Laelia Sky

Wiping off the chocolate remains of what was actually Nate’s sundae.

Laelia’s cousins (Nathan and Josh) at Nate’s goodbye dinner.

Lali (on the drive home): “Where Nate?” Me: “He had to go bye-bye.” Lali: “Bye-bye Nate.”

Two minutes later. “Where Nate? (She thinks about it.) Nate bye-bye.”

Oh and Laelia totally wants a tattoo now. (Nate is a tattoo artist.)

Me: “Laelia, do you want a tattoo?”

Laelia: “YEAH!”

Me: “Laelia, do you want hepatitis?”

Laelia: “YEAH!!”

Me (mock scolding): “What do you say?”

Laelia: “Pleeeeeeease!”

At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” I couldn’t help but tear up. “You’re doing it! You’re walking! Look at you!” She grinned her head off.

Didn’t have my camera on me.

I would give almost anything to see her walk one day.  Her doctor, well all three of the orthopedic doctors, said she flat out won’t walk–not enough muscle.  So we wait on technology. Come on engineers! Make me some legs! How hard could it be. (That’s a dare by the way.) (Don’t make me make the chicken sounds.)

PT and OT went really well. Laelia’s teacher from school, Dawn, came over to learn what therapies we do with Lali. By the way, I don’t know how to express how grateful I am for school! I learned that they are working on making adaptions so Lali can join in on snack time. They are already thinking ahead to how they can help Lali move on her own out to recess. And I heard about some of Lali’s friends at school who like to imitate her movements. There are typical (the word we use instead of “normal”) kids in the class so Lali has physical models for movement. But Lali is influencing them! I know another baby friend, Christopher, who did the same thing when they were spending time together. It’s pure flattery from these little kids, but I know it’s not from the older ones. I’m not looking forward to the day when Lali gets teased in big kid school. But for now I’ll not worry on it overmuch.

Taking the kiddo to a well-deserved Disneyland adventure this Saturday.  I have requested almost all of my records for the Seattle clinic in March.  Got some good advice from Jill, our OT, on questions to ask the specialists there.  Bought my flights.  Planning a trip to the Space Needle. It’s gonna be good!

It’s been such an up and down week that I don’t even know where to begin. I think my feelings must be tied up with this goofy Southern California weather: one minute the sky goes black and we get heavy rain and 80 mph winds, then the next minute the sun is shining bright as can be. (And the drivers down here behave exactly the same way in either situation. :-/)

One of the very positive “Up” moments happened yesterday. We received a gift from dear friends that solidified our decision to go up to the arthrogryposis clinic at Seattle Children’s!!!!  We called up the clinic to discover that ALL of the doctors we wanted to see were still available!  This will be our first time at an arthrogryposis clinic because we don’t have anything like that around here! (Well, it’s pretty rare everywhere really.) We did piggy-back on a muscular dystrophy clinic when Lali was little, but amyoplasia and muscular dystrophy are very different. And it was the muscular dystrophy clinic that had us get the muscle biopsy that showed inconclusive results since arthrogryposis, the kind Lali has, does not have any genetic markers or known causes. Maybe the arthrogryposis clinic would never have had us get the biopsy. I think I’ve decided not to think about it too much.

Part of the excitement of this clinic is the chance to see Dr. Judith Hall. She is the expert on amyoplasia and a bit of a celebrity in arthrogryposis circles. She is seeing Laelia March 31st!  Eeeeeeeeeeeeeeee!! We are also seeing Dr. Song and Dr. Hanel for Laelia’s orthopedic second opinions, and just in time for her next surgery evals! I just spent a few hours today trying to get several, six to be specific, different records to forward to the clinic. We needed her newborn records from her pediatrician, OT records, PT records, surgery records from her orthopedic surgeon, orthopedic records from two other orthopedic doctors and the biopsy records from her neurologist.  That is a ton of paperwork and apparently medical professionals have decided that copies of their work should cost me 25 cents A PAGE!  Blarg!  Then my boss walked up to my desk with paperwork that showed my time off request for those dates was approved! I described this whole process to some friends today as part of a crazy and frustrating and fulfilling day!

The other exciting part of this trip is that Laelia and I (Mommy) are going with a friend and her son! I love friends! So fun times ahead. In fact, I have a lot to be grateful for since without this friend I would have never heard of this clinic.

And I’ve decided that this trip totally outshines the “down”s of my week. But one thing I did want to put out there, for those of you who are in the know, is a plea for prayer for my extended family. Whatever the outcome, hard times are ahead for my cousin, well, cousins really. They are in the middle of a heartbreaking situation, and just have to trust they are being carried through it.

