Archive for the 'pain' Category

The queen of interruptions.

Thursday, February 9th, 2012

Standing tall!

New height: almost 38  inches. New height with crazy bed head:  a good 39 inches.

Haha! This is what happens when your broken camera takes five minutes and two battery changes to take  a picture.  We get a fish face that got tired and turned into a weird Mary-Kate and Ashley pose! Hahahahaha! And the wild hair gets tamed every day and still looks like this.

Okay Laelia has given me twenty minutes to blog. The little queen is being gracious today. I’d better write something fast!

It’s been a hard week, but as with other major surgeries it’s always  one week of bad (the first three days are terrible), then one  week of hard  followed by  a lifetime of permanent correction. The difference here is that there is hardware inside Laelia’s knees that are always working. Last time she had something in her bones, it was simply to hold them in place. Now it’s actively working to straighten her knees. This will be harder than usual, but she’s excited to have straighter legs. They are so straight now that she can’t touch her toes! Her poor OT and I will have to re-teach her her how to put her  pants on. :)

Unlike her other surgery where she was so “breakable” afterwards, this one requires her doing weight bearing ASAP. And she started standing the next day after surgery! It wasn’t pleasant, as you can imagine, but it wasn’t impossible.

Laelia is interrupting me to tell you about the pirate. She saw a man with a long beard in the waiting area and she yelled, “Mommy! A pirate!” She was completely thrilled. I wasn’t sure how to explain he was Amish, so I just let her think a pirate was there with his kid. Even pirates  need health care.

Speaking of interruptions, Laelia is the queen of them. This week it has been just me and her all day every day. Today she’s letting me blog, but only two minutes at a time before, “Mama my leg hurts! Mama move my pillow please! Mama I want a cookie! Mama I threw the batteries out of the remote again! Mama I want to watch Tangled for the thirty-sixth time!” (Not exaggerating there. 36 times in eight days. Tangled is the new Finding Nemo.)

Oh and I made her cookies. It was a nice break to bake something when Charley got home. Laelia wanted a red cookie, but for as much red food coloring I put in the cookie dough they still came out light pink. So I added a ton of blue and green to it. That made it pretty dark colors.

Three guesses what color our poop is now. Oops.

Laelia is interrupting this blog post again  to tell you that her imaginary friend was flying the plane to Philly! (The first plane ride.)  “Guy” has been Laelia’s imaginary friend for years. We don’t know where she got the name from since we don’t know anyone named Guy. But Chelsea made Laelia a tangible version of Guy that we accidentally left at home along with her sandwich for the plane and her walker that we had to return to Shriners. So she was sad, but when they announced the pilot’s name was Guy she was thrilled. I told the flight attendant that it made her day. :) Guy came after all. And he flew the plane!

Okay Laelia is taking a little nap. Time to blog some more! Interuption free!

She wasn’t really asleep. Now I’m back.

Okay she promises to sleep now…

So now that I have my blog to myself again, I wanted to briefly talk about Laelia’s care. Taking care of a little one dealing with discomfort or pain all day, every day, without breaks, who screams for you when you take two minutes to use the bathroom (ahem)  is one of the most rewarding jobs I’ve ever done. And I’m serious. I’m behind at work, laundry, bathing and I’ve all but declared email bankruptcy since I don’t see me even reading all of them, I’m a day late at planning Laelia’s school meeting and I don’t even have a doctor’s note yet, but it’s rewarding work. Sometimes I can use my magic to make booboos better. Sometimes I can distract her out of losing it. Sometimes my cuddles are more powerful than surgery cuts. And often I just hold her and we cry together. But every day she gets better and better and it feels rewarding.

Our week of bad is over. Now the week of hard begins. Physical therapy gets kicked up a notch. Respect and no whining (and using the potty) get reinforced. But hard is not bad.

We have a gal living with us since she couldn’t stay where she was. She’s looking for a permanent place to stay. I was worried that Laelia would keep her up all night (and she  has a bit) and that  it would be stressful. But it’s been really nice. Our house guest does dishes for one thing. :) And Laelia looks forward to seeing her for a bit every night before bed. It’s been a blessing.

Our first full night home was Monday. Lois from our church brought us a meal. It was the first real thing I’d eaten  that day. It gave me the strength to stay up until 2:00 am finishing up my work from home and taking care of my daughter. We got another meal last night too. It’s been a life saver. Truly.

Laelia is interrupting to ask if I’m stiiiiiiiiiiillll blogging?  Now she wants to say that she hasn’t taken any pain medicine and she’s feeling better! (I snuck some into her yogurt before bed, but she doesn’t have to know that.) She is going all day without pain meds now, and just getting a half dose before bed. She says her legs are annoying right now. I’ll take “annoying” over “painful.”

Thanks everyone for your prayers! I feel like lately I’m always saying thank you, but I don’t mean it any less. Thank you.

