Laelia Sky Wesley

She’s more machine now than baby.

So this amazing gadget has no mold because they don’t make elbow splints for babies. So Jill made it by making paper towels cutouts and then cutting the moldable plastic around them and then making hinges from scratch, etc. etc. It was very involved. Then you add tiny little hook pieces and forty rubber bands and you have a workable elbow splint! Ta da! We were given the prescription the last time we were at our orthopedic doctor’s office, but since the process is SO MIND-NUMBINGLY SLOW, our OT still has not received it so she decided to make what she *thought* he wanted. And, yes, that’s how the system works.

So we went to see our temporary OT today since Jill is on vacation (which I will allow… I guess… if I have to :)). She is the same OT as at the muscle clinic so I’ll see her when we go to clinic this Wednesday too. She marvelled at the splint made “from scratch” and wanted to take a picture. Then she did some adjustments to it that we’ll try out for two days and then go back to readjust. It’s fun watching Laelie stretch out her arm to get something and then watch the splint spring the arm back up so she can reach for something else. Here’s a video:

On the other hand (literally) we have our supination splint. This holds her arm so the thumb goes from pointing down to pointing more out to the side with her palm up. We were told to remember “begging for soup” because “soup”ination can’t happen until you can get your palm up by turning your arm out to hold the bowl of soup. So our supination splint allows that. And when she is using any muscle you can watch her fight the splint. Actually besides it being a little harsh on her (turning her hand purple), she is able to bat at toys without going around them to hook them. Now she can hit something directly. Apparently she is missing the muscles to turn her arms so she is constantly in, hey Linda what’s the opposite of supination?

Um, pronation.

in pronation. (Don’t I sound smart. :))

It’s actually triggered something in me emotionally (psychologically?) to see my daughter with her arm turned the right way. It makes me really happy. Speaking of feeling good, it’s weird that the closer we get her to looking like my idea of “normal” the better I feel. I was watching a video called ASL Literature Series: Bird of a Different Feather where a bird is born into a family of eagles. It shows how the eagle family reacts to this “aberration.” They put the bird in eagle school, they teach him to hunt and fly like them and they even do a surgery on his beak to make him look more like them. The more he represents the appearance of his eagle brothers, the happier his parents are. But he isn’t ever going to look like them. In fact, one day he meets other birds and learns to sing (which upsets his parents). They won’t accept the fact that their baby is different.

I really don’t want to be like that. I want my baby to enjoy a world I may never be fully apart of. I don’t want her tortured with multiple surgeries to make her look more like my version of ”normal.” And while I want her to be fully functioning, I don’t want her to feel like she is anything short of beautiful and accepted.

And that was the whole point of the story.  

Well, that was interesting.

Our appointment time changed from 10am to 7:45am. We were there for five hours. During our stay a fire broke out on the third floor of the next building. Then a news crew showed up. So, you know, cool.

The neurologist who saw Laelie wasn’t encouraging about our eligibility for the clinic. We are starting some tests to *try* and find out what caused Laelia’s condition. If we do find out, and it matches something on their list, then we can stay. Just having the diagnosis of amyoplasia isn’t enough. They need to know what caused it. I told her (the neurologist) that back when we were diagnosed we were told a “vascular accident” caused it. The neurologist wasn’t sure about that. “How would a vascular accident effect her whole body like this? It would have to be a vascular accident to the spinal cord, which I don’t see evidence for.”

So what? She was just born that way!? We’ve been telling people for eight months that Laelie had an accident when she was still inside my tummy, just like people have car accidents and need to go to the doctor. Now she was just born this way?

It’s scary that this “just happened” to my daughter, but in some ways I think that makes me feel better. Like maybe something inside me didn’t break her. Once after being asked by my doctor if I would have more children, I told him that I couldn’t because, “my womb eats children.” I said that! Now I find out that it may just be a random mutation that caused this. And, yes, that may screw her chances for programs, clinics and funding for studies, because they don’t know what caused this, but it would also mean there was nothing I could have done. I can’t tell you how many times I have beat myself up thinking about if only I had conceived later or been more responsible about when to start a family, then she wouldn’t have been born this way. Now I might be able to say there was no accident. This is how she was born. This is normal for her.