Well Laelia is demanding, “Rain please!” So this is my cue to grab her and run out into the storm while she laughs and wiggles. Then we come in soaking wet… which is only fun for one of us. *sigh*

On September 16th doctors did a muscle biopsy on my daughter’s leg. A couple weeks ago they had lost or misplaced the results. Last Friday we got an evening call saying they had found the results, but they were inconclusive. Meaning the test was for nothing. So from the EMG and muscle biopsy all we know is that she has very little muscle that’s extremely weak, a lot of those nerves may be missing or just damaged and we have no idea why. Did I mention this biopsy left a scar? Grrrr.

So this bummed me out more than usual. I don’t know why I was expecting something concrete out of this test. This is arthrogryfreakin’posis we’re dealing with here. But I was hoping for some piece of information gleaned from this test to show if I caused this or not. Or tell me if it was safe to have another kid someday. I think I would rather have had a bad test result than an inconclusive one. Then at least I would have some direction. Well, we do have some direction. We were given the names of two doctors who deal with genetics in our area. Right now I’m thinking we won’t do anything with them.

I’m considering going with a friend to see some doctors in Seattle this year. At first I was a little scared because getting the biopsy news left me feeling unsure if I could deal with more bad news. But this may be a good opportunity, as my friend put it, to find at least one thing to help Lali. There is a doctor there, Judith Hall, who is the amyoplasia expert. The arthrogryposis clinic starts March 31st.

The only problem is that yesterday they called me and informed me that my insurance does not cover the whole thing. It will cost around $1,500 out of pocket. At first I thought, “No way!” But I’m realizing after talking with the scheduling gal that seeing these famous AMC expert doctors who are getting up there in years while they are still doing clinics of this sort is probably worth it. The hospital scheduler said she had people with AMC coming from all over and they all wanted to see these doctors! Also our insurance is not going to get any better, and we may need this information now before Lali gets much older. Especially now that we’re looking at more surgeries coming up soon. I definitely want some second opinions. And soon.

We have an appointment with Lali’s surgeon in about four months to evaluate her for her next hips surgeries.

So we’re considering going to Seattle despite the cost. If we could make payments or something I think it could work out over time. We’ll see. Of course if it doesn’t work out then it doesn’t work out, but I want to know, as a Mommy, that I’ve done everything I can for my baby.

Laelia’s Christmas Present from her Parents!

She’s kicking it to Mama.

We went to a wonderful physical therapy appointment last Monday night. Well a wonderful OT appointment too, but PT was exciting.  Lali is always better about therapy with the therapist than she is at home with the frustrated Mama! :)  But her new ball is super fun for therapy; she loves bouncing on it and hanging off it.  I’m always impressed with how many things a PT can figure out to do with a giant ball.  It also looks like Lali is getting a bit stronger.  And we don’t even realize that there’s any difference (which is depressing) until we meet with our PT and she notices (which is exciting)! :)  It’s encouraged me to be better about Lali’s weight bearing exercises and hip stretches for sure.

The numbers:

So Lali is 30 degrees from zero (straight) on her right knee and hip and 20 degrees from zero on her left knee and hip.  It’s better than a lot of kids with her condition, but having those contractures are keeping her from being able to use a stander, among other things.  However, we are going to double our leg stretching efforts and see if we can’t get that closer to 15 degrees on both sides.  Or even if we can just get her closer and put a platform shoe on her right foot and…  I dunno.  Of course we have not seen much gain in range of motion in her knees for a long time so maybe she’s hit her limit and needs more surgery.  I’ve researched the knee surgery it requires (a zig-zag Z scar on the back of both knees) and am hoping we can avoid it.  Hip surgery is also something we’re working on avoiding, but it’s looking more and more necessary.  Pray we can stretch out her hips in the next four months!

Even though she’s not quite straight enough, her PT is going to call some vendors and see about different modified standers for her.  (A stander is just a big contraption that straps you into a standing position to put weight through your legs. See picture below.)  So it would be really exciting if she’s able to use one!  The last time she tried to use one, her legs were too bent and her hips were too abducted so it didn’t work at all. Gave us a cool picture though.

Baby Cool.

Our PT is also going to start looking into electronic wheelchairs for Lali. She said she’s thinking Lali will need one by the time she’s three years old. Insurance companies are generally not crazy about replacing them more than five years apart so we may have to get something big that she grows into.  So by the time she starts kindergarten she’ll hopefully be mobile!  It’s fun to consider!

