Laelia Sky

So I occasionally watch some television shows online. One show I used to watch was Eli Stone. Although I found it really dorky and the acting was bad too, but I enjoyed it.

Anyway, ABC announced that they were cancelling the show back in November. Then a couple weeks ago or so it just ended. There are still four episodes out there, but ABC is not showing them. Eli Stone is off ABC’s website and everything.

I wondered if the cancellation had anything to do with the last episode they aired. The last storyline involved Eli’s pregnant coworker who was informed by her doctor that her protein levels were high (which I guess shows possible Down Syndrome in the baby). Her first thought was abortion. Then all she did was worry about having to do an abortion if the child was going to be different. I didn’t really think they would do an abortion on the show, so I started to think that maybe they were introducing a special needs child onto a mainstream television show. I thought that would be great! You know, to show how the parents dealt with their baby whom they would love a great deal.

Instead the baby was perfectly fine. Yea. Relief. The baby gets to live.

Did you get my sarcasm? Ooh! It just made me so mad. Can’t have disabled children on television unless they serve some sympathetic plot point! Can’t have this TV beauty queen have an “imperfect” child. (Even though it would have made her character the least bit interesting for once!)

Maybe my reaction is overblown. After all, how many times have people like minorities complained that Hollywood is only geared toward its own ideas about beauty? But I still don’t like the show for this move. And after their whole Autism-is-caused-by-childhood-vaccines episode which led stupid people to not vaccinate their children, the show was on thin ice with me anyway.

I used to read a lot of romance novels. I remember after Lali was born, my friend, Rachel, let me borrow a couple romance novels while I was on maternity leave to get my mind off things. But they were hard to read. They were Nora Roberts books (my favorite), but Nora is famous for good writing, likable, relatable characters, and the perfect babies those characters make together. No disabled children. Then I started wondering why there were no romance novels about a girl in a wheelchair falling in love? Or a story about a young man finding someone with arthrogryposis beautiful? (I’m not talking about sex books here, just romance stories.) I remember one time while on maternity leave I was holding a Nora Roberts book and smiling because I was thinking about how beautiful Lali was and how she would one day have a story like this. But then fear hit me like a car at 90mph–what if she never finds romantic love? What if she never has a Charley of her own to love?

And you all know my own personal conviction that everyone needs a Charley. (I’m just saying. You all know the world would be a better place.) :) 

But now another fear is gnawing at me: What if the mainstream culture makes her feel less valuable? Less wanted? Less beautiful? Like something you just kill off, survival-of-the-fittest style?

I guess in all honesty I’m just bummed that the imaginary TV characters didn’t have a special needs child. In the 40 minutes it took for them to introduce the conflict of possibly having that child, to the end of the show when the doctor called to say everything was fine, I had gotten my hopes up about this TV series showing the world (or whoever watches the show) how it’s not the end of the world to have a baby with a disability. Viewers would have watched this child grow with the seasons and touch people’s lives. It could show how (after an adjustment period) “normal” people can have a “normal” life with a special child.

But I guess TV people aren’t normal, and aren’t allowed the luxury of having the best, most interesting kids in the whole world to love.  

We finally figured out how to keep baby from messing up whatever we’re doing on the computer.

My husband is a genius!

Rules for doctors: (deep breath)

#1: Look in my eyes when you speak to me.

#2: Do not make me ask three times before you repeat what you told your nurse in a quiet voice concerning my daughter.

#3: Never tell me to “relax.”

#4: Never make your patients wish they had not come to see you.

#5: Give hope, even a little bit. Don’t let people leave your office without some small measure of hope!

#6: Never say a child will never do something. For all your years of schooling, that is the stupidest thing I’ve ever heard.

#7: “Faith” is not “denial.” Don’t mistake them. Don’t feel the need to shove hard truths at a patient because you believe I don’t know the severity of my child’s case. I’m hopeful not stupid, you idiot. 

#8: Don’t chuckle like we’re friends because I’ve started to cry.

#9: If you don’t have a disabled child waiting for you at home, then you don’t know. So don’t say you do.

#10: Don’t tell me my child won’t cry during a proceedure and then when she does cry, tell me, “It doesn’t really hurt.”

#11: Pretend for a minute that I didn’t sit next to you in medical school for all those years then try repeating what you’ve said in a way that an educated, intelligent person can understand. (And I’m both those things so don’t treat me differently.)

#12: Just sign the &#%@! form I hand you; don’t tell me it’s not worth your time. I didn’t ask you how expensive it was. I just saw it as a small hope and you refused because we have “plenty of time” to try the stuff that’s not working.  

#13: Don’t be patronizing!!!! 

#14: Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).

#15: Don’t make your patients work so hard at forgiveness and understanding; try a little education in the area of grief and bedside manner.