Gotta go. The little queen is wanting someone to play with. I tried to tell her that that wasn’t exactly twenty minutes with all the interruptions, but she said she counted in her head. To what I wondered. “To twenty! Lots of times!” Ha! I tried to give her a math lesson but math hurts her legs. Yeah. *sigh* I’ll add that to the list of intangible things that hurt your legs, spoiled little queen. :)

I wuv her.

The cough that prayer cured.

Monday, February 6th, 2012

Future Doctor

We are back from Philadelphia with a princess in full leg casts. For those of you following  the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.)  They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already  know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.

When I was a little girl I read this boring  biography of Hudson Taylor. (Note:  NOT boring if you’re  NOT  ten years old and it’s NOT required reading.) He’s the guy  who prayed a lot and God provided, often last second or in a way that would make a good movie.  Our last week seemed like that.

For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and  beg the surgery would  just  please work out the other half of the time. You see our daughter had a cough.

Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.

Our good friends  have a  son who has the same condition as our daughter  and who also fly the same 3,000 miles to the same doctor in Philadelphia. He  had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.

Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but  they weren’t  in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.

Sunday morning rolled around and we boarded  three planes with  the coughing monster.  The weather had changed and we  had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or  sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!

Monday our appointment was at 2:00, but everything at the clinic ran late and  we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow  and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along.  At first the surgery was cancelled, and we started  making alternative plans (that sucked). The nurse coordinator outright told us  Laelia would  not be getting surgery. It looked like Laelia and I would  have to live in Philly for several weeks at one point.  But they had to get the anesthesiologist involved for the final determination.  Being after hours (now almost 6:00 pm),  we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night  for the cough to get better.

And it didn’t.

So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough.  We planned to  pack our bags  home that  afternoon and try to get flights back that evening.

Then  we met with the head honcho anesthesiologist.  He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another!  She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!

As soon as  we left the hospital she  started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when  we left.  The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She  had one more night  to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!

Of course she kept coughing. She coughed all night. I couldn’t give her  allergy meds  since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.

I had a very small panic attack that night which defied logic because I was ready to go home and at peace  with surgery being cancelled. My panic  was obviously  not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky  to be  alive. :)

(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)

We arrived at the hospital  at 6:30  sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.

Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.

It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery.  When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!

Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery  as they wheeled her  into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she  was very good.

Back in the waiting room  I let out a breath I’d been  holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates  in her knees will hopefully  get her even straighter!

No cough!

Epidural working!

One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.” :) Someone is happy that this is her last big surgery for a while. :)

The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard  days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses.  She went 35 hours without sleep because of pain.  She made the nurse cry. She made us cry.  She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to  discharge her and we would be right  down the road and come back if there were any problems. We took her back to the  Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!

For as hard as her recovery has been, it is not as hard as the surgery she had  a year and a half ago when her epidural failed. That was much harder.

Sunday night we took two long plane rides home. We’d only been home  about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a  painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her!  It’s my four year old verses my sanity! She  cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.

But we knew it would be  bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she  had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor!  She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room  so she could tell them all that  she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere.  It is a privilege to be this little girl’s mommy.  She is a  joy!

Today Laelia stood up tall by herself with the help of crutches and her casts.  She looked at me and  asked through  gritted teeth, “Mama? Am I tall enough for the big  rides at Disneyland?”

That little player is determined to get a trip to Disneyland out of this thing too. :)

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:

(Photo credit.)

And why the heck not:

(Photo credit.)

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.

January to January

Tuesday, January 3rd, 2012

As a New Year’s exercise I decided to see how far we’d come  in a year. Last January we had just had Laelia’s casts removed after the biggest surgery of her life. And her legs were in the correct position for the first time in her life. This was the surgery I’d heard about from two doctors (one in San Diego and one in Seattle) but they refused to do it for my daughter because to quote them both, “Let’s get  her in the best position for sitting in her wheelchair.” (From now on I’m going to respond to that with, “Let’s get your face in the best position for smacking.”) So we flew to Philadelphia to the “AMC doctor” (Harold van Bosse)  after many people referred us there. We got the surgery done, and it was successful in turning her legs the right direction. But  going for our follow up appointment in January was a life-changer.

There were  eight crazy things going on in our lives last year.

1. It was vital for Laelia to get  more therapy to maximize the  surgery results. Every time we went to Children’s hospital it was an  $80  visit. Our insurance had changed  so I lost my patient advocate/case manager. I started the months-long process of setting up California Children’s Services for free  OT and PT through their medical therapy unit. This meant I had to cut  ties to our expert OT and PT to do it as they would not allow her to see them  at all if we got into the  program.  It took  some paperwork and lots of hassle to prove Laelia had arthrogryposis even though one  glance will tell you she does.  I was told I did not qualify. Then another person said I did and to try again. I needed a doctor’s referral, but  the nurse   said I was stealing therapy from other poor children who this program was set up for. I miserably asked for it anyway.