Speaking of kindergarten and the future in general, I’ve been kinda worried about it.  Because she has no mental disabilities (Yay!), Lali will be kicked out of all programs, like her Early Head Start school, at age three (Boo!).  Then we’ll have to find a program that will take her AND change diapers.  (None exist.)  Then we have to hope to figure something out (in the way of taking care of her potty needs) before kindergarten.  I’ll check with the American Disability Act people and see what exactly is covered by the concept of equal access.  I’m sure it will work out, but I worry.  I let worry get the best of me yesterday, and I’m determined not to repeat that today.  Back to focusing on her great PT experience Monday! Yay!

Laelia is so stinkin’ smart! She anticipates the next word in a song or story. She is learning her colors and even though it’s really hard for her, I will catch her saying, “White white white. White sock white sock…” Like she’s trying to remember the color white!

She also has such an imagination! Her duckies have to kiss every time we’re in the bath now. She has a Mama duckie and a Baby duckie who go down the “slide” (the bump in her sit-up bathtub). She made a bread stick “broom” and “beep beep” across the table at Olive Garden along the imaginary road. And she feeds her baby doll, stretches her, gives her milk, sneaks her cookies and takes care of her every whim.

So her achievements these last months definitely outweigh any delays in gross motor skills. Sitting up by herself is not looking like it will happen this year like I’d hoped. I was holding out for a Christmas miracle, but it didn’t happen. Lali gets sitting up practice every day now. I’ve also given her a ton of cookies as motivation… making her somewhat of a cookie monster. But she still seems so close and so far away. It’s that initial hurdle of having enough arm strength to get her far enough up to go the rest of the way that’s the issue. Well here’s for goals for next year! Oh and here’s her progression in videos:

Lali giving Chelsea a kiss.

I just like this picture.

I was just marveling at my little wonder daughter last night. She is so sweet and so smart. She knows when Mama is sad and how to comfort me. (My sushi place wasn’t open.) She knows her colors. (Everything in the world is yellow, right? Oh I mean, “Lello.”) She is saying new words like Pokeylope (our cat), Cheerios and Kangaroo. Finally three syllables! She is also so social with both adults and other kids. Our neighbors held the gate open for us yesterday and Lali said thank you about seven times.

I’m comforted by her new knowledge of her world! I love my little girl!

And after all that this may seem silly, but I would love if Lali could sit up by herself before the new year. It was a goal we had for her last year, and she’s close, but she can’t do it by herself. Just not enough muscle. Well I really don’t know if she’s just missing the muscle to do it or if it’s too hard so she doesn’t want to do it or if it’s something she needs to be a little bigger to even do. Charley and I both admitted last night that we just don’t know if she’ll ever be able to do it. And we really need to adjust our goals and expectations to Laelia, not her to us. But it would allow her so much more freedom in her world if she could sit up. (By “sit up” I mean getting from lying on her back to a sitting position.) She would be able to reach things on the low table, or eat a snack without me having to carry her over to it and putting her into a sitting position. Plus my back would get a brake. So I thought I’d throw it out there as a Christmas miracle wish. It’s what we’re praying for. You’re welcome to join us!

Physical Therapy

This is the year for mobility! We’re working hard to see Laelia sit up, stand and scoot before she turns three! We found out at our last trip to the PT that her body is still not in the position for standing. That’s what the surgery was for so we’re bummed as you can imagine. But she is much straighter! We have some new hip stretches for her (that she hates) and some new weight bearing positions for her (that she hates more), so we’re hoping all this hard work will pay off before next October. If not, then we’ll see if another surgery can’t do the trick. I’m pretty optimistic though.

It’s weird, sometimes she can’t do something that I would think she could do, like get out of a kneeling position on the couch, and then other times she does something I didn’t think she could do, like scoot across the living room!

Here’s the video of the scooting!

We found out some interesting things this week and I’m not sure what to make of them. Apparently how her hair all seems to come from that whorl in the back and then sweep to the side (she doesn’t have a straight part like me) is due to her arthrogryposis and the position her skull was in while in the womb. Also her labia didn’t fully form since her legs were so wide spread in the womb. It probably won’t affect anything, but who knows. Just random things for Mommy to worry about.

Anyway, one thing the surgery really helped was her feet!

This is before her bath so there’s still crusties on her feet from the casts.

