Archive for January, 2008

New braces today.

Thursday, January 31st, 2008

So Laelia is getting her new braces today (Thursday)  at 4pm. Her casts will come off and they will try the sandal-shaped braces. We will have a week to gage Laelie’s pain level and see if they stay on her feet. If they don’t work, we do have one more option after this.

I’m looking forward to being able to weigh Laelie for the first time. We had an opportunity last time she was in braces, but since we thought she would have them longer than a week, we didn’t weigh her. The only problem with weighing the baby is that I have to get on the scale with her in my arms and then put her down and then get on myself and then do some subtraction. I’m just worried it won’t be enough subtraction. :)

I’m nervous about getting the casts off and having her feet hurt her again. I hated that. It was the second worst week of  our parenting lives. The layers of skin will have to come off. The braces will have to go on and off and be readjusted a few times. It will hurt when she is picked up or put down because of the weight on just her feet now. I’m going to run her legs into everything because she won’t have these big cast shields on. Diaper changing will be a lot harder since we can’t touch  her feet or the bar across  her feet and instead have to grab her hips in an awkward way. I just pray that we survive this. Thankfully since we’re getting them close to the end of the week,  I will only be at work on Friday and then have the weekend to really care for her. Last time I got NO sleep the night after braces. I may be really out of it for work tomorrow.

Last night Laelie and I had lots of fun. Having the braces will mean we can’t monkey around as much so we did a lot of horse play yesterday. One of the fun things we can do better in casts than braces is this:

She’s smiling her head off! Now if that didn’t make you laugh, nothing will. :) Aw, good times.

Bad day. Good day.

Wednesday, January 30th, 2008

Bad Day  

Today was a bad day. I’m kinda depressed. I was up late with baby screaming last night. She just didnt’ want to go to bed. There was NOTHING wrong with her. When I would walk up to the bassinet, she would look up at me and smile. She was bored and didn’t want to go to bed. (And  of course that little smile works on me and all I wanted to do was play with her, but I stayed firm.)  Then I decided to let her scream it out… but that got me no sleep. Finally Charley got her and took her downstairs. An hour later he sneaked back into bed and the baby was sound asleep. I blinked and the next thing I knew it was 4:30am.  

I love my job, but I’m not doing as well as I would like. I’m not expecting myself to do perfectly my first week back or remember things I knew when I was working full time and everything was fresh. It’s just frustrating. And I’m tired. Everyone is saying I’ll pick it up again and be fine, and while I agree with them, it still makes it hard right now when I’m used to getting a lot more work done a lot faster.

Plus my breast pump broke while I was at work and my chest has been killing me from not pumping. It turned out that I was just missing a piece (and now it works), but that was hard.

I’m not as good with criticism. I realize I have been in this loving, protective bubble the last four months. Everyone has been wonderful as I’ve worked through grief and hardships with my daughter. But now I have to reenter the real world.  I’ve just taken comments to me or about me really personally. At the time they’ll be no big deal and then later I’ll think about it and just wish I was a different person. I’m no good about people  not being understanding about my situation too. For instance,  I was so upset when this guy at a store wouldn’t ring up my order unless I would hang up my cell phone–a cell phone  in my hand on  speaker phone  NOT up to my ear. I explained that I was on hold with my doctor because my daughter is denied  treatment because of some lost paperwork. I had been on hold forever so I didn’t think they would get back on the line during this brief exchange. He said not to talk to him until I was off the cell phone. Did I mention that he didn’t look me in the eye the whole time? He was in the back playing on his computer. I just stood there helpless and then God turned off my phone.. I mean the connection ended up being lost. :) Good thing too, because I  wasn’t going to turn it off. It took 10 seconds for him to help me, tops.  (When I was able to call back, my doctor had left for the day!)  I was getting keys made for my babysitters who were in the car waiting with my daughter. I started to feel actual tears forming in my eyes before I realized that it was silly, and if this guy wants to be  rude, I can take my business elsewhere in the future. That said, don’t shop at O’Brien’s Lock and Key on Alabama and University! :)

I also have a hard time with receptionists at certain doctor’s offices and certain departments of Children’s hospital. Doctors are nice and therapists are nice and nurses are nice, but receptionists can be really rude. I was telling my aunt that I use the I’m-on-my-cell-phone strategy to avoid rude and evasive receptionist behavior. Here’s one typical conversation that I had with a receptionist yesterday:

