moving forward

If you saw us out and about or at church over the weekend, you may have wondered why Hazel wasn't wearing her new helmet. Well, we were having problems with the new helmet (ridiculous, right?) so we took it off until the physical therapist could come on Monday to help assess the current situation. She hadn't yet seen the new helmet and after helping us work out our kinks, it was determined that this helmet is indeed a significant improvement over the last one and we should hopefully be able to move forward now (and maybe I can quit dangling from the end of my rope). Phew!

We are working our way up in hours this week and by Thursday I think we'll finally be back to making an attempt at wearing the helmet 23 out of 24 hours. We only accomplished that for 2 days with the first helmet and haven't made it to that point yet with the second helmet.

I feel like we have wasted a lot of time while Hazel's head is still its softest, and I have missed a lot of work, and so far we haven't accomplished anything. The first couple weeks with the original helmet, I could see a positive change, but it looks to me like we've lost that now, maybe due to the break time waiting for the new helmet, plus the fact that she didn't wear it for a couple of days. But I think - I hope - maybe we are about to get on track and cut the drama and get this thing going.

So that's the general update...

I promise I'll post some pictures or blog about something other than the helmet soon!

goodbye butterfly

Wonder what the orthotist will say when he sees this?

Step 1: A very thin coat of primer.

Step 2: Three coats of acrylic paint.

Step 3: Two coats of a clear matte sealer (kinda like a varnish).

I messed up one area on the left side in front of the white plastic where the strap hooks. I tried to fix it, but made it worse. Oh well. Other than that, I think it's a definite improvement over the butterflies. A decal will probably cover part of the messed up area anyway.

just fixin' my melon {again}

Yesterday we got Hazel's new helmet. Before we got to the orthotist's office I was feeling positive about it for a couple of reasons. With the first helmet, there were 14 days between the casting and the fitting, which is within reason, but this time there were only 9 days, which gave Hazel's head less time to grow and change shape while we waited for it. Also the first time we did this it was right at a time she had a growth spurt, which we don't likely have that working against us this time. 

However, when the orthotist's first words when we walked through the door were, "We have a little problem," my attitude went south. And continued to go south when he brought out this white helmet with blotchy lavender on it and covered in butterflies!

So it's not a problem that really mattered or anything, and I know what it looks like has nothing to do with what we are trying to accomplish here. But this is not what I would have picked for Hazel to wear for 23 hours a day for the next 3 months! I chose a solid color called "lilac", which I saw him write on the order form, but someone obviously had other plans. In choosing a different color this time, I was thinking it would help me feel like we're making a fresh start, but now I think I should have just stuck with pink since maybe they would have got it right? Never thought I would be missing pinky about now...

I guess it looks okay with no clothes on. But it pretty much clashes with everything else.

Aside from the surprise butterflies, so far so good. We are starting over with the break-in schedule, so it will still be a week before she is wearing it 23 hours a day. I am researching how I would go about painting it so stay tuned for what drama that may entail. :) If I can figure out how to paint it, I'll still use the decals I had ordered.

On another subject... While she still doesn't roll over from back to front, she can sit up now. :)

rest in peace, pinky

When we got to the orthotist's office this afternoon, he already had the supplies laid out for casting. That's when I realized I really could blow up the current helmet if I wanted to. (Just kidding, I'm not that crazy.) The first helmet was intended to be all we'd need, and was supposed to last a minimum of 3 months, but it just barely made it 2 weeks (hard for me to believe it's only been that long). The orthotist did say he had this happen one other time over the years he's been doing helmets.

The casting process went fine. Hazel screamed more, but it seemed to go faster this time and she settled down faster when it was over. Tyler wasn't able to come with us this time so I brought the Bumbo seat for Hazel to sit in since we were short a pair of hands.

Now we take a 10-14 day break while we wait for the new helmet and then try this once again. I'm sure Hazel could care less what it looks like, and pink would probably still be my first choice, but I decided I will have a better attitude if we move onto something different (put pinky behind us), so this time it will be some variation of purple.

I realize in the scheme of life this isn't anything more than a headache, which soon will pass. But nevertheless, thanks for your prayers and encouragement.

Now, what are we gonna do for decals this time? :)

helmet drama

Hazel has been having some issues with her helmet. Most of the time when people ask me about it, I try to stick to the positive things about it, so this may surprise you to be reading this now. I was trying to be optimistic I guess. But here's the rest of the story in a nutshell...

We have been going to Hays to the orthotist twice a week since this started. Normally you go once a week at first and then every other week after the initial adjustments. Even with getting more adjustments than average, the helmet is still not right. When we were at the orthotist's on Thursday, we found that in 3 weeks’ time Hazel's head grew 5/8", which is not normal, and would somewhat explain the adjustment difficulties. Then today as the physical therapist was assessing the situation, she observed that the helmet doesn't fit properly and the opening where it straps closed isn't lining up right anymore, which has caused a ridge on the left side of Hazel's head. Also the helmet shifts too much as Hazel rolls and moves, which is causing a persistent red spot on the back of her head, which the adjustments have not helped. As of today it's just about to break the skin open.