(and exhale)

I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali has severe joint contractions and muscle loss that will NEVER go away, and I needed to deal with that fact instead of searching for new splints or braces. They wouldn’t sign my Dynasplint form. They told me to have our OT make the static splints more harshly to where they caused “red marks on the baby” and that would work just as well. (I’m not even joking.) They would approve the Dynasplint system “later” when she was “older.” They said they didn’t want to put stress on the growth plates. I asked what exactly the growth plates did that prolonged stretching would hurt, and I was told that “a growth plate is a plate where baby grows.” (Duh.) So, trying again, I asked if that meant that I should stop stretching her. “Oh no, stretching is VERY important. You must continue doing it!” So why can’t a splint stretch her? “Because a splint is not the same as mommy, and the splint wouldn’t stop stretching when she cried.” BUT WOULDN’T I BE ABLE TO TAKE THEM OFF IF SHE CRIED??? WHERE DO YOU THINK I’LL RUN OFF TO WHILE SHE’S WEARING THESE???

Then they told me that the stretches were not “that bad” so I should do them myself.  Not that bad, huh? How many times in your life have you stretched your child? Yeah I thought so. So shut up!

The dumb thing is that they may be right! They may have the answers. Their plan may be best for Laelia. But I don’t think so. Why? Because I don’t trust them. And that’s scary. They have set themselves up as opposition and I have too much of that already! For example, to get anything done, I have to go through my insurance (opposition), scheduling doctors (opposition), doctors themselves (opposition), the system (opposition) and manufacturer’s costs (opposition) only to get something that gets starred at by strangers (opposition) and is hard to use on a small baby (opposition)! It’s no wonder why parents of special needs children feel all alone and depressed in this epic battle for their child’s well being! Why add to that?!

I have learned something very important: Parents are the only ones who have their child’s best interests in mind! Doctors do not have your child’s best interests in mind! They have time issues, other patients, greed and busyness to distract them. Plus, and this is important, THEY DON’T KNOW! They just don’t know! Kids like mine are always surprising these kinds of doctors who put all these heavy limits on them.

*sniff* Dr. M told me to “relax” not because I was angry or even speaking, but for coming in in the first place.

Proverbs 13:12 says, “Hope deferred makes the heart sick.” And my heart feels sick. I was hopeful that I could put these stretching splints on her (that my mommy intuition knows would work well for my daughter) and then I wouldnt’ have to hurt her every night. Imagine that! Just hanging out with my daughter! 

The one doctor actually scolded me for taking the advice of a sales person (said with disgust) instead of my own therapists. When I hadn’t even seen my therapists yet so they had no advice to give (besides what they always tell me: stretching=good), and I hadn’t really talked to a sales person, only gotten some brochures to look at and told how they worked. No one twisted my arm. Why do doctors treat people so badly? Why am I still crying?

Sunday I’m doing a lesson for the kids at church on forgiveness. So I’m making an active promise to forgive these two ignorant doctors right now. Before this turns to bitterness.

So I have good news! We discovered on Saturday that there is a set of splints that do stretching! The company that makes them is Dynasplint Systems Inc. Their ad says, “Regain Your Range of Motion!” and “Stretch Beyond Your Expectations!” The consultant I talked to convinced me when she mentioned they were, “Pain free!” (Music to my ears!) It sounds wonderful (although probably quite expensive) and perfect for our situation! And the way this all came about is a rather interesting story.

It starts with Charley’s job. Charley (you all know him as Charles, but, hey, I met him in high school so he’s Charley to me ;)) works for San Diego’s Union Tribune. That’s a newspaper. You know, it’s like a news report delivered to your door in paper form. Still with me? Here I’ll help you out by providing a link: LINK!Okay, so it’s quite antiquated. (Although maybe the link was insulting to your intelligence. :)) Believe it or not, the employees at the newspaper are not oblivious to the fact that the newspaper has fallen on hard times. We got our official letter from James Copley, the owner of the Union Tribune, and have been warned about the hard times ahead. In fact, it’s looking like many people are about to lose their jobs (possibly by the end of the week). Many more will take pay cuts. And the newspaper itself is up for sale. Charley is hopeful that he will retain employment since he works in IT (the computery side of things). However, we’ve had our 401K matching cut off, our insurance go way up (along with copays), and there are a couple of months coming where employees will have to take a couple days per month of leave without pay. This means that our insurance is pricier and we’re starting to worry about losing it all together. Besides what that means for Laelia (since she is dependent on this insurance for medical care and therapy), it also means that we are starting to use what we have while we have it. Which led us to make dental and eye appointments out of the blue. (Even though I hate both of those things!)

Which leads me back to my story. So we went to the eye doctor Saturday to use up anything our remaining insurance would give us. Yes, I have astigmatism. No, I don’t wear my glasses like a good girl. Yes, I should go to the optometrist. No, I won’t! It’s sad considering that I’ve worked at three libraries in my day, and Charley is really disappointed that I never had a sexy pair of librarian glasses. (He was really pushing the upturned frames with the pearl chain. Ugh.)