2. Laelia’s feet were swelling and it was so hard to deal with the painful shoes. We thought Laelia’s foot was broken. She didn’t sleep through the night. Eventually the shoes cut a hole in her foot and it got infected. She was on antibiotics and the ulcer was hideous.

3. I was suffering from debilitating dizzy spells. I went to  several doctors, got an MRI and got my ears checked. Nothing. One vertigo attack (I’d call it a “spell” but that seems too mild)  was so  bad it sent me to the emergency room.

4. It became clear that I needed to stay home and do Laelia’s therapy full time if I wanted to get her walking. It was clear I would have to quit  my job but we couldn’t afford to.

5. We were carrying Laelia up several flights of stairs to get to  the front door of our apartment. (There were four sets of stairs from the parking lot down below, eight sets to reach the street above and our mailbox, and one long set of stairs to reach the bathroom once inside our apartment. This was not wheelchair friendly to say the least.)  Between our parking lot and our  front door  was a gate. I would go prop it open with a rock, go back to the car to get my daughter, and carrying her with  both my arms in a full lower body cast I would reach the gate to discover the manager had closed it and thrown the rock over the fence. He said he didn’t care why I was propping the gate open, propping it was against the rules. If I quit my job to stay home and do my daughter’s therapy we would not be able to afford to move outta here.

6. We were having major problems with discrimination at  Head Start on Home Ave in San Diego where my daughter did preschool. Even though it was government funded and had services for special needs children,  it was hard to work with the director.  The teachers were wonderful, but the director was not. They kicked  my daughter  out of school after she had surgery. The director said it was too much on her staff and complained that Laelia came back in a wheelchair and was sore. She complained my daughter  could not walk and was hard on them.  She finally put her hand on her hip, cocked her head and  said to  me, “Just tell me what you expect from us? What do you want us to do for you?” I had not asked for anything at this  point. It was an attack. I hated entering that building and was stressed out every time I picked my daughter up from school.

7. My daughter couldn’t  walk.

8. We found a little boy on an adoption website who looked just like our daughter. We started advocating for him. We were far from being able to care for another child, but I hurt for his situation. For all the hardships that were  going on  (our lives felt like they were falling apart), they paled in comparison to what he was  going through and what he faced.

~

Step into the New Year!

~

1. After a couple months we got CCS services set up. We have seen them twice a week for the last year. It’s free. We qualified for their MTU (medical therapy unit) based solely on Laelia’s diagnosis. (Which is why it had to be officially verified which took forever.) CCS also has  other programs and services for low  income children which we were not asking for. This explains why I was told we did not qualify and was harassed about stealing services from poor children.  Despite the hardships to get into the  MTU, it’s been a great experience and  Laelia has THRIVED!

2. Laelia got used to her shoes. Her feet are beautiful and straight. You can still see the faint red  circle of where her ulcer was, but it’s pain free. She started wearing KAFOs too and tolerates them. Every now and again she’ll have foot pain issues, but they’re nothing major.

3. I had one vertigo spell during  Laelia’s November pin removal  surgery and it surprised me because I had not had one in months! I haven’t felt one since.

4. My company gave me a work from home position. I have a routine where I do all of Laelia’s therapies at home and go to all her school/community meetings around my work schedule.

5. A lot of miracles worked out and we moved into our new home last April. A missionary team helped scrub it out. Volunteers from a local church put in a wheelchair ramp. My dad built a shower and installed a light switch and door mechanism that Laelia can use herself. We furnished the entire place for under $800 with used stuff and hand-me-downs. It’s huge and it’s beautiful. It’s home.

6. Laelia was the last special needs student that darn  school ever saw. The special needs program pulled out of there because, well, we all know why. We moved Laelia to the Head Start program off Balboa Ave. It’s been WONDERFUL.

7. My daughter now walks without a walker or crutches. She walks. Our jaws just dropped when she took her first tiny shuffle steps in August. Then a couple months later she had a walking party to celebrate. Then a couple months after that she turned away from me and walked off without a walker or crutches. My child walks.

8. He was our son. We’re adopting him. But without the top seven miracles working out we would not be in a position to rescue him.

Wow, what God has done for us in one year is amazing. It’s incredible. And it’s a ton. And it’s exciting because I get to see a bit of what had to work out, all the things that had to get better, for us to bring another child with arthrogryposis home. The pokes were painful, but the  needlework is beautiful.

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???

Help Joel

Wednesday, August 24th, 2011

Baby Joel doesn’t have a mommy. He’s a little baby boy who is ten months old. He desperately needs rescue. Desperately. Look at him! He’s little and helpless.