I met a little girl around seven years old at this clinic who didn’t even have a diagnosis. How terrible! Imagine how hard it is for that baby girl to get through the system. At least we have a diagnosis!

We’ll go back to the clinic in August. But in July I have to gather information about my family to see if there is any way this could be genetic. So ATTENTION FAMILY!!! Please let us know the health background of everyone related to Laelia, if you know! Even minor things related to their health or body that were unusual. Please email me what you find! Thanks so much!

Baby didn’t handle the day of Children’s Hospital very well. She missed her nap and didn’t eat very well. Then she cried a lot at night, and now she has a slight fever. Actually so do I. I went to the doctor on Friday the 13th and got some blood work too. Of course it didn’t take five hours so baby and I aren’t even yet.

Speaking of blood work, that was a HORRIBLE experience. It was the last thing Laelie had to do that day. We get her in there and the lady taking her blood just says, “This won’t work,” so many times! She looks at me accusingly and says, “I can’t turn her arms around! She doesn’t have an inner elbow! This won’t work.” Excuse me! Then she ties up baby’s arm and flicks several places, unties it, ties up the other one, says like clockwork, “This won’t work,” and gets out a hot pad. At this point Little Laelie Love is crying. Then I go on the offensive. “Excuse me, (drawing myself up tall) but how long have you worked with children? Do you have any experience? Have you ever drawn blood from a disabled child?” Six years. Red Cross. ”Cerebral palsy and others.” Then her, “This won’t work,” became, “This won’t be easy,” with only a modicum of difference in tone. We finally did find a vein in her hand below the second knuckle. That hurt! It’s at this point, while I’m holding her arm still, that I remember that one time I took a friend to Urgent Care and they took her blood.. and I passed out just from watching! So I almost lost it and I wasn’t even looking! Then I take a long time to get her back to the car. I bought some bottled water and put my head between my knees. Ugh. Charley had to rescue me during his lunch break. He went back to work when my nausea passed. Such a good daddy.

One thing the doctors did tell me was that there were no cures and no new studies or treatments for what my daughter has. This condition is very rare, and throwing a lot of time into studies for it wouldn’t help that many other kids. There’s no way to grow muscles. There are no transplant surgeries I can put her on a list for. It’s not like when your kidney fails and you get a new one. I started to cry when they told me all this which immediately got a social worker tossed my way. It just felt like another denial. Not as bad as getting denied for daycare, but we still kindof are getting denied for this clinic unless something changes.

Another thing I learned from this clinic is that we have the best OT! We were given a free therapist session (second opinion) and we were told the name of the best hand specialist who could help us, and it happened to be the one we have!

Another other thing I learned from this clinic, is that out of all the staff of Children’s Hospital–a ton of college-educated, medical professionals who have “arthrogryposis amyoplasia” rolling off their tongues–not one single one could pronounce my daughter’s name. I’m starting to feel like I named her Xypoljamida. (It’s pronounced “Bob.”)

It’s a busy week for me and my friends!

Laelia - She has her muscle clinic on Wednesday that we got her in using the “back door” so to speak. We found out a social worker will be there to answer questions! We hope she will qualify for the muscle clinic. If she does, she may be eligable for help with durable medical equipment and different devices to bypass muscle use.

Kyle - His parents are the first people with any understanding of AMC to really reach out to me when we got Laelia’s diagnosis. Kyle is affected in all four limbs as well. Kyle will need to have surgery on his right foot.  Two bones will be taken out so that his foot will be able to lie flat. Kyle’s last surgery was when he was 17 months old. He’s now five and understands that surgery is scary. His parents are asking for prayer for him. The surgery is on Wednesday.

Ryan - This little guy is in New Jersey for his Christening this week. He also has all four limbs affected and turned one month old a few days ago. I don’t envy his parents flying back to California with a newborn. *eep* He is also in the first weeks of serial casting which is just hard on everybody.

