Laelia Sky

We try to do Laelia’s therapy everyday, but sometimes we are bad and it doesn’t happen. It now takes 30 minutes to do her stretches and she screams most of the time and then takes ten minutes to recover. After all that I hold her and relax for the next 24 hours until I have to do it again. But we missed two days this holiday week and felt wretched. It’s so important but it’s so hard. After missing a day, Laelia’s body is more stiff and it seems more painful for her. And we feel terrible.

Reasons we miss doing her therapy in a day are various and sundry. If it’s too close to the time she ate, we avoid it because she has thrown up when we’ve done it right after a meal. We also avoid waking her (under any circumstances) so if she’s asleep we don’t do her therapy. If she’s unusually happy or playful, it is just cruel to upset her and make her scream, and if she has to go to a doctor for something that will cause her pain I hate adding insult to injury. I find myself waiting for just the right moment, and it’s happened a handful of times that I have gone through a whole day and not done her therapy. I feel like she hasn’t left my side all day, but I couldn’t find the time. I hate that! It’s so important!

So my New Years Resolution is to not go a single day without doing my daughter’s full therapy at least once!

To be more clear, I call *everything* physical therapy since before I knew there was a difference between therapies, but in reality there is physical therapy, occupational therapy and stretches (which we are doing through occupational therapy). Some therapy is easy and some is terrible. Physical therapy (PT) works major muscles (gross motor), occupational therapy (OT) works smaller muscles (fine motor) and stretches help with ROM (range of motion) and involve stretching every joint (some in two different ways like with her inverted shoulders). 

PT involves tummy time, leg and arm movements (that stimulate crawling in case she can do that someday), hips and, when she gets out of casts, her leg movements. As you may have guessed, PT is her favorite. Tummy time can be done while flying her through the air (as seen in her super hero blog). She loves that and it’s fun and it’s therapy! Before we would put her on the ground (which works the same neck/shoulder muscles) and she hated that. We also do hip rolls which seem to calm her. Sitting up is also PT, but it’s too easy with the casts keeping her up. So far the harder PT is waiting for her casts to come off and her to get her new special shoes and braces.

So really it’s only the OT and stretching that she hates. Since her hand does not want to curl into a fist, stretching it that way and teaching her to hold a rattle can be terrible for her. Some medical someone told me that if I wanted to make sure she’s eating enough, just keep in mind her stomach is only the size of her fist. So curl her hand into a fist and as long as she gets at least that much she isn’t starving. Well I can’t curl her hand into a fist. OT will help me do that someday.

I’d also like to find time for massage therapy, but who are we kidding. A lady from the Early Start program (who is there to see Laelia hit some developmental and physical milestones that we’ve set up for her) came to my apartment several times and taught me how to do it. She even gave me oil and a CD of calming music and everything. I have incorporated the “calming” touches into OT stretching, but haven’t found time to devote an hour to a full massage yet. She deserves one, but she often thinks it’s going to be or turn into therapy and she’ll start to fuss.

So I feel horrible because today I stretched her for the first time in two days. She hated it and screamed and cried. I NEED to do it everyday. Other things I should be doing everyday is reading to her and praying for her. So maybe part of keeping my resolution is to write up a schedule and stick with it. I have been doing her more difficult therapy around the same time each day and she seems to do well with that. Let’s get her used to a routine and maybe she’ll even start sleeping at night more if we stick her to bedtimes.

Okay schedule schedule schedule!

Once upon a time there lived a little girl named Laelia. She was an everyday citizen who should have been unconcerned with city crime. But Laelia had a secret. She was in fact: Super Bitty Bear!

What’s that Daddy? You hear a crime being committed? Will the machinations of evil never cease? I’m on my way!

Zooooooooooooooooooooooooom! Got there just in time to save the day!

All in a day’s work. It’s tough being a super hero.

If I’m under the tree does that make me a present?

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A present for all our friends and family: Christmas pictures are up! Didn’t have time to send out Christmas cards with pictures this year so I hope y’all don’t mind printing these out instead. Go to the Baby’s First Christmas! album or click on the picture below. Merry Christmas Eve!

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Presents!!!

I can’t stop blogging. I’ve been on an emotional roller coaster lately. Maybe it’s the holidays and all the stuff Laelia’s been through this December. I’m just sad.

For instance, last time baby and I were at Children’s Hospital (which we’re at a lot), we qualified for and received a teddy bear. It was some ‘teddy bears for disabled kids’ charity. There was a little girl who was around four years old who lacked control over her body and was drooling down the side of her face. She also had what looked like some mental disabilities. She got a bear about as big as she was and she started smiling like crazy. It made me smile. I mentioned that it was sweet to one of Laelie’s therapists and she said, “Oh Laelia’s bear is at the front desk.” That confused me for a while. Nothing’s wrong with Lael… oh.