I thought that once we got the helmet that would relieve the stress of the situation a bit because we wouldn't have to worry about positioning anymore, but instead it's constantly on my mind. All weekend, for example, I worried whether I should take it off and leave it off, give her regular breaks, have her wear it half-time, or go ahead and leave it on 23 hours a day like it's intended. By day 7 she was supposed to be wearing the helmet 23 hours a day, but we are on day 14 and have only been able to accomplish that on 1 day.

So I am somewhat discouraged, don't feel like the greatest mother, and I know I'm not thinking rationally, but I can't help but picture the helmet blowing up in our driveway into a million pieces, or I picture it blazing on fire, "cute as a button" decals and all. Can we just start over? ;)

This afternoon before we get to the orthotist again, the physical therapist is going to call him to discuss everything. I’m hoping that between the 2 of them they can determine how best to proceed.

Just wanted to get in that bit of an update.

six months old

Hazel had a well baby checkup yesterday, and here are the stats.

Height: 26 3/4"     Weight: 14 lbs. 7.5 oz.     Head Circumference: 17 1/4"

According to the growth charts, Hazel is in the 80th percentile for height and 20th percentile for weight. So she's still a longer and thinner build than Nyla was at this age (Nyla was 26 1/2" and 17 lbs. 8oz. at this age, 75th percentile for both). Her head falls into the 85th percentile.

At 6 months old, Hazel:

• Loves baths.
• Regularly rolls over from front to back, but never from back to front, except once by accident I think. She really hates being on her tummy and is probably not as strong as she should be in her upper body by now.
• Will giggle when you tickle her neck, tummy or thighs, even when you aren't trying to.
• Has full range of motion in neck.
• Is very expressive in her baby talk and enjoys trying to mimic the sounds you make. I would not be surprised if she says her first word and starts talking fairly young.
• Goes to bed about 7:30 or 8:00 and gets up the next day about 7:00 or 7:30. She either sleeps clear through or she gets up once to eat.
• Takes several catnaps throughout the day. Once or twice a day she sleeps for an hour or more, but usually it's 30-45 minutes several times throughout the day. I was hoping to have more of a normal nap schedule by now.
• Takes about 6 ounces of formula at a time. I need to get with it on at least experimenting with solids daily, but am extremely unmotivated at this point, mostly since Hazel is not showing any interest. It appears that she tolerates it for awhile till she finally gets mad.
• Enjoys being jostled up in the air, above your head (Nyla hated this).
• Has taken a significant interest in watching AJ lately.

hazel's bling {#1}

I ordered decals from Bling Your Band for Hazel's helmet.

The big lavender button didn't work so well, but I have replacements coming in a couple of different sizes, so I'll just peel this one off and try again. The bigger decals are harder to put on the rounded helmet and not have wrinkles.

If I keep applying Mod Podge over the decals about once a week they should last as long as we want without peeling. We may want to try something different at some point anyway. :)

I off-centered her name on purpose, but it doesn't quite look as I was intending. I still think it turned out pretty cute.

 Hazel is adjusting quite well. She is wearing the helmet all day now and it doesn't seem to bother her at all. Tomorrow night will be her first night to wear it to bed so we'll see how that goes. The amazing thing is that she's not even wearing it 23 hours a day yet and I can already see a slight change in her head shape.

a taste of christmas {junction city}

~ New Year's Eve ~

The Christmas centerpiece

 Hangin' with Uncle Josh

 It's basically impossible to get 3 people to look at the camera at the same time.

 This room is Nyla's "castle". It's a porch off my parent's house where she plays (here she's dancing to Tyler's guitar).
 

Great Grandma Janice

 If you ever wondered where AJ was, she could be found under the Christmas tree.

~ New Year's Day ~

 Fun with Great Grandpa Dick

 Nyla was sick with a fever that day.

 Hazel getting serious with her new laptop

 Great Grandma Earlene

 Sick Nyla with Grandpa Kenny

A little guitar playing by Grandpa Dick and Tyler

Is this a hint that she wanted to be given away as a gift?

just fixin' my melon

Today we went to the orthotist in Hays to pick up Hazel's cranial molding helmet, and to get it fitted and adjusted for the first time.

For the first week there is a schedule of taking the helmet on and off throughout the day, and by day 7 she'll be wearing it for 23 hours a day. Each time we take it off we need to look for any red marks on her head or face. If there are any that don't go away within about 15 minutes, we need to head back to the orthotist immediately for an adjustment. Otherwise, at first we'll go in once a week for adjustments, and then that will increase to every 2 weeks... I think.

Hazel has tolerated the helmet pretty well so far.

Right after we left the orthotist's office, we made a quick trip through Wal-Mart, and here she is sleeping in the shopping cart.

Yes, the helmet sits a little crooked on her head/face. This is normal since the helmet is more rounded inside compared to Hazel's lumpy head. As her head grows and changes shape, the helmet will sit more squarely.

Tonight she was happy as ever. :)