Michele - Michele works with the YMCA to provide respite workers for families who have been touched by a disability. We recently were awarded this. Michele told me that she is excited to add our little one to the system since she is adopting a little girl from India with the same diagnosis! She’ll get to meet her new daughter very soon! I’m hoping to get lots of visits from this little cutie!

Bonnie - This amazing super star is crawling!!!!!!!!!! Here’s a link to her video: LINK! It’s cool, Bonnie gives permission in the video to show everyone. Bonnie’s mom, Beverly, has been a huge encouragement to me. She is the one who pulled me out of a dark place after the orthopedic doctors first told us that laelia would never walk. It gives me hope that Laelia will do this someday!

This is the picture I took out of the dictionary right next to the definition of precocious.

Have you ever wondered what it looks like to type up a blog? Well here’s the picture. Laelia is happily tummy-down in my lap the whole time. When she was little I could get away with holding her upright, but now she just stares at the screen so down she goes. Over her legs and behind her head is the keyboard, and if I bend over it too long, she will try to bite my tummy with that one tooth of hers.

Laelia got some new KAFOs this week. I call them her “legs.” Come on, honey, time to put on your legs! Her daddy took her to Scope and they affixed a Dennis-Brown bar on there too. Now her knees and feet are taken care of. Finally! The only problem is that it falls off (slips up), and pinches her thighs even when they’re on correctly. Nevertheless, it’s a step in the right direction.

They have been slipping a lot making me constantly mess with them. When they do slip off completely, I am forced to put on her old shoes or watch her feet get worse. The last picture of her foot I took before we got these KAFOs was this one:

I hate this!!!

That’s her foot bloody with skin peeling off. They are also bruised. It makes me crazy. Now I have to wait until Charley gets back from Idaho to call up Scope and make them fix stuff. Because I’m *cough* fired and stuff.

In other news, it’s becoming clear that Laelia is missing biceps and deltoids. So Jill, Laelie’s OT, referred us to a muscle clinic through Children’s to be sure. I called the number and got the coordinator’s voice mail. I explained that Laelie had amyoplasia (a-no, myo-muscle, plasia-growth) and could she be seen by the muscle clinic people? Well I got two calls on my voice mail at work. One after the other and from the same department. The first one was from the lady who was the official coordinator and who was going on vacation. Her message was not very positive. She couldn’t get me in the clinic, but here were some numbers to try, and this whole thing would be a hassle, and I could call her back when she got back from vacation in mid June. Oh great. But right when I was getting discouraged the very next voice mail was from another lady in the same department who was handling the first lady’s job while she was on vacation. OF COURSE the muscle clinic could see me. My baby had amyoplasia? Well then we can get in as soon as the 11th! Is there anything else she could do for me? Etc. Etc. What perfect timing! I can see God manipulating events here.

Now I’m praying for a cure. I know lots of people in my situation have prayed for cures, so I guess add me to the list. I think I had a faith-related question answered for me recently. I haven’t been praying for my daughter because I had lost my faith, especially in that area. I found out that a high percentage of people believe in medical miracles, but my question was, “Why doesn’t God heal amputees?” It’s an old, and Googleable question. Now that I’ve dusted off my Christianity and shoved it back on, I’ve thought more about this question. I really think God works within the laws of nature that he has set up. He very rarely bends those laws, and even then, only under very specific conditions. In general, God sets up these laws and helps us through the natural consequences of these laws. For instance, he’s not, as a general rule, going to change gravity to help you avoid getting hit by a bus. (Yes, I did get that example from Ron.) But he may steady the driver’s hands or use your own adrenaline to help you jump out of the way. Plus, as I can see my grandma Lucy saying, we wouldn’t want him screwing with gravity every time some dummy jumped in the road anyway! God just seems to be doing a lot of healing through medicine or technology or working within the body’s own amazing system. This explains why someone may be cured of cancer, and prayer can be an integral part of that healing process. But with amputees, I don’t see his motivation for healing people there. It would be changing drastic laws put in place in the universe. And what grandiose purpose would it serve? My daughter is not an amputee, but she is definitely missing some nerve endings and muscles. If my daughter was fully healed right now I might think she was misdiagnosed to begin with. (Wow, I just realized that.) So maybe God won’t heal her, but he may use this muscle clinic (and future technology) to maybe help my daughter someday lift her arms.

