June 20: Physical Therapy

Isla had a frustrating physical therapy session today.  It put me in a grumpy mood for the rest of the day, so here is my long rant about it.

Isla started fussing and crying as soon as we got there and Shannon started to talk to her.  She's old enough now that she can remember what happened last time and how much work it is to be in that room.  Except that last time she was happy and laughing the whole time, so I don't know what her deal was today.  (Well, she has been out of sorts lately.  I spotted two teeth peeking through her gums today, one molar and one other one, so that may be part of the problem).

Shannon just barely attempted to do a few exercises with