So for an incredibly stupid reason, I couldn’t stop crying because some nice people gave my daughter a teddy bear. I mean she qualified as ’severly disabled enough’ for a free teddy bear from some charity. Well.. good for her?

Other gifts from people have not depressed me; they’ve made me happy. A whole dentist’s office gave us a Christmas gift that meant so much to us even though most of them didn’t know us. I was touched. So why am I depressed now? I think the difference may be that I used to donate toys and stuff to the bins outside the library and grocery store and imagine those poor kids getting a teddy bear… okay not gonna cry again.

Moving on to more depressing stuff… 

I still can’t do most occupational therapy stretches on Laelie Bug without her crying. Her right hand is so stiff. I hate it. At least that little mentally disabled four year old is happy. I wonder what it would be like to have a child you didn’t have to hurt everyday.

 SUCKS!!!

On December 20th, 2007, my daughter touched both of her hands together for the very first time since she was born!

At birth her elbows didn’t bend hardly at all. We have done a lot of physical and occupational therapy on her since then. We got them to bend enough to touch each other a few weeks ago, but of course we had her in casts. Yesterday Charley and I gently bent her elbows and then placed her hands together. She looked down at them a few times and then back at us like, “What?”

Also her right hand looks so much better. We lovingly call it “the claw” since it’s stuck in that possition, but hopefully we can uncurl it a bit in the next few years (months?). Her elbows still only have passive movement, meaning she does not bend them on her own yet. But the exciting part is that (granted she’d have to bend her head down) she could get her right elbow to bend enough to get a spoon to her mouth! Of course we’re still working on the hand and fingers to be able to hold the spoon, but even though it hurts now, I’m hopeful she could grip something with maybe even just a few more months of stretching. Oh Lord, just let the muscle be there! Please let my baby be able to move her arm!

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My fingers are going to be longer than Mommy’s!

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When I put this thing on this other thing it makes Mommy and Daddy happy… parents are weird.

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Hi Daddy! Look what I can do!

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Look how far my right hand has come! Hard to believe this used to be the extent of how much I could bend my elbows too!

Laelia is doing great from her tendon release surgery. She stayed up almost the whole first night doing that little half-cry/fussing thing she does when she’s in pain. She did even better the second night, but was up every hour and a half. Last night she slept with me on the floor in the living room (so Charley could get some sleep) and she did really well. She got three hours in a row from 1am-4am and then she slept from 5am-7am and 8am-10:23am solidly. She will be well prepared for college sleep patterns.

The day after surgery, she had a splint made for her right arm. They didn’t remove the cast on Monday, but instead just bivalved it and taped it in place. That way the cast wouldn’t come off until we had a splint to replace it. I almost wish we could have just had the cast off for a day like we did when the left arm cast fell off. Her poor right wrist and hand were so sore and stiff and we had to bend and stretch her into the splint while she screamed. It’s a hard job to make those tiny little splint parts. They start by cutting pieces of paper towels around her arm so that it won’t hurt her and then they cut the plastic pieces and heat them to conform to her arm. It’s quite a process. Sometimes it takes several “try-ons” and readjustments before the splint is finished and that is what she hates most. Before they could get the splint on, they had me scrub about seven layers of dead skin off of her arm and in between her fingers. And those fingers did not want to move! This whole process happened not even 24 hours from the time of the surgery. Laelia missed a feeding and cried herself to sleep that evening.

The bad thing about this new splint is that you have to hurt her to get it on. Her wrist is bent funny so I have to hold it down to get the thing on. I mean, it’s made that way, that’s not an error. Also her thumb was bent in such a way that after four attempts to make a splint to fit it, the therapist gave up and promised to work on that more next time (on the 28th).

Yesterday she was doing much better. I didn’t do her therapy since she was just miserable the day before. We just relaxed. I even took her to work with me for a Christmas gift exchange. She got passed around and seemed content. She really is such a good baby.  

I was too upset to take a picture of her right hand after the cast came off and now I regret that since it looks so much better than it did. The hand is still awful swollen and there are deep groves where the fingers are bent. I trimmed her nails yesterday and massaged another layer of dead skin off it today and that made a big difference. I also took 45 minutes to stretch those fingers. I will continue to massage it until she can be touched without crying or flinching. Today was the first time I’ve been able to touch her right hand with the splint off without her crying too much.

