Can we go back and add this to her chart?

[Want to see some videos of my daughter doing amazing new things? Scroll down to the bottom of this post! But if you want to build up the suspense, which is way more fun, please continue reading!]

For a quick update on our Philly plans, we submitted our application to Shriners yesterday morning. Now we wait a month to see if we’re accepted. Her doctor will be Dr. van Bosse. He’s emailed me a couple times and seems optimistic. In fact, to quote him, “I’m certainly interested. Am in Peru at the moment [...].  One important point that experience has taught me, even at 4 years old, it can be difficult to figure out who can walk. These kids keep surprising me! Don’t give up hope easily.”

Then after I gave him links to her website with pictures he wrote, “I’m very encouraged by what is see in the pictures [...].  I certainly see every reason for working towards maximizing her potential.”


He continues, “[...]   Unfortunately, Laelia’s treatment will need some planning of the stages, therefore I would have to see her first, independent of any surgery dates, but we will try to limit your back and forth travels as much as possible.”

So now I’m saving up for yet another long trip with my kiddo, and hoping for a side order of derotational osteotomies. We’re thinking that Laelia and I will just take a couple days off work/school for a long weekend. We’re trying to decide if we should do it now or wait the six months other doctors are recommending. Lots to think about. I guess it will mostly depend on when we’re accepted and what we can afford. I’m just  hoping  Dr.  van Bosse  is as encouraging and optimistic in person as he is over email! And from all accounts and testimonials, he is!   :)

We had an appointment with Laelia’s pediatric orthopedic surgeon this morning to go over what the Seattle doctor talked to us about. In the waiting room Laelia said, “Look a baby!”   The only other kid in the room looked to be four so we asked where the baby was. She responded, “The baby’s over there in the picture.” Whoa. Full sentence, clearly stated and masterfully communicated!   Sure enough, behind us was a blown up and framed picture of the doctor we were about to see holding and examining a baby. We hadn’t really noticed it. My kid is SO FREAKIN SMART!!!

At the time of the appointment we had to admit that Laelia couldn’t sit up by herself, even with assistance, or do a lot of other things. This was also written in the Seattle doctor’s letter to me. So I had no idea what what coming later this same day!! (Oh but getting ahead of myself.)

Once again it seemed the doctor had one foot out the door from the moment he entered our room. After the initial greeting and exam, I turned to grab my list of questions off the table and when I turned back I noticed that most of the  doctor’s back was to me and he was inching towards the door. That automatically stressed me out and would usually lead to me skipping questions or lumping them together. But this time I just calmly and defiantly wasted his time. :) We walked out with FOUR prescriptions: wheelchair, knee immobilizers, pool therapy and hippo therapy. Then my husband added, “See if you can get a prescription for a pony!” So when  the wonderful surgeon’s fellow returned with more prescription paper I added, “Also Laelia would like a pony.” He responded, “So do I!”   Haha!  Now where can I find a pharmacy willing to fulfill that order? :)

I don’t know why these appointments get me so down. The surgeon is always cracking some joke and then lightly scolding me for having no sense of humor. In fact it’s kind of formulaic: he cracks the  joke, I put on a small smile, he puts his hand on my shoulder then  looks around the room as if to say, “Everybody else thought that was funny, right?” then the other doctors/fellows smile and nod, then I get  some small lecture on how I need to relax.

He doesn’t get it.

But at least he’s skilled at what he does get. I mean her feet look great after he got to them. Not perfect, but excellently fixed. (Plantigrade is the word.)  I think part of the  reason I feel so down after these appointments  is that I’m  being faced with the harsh realities of her disabilities. Day-to-day life doesn’t bring that up. In fact both her father and I forget she’s disabled most of the time until certain events bring it up. In lots of ways she’s the typical happy-go-lucky kid. Then we go to this kind of doctor’s appointment and realize she’s not so lucky. And  often we’re given a rough pessimistic guess of how she’ll be in the future from a doctor who probably couldn’t recognize her face in a picture line up the next day. (Well that probably isn’t true.  They do know who she is. In fact  one of the doctor’s fellows rode with us in the elevator and out of nowhere she said, “Oh this is Laelia!” I didn’t really recognize her right away (we’ve seen this  doctor only a few times),  but she was one of the doctors who observes Lali’s appointments. So because she’s such a rare case,  maybe Lali is popular after all.  :))  

I felt pretty down afterwards. I found myself praying she would prove them all wrong in the six months they’ve given her to magically build enough muscle so they can operate. Dear Lord please!

But I haven’t gotten to the amazing part yet!

An orthopedic wedge costs around $250 depending on what you get. I found a 30 degree orthopedic bed wedge for adults (different use, same idea)  for $60 so I ordered it. The Seattle PT  recommended a 45 degree wedge, but I just couldn’t find one that was cheaper than $200 so I went with  the 30 degrees which is much more difficult to use. The Seattle PT expressed some doubt  that she could sit up with just 30 degrees, but Lali doesn’t need to do a straight sit up; she can use her arms.

Laelia sat up by herself (using her wedge)  for the first time I’ve ever seen! And the best part:  I got it on camera!!!

Laelia also can now do a push up and lift her pelvis so that her weight is more  on one knee!!!

So needless to say I’m no longer feeling  down from my morning appointment. I’m blessed! I’m thrilled! I’m drowning in answered prayer! I’m singing songs and dancing! I realize I’ve  been trying to  “fix things” and I’ve had to let go and realize I can’t fix this. I can do exercises that help her, sure,  but I  can’t make her  not hypotonic anymore.   But my God is so big, so strong and so mighty, there’s nothing my God cannot do!

5 Responses to “Can we go back and add this to her chart?”

  1. Maureen says:

    How exciting to have such a great example of God’s grace on the same day that you started out discouraged. Laelia is so cheerful and smiley at her accomplishments. Praising the Lord with you!

  2. Tracey S says:

    And my prayers have been answered too. I’ve been praying for a long time that Laelia would get the chance to be evaluated by Dr. vB because I’ve seen so many kids w/ AMC who present similar to Laelia & are now weight baring & working towards walking. And YES he’s that optimistic in person!

    I laughed by butt off at this sentence “So now I’m saving up for yet another long trip with my kiddo, and hoping for a side order of derotational osteotomies.”

  3. Lauren B says:

    AHHHHHHHHHHHHHHHHHH!!!!!!! *tears* GO LAELIA, GO!!!!!!!!!!!!

  4. Linda Wesley says:

    WOW! I am saying, out loud, WOW! And I started squealing earlier and … you know. I am totally blown away. That is excellent. My God is also quite big and I have been talking to him about Laes for rather a while now. =) The encouragement is huge.

  5. Bethany says:

    Sophie and I are watching these videos over and over again (at Sophie’s request: “I see Laelia again!”) and cheering for your determined and precious little girl. She’s absolutely full of miracles, isn’t she?

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