I know we can ask things of God and he will hear us, and do things for us if it’s within his plan or will, biblically speaking. People have told me that if I was mature in my faith, I would reach this point of wanting God’s will above my own. Which sounds great, but it means that if my daughter’s full recovery is not on the list of things God wills, then I should want his will to be done over her being whole. And when it comes down to it, I don’t want that. I want my daughter to be cured. I guess my faith will continue to be rudimentary then. It would take Jesus-like faith to do something like that–pray for the Father’s will to be done instead of walking away from faith and living a normal, torture-free life!  That’s something beyond me. (Although I bet his mother prayed like I do.) I just hope people with more faith than me continue to pray for a cure for kids like mine.

Charles here.

So I took Laelie to a morning appointment at Scope a couple days ago. Scope is the orthotics company that builds Laelia’s orthopedic shoes and her KAFOs (knee-ankle-foot orthotics). They’ve also been a source of great frustration, and since my wife has been dealing with them 100% of the time, she was at her wit’s end. Apparently there was some miscommunication between her and the Scope office, and some orthopedic equipment we thought was being manufactured wasn’t being manufactured at all. (The office staff at Scope are not exactly grade-A communicators.) Alexis was ready to fire Scope entirely and find some other orthotics company. So I had to come in and meet with our CPO (don’t really know what it stands for) to try and straighten things out. I called him before I came in, and it seemed like we were going to be able to work something out.

The crackerjack office team at Scope told Alexis–twice–that our appointment was Thursday at 10:00 a.m. sharp. So naturally when I arrived at Thursday at 10:00, I was 24 hours late.

 ”Your appointment was yesterday,” the lady at the counter tells me. I politely insist that it was today. “We tried to call you,” she says. At what number, exactly? She recites my cell number back to me as one of the numbers they have on file. I look down at my cell phone. No missed calls. No voice mails. I stare at this marvel of organization quizzically. Does pure, cold competence run in her very veins? I wonder. “We’ll have to reschedule you,” she says.

After an embarrassing interlude in which I march disgustedly out of the room and call my wife to verify that the appointment is, in fact, on Thursday, I come back to the same lady and insist that the appointment was today. “We’ll try to fit you in,” she says. “Have a seat; you may be a while.” Have a seat! There is no end to the hospitality offered by the Scope office staff!

Luckily, the CPO in the back is a sympathetic man, or else he has spoken to my wife on the phone one too many times, because he calls me in almost immediately. He’s going to take our KAFOs and attach the bottoms of some old orthopedic shoes to them, so we can affix a bar to Laelia’s KAFOs. It will be just like what we asked for–only better. He’s a good guy. I walk away with a feeling that we’re going to work things out with Scope after all.

Then I check my voice mail. Alexis has called while I was meeting with Scope. “I filed a complaint with the central Scope office,” she says. “I outlined all the abuses of the last few months.”

It’s at this point that I realize I’ve seen this play before. Laelia grows up and falls in love at 16 with the son of some Scope employee. Things seem to be going well for awhile, until Mercutio gets killed, and then events escalate until both lovers kill themselves with an overdose of prescription drugs. We all wind up supporting universal health care.

So I call Alexis up and tell her she’s fired. She is not to call Scope again. She is not to go to Scope ever again. I will be her liaison to Scope, for all intents and purposes. If it means I need to get time off work, so be it. I will handle this. She sounds relieved, if anything.

The CPO calls me up a couple hours later, investigating the complaint from the central office. He’s happy to apologize to my wife, if it would help make things right. No, no, I reply, that will be fine. I’ll handle it. You won’t be talking to her ever again.

