Heidi 9 months

Heidi's 9 month picture. Yes, we are officially helmet free!!!!! Just over a week ago, we had another scan of her head, and she now has a more symmetrical head shape. It was recommended that I wean her off of the helmet (as she would have to adjust to her head weighing less, and not having the protection around her head), so we took a few days of a couple hours on, couple hours off routine. Last monday night was her last time wearing it thru the night. And we have not looked back!

I LOVE being able to see, touch, smell, and kiss her hair. Giving her hugs is more rewarding. I gave her a bath, and it felt like I forgot something, because I didn't have to give the helmet a bath as well. Getting her dressed is easier. But having her wear the helmet for over 3 months was worth the financial expense, stress, appointments, and the "what if's...." So thankful I took action when I did. Now when Heidi is older, we will be able to confidently say that we did everything possible. In the end, good experience. And would recommend the process to others contemplating their child's head shape.

Here's a few from the session.... I couldn't pick. And she is too cute to have to pick.

"official" 9 month picture, as it has all the elements.

Heidi

Heidi reading a book.

Woooohooo!!!!!!!

House closing week!!!!!!!!!!!!! yay!!!!!!!!!!!!!!!!

lots of money going out the door, and signing our names many times over, all for a house! We will be officially home owners, as of 11am tomorrow morning!

A huge dream has come to reality. Now for the joys (and frustrations) of home ownership. We're ready to take it on! And to start working on home improvement projects, cleaning, moving, organizing, and living on property that we (and the bank) own. Don't forget about the back yard, it needs lots of help. Any ideas?

Our backyard

And soon, hopefully, I will have more consistent access to a computer, in order to update the blog more frequently.

And I may be doing a "happy dance" over here  :)

Can't end a post without a cute Heidi picture. She is still wearing her helmet every day, here I just gave her a few minutes of a break. She probably has only 5 more weeks left to wear it. Her head is much more symmetrical, and the flat spot on top is almost nonexistent. I can't wait to give her hugs and kisses without a helmet! It's been worth the money and time and effort. I feel as though we are giving her the best start possible for her self-esteem in the future. And I know that we did everything medically possible. Beautiful baby! We love you!

Updates through pictures

Lots of pictures for your enjoyment.

Heidi and Daddy (in his work uniform).
He has been working for 2.5 weeks. yay!

Me, Bo, Heidi, Aunt Laura, Uncle John

Aunt Laura and Heidi enjoying the hammock.

Heidi and Aunt Laura, cuddles during a nap. 

Heidi in Baltimore, MD

 

Me, Heidi and Bo (who really wanted to be on the bed)

First time apple picking, Amsterdam, NY

Introducing music early, at
Great-Grandma's baby grand piano

4 generations

Catherine, Great-Grandma, Grandma, Heidi

Long-time family friend Catherine, and Heidi

Out for a stroll along the Erie Canal.

Heidi and Grandma, Piseco Lake, Adirondacks, NY
Look at those beautiful, colorful trees!

Heidi with her helmet.

Heidi has been wearing the helmet for close to 2 weeks now. The arrow was to help me with positioning, which I no longer need. She is not bothered, but does like to scratch her head when the helmet is off. Heidi wears it 23 hours a day, including naps and night time. We are praying her head is malleable. Heidi was rolling, but needs to learn this skill again while wearing the helmet. She started scooting forward the day before she received the helmet, and had become faster with the scoot. Heidi is most motivated by electronics. ha. Unfortunately, insurance declined covering the helmet, as her numbers were not significant enough. But we felt that if there is a treatment out there, we should take advantage of it. 

Sick

So my illness turned into Bronchitis. Yuck. I'm coughing all the time, and sometimes cough for 5-10 minutes straight. My stomach muscles hurt. While nursing, Heidi flinches when I cough, and she looks at me as if trying to say "what are you doing mommy? I'm trying to drink here."

In all the numerous books I read during pregnancy, and with all the families I worked with, and in my college/post-grad classes, no one warned me how challenging it is to be sick and try to take care of a baby. It's hard! For a couple days, Heidi lay on the floor with toys around her, and I lay next to her. She was fed, with a clean diaper, and I was guzzling apple juice. That was the extent of my abilities. Sure glad that the dogs realized I was sick, and weren't demanding. My mind feels better, but I still don't have energy. If I try to do something, even like folding laundry, the coughing increases.

A change of plans with Heidi's helmet. The company is not expediting the appointments, so we have yet had the next appt for more detailed images of Heidi's head. We therefore would only be able to have one adjustment before moving. And with the company being something like 6 hours from where we are moving, that didn't seem realistic for 8 or 9 weekly trips for adjustments. Now, I will get a second opinion from a company, Hanger Prosthetics & Orthotics just a few miles away! And it also gives me a month to try extensive re-positioning and neck stretches to see if that makes a difference.

Oh, and I just left everyone hanging about Skipper's vet appt last week. He did really well, and his heart and blood pressure are much better. He's cleared from visiting any vet for 6 months, unless I see a change in his behaviors or eating patterns etc. Yay! Now he has to remain on a 2 times daily medicine regime, with 2 pills each time being shoved down his throat. At least we have a while longer with him. I wasn't ready to say bye... will I ever be ready?

