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!

Why I read ingredient labels on food items

We were given a container of Greek Yogurt, Vanilla and Honey flavored. It tasted great, and I put the yogurt into the same molds that the fudge pops were made in (yes, the fudge pops are all done, including the second batch!). I enjoy frozen yogurt, as it can taste like ice cream, with more health benefits.

I happened to look at the ingredient label, and was shocked by what I read! Most people feel that Greek Yogurt is a healthy option, but buyer beware! This yogurt has 280 calories per cup. Which makes it the same caloric count as ice cream, which can come in at 140ish calories per 1/2 cup. Wow. The fat (14grams) and sugar (32 grams) content was way high, and there was only 6 grams of protein per serving. Now compare to my non-fat plain Greek Yogurt, which comes in at 120 calories per cup, 0g of fat, 9g of sugar, and 23g of protein. Yes, that is almost 50% of daily amount of protein!

Yes, the flavored Greek yogurt tastes better, but not enough for all those calories, fats, and sugars. I'll stay with my non-fat, plain Greek yogurt, and add to it such things as: fruit, granola, honey, or into a smoothie.

Healthier doesn't mean less flavor! Just smarter choices :)

Friendships will be missed.

We have made wonderful friends during these years in TX. I will never forget those friends who opened up their lives and hearts, and I learned to let them in. Friendships go through a natural progression as we grow and mature. Some friends are placed into our lives for a season. Others will be forever in our hearts, no matter the physical distance between.

One such couple, Lad and Joan, are my "adopted" Texas grandparents. And now with Heidi, they are her "adopted" great-grandparents. It works well in both directions. Heidi has more people to love on her, and pray for her, and show her Godly examples. And they receive lots of hugs and smiles in return. 

A huge unexpected benefit of not working right now, is that I can spend quality time with people during the day while Kelby is at his internship. Last week, I spent time with Lad and Joan. Joan attempted to teach Heidi "sooo big." And I taught Joan how to set up a blog, Journey With Joan. You will have to check it out!

And since I have learned that most posts can be boring without a picture, here is Skipper getting in on Heidi's photo shoot. How do the dogs always know when something soft and squishy is on the ground???? And speaking of Skipper, his latest medical update: first heart medication did not help his blood pressure, so now he is on a second medication. We go back next week for a check. Now, I have to shove 4 pills a day down his throat. Praying that this combination brings his blood pressure down to a safer level!

Skipper

Only a baby could sleep like this!

Only a baby could sleep like this!

This is how I found Heidi in the middle of a nap. I tried to fix them, but she reverted immediately back, so I left them alone.

I could just eat those toes!!!

These are a few of my favorite things...

Or technically, Heidi's favorite things right now, as a 3 month old baby.

Oball 
Heidi loves this toy! It is lightweight and easy for her to grab onto. All the holes in the ball make it easy for her to wrap her fingers around. She is able to hold onto it with one hand or with two, and brings it to her mouth. I love that it doesn't make any noise, so it is good for those places where others want Heidi quiet. She even transferred this toy from one hand to another. (yes, that is a developmental skill). Here she is pointing to the ball, trying to tell us "yes, this is a favorite toy. It's right here. See?!?!" And I gave you a preview of her 3 month pictures, yes I know the shadows are funny but I loved her expressions.

Heidi

Skwish 
Not sure I would have spent the money on this toy, but right now Heidi is enjoying it. It has a similar entertainment value as the Oball, but it makes noise as the beads slide back and forth. I like how it is made out of wood and a type of nylon rope, so it gives her different textures to feel and to try and put into her mouth. And try she does!  If this toy is lying next to Heidi, she feels it and then grabs it independently. I have no concerns about this toy coming apart. It seems well constructed.

Heidi

Art Cards for Baby
People are amazed at how these capture Heidi's attention. She will look at one picture for a few minutes, and it is neat watching her eyes travel around the picture, looking at all the different parts. I like all the pictures in this set, the Original Collection, except for the cat. That one is freaky looking. I also like the fact that on the back of each picture is the name of the animal. I'm hoping Heidi will use them in the future too. But for now, it is great for her vision development, and I will talk about the picture and make silly animal sounds.

Eric Carle Butterfly Toy
The first time Heidi saw this toy, she was memorized and continued to examine the toy for an extended period of time. She will also give huge smiles when she sees this toy. Fascinating to watch as she looks at all the different parts of the butterfly. As of now, she likes the crinkly part the best. It will continue to grow with her as she learns new skills.

More favorite things to follow....


*I used Amazon as links because Amazon is easy, and everything is in one place. That's all. We received or bought these toys from numerous stores.*

Reading Books

With one of Heidi's grandmother's being a retired reading teacher, and another grandmother a teacher, I knew we had to start the good habit of reading books at an early age. Heidi enjoys looking at the pictures, and trying to eat the corners. But good habits started young are harder to break. And it is great for her brain development. I could, but won't, quote lots of research articles which describe how children who are read to have a better understanding of language and a larger vocabulary, or do better in school. Instead, I'll leave you with a picture. Look at that concentration.

Heidi and Mimi reading a book.

Thanks for the entertainment Mimi!

