Love my baby.
Thanks for checking in everyone! Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. We will also finally cut off these awful casts that are cutting into her legs since they’ve been on her for three weeks and she’s trying to grow here! I haven’t been able to sit her up for the past several days since she’ll cry and the casts will cut into her. She outgrew them last week! But I can’t soak these off since I’m afraid to mess up the surgery site. Charley and I will be so glad when these things are off. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work (since there is nothing to anchor them) that’s what I will be trying to push through tonight. We’ll see. Laelia will also get some special brace thing for her feet. I’m not sure when that happens though if she has more casts. I’m really nervous. Charley isn’t able to be there either. I’ll go over at three and be out of there by six so it will be some fast decision making! I just hope that we do the right thing and that the surgery worked its magic and that people around me are hopeful and less “doctorlike.” Deep breath.
In other news:
I wish they came three months old at birth. This is the absolute best age! Laelia is smiling and awake more and so cute! Her little cheeks are rounder, she has a tiny bit of hair, her stubborn eyes are turning even more brown and she has more range of motion than ever! She can now be placed fully on her tummy (without a blanket under her chest) with her arms bent in front of her for three minutes! It is so adorable! Did I mention she smiles a lot now? I love that!
I was able to work out for the first time in over six months (I know that’s terrible) on Sunday. Laelia just stared at me the whole time like I was crazy. Then we took her to see the Dead Sea Scrolls and she was so good! She slept most of the time, and when she started to fuss, I picked her up and she got to look at all the scrolls from up high. A lady walked up to say “God bless you” or whatever people that these sights attract say, and Laelie grinned so much at her that I just stood there and listened to her. I kept thinking, “Say whatever you want, my baby loves you!” 
She said that her’s was twenty and I replied, “Oh you have a handicapped kid too?” She looked at me and noticed for the first time Laelie’s arms and legs (it was dark in there) and said, “No, but she’s twenty.” I felt so dumb. She just wanted to tell me she was also a parent and I totally misread her. Then it was all awkward. Being around so many special kids at these clinics I forget that there are people who just want to share the ”parent secret handshake” and not the “parent of special child world view.” If that makes any sense.
We bought Laelia her first toy that lights up and makes noise after she reacted so well to the one the physical therapist has. It’s a little turtle (that will be featured in the next blog) and it helps us do therapy. There are not many toys that you can play with that don’t involve manually manipulating them somehow. This one requires pushing the shapes on his back, but one push can make him play about four songs. The other few toys we have require pushing, pulling, pressing, poking, etc. And all that means is that Mom and Dad spend a lot of time pushing, pulling, pressing, poking, etc. while baby stares at us.
Laelie also has a cold and is coughing. We stuck textbooks under her bassinet to prop her way up, but I wake up several times a night to the sounds of her gagging or coughing. I keep her nose sucker thing on hand. I hate to say this, but she has the cutest little cough in the whole wide world. She makes a little high pitched noise when she does it too. I’m always saying, “Poor baby!” as I’m grinning at her. She looks at me like, “Thanks Mom, I’m only miserable over here!”
Oh and the best news of all is that she’s sleeping at night!!! Yes more sleep happens at night than happens during the day now. I started putting her down at ten and she would sleep by midnight, so I tried putting her down at eight and now she is asleep by ten! She wakes up two to three times a night, but I can usually get her to go back to sleep in under ten minutes (after a 30 minute feeding). It’s so hard to listen to her fuss when we first put her down. And it usually takes picking her up a couple times, trying to feed her again and leaving the room for a while before she will sleep. Often Charley has to be the one doing it or she’ll just smell the breast milk (aka me) and go nuts. I’m hoping we can establish a more predictable pattern before I go back to work in three weeks.
Laelia got babysat Saturday afternoon by her two babysitters, Tammi and Megan, who will be watching her when I go back to work. I’m feeling pretty good about going back to work. Laelie Bug isn’t demanding food every hour or two anymore and usually goes two and a half to three hours between feedings. And it’s so nice to have people I trust and know. Now I’m hoping they lie to me if she says her first word when I’m not there.
We got a letter in the mail from SSI turning us down. That was an entire day wasted doing paperwork followed by an interview. It started to seem like they didn’t care when they asked me what her birthday was and then asked if she had even tried to find work or apply for jobs on her own. Ha! Any three month old will tell you the job market is hard to navigate… or they may just make vowel sounds at you while drooling, but you get the idea. Oh and I found the one thing I could not do during the interview was make a joke. Even when the lady asked if Laelie or I had ever been convicted of a felony. Then said and I quote, “Because that is a requirement of receiving governmental aid.” !!! So I said, “Well if that’s what we need to do.” She just kept talking in this monotone voice and finished whatever (you know) she was reading to me. Sigh. I learned an interesting lesson: the government rewards idiots and punishes people who are good stewards of their money. I would qualify if I spent our savings on ding dongs and decided to quit my job. Hmmm… not a bad idea…
Well on Saturday night Charley and I got really depressed and just sat around numb and crying about Laelia’s condition. I don’t know what got into us. Maybe it’s because usually only one of us gets sad and the other cheers us up. Or maybe it’s because Linda moved out to go back to college and we got sad and lonely. Who knows. But when we’re both sad, we just feed off each other’s depression. Laelia still has no independent arm/leg lifting. That’s just so terribly not good. A girl with the same diagnosis as Laelie wrote that she has a “helper” that would follow her around in high school to assist with going to the bathroom. With our luck, we won’t qualify for this either. At least we can be thankful that this stupid handicap does not affect her brain. She will still watch movies with us and, if she takes after me, enjoy them, or, if she takes after her daddy, dissect them, drawing out universal truths and reading reviews.
Well I would write more, but I see something strange in the distance. Is it a bird? Is it a plane? No! It’s Super Bitty Bear!