Insurance update on Heidi's helmet.

We absolutely appreciate all the support that has been given to us. I now know why people keep blogs in trying times. It's easier than having the same conversation over and over, but we are still able to keep people updated. And to top everything off, I became sick, as in throwing up and fever. Medicine is keeping the fever down, but I still feel crappy. Heidi has received extra naps these last two days, as that is all I want to do.

An insurance update: Before we even went to the appt, I talked with Heidi's insurance at length, and was told that there were no exclusions to prevent them from covering a helmet. Well, fast forward, to Cranial Technologies telling me that insurance is saying "no" to her helmet because her plagiocephaly is not severe enough! Even with this, I still need to write a letter to insurance describing how I have already tried re-positioning techniques. Grrr... and it probably won't make a difference. A slight positive is that Cranial Technologies will "only" charge us the price that they would charge insurance, $2,400. Not great news, but do we really want Heidi's ears to be off center, to cause possible ear issues in the future, and for her eyes to be unbalanced? Easy answer, no. Anyone have money laying around...???

I think my sister sums it up the best.
        "Well good thing you have 
        A. Savings and 
        B. Parents 
               haha" 

I am thankful that I caught this before it became more pronounced.

I am thankful that I have had experience stretching other babies' necks. It is heart wrenching to watch her cry. She is not in pain, but is uncomfortable and is sure to let us know. And we have to do the stretches at least 5 times a day. After diaper changes is easier to remember.

I am thankful that I saw pictures on the internet of a baby wearing the stocking over their head, otherwise that would have freaked me out a little. We saw the pictures, and with her hair and ears covered, it doesn't even look like her!

I am thankful that her pediatrician took me seriously, and made the appropriate referral.

I am thankful that there are locations up north, with this same company.

If only I had energy to start packing up the apartment, but that will wait.

If only I felt like eating, anything. Apple juice it is!

Heidi Medical Update

Today, we went to Cranial Technologies, and they are recommending a helmet (DOC band) to help with Heidi's asymmetrical head shape. She will have to wear it for 6-9 weeks, if we are able to start while she is 4 months old. Once she is fitted for the helmet, she will need weekly adjustments until her skull is as symmetrical as they can make it. The helmet will weight 4-6 ounces, depending on the size.


That is the short story. Now for the long story.


For a while now, I noticed that the top of Heidi's head was flatter on the top right than the left. I kept hoping it would change, but if anything is became more pronounced, but still not noticeable to most people. I also noticed that she preferred to keep her head looking to her left, and always slept facing that direction, and sucked her left thumb, as well as rolling over her left shoulder. At her 4 month checkup yesterday, I asked her pediatrician what he thought, and he recommended we have an evaluation for a cranial orthotic. He gave Heidi a diagnosis of asymmetry to cranium - plagiocephaly. (I was hopeful that he would just say I was being overly anal - nope).

I made an appointment with Cranial Technologies - good thing they were able to fit us in today, otherwise my mind would have gone crazy!

They took pictures of Heidi's head, and used a soft cloth to push her hair down so the pictures were more accurate. A Physical Therapist and Orthotist spent a long time with us, going over the results. She has Plagiocephaly . Heidi's presents atypical, as she head lilts to the left, and turns left as well. It is attributed to have started while in-utero (in-utero molding) with not having enough space to move around, and presenting in a very low position for so many weeks. She also has two flat spots on the back of her head, which is not typical for this diagnosis. Usually, a baby has a flat spot one one side, or it is symmetrically flat. Thus Heidi's head is more elongated than they want (parietal narrowing), and we want the back of her head to widen. With her head height unleveling, we want the right top to continue to grow. Her left ear has moderate shifting forward (anterior ear shift), and the area above her left eye is slightly bulging (anterior orbit shift).

They strongly recommended we pursue treatment, which is in the form of a helmet. A helmet will prevent the curved parts of Heidi's skull to not grow, and the flat portions to grow outward. We went over a bunch of different stretches to help elongate her left side neck muscle. The stretches will help Heidi look right, and bring her chin closer to her right shoulder. If possible, they want her sleeping on her back, looking right. For supervised naps, she can continue sleeping on her stomach, looking to her right with her right arm down by her side.

They were very confident that her cranial sutures are all fine, so we are NOT dealing with craniosynotosis. They saw nothing of concern about her brain development. I specifically asked a few times if we needed further testing, and they stated no.

So that was my day. On one hand, I am glad that this is my background, as it made it easier to understand and ask questions. And I have worked with more kids than I can remember who have worn this type of helmet. But on the other hand, I worry even more.

Please pray that we are able to get in this week for more specific measurements for the helmet, with no issues with insurance. And that we can fit the helmet next week. I'm thankful that there is a location outside of New York City, and one in New Jersey, so we will be able to continue treatment up there, just with lots of time driving in the car. Please pray that my mind stays calm.