So we were getting ready for our local (walking distance) optometrist appointment when we realized that neither one of us had gotten a sitter for Laelia. So we dragged her along so she could make friends with the nice optometry people. Well I put her on a chair where she could show off her excellent balance, and one optician complimented her good sitting abilities. So I told her about the Bumbo chair that I got at my baby shower. Those things hold the baby in place so they learn to sit up. Well then she mentioned that it wouldn’t work with her daughter, what with her casts and all!

Turns out that the optician, Holly, had an adorable little five-month old with club feet and spina bifida. So we learned about her little one, Annabelle, while Holly and Laelia played together. Laelia got to be an encouragement to someone, and that made me very happy. Laelia was on her best behavior too! … Well most of the time.

Then a patient came in the office for contacts or something and Holly introduced us. Her name was Kim and she was an ankle and foot sales consultant for Dynasplint. She ran back to her car and brought us flyers and brochures. They have splints for everything Lali needs: elbows, wrists, knees, fingers, even shoulder rotation! What caught my eye was the knee splints (since we tried those awful KAFOs that slipped and didn’t work because we had the Dennis-Brown bar in the way). I mean I can’t tell you how many times I have wrapped up her knees in stockinette as make-shift knee braces when they had these wonderful things available!

Dynasplint Knee Extension Splint

So that’s how we found out about these nifty gadgets. They don’t just splint your joints, they stretch them! I sure hope we can get these with our insurance or something! Like I said in a previous post, the more we stretch her the better off she is! And these would be like continuous stretches throughout the day! Of course I wouldn’t cover her whole body with them since she needs THEM ALL. But I would just try to get some for her knees (or maybe just the left knee if it’s too expensive). Or her right wrist that we’re having problems with. Or her inverted shoulders! Those are her most painful stretches! (I hope they have all this stuff available in infant sizes!)

Right as Kim was leaving she hugged Holly and said something about how she knew God brought her here for a reason today.

I had just announced that it was bathtime so Charley decided that no bathtime announcement was complete without some ominous music.

We are excited to announce that Laelia actually fed herself last night! That means a big thank you to all our stretchie helpers! Stretchie time (also known to adults as “stretches time”) has always been difficult, but we are seeing the fruits of your labor! Her right elbow has become loose enough through stretching to where she can reach her mouth! Right now her primary stretchers are Jessica, Chelsea, Lauren on Wednesdays and of course Charley and I at night and on weekends. But Tammi, Megan, Brenda, Sam and Angela also were stretchie masters at one point or another. THANK YOU SO MUCH!!! We are so excited for what this means for the future! No more holding a banana or cracker up to Lali’s mouth for hours and hours! (Okay minutes, but hey I’m lazy!) :)

On a more somber note, not a lot of arthrogryposis kids can do what Lali’s right elbow can do. Many need surgery to gain a few more inches of mobility (range of motion). We were told that she may never stretch this far. (It was “unlikely.”) And I’ll admit that after learning that she had no biceps, I had imagined a terrible struggle with things like feeding herself and going potty. Those have been my two primary worries for a long time now. So after her accomplishment last night we are feeling truly blessed and lucky and happy and hopeful. And the more stretchies she gets, the less discomfort she’ll feel when feeding herself. That last little bit of stretching for her hand to reach her mouth can be uncomfortable. And when it’s uncomfortable it can mean the difference between her being done or eating another bite. (If bringing a spoonful of ice cream to my mouth brought me a little discomfort I think I’d weigh less!) :)

In the video below she not only held the food for her mouth, but she also used the table to anchor her arm. (I helped.) Then she brought her head down to get the food, stretching her elbow in the process. Well by “food,” I mean ”food-stick product” or whatever junk that was. (It kinda looked and smelled like cat food… which explains why Pokeylope ate all the leftovers!)

Enjoy the video! (You may want to turn off the volume since my cheering and baby voice are pretty bad. But hey it was her first time!)

Laelia has a new trick! It’s called singing! Well she kind of matches the tune and sings “ga” instead of lyrics. It’s adorable! My daughter is so smart!

Laelia singing!

Sophie singing too!

Laelia is being such a good baby. She is feeling a bit better but still not eating much. Since she’s sick I decided not to put my camera in her face all the time, and instead give her some privacy. Yeah. … Hahahahaha! Okay so I can’t help myself. She’s too adorable when she’s sick! So here are some videos of our sick girl! Enjoy!

Laelia snuggling up to her comfortable kitty. Pokeylope is putting up with it rather well.

You can’t really tell, but her throat is so sore and awful sounding. Note once again her good kitty (”gookie” as she says it) never leaves her side.

Upside-down, baby uses gravity to help her kick since she has more muscle in her hams (back part of the leg that kicks back) than in her quads (front part of the leg that kicks out). It was great exercise! But why does she only do it when I sing that annoying clown song? The world may never know.