What do you get when your OT combines thick blue tubing and an old walker? Well you get a lot more than from our home-made PVC piping, bumbo chair and thin yellow tubing. Tuesday’s therapy was fun. Once baby was all strapped in and that walker stopped rolling off the table, we were able to help Laelia make the connection between moving her shoulders and reaching out with her arms. She reached out for my mouth for the first time, then laughed and did it again! It was the best! Dr. Jill even said there was a more advanced kind of set up similar to this that they can attach to the back of her wheelchair.

Despite PT and OT being fun, baby fussed all through them both. I didn’t know she was having tummy problems at the time because it wasn’t bad until Wednesday night. I thought it was just some air sickness left over from flying back from Sacramento, but instead it was constipation.

Yesterday Laeliekins got her six-month shots. And got a fever to go with them (even after the Tylenol!) which broke this afternoon. It never got bad enough to take her in so we just waited it out. Since I knew it was shots-related, I was baffled that she was still crying even after the fever broke. But she has had about twelve (and when I say “about” I mean “exactly”) dirty diapers in the last two days. They were all painful for her to get out. I even had to (hopefully none of you are eating while reading this) help her pull a bowel movement out since she was having trouble and was really red down there. Thank God for butt paste! This kid didn’t sleep last night either, just screamed and screamed. She let me sleep from 1am to 4am, and then Tammi took her and let me sleep from 8:30am to 11am. Reminds me of when she was a little baby. You’d have to hold me at gun point to make me go through new motherhood again.

Oh I almost forgot.

When we went to Dr. Schwartz yesterday for our shots, Laelia was diagnosed with dacryostenosis or at least the start of it. Now we have to push against her right tear duct twice a day to try and avoid surgery. The pushing and rubbing causes her a lot of pain so she screams. When I first described what we had to do to Charley, he responded along the lines of, “Just kill me now.” But at least this only takes five seconds (and about five minutes of calming down) as opposed to her stretches. But the doctor told us that most babies who don’t get better had parents who didn’t do it hard enough. Now rubbing her eye duct won’t guarantee avoiding surgery, but if her eye clears up before her nine-month checkup then that would be so wonderful! If it doesn’t, we are going to try and schedule the face surgery at the same time as the foot surgeries since they both require the child be put completely out.

Poor little girl. She tugs at my heart with that quivery lip of her’s. At first I thought she was having nightmares when she wouldn’t sleep. That would have been worse since at least with this there’s treatment. I love children’s infant Tylenol, grape flavor and butt paste! If one of those companies wants my adorable child in a commercial, she’s ready for her close up.  

I’m making my sick mommy feel all better.

My auntie came all the way from Idaho to see my new KFOs!

My new dresser is finally built!

Wow, what an incredibly busy last few days! Thanks for all the advice and ideas and encouragement and help and contacts and prayers and everything! We have an SSI interview set up for Friday, an iHSS application on the way, a denial coming from insurance that we can show two advocates our insurance showed us, a Department of Health Services application and a few other long shots yet to try. We are expecting denials for most of these, but getting those denials in writing helps us build a case when we complain to the Department of Health. THIS IS SO CRAZY!!!

And I would have missed it if not for some emails, but Laelia turned six months old Thursday! Yippie!

My milk is almost completely gone; I get about three ounces in a 24 hour period. It happened because of sickness, not eating enough and stress on my body. With nursing out of our routine, little Laelie is having trouble going down for the night. It is reminiscent of her first weeks of life. I’ll jolt awake hearing her cries, only to realize that they are only in my head half the time. Her system is also adjusting to the formula, but she’s still a little constipated. It’s weird when her tummy bothers her since it never has before and I find myself in a panicked scramble to take off all her gear (braces and splints) thinking they are the culprit, only to have to put them all back on again. 

