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.

My brain...

Yes, I am well aware that it is 11:30pm and I should be sleeping. However, this afternoon I noticed a headache starting, and wanted to take preventative action. So I drank a cup of coffee from 4-8pm. A good decision in that my headache is now gone. A bad decision in that the caffeine is keeping me awake when I want to be sleeping. Especially since Heidi went down to bed at 8pm.

So what does one do when one can't sleep? Personally, I start thinking, and for the next month, moving and money will be on my brain, therefore that is what I think about. As I laid in bed, I started to contemplate our future budget once Kelby secures full-time employment in his field of choice. Before I knew it, I was out of bed and put pen to paper and figured out a hypothetical budget, based on a possible salary. Kelby thought I was strange for choosing to do this activity at this time of night, but so be it. (we balance each other in this regard - someone has to make a budget and stick to it!). We should have a little more flexibility in our future budget than now, but with a higher cost of living, state and federal income tax, and paying for student loans, we will be tighter than we would like. All for a season, I keep telling myself.

To follow up my previous post, Kelby noticed his lunch in the fridge. He remembered to take it to work the following morning, and even remembered to eat it for lunch. I would call that a success!

We (I mean mainly Kelby), started backing boxes this past weekend. It makes moving feel that much more real, and closer. Technically I have less than a month left in Texas. 4 weeks and 2 days before myself, mom, Heidi, Skipper, and Sophie start a cross-country drive. You may ask, what is Kelby doing? He and his mom will be driving a large moving truck in 2 days. NOT what I wanted to do with a baby and 2 dogs. And with my organized brain, I have written lists upon lists of what we need to do, who we need to see, who needs our new address, while packing and determining what will go where (to storage or to be used in the next month or so).

I try to keep life in perspective. When I am over-tired, or can't seem to comfort Heidi, or get stressed over money, I tell myself that others have so many more serious challenges. I don't want to minimize my life and experiences, but I know many people where life is more challenging. I choose to read blogs about parents raising children with disabilities. I also choose to remember the many the families that I worked with, and their stories which range from infant loss, micro-prematurity, Autism, Down Syndrome, CP, etc. - their struggles are significant. I also remember the lessons I learned from them (it was a 2-way street), and to appreciate what I have and what I have been entrusted with. A healthy daughter, an ability to pay bills (praying this continues by Kelby getting a job), a supportive family, a church family, and God.

Pray for smooth doctor appointments tomorrow. Heidi has her 4 month check-up, with shots, and Skipper goes back to the vet to see how his blood pressure is doing. 

pictures from our day

Here are a few pictures from the last couple days.


Before moving, I wanted to document Heidi's first bedroom. Not too shabby, for an apartment. Numerous sentimental items spread throughout, from the rocking chair, to the quilt on the back of the futon, to the animals and books on the wall above the crib, to the crib skirt, to Heidi's letter name.

Heidi's Texas room

Notice how close both dogs are to me! They both follow me from room to room. This is a great activity for face-to-face time. Depending on where I place Heidi on my legs, will depend on how much head control she is required to do. If I take away my pillow, it turns into a stomach crunch workout for me. We sing a made-up Bouncing song, and Heidi smiles the entire time. As a side benefit, it helps relieve pressure on Heidi's stomach.

Kristin "flying" Heidi.

With work, I was always reluctant to have families use flashcards during therapy/play sessions. Most people hear flashcards, and picture a child sitting at a desk, running math facts. This is far from that! With the kids under age three, flashcards can be useful, as there is only one picture in front of the child at a time. This way, you can ensure the picture that the child is looking at, is the same picture that you are talking about. Heidi will do this activity for about 10 minutes, at a picture a minute. We are using these flashcards. As she grows, I like the fact that there are textured parts on the picture for her to touch (using another sense besides vision). Also, they are pictures of actual objects, not cartoon drawings.

Kristin and Heidi looking at pictures

Heidi is enthralled and focused. Great fine motor activity by holding the card, as she tries to put it into her mouth. Receptive language activity as I am describing the picture as she looks at it. Expressive language activity as when she "talks" to the card, I respond back to her, thus reinforcing her attempts at sounds.

Heidi holding a picture

I just liked the storm clouds in this picture.

Fast moving storm.

Some naps, I just let Heidi fall asleep on the floor where she was playing. She has started this habit of rolling to her side to fall asleep. She happened to be holding a blanket before she fell asleep (I took it away after taking the picture, not comfortable with the suffocation risk yet). And yes, she is sucking her thumb. Most times, she refuses a pacifier! And yes, she is without clothes on. Most days, it is too hot, as in 80+ inside temperature, and that is with the AC running.

Heidi trying to sleep.

I feel like a productive wife this evening. Any bets on whether Kelby even notices this in the fridge? I made Red Beans and Rice, and it was delicious. I cut back slightly on the spicy flavor, hopefully Heidi doesn't revolt tomorrow. Lots of leftovers.

Kelby's lunch

This made me laugh

Most people know by now that we are moving next month.

I told someone that we were moving "up north." (As a non-native Texan, when I hear "north," I think of all the states to the north of us, but specifically the Northeast United States.)

Well, this person said, "oh, you are moving to Sherman?"

I laughed long and hard on the inside. Sherman is between Dallas, TX and the border of Oklahoma. Technically, it is north of Dallas, but still in Texas.

I replied, "no, we are moving to a different state. Looking at NY, PA, and ME."

I guess everything is a matter of perspective!