Unexpectedly stressful Day

The day started out with a phone call to my sister. She had been on nights at the hospital, so early morning was a time I thought I could catch her on the phone. I explained that Heidi had gone almost 4 days without a bowel movement, and she encouraged me to call the pediatrician. I'm thankful I listened to her, as Heidi became more and more uncomfortable as the day progressed. The pediatrician said that breast-milk babies typically have a bowel movement between 5 times a day to once every 5 days. But since every 4 days was not typical for Heidi, she didn't feel good, and he suggested a glycerin suppository and apple juice. Therefore, Heidi received her first taste of juice! She sucked down 2 ounces faster than I expected. The suppository took 2 hours before we saw the effects. She filled up a diaper, but that is manageable. Oh, but I did put a disposable diaper on her to make things easier!

And my other big event, is that for a while now, I've been thinking that Skipper hasn't been doing well. Nothing that I could put my finger on, as he was still eating normally, and became excited for walks or the park. But he was lagging near the end of walks. And seemed to sleep in one spot on the couch more frequently. So I packed up Heidi, Skipper, Sophie, and myself for a trip to the vet. Not good news, which did not come as a surprise as we had a heart x-ray back in December. Skipper's heart is beating too fast, and his blood pressure is super high. An EKG showed irregular beats. He started on medication to make his heart beat slower but stronger, and to reduce his blood pressure. We have to go back in a week to make sure the kidneys aren't negatively affected by the medicine. I'm hopeful this will work. At the same time, I need to be realistic and acknowledge that this is pretty serious. Boo. I'll be giving Skipper some extra cuddles and treats.

Side note, Sophie went because I needed the vet techs to cut her nails. She cries and squeals and screams, and it isn't worth the stress of Kelby and myself trying. Instead, I let them hold her as she cried, squealed, and screamed. Through the door, I could her them telling her it was okay, but she wasn't believing them!

And since too many words without pictures tends to bore people, here are a few pictures.

Heidi entertained by Sophie.

4th of July, my birthday, Heidi's 1st parade, 2 freaked out dogs.

Fudgie Pops

I enjoy "reading" cookbooks. I read recipes/looked at pictures in a cookbook called Taste of Home, Kid Approved Cookbook by Readers Digest. In it I found a couple good-sounding recipes, and knew I had to try the Fudgie Pops. I made them yesterday, and they are delicious!!!! I always prefer to cook and bake myself, rather than buying processed foods, and this was a perfect recipe. I avoided some of the more tedious aspects of the recipe for simplicity sake, decreased sugar slightly, and reduced the sodium amounts.

Fudgie Pops

Fudgie Pops
1/4 cup butter
1/2 cup flour
4 cups milk
1 1/3 cups brown sugar
1/3 cup baking cocoa
1/2 tsp salt
2 tsp vanilla
molds to use in the freezer

In large saucepan, melt butter over medium heat. Stir in flour until smooth. Gradually add milk. Stir in brown sugar, cocoa and salt. Bring to a boil, cook and continually stir for 2-3 minutes, or until thickened.

Remove from heat, stir in vanilla. Pour into molds (or small plastic containers for when you run out). Freeze until firm. I just had to eat one while I wrote this out. Now I have to restrain myself from eating a couple more.

Will I ever see play as play and not therapy?

My job (or I should say my previous job) was working with little children with delays and disabilities. I taught the parents how to help their child in all areas of development, with behavior, and feeding. We did lots of problem solving, and many techniques were through trial-and-error. I did develop a tool box of tricks, and proven techniques.

Now that I have a child of my own, not a moment goes by where I don't think about what developmental skills we could be working on. Or which moment or skill reminds me of a previous client. This sure puts my brain on overload. I have been improving my self-talk, that it is okay to sit back and enjoy this time with Heidi and she will learn skills on her own. I have no developmental concerns at this point, and if some arise, I am equipped to figure them out, know what resources are out there, which friends to call, and I can help treat her if needed.

I am making an effort to see play as play time. We still have times where we work on developmentally appropriate skills for a 3 month old, such as tummy time, listening to stories and looking at pictures, holding toys, listening to music, and talking to each other. But I am purposely not counting minutes or repetitions per day on certain activities. The TV is on in the background at times (shocking!).

But she does have a preference for only rolling over her left shoulder, so we practice the right side as well. :) I can't give up all my training. I do take notice when she learns a new skill, such as bringing her hands together in mid-line on her back. Or holding a small toy in each hand. Or imitating facial gestures. Or when she makes a new sound. It will always be like this. But I do resist from doing developmental tests on her.


Picture time.

While we were in Boston for my sister's wedding, we took Heidi on her first subway ride. How's that for giving her new experiences and stimulating her senses?!

Laura and Heidi, Boston subway

 First time Heidi reached up to hold onto a toy without it being placed in her hand. She was confused, as she couldn't figure out how to let go.

Heidi holding onto a toy

At Daddy's graduation ceremony. We never expected to have a young daughter in this picture, but it was a wonderful experience.

Kelby's graduation ceremony

Great-Grandma

One of my favorite stories that my Grandma tells me, is how my Great-Grandpa loved to hold me, as my eyes were blue just like his. He passed before I could remember him, so this snippet of someone else's memory is enjoyable.

With this in mind, I was super excited for my Grandma to meet Heidi, her Great-Granddaughter. I purposely took lots of pictures.

Great-Grandma soothing Heidi.

Great-Grandma and Heidi. Beautiful!

Now Grandma, or Great-Grandma to Heidi, has a memory to tell. Heidi woke up from a nap, and after noticing Great-Grandma standing in front of her for the first time, gave her a huge smile! A special memory in my heart as well, since I was able to witness this moment. Great-Grandma loved holding Heidi, and Heidi took especially good naps snuggled in Great-Grandma's arms. Heidi showed off her beautiful open-mouthed grins.

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