We also finally got our KFOs! We use them four hours a day and the braces the rest of the time, including nights. We need the right KFO adjusted since her leg is shorter on that side because of how the AMC pulls her leg up. I called to get that done, but the doctor was out of the office–hopefully in the next few days. Our orthopedic doctor had a death in the family (which how can I help but not totally understand) so our appointment with him for an evaluation for her KFOs won’t be until April 24th! We are also trying to get AFOs (Ankle Foot Orthotics instead of her Knee Foot Orthotics she has now) to straighten out her mid foot breakdown in preparation for surgery. According to Scope, the braces help with club feet, but the AFOs really help for arthrogryposis-related club foot. No one told us this! Thankfully she was casted for AFOs the same day they were mentioned. I LOVE THAT! Now we just need to run it by our orthotics doctor and get that auth. I also have a contact now for Laelie’s insurance who I can bug when these things need authorized. It gets done in half the time, but I’m working on getting it done even faster. I am determined to be the squeakiest wheel!

Laelia’s aunt Linda came down for her spring break from college on Friday. What would have been incredibly bad timing (after Charley and I got the rejection by Regional Center, I got sick, we ran out of hope, scrambled for options and were at each other’s throats…), but it turned out to be great. I came home to Linda cleaning my apartment… and she hasn’t stopped since! It looks livable again especially upstairs. After a Linda-made dinner tonight, I’m not looking forward to her leaving tomorrow. I’m trying to figure out how to hire her full time. Linda and Charley finished building the dresser that the ladies at Fellowship of SD got her. They have been complaining of random pains ever since. My fingers hurt, my back hurts, my spleen hurts… It looks wonderful though!

We are indeed flying to northern California this Friday (right after our SSI appointment) for Gram’s funeral. We made the plans after grandma Wynema sent me some birthday money for the flights. (When you’re turning 26 and your grandma is still sending birthday money, you’re most definitely spoiled. :)) Baby will be in tow. It’s depressing to think about all the incredible women that will not be apart of her life: Joy (Mom), Louise (Gram), Lucy (Grandma). It’s a tragedy since I know they would have adored her and fought for her like they would have for me, like I am for her. Now I’m alone and unable to replace all of them in her life, but more than that, I have this incredible responsibility to take all they have given me and supply that for my daughter. That is a responsibility that weighs on me heavily at times. She’s the apex of a legacy of strong women. And the culmination of love that has spanned generations.    

Laelia’s Grandma Joy and Grandma Lucy. In memory.

Also proof that I am capable of growing hair… eventually.

So Charley and I got upset after reading about a sea turtle who is missing three flippers. I guess there was this turtle who was hurt badly, and, whereas they normally would call this a lost cause, an intern “begged for a chance” to care for it. Now they are making the first ever prosthetic flipper. They’re working hard and putting lots of energy into this project. It’s even gotten some media attention.

So my question is: Where can I find an intern who cares about people and is willing to put work into making a gadget to help my daughter become ambulatory? We need braces with a bar for Laelie’s club feet that also have KFO-like knee straightening deals for her legs. The dumb turtles of the world can take a back seat!

Gee, am I in a mood or what?

But seriously, it’s a turtle. There are actual ”quality of life” concerns for this turtle, which is great for the turtle, but come on. After reading about the work going into this, I just feel a little jealous.

Even though I complain, I have this feeling that Laelia is going to be one of those kids who would want mommy to help the turtle. She loves turtles as you can see.

*sigh*

You know, one thing that amazes me is how the whole universe turned upside-down to make room for Laelia’s bright soul. I met a lady the other day who was helping with the paperwork side of Lady Laelie’s care. She asked how old my baby was, and, after I told her, she asked if they had caught Laelie’s condition in an ultrasound. We did have a lot of ultrasounds, but we didn’t know to look for something this rare. Since everything else came out normal on the ultrasound, we didn’t find out she had AMC until she popped out on October 3rd. We got her official diagnosis on the 4th in the morning by our geneticist. “Wow,” the lady said, “So your whole life changed just a few short months ago!”

