was with her the second night, so I’ll let him tell this story:
“The second night Laelia was given Valium to prevent muscle spasms. It was supposed to be the first of several regular doses, but she started reacting to it almost immediately. She wanted her blanket off, which I accommodated; then she wanted her gown off, which I helped her unsnap and remove. Then she just started clawing at her IV and the sensors on her chest and finger. She wanted them off, she wanted everything off, and she wanted to get out of there. I called the nurse and doctor in, and they confirmed that Valium could cause this kind of disorientation. The nurse helped me get her into my lap–it was the first time either of us had held her since the surgery–and after about 30 minutes of singing and talking about Disneyland rides, she calmed down. Then the nurse gave Laelie her first dose of Tylenol with Codeine, which helped knock her out and give her 3-4 hours of continuous sleep. During her whole stay in the hospital, it was the most sleep she ever got at one time.”
So I came back from the Ronald McDonald house Thursday morning to find out that my daughter had a Valium trip that make her want to take off her own skin while my husband held her and cried into her hair. Laelia looked miserable and so did Charley so I kicked Charley off to the house to sleep off his trauma while I took the next shift. He had to leave through Laelia’s painful cries which was hard. But she settled down after a bit.
During this time I got a text from Ryan’s mom. (Back story: This is the family we went to Seattle Children’s hospital with to get our amyoplasia diagnosis. The same place that gave us no orthopedic hope for my daughter. Which directly led to our AMC support group contradicting them and sharing about Shriners in Philly which ultimately lead to this very treatment course we are pursuing.) Ryan was scheduled to have the exact same surgery that Lali just had that morning. (They worked it out so we could have the same surgery week together.) Well Ryan had just flown all the way to Philly from California with both parents in tow only to find out that his surgery was cancelled due to slight congestion. Which sucked.
By Thursday afternoon before 2:00pm Laelia’s epidural and catheter were removed (not as traumatic as I would have expected, just a quick pull for both) and we were allowed to go back to our neglected fifth floor room. More magical medicine was given to Laelia so she slept the whole way there even when her bed got bumped pretty hard into the door. That evening after two more viewings of Finding Nemo it was becoming obvious that Laelia was in more discomfort than usual without the epidural helping. The nurse brought some Tylenol with Codeine and I forced it once again down my daughter’s throat through her teeth. It took about twenty minutes to kick in. Once it started working, it worked well. There was no doubt when it kicked in.
Laelia was doing better, inviting all the nurses to Disneyland with her when we got home and generally saying demanding things like, “I wanna go to Disneyland now! DADDY DON’T LAUGH!” But I was sure there was no way we were making our flight the next day. She still had such a long recovery ahead of her. It still hurt to touch or move her. And she hadn’t pooped in a week! Tomorrow I had to figure out where we would stay, how to change our flights and how to avoid blowing our trip budget to smithereens.
Needless to say I was shocked in the morning when our doctor came in and we were discharged that afternoon! (More to come in the next blog, Love is Kind.)
) 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.