I wanted to make him mine. I have asked my husband countless times if we can rescue him. My husband doesn’t see it ever happening.  It’s too much. We never wanted to adopt before.  My husband is supportive of  fund raising efforts,  but we’re not prepared to bring him home.  I’ve lost sleep over him and shed lots of tears over him, but I can’t save him.

Please consider Joel for your family. Please share his picture with a family considering adoption.

I emailed RR about Joel and they told me there has been no inquiries about Joel “in quite some time.” No interest. It struck me as impossible because I think about him all the time. He’s my little male version of Laelia, trapped in an orphanage. And he qualifies, based solely on his physical disability, for a mental institution. And these mental institutions are torture. If I weren’t so dang emotional and could mentally pull Laelia’s face off of this little boy when I think about him, then I would probably be a better advocate for him. But I’m not.

He’s “unadoptable.” There you go. I won’t downplay it. He’s got physical issues. He’ll need physical therapy. I think maybe a surgery could really help him. So would  serial casting. He’ll need splints at night.

His convulsive disorder could be nothing or it could be a terrible nightmare. It could be something he outgrows or something he would need daily medication for. It could be something just neglect and abuse has caused.  It could have caused him damage.  I don’t know.  And no one will know until he’s in a loving home. Because frankly no one cares.

But I do know that he is guarenteed 100% to greatly improve in a loving home.

The plight of Ukrainian orphans is well known. Kids with special needs are transferred out of baby houses/orphanages as little as three years old (Laelia’s age). They are sent to institutions where they don’t live long. A lot of kids die 18 to 24 months after arriving.

Watch this video all the way to the end. Notice the children who died at the end. Notice all the ones with arthrogryposis like Joel.

The system you would be rescuing him from will be heart breaking. People won’t understand why you want a broken child. The workers who are keeping  Joel alive may care for him, but they are completely overworked. And he is hard on them. And he can’t feed himself. And when they make their way down the line of 30+ children during mealtimes, Joel might get missed. He may get his diaper changed once or twice a day.

Oh yeah and it will cost you. Joel won’t be considered fully human by his country, but his ransom will cost you.

And if he’s not saved soon…

“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.” –Ukraine: Death Camps, for Children (http://eng.maidanua.org/node/581)

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?

Help me advocate for this little guy. Share his picture! Share his link on Facebook! (http://reecesrainbow.org/joel2501) Share his story! Share and show and tell and speak up! His mom is already in love with him, she just doesn’t know him yet! Help me find her. Please.

 

 

Baby Joel

Sunday, May 15th, 2011

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.

Here’s what they look like. (Warning, prepare your heart before clicking on this video link.)

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

 

For more facts click here.

Blood and Guts

Sunday, January 30th, 2011

We’re so tired all the time lately that I just broke down crying in front of a group of people I don’t know this morning. Thankfully they were wonderfully sympathetic. Laelia’s foot issue is worse. In fact I’ve decided to include some images of her foot that are disturbing so maybe you’ll want to hide the monitor from younger viewers before scrolling down. Her AFO (ankle foot orthotic, aka “special shoe”)  on the right foot has caused a crater that just gushes blood, making it unwearable.

That spot was getting worse and worse, and we were trying everything we knew  to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser  last night, we gave up and left the darn  AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small,  but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st)  so we can get a referral to an orthotics company ASAP  and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this  tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done.  But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our  insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of  calling and bugging people. :) He reached Stacy and they spoke on the phone for over an hour! Incredible!  She gave us ideas about how to  work the system to get Laelia’s  AFO  fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!   Then  Charley  immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people!  Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began,  “Once upon a time there were three little pigs and a big bad wolf.”   :) Best Bible story ever! :)

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude.  When she’s in pain the slightest thing can set her off. (I’m the  same way.)  So when she was playing with a picture sample and it got taken away she started to act up. But then immediately  as if by magic she  changed her tone and  apologized to the people nearby.  Right  as they were praising my parenting she added, “Now where’s my present?” :)    

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if  working her spine will allow her more range of motion or strong, more stable movements.  The chiropractor loves her because  she follows all his directions perfectly. She laid her head down  on the table and  took deep  breathes as he pressed down on her lower back. I thought she’d  throw a fit since he was a doctor and he was touching her, but I think his blue jeans and  great voice (better than Ted Williams!) put her at ease.  It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning.  I didn’t know my wiggle worm would enjoy that so much!   Because she was so great  she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal. :)

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. :)) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows  are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until  CCS  does the right thing.  The  same friends also  put us in touch with a friend of theirs  who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon.  I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s  generosity.

Another example of generosity is that  for Jewels for Jared,  our friends and family  bought bracelets  to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!)  $5 bracelets that  you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too!  Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day  since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with  her  right foot are just a few of the unknowns right now.  We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition.  Charley hears this and thinks I’ve gone mad. :)