Wow. I guess it has. It’s hard to believe that a few months ago our lives were totally different–and less complete, but of course we didn’t know it yet. It feels like it’s been years and years. And in that time I became an expert on AMC–the amyoplasia version of it anyway–or I guess I should say the Laelia version of it.  How weird that it’s only been a few months! I feel like we’re finally getting a handle on getting over the grief and heartache of her diagnosis. We’re learning not to ask the “What if she never…” questions or limit her in our minds or words or actions. Of course we relapse sometimes, but we’re getting better all the time.

Once upon a time in one psychology class or another, I heard that a person’s overall emotional state after extreme stimulus, good or bad, will revert back to “normal,” given time. So if you win the lotto and your happiness spikes, or someone close to you dies and your happiness tanks, given enough processing time, your overall happiness will level out again. I think I’m nearing that stage where everything levels out again. Sometimes I’ll get some downward trends, but overall, things are becoming the Wesley family’s version of normal. “Normal” for us includes quite a few more hospital visits than the typical family, but I think a few more joyous discoveries than the typical family too. Expected physical milestones for babies are not something that apply to us. We don’t expect anything to come easily for our daughter, yet every new movement she discovers is celebrated. And every new suprise makes for an interesting and exciting life. There are things she can do right now that I honestly thought she never would. (Like have enough passive range of motion in her arm to touch her own face!)

So even though some doctors or insurance people or, sadly, turtles get me down, I know I have a wonderful, intelligent, happy daughter who is full of life and promise. She has a great attitude and loving personality. She already puts me to shame and she’s only five months old.

Sup?

Yeah we’re cool. To celebrate her five month mark, Laelia got a big upgrade in sleeping arrangements. She moved out of her bassinet and into her crib! That meant we had to kick the cats out of the crib and find a new home for the random baby crap that had collected over the last several months. We also had to clear a path from the door to the crib through the dumping station, um, I mean spare bedroom. It all paid off. I put Laelia in her new surroundings and she grinned her head off at the mobile for a while and then fell peacefully asleep for the whole night! Woot!

We love sleeping with Puppy the cat, but Mommy doesn’t let the kitty in our crib.

We made it to five months! Oh how the time has gone! Let’s see, she now sleeps at night. Her strawberry mark has faded a lot. She smiles and pouts with her bottom lip. She’s out of casts! She’s totally more fun now!

Gosh, I love her.

Charley and I also love having our bedroom to ourselves again.

It also looks like Laelia is also going to get a little party. Lisa from church is giving Laelie a baby shower and I’m really excited about it! My work did one for me and I threw myself a little one, but this will be the first real shower where I don’t have to make anything, buy anything, do any work or go to work. :) I can’t wait!

Last week before Christina, I mean Grandma, went home, we found a stroller on Craig’s List for $20! Right before we found that, we got a letter in the mail that Laelia’s car seat was being recalled. (I guess we can be hit from the front or behind, but don’t side swipe us or the kid will go flying!) So when we went to get the stroller, we ended up getting the car seat to go with it too! All for $20! I feel like a garage sale shark. With this stroller I don’t have to carry her car seat from place to place and hopefully I can avoid wrecking my arm and shoulder again. My thumb is STILL asleep from the pinched nerve!

Today I am working on Laelie’s Shriner’s application. I finally got Laelia’s birth certificate this afternoon and a MediCal appointment day before yesterday so I’m ready for action!

***Warning*** This is the part of the blog where Alexis talks about orthopedics (eg. devolves into a ranting crazy).

Also today I decided I was sick of patiently waiting for Scope to finish Laelie’s KFOs. Those are the orthotics that would cover her knees. Do you see her knees? Well you shouldn’t. They should be covered in metal and hard plastic like the rest of her. Our orthopedic doctor ordered the KFOs on February 15th in the morning. It’s now March 3rd in the afternoon. How long is it going to take? So I called them.

Would you believe they have not even started on them?

Worse than that. They had not signed the paperwork or sent it over to Laelie’s insurance for approval or anything! So they not only haven’t started on them, they haven’t started on starting on them! We were not contacted, of course, and they wouldn’t let me set up an appointment for casting the KFO molds since they don’t know how much longer it will take! If I hadn’t called, they would simply not have ever been done! The order went straight from orthopedics on the 15th to a black hole! When I asked what happened I got a shopping list of policies and was then informed about all the hoops I had left to go through. Then I was told it would be put on the top of the pile of things to get to next! Oldest trick in the book. I work in customer service, I know this game. You didn’t do your job and now you’ll try to get me to look left instead of right (through you).