Them: “Hello this is (name of hospital).”
Me: “I’m trying to reach (branch of hospital).”
Them: *sigh* “Well you did.”
Me: “My daughter is Laelia Wesley and she’s waiting on some…”
Them interrupting and talking over me: “Appointments are scheduled with me but there isn’t any openings today…”
Me still: “…orthopedic braces that our insurance…”
Them now talking over me louder than they were previously: “…so you’ll have to call back tomorrow for appointments.”
Me: “I just need the status of a fax my insurance is saying they never received from you.”
Them: “Name again?”
Me: “L-a-e-l-i-a W-e-s-l-e-y.”
Them: “We send all our forms to the insurance the same day as the doctor requests.”
Me: “Sorry I’m on my cell phone, you were checking on a fax?”
Them: *longer sigh* *silence*
Me: “Hello?”
Them:  “We sent that on the 22nd.”
Me: “They gave me an authorization number for that.”
Them: (very rude and impatient) “We need THEM to fax us that, we can’t just take anyone’s word that they…”
Me: “Sorry I’m on my cell phone. I was saying the authorization number is 20080120482.”
Them: “We need THEM to fax us this.”
Me: (This is part of their job to call the insurance for this, so I play dumb.) “Do you need the phone number for our insurance?”
Them: “No it’s in the file. We’ll call you back.”

That above conversation would be more accurate if I included the billion times they put me on hold too. Good grief. I’m still dealing with two (TWO!) lost paperwork issues between Laelia’s doctor and physical therapy AND between her insurance and orthotics. They called today at work to let me know it wasn’t worked out yet and then gave me another number which was a person’s voice mail who hasn’t gotten back to me. Plus they will cancel Laelia’s PT appointment on Tuesday  (like they did last week) if they don’t get this worked out “three days before the appointment.”

So today was not a great day for me.

Good Day

Hi, this is baby. I had a great day today! Mommy let me stay up late again and then fed me lots when I woke up. Daddy put me in my swing this morning and I love that! Then Tammi came over and played with me lots and lots. And then fed me lots and lots and lots and lots (I ate 9 ounces!). And I reached  down and grabbed my cast and Tammi was happy about that and told my mommy and they both smiled at me and picked me up. Mommy came home sad, but then she held me close and I brightened her whole day.

So today was a super day for me!

Here’s a random video of me playing with my arms. I love that!


Monday, January 28th, 2008

If somebody had told me years ago that one day I would be getting up everyday at 4:30am, I’d think they were crazy. Yet here I am having just completed day one of  the new schedule.

My first day back to work went really well despite the fact that my kid doesn’t like to go to sleep and then didn’t want to wake up in the morning. I had to change and burp and  feed Laelia  before getting ready for work and then I had to pump milk for her next feeding.  Hopefully my body will adjust to this. Baby never gets woken up at night; in fact she is encouraged not to wake up. She didn’t like it. She was totally slumped over while I was holding her. And of course she pooped all over everything right when I was walking out the door… it’s as if she knew. :) She’s not very cooperative.

She didn’t eat very much with me. Later Charley made her a bottle and she didn’t eat very much then either. In fact, it took Nanny Tammi to finally get the milk down her! Hopefully she learns  the new schedule. I ended up  breastfeeding her for over  an hour when I got home.  Probably because she missed me more than she was hungry though.

I just realized I left 6 ounces of breast milk in the freezer at work.. oops. Hope nobody thinks that’s their burrito. :)

Oh and here’s a random video of Laeliekins. It’s gross. :)


Friday, January 25th, 2008

So my Early Start representative, Dawn, comes down to my apartment to  oversee Laelia’s milestones, both physical and mental, once a week.  Wednesday  Dawn  put Laelie on her side so her arms could be moved by her shoulders then she wrinkled multicolored paper in front of Laelie. It took her a long time, but  finally that little right arm reached out for the very first time!!! Dawn and I both screamed and that made Laelie retreat and stare at us with these wide eyes. :)

So Rachel and I recreated this  today and she reached out with both arms! Check it out!  

Laelia moves her right arm! Although she uses gravity, she is actually moving her shoulder. This is the age where babies bat at things with their hands so I think she’s right on track!

This time Laelie didn’t want to reach but instead just pointed with her tongue. This took SEVERAL takes before we finally caught some arm movement. Anyone want to see two other videos of Laelie sticking her tongue towards Mr. Lion and five other videos of her just staring at us like we’re idiots? :) I didn’t think so.


Friday, January 25th, 2008

So I’ve been trying to get in shape before I go back to work  and sit  at a desk for hours at a time. Baby is refusing to let me do a traditional workout so I am forced to walk around the living room with her. While we walk we talk about how this Monday (in three days!)  is a big day and how little  babies are suppose to be good while Mama is at work. She just stares up at me with these huge eyes and then drifts off to sleep. At least I’ve found a way to exercise that doesn’t include dragging a stroller up  six  levels of stairs.  