I’m now getting to the point where I enjoy seeing all her fingers again. Yes, they have a long way to go before they look like typical fingers, but it’s a start. OT now takes twice a long (about 30 minutes if you go slowly) so I’m going to try to get us in a new routine where maybe I can do one half of her upper body and then the other half later.

So many people have told me that it’s amazing what medical technology can do nowadays. It’s true that had she been born even 100 years ago, she would just be crippled with no hope for future independence. Still, hearing about medical science does not comfort me. Not after all the research I’ve done. There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” I think it’s just natural for people to share stories of their cousins or friends who had this or that wrong and got this or that surgery and are now fine again. That’s just not our situation at all. I understand it’s hard to know how to comfort someone. I just wish I could hear more, “That sucks,” and less, “Thank god for medical science.” Can you tell I’m unhappy with medical science at the moment? :-/ I am learning not to put all of my hope in doctors and devices, surgeries and splints—but instead putting more hope in God, positive thinking, my daughter and supportive friends and family.   

I’m not sure what this blue light thing is that appears in my box when Mommy goes upstairs…

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…but I have the feeling I’m being watched.

I was driving down the road on my way to the parking lot when this handsome man walked up alongside my car and let himself in. It was my wonderful husband! He got off work an hour early and surprised me. He had been walking up and down the sidewalk waiting for me to drive by. I was so relieved that I didn’t have to do this with baby alone.

Baby was a little bit more fussy than usual. She was fine until the casts came off. She is an old hat at casting and knew we never take them off without stretching her legs and feet into new ones. Maybe that’s why she was so fussy; she kept waiting for us to cast her. We went into another room where we waited for a while. She just got fussier and fussier. Charley walked her up and down the hall and threw her up in the air. She just stared up at him with these sad little eyes.

Her feet are looking better than they ever have before! They don’t move, though, and the toes are curled in, but they now turn out exposing a part of the ankle where the tendon surgery could take place. She started crying as we were leaving the room. There was someone walking in front of me leading us to the waiting room and I wanted to run her down. (Go faster or let me run back!) Some other baby was screaming in a room next to where we waited, so while we didn’t hear much of our baby’s cries, that other baby made the waiting torturous.

 Now the ankles are a bit more straight. They stink like blood though and I hate that. Some of the blood actually seeped through the gauze and through the cast itself. Can’t get that off for three weeks. When the casts dry a little better, I’m going to try to cover it with white crayon. It makes me feel aweful looking at it.

It took almost an hour to get home in traffic because of an accident. She was in the back seat with a dirty diaper. We finally got her home and changed and the plaster washed off her. She breastfed for over an hour and cuddled while fussing. Charley started kissing her face while she fussed and that kept her quiet. He announced, “I’m kissing another girl in here!” while I was in the kitchen.

She’s asleep now and I’ll give her some baby Tylenol when she wakes up. She is fussing in her sleep too. All in all I expected it to be worse and it wasn’t so bad. I noticed when the heavy casts were off that her hips wiggled a lot more. Her legs don’t have a lot of mass to them, but I’m hoping they might firm up once she can move them again. I’m not making predictions on them yet since she’s been in casts most of her life, but I had hoped they would feel differently. Oh, I love her so much and I hope this is all worth it.

I am really nervous about our surgery tomorrow. I’m wringing my hands. Tendons in both feet are going to be released. This is the best time to do it. This is one of these amazing surgeries that the longer we wait, the more major the surgery. If I had this done, they would have to put me out, but if a baby has it done, they just give a local shot for the pain. Then they will cast her legs around the surgery for three weeks so I won’t even have to clean the area.

I’m so worried about this. I’m trying not to think about it. My stomach hurts. It’s so minor a surgery compared to the surgeries I’ve been looking at. If she has any good muscle anywhere on her body we’re considering moving it to the bicep of her dominate arm. That’s pretty major. This should be cake, but it’s the first of what could be many. I’m scared.

But moving on to happier things. My friend, Megan, just announced that Laelie would be getting a new friend in August. I’m so glad she has so much friend potential! My other friend, Jess, is moving to Washington DC. At her going away party today her little boy, Andrew, asked me if Laelia would miss him when he’s gone. So precious! We went to church this morning and left Laelie in the nursery. I am pleased to announce that she now has a boyfriend, Jonathan. He’s a few weeks older and they just stare at each other in the nursery. So cute! And, unlike my rebellious daughter, he has bright blue eyes.

Speaking of rebellion, I tried to take some pictures of Laelie before the surgery while she’s still up and about and happy. She’s not cooperating.

Thbbbbb! I hate Christmas pictures!

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Yeah, I can see that.