So now I am forced to beg my insurance to try to get this pushed through.

Laelia’s knee caps will become solid in around a month from now. I wanted the legs to be straightened while the knees were still flexible and well before the kneecaps would harden. This could save her from painfully stretching hardened kneecaps. You see making these blunders repeatedly with my child’s care doesn’t only tick me off, it also makes her life harder and more painful! I swear if I have to hold their hands (or kick their butts) through this whole process I darn well will!

While I’m ranting about her care, let me just say that I want a KFO/brace hybrid for her legs and feet that will work on her knees while keeping her club feet straight. This contraption doesn’t exist. It works in theory, but they don’t make them since children usually don’t have this problem. I haven’t figured out who I have to kill to get it made. I was told by her orthopedic doctor that if I came in next week with this contraption, he would be impressed. Well I’m not bloody MacGyver! Why won’t anyone help me here?! I can’t wait until her Shriner’s application is finished. I hope I find a good doctor there.

So my arm is killing me and I went to urgent care where they gave me muscle relaxers and said I had “muscle problems.” I argued, but the doctor gave me the you’re-an-idiot look like I was a pansy. She handed me a booklet called Neck Owners Manuel and sent me home. Okay. Then I went to a *real* doctor who was amazed I could sleep at night and he diagnosed me with acute tendinitis and bursitis. I got the most painful cortisone shot of my life (where they move it around under the skin… okay I *was* a pansy for that), but my arm and thumb are still asleep–been asleep for five days and four hours.

I’m not allowed to hold my child or lean over her. So Wednesday Laelia’s grandma, Christina, flew down here on the next plane out. I called my dad to say I desperately needed help and couldn’t move then his wife shows up in San Diego about five hours later!   

I called the breastfeeding hotline and just got the go ahead to breastfeed again… only now Lays wants her milk in a bottle. The formula we used while I was on the muscle relaxer made the baby’s stomach really upset. She threw up a ton all over her daddy and fussed all day long while making noises in her diaper.

Actually I got sick as well with bad diarrhea. So between baby and me, we were pretty fussy.

I also have missed work this whole week and feel worthless.

So bad day. But it got worse.

We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. Whatever went wrong inside me, made it so that her muscles didn’t grow normally. The doctor said her AMC is like Polio, we don’t have a cure and don’t understand why she doesn’t work right. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her. She also does not have the arm strength to use a walker or wheelchair. She’s not quadriplegic since she can twitch fingers and slightly bend elbows. Once again we find ourselves crying out to God and stunned with grief at the thought of a little girl who won’t dance on her wedding day or who can’t go to the bathroom without assistance. 
 
I guess our other doctor knew this but just didn’t want to break the news? Our new doctor actually went and got Laelie’s x-rays out and explained them to us. Based on the x-rays, she will need major surgery very soon on her feet. But I’m just not up for that. I liked my pseudo-hope and now I feel like it’s gone. Like it says in Proverbs 13:12, “Hope deferred makes the heart sick.”

I got an email from another AMC kid’s mom. It was titled, “Don’t believe them!” Her daughter does a lot more than doctors thought she could. I told her that meant a lot, but I wish one bloody doctor would tell me that! I told her, “I used to be so happy with every little gain she made, but now I’m depressed because so many doctors have stretched her life before my eyes and what I see is a power wheelchair and help going to the bathroom. I want to hope again and I want my joy back.”  

Back at the ranch…

Blissfully unaware of what was going on around her, Laelia discovered that her voice had an upper register last night (Thursday). During the depressing yet informative doctor’s appointment this morning, she made lots of high pitched meowing noises. We were discussing heavy, stinging facts of her condition and the whole time Miss Noisy Pants made every sound in the book.