Happy girl!

~~~

Progression of the left foot:

Left foot at birth.

Left foot after minor surgery AND serial casting.

Left foot after major surgery!

Go lefty!

Third set of casts in two weeks. At least they’re cute, short and of course PINK!

Laelia’s casts slipped. AGAIN!!! Once again I find myself heading to the emergency room at Children’s Hospital, getting redirected to the clinic casting area and getting an emergency cast removal. (Fine. I didn’t want to work today anyway. *sigh*) The pin in her left foot had come up again too. The difference this time was that Laelia’s surgeon was in the building at that moment (being followed by his posse of three other doctors) and willing to see me! Fifteen minutes later (which is like a split second in doctor time!) he was checking out her feet and giving the okay for removal of the casts. He asked the tech to try to save the pin, but then later decided that the pin was just going to keep popping out so it was removed instead of screwed back down. (So much for Daddy doing the second pin removal. *sighs again*) All over again the baby girl gave a noise like she had been shot by a gun, then came the blood… and they asked if  I  was okay!?! I was thinking, “Forget me! Just take care of the my baby!”  Well that was followed by thoughts of, “Don’t pass out don’t pass out don’t pass out don’t pass out...”  Anyway, she was then recasted in short casts without a bar to avoid future slipping. New casts. Oh joy. At least there’s no more pins in her feet!

The casting tech asked me what color I wanted for her new casts… um, is there any other color? :) 

Laelia screamed as soon as she saw the surgeon all the way until we were almost home. She screamed for the entire cast removal and even louder after the pin was removed and then pretty darn loud as they recasted her. She was also shaking like crazy, bright red in the face and drowning in her own sweat. She HATES this! Then she cried through the check out process, getting my parking validated, the looooooooooooooong walk back to the car on the second floor of the parking garage and most of the way home. I got all sorts of looks and stares and pointing fingers from people. That’s unusual for this little girl–I mean that’s a little over two solid hours of screaming. Laelia had a miserable time.

So we decided when we got home that the rest of the day today will henceforth be known as Laelia Day! I promised her that she could have whatever she wanted for lunch and dinner. Any snacks she wanted. Any nap time she wanted. And we’ll even watch cartoons! When we got home she demanded I read her every book we owned! That took a while. Then she wanted some time with Puppy (the name of our kitty), who just had to put up with being pinned down by me while Laelia happily tugged her fur. Now I’m all scratched up. Then Laelia got to play in my purse and she got my cell phone out and started to dial numbers. Sorry strangers! What can I do? It’s Laelia Day!

Hooray!! Happy Laelia Day!

If you can really measure your strength by what it takes to discourage you, then I need to prove that I’m stronger than these casts, and this day.

The casts slipped AGAIN! But this time we didn’t change them. We’re waiting for them to slip just a little more. Ugh.

The day didn’t go well for Mama. Funny story. Charley and I had a great baby-free time at Disneyland yesterday thanks to Chelsea and Adam. But I guess that wore me out since I slept through my alarm this morning. Then I ran around looking for pants… realizing that they were dirty or in a wet pile saved from the exploding, fiery dryer which our apartment manager refuses to replace after spotting a line in our contract saying he doesn’t have to replace ANYTHING…EVER! *grumble* (Read your contracts, kids!) So I left in pajama pants (yoga pants) and wet hair. Oh and I lost my phone. And my husband stole my bathroom while I was looking for it. And because the bathroom is the only light in our bedroom (since they never installed a light in there and the outlet that the lamp is plugged into doesn’t work anymore) I cut my arm stumbling around in the dark. Then I put on my shoes and somehow managed to rip out part of the sole. Then I got in the car and realized I was completely out of gas. When I got to the pump, I realized I had lost my credit card. (No kidding!) After fishing six crumpled dollars out of my car, the lady claimed that the pump number I gave her “didn’t exist.” (I think she was messing with me because she thought that would be smart to mess with the totally frantic girl with wet hair and pajama pants.) Then I got stuck behind a car accident. By this time I was 15 minutes late for work. Then I got an email from Charley telling me that we had OT/PT today at 3:15, but I didn’t get off work until 3:00. So I had to get off work early after arriving late (my poor boss), and pick up Lali who decided to do poopy time right then and there. Then I got lost on my way to Children’s Hospital because I was coming from a new direction, from a different freeway. We realized her casts had slipped AGAIN during PT. Then during OT I realized I had forgotten my camera and Laelia’s splints that were suppose to be adjusted. (Did I mention I’m still in my pjs?) Then Jill noticed Laelia was very loose (or as loose as you can be with arthrogryposis) and I explained that Lauren had just done her stretches. Then Jill praised me for having such great friends who did Lali’s stretches, at which time I realized in a panic that Chelsea was coming over to do stretches today and was probably there right that moment because I never called her! Then I realized I LOST MY PHONE AGAIN!!! How do I do this?! Someone reminded me I had been at Disneyland the day before and I thought I’d lost it there. I’m sad to say it took me some time to realize that I was an idiot who had just called Charley for directions to Children’s so it had to be somewhere. I found it an hour later at the bottom of Laelia’s bag that I had packed last second.

*pant pant*

In other news, today during OT Laelia successfully ate applesauce by using a spoon all by herself for the first time ever!!!

So in conclusion:

Best. Day. Ever.