Yeah Mama, now try showering. :)

Arm Movement!

Tuesday, January 22nd, 2008

Laelia the Magnificent  moved her left elbow for the first time ever! And the best part: we got it on video! Discovering that my camera could take videos has been great. I noticed she was moving her arms a lot one night when I was holding her a certain way. Charley grabbed the camera and voila! I took the video to show her physical therapist and she told me that it would be extremely hard to move her arms from a resting position, but since I had them up at eye level it gave her the freedom to move them towards her body. Now it’s been incorporated into physical therapy! So I’ll hold her like that from now on and see if she can get those elbows moving more  on their own!

Look at her face after she moves that left elbow! She’s responding to her daddy’s gasp or something. But look how happy she was with herself. :)

I can’t tell you how excited we are about this. She has previously shown no independent movement in her elbows whatsoever. She got to the point where she could move her shoulders (which is the only thing moving her arms) and of course she’s been able to twitch her fingers for a while now. It wasn’t until I watched the video Charley took that I really saw she didn’t just move her shoulders, but she bent her elbow! For the very first time! Ever! Hooray!

This picture is of Laelia’s physical therapist (right)  and occupational therapist (left). This was one of those appointments where they double-teamed her. They were really excited about the video and her progress! I’m already looking at adaptive  gadgets that can utilize this ability for feeding herself in the future!

I’m really pleased with the new right arm splint. It works the wrist a bit better.  Her left hand is also much improved. It tends to lose range of motion very easily, but it has shown the most improvement! Yeay! Laelie!

How Laelia points at things.

Thursday, January 17th, 2008

I’m more and more convinced that Laelia uses her tongue to point at things. Like when I’m holding her and her daddy walks by, that little tongue will come out. Then Charley will take her from me and she’ll smile like crazy at him. So I’m convinced the tongue means I WANT THAT!

It’s impossible to see, but she is actually twitching her fingers and arms too, trying to get them to reach out for Mr. Turtle.

Oh, and once again, ignore my baby voice. :)

Bouncy time!

Thursday, January 17th, 2008

Laelia loves her bouncy time. She just started to smile when stimulated a couple weeks ago and now smiles all the time (even when she wakes up in the morning… definitely not my child. :))  I often take off her arm splints during bouncy time  so they don’t get caught on my pants. Still didn’t keep me from falling off the couch. :)

Just ignore me sounding like an idiot. :)

A week in shoes-an exercise in futility

Tuesday, January 15th, 2008

Song of Solomon 7:1 – How beautiful are your feet with shoes.


Psalms 130:1-2 – O Lord from the depths of despair I cry for your help: “Hear me! Answer me! Help me!”

After a week of pain and heartache, back in casts. :(

HMO=harshly manages options

Monday, January 14th, 2008

We are getting rid of the braces.  I’ve been in to the doctor  Tuesday, Wednesday, Thursday, Friday and today (Monday) about these braces.  They don’t work and have been falling off and hurting Laelie. Problem is that my baby requires a different kind of brace because her ankles/heels are not fully formed (the bone is out of place from all the casting) and  she’s special. Okay that’s not the problem, the real problem is that it took a week to figure that out and  my insurance (HMO) doesn’t like this change. The doctors have to get my insurance to cover an alternative option for Laelie’s care. We’re working on it. It will take 7-10 days for the new braces to come because of insurance delays. In the meantime, I have to decide rather or not to put Laelie back in casts or keep her in these painful shoes! Both options are bad news, but which is worse? I wish the insurance didn’t have a say and we could just go forward with the new braces. I don’t want her back in casts if they’ll hurt her or something. I don’t like the shoes. What do I do?

One of our  doctors also said that she believes  Laelia has  torticollis. It’s probably just part of the arthrogryposis, but I didn’t think her arthrogryposis affected her neck up. That means we’ll have to watch her speech and jaw and stuff later on now. We are trying some  exercises to see if we can avoid getting a helmet. That’s all we need–splints, braces and a helmet. No way she’ll be socially stigmatized then… sheesh.


In other news, I’m learning that my daughter is going to do things in her own way. This is the age when babies start to reach out for things. Well, as this picture shows, when Laelie sees something she wants to reach out for, out comes the tongue! She’ll stretch her tongue out towards the toy she wants. I wonder if all babies do that or if that’s her own special thing. I learned about a woman in her 40s with arthrogryposis who paints with her mouth. And God gave my daughter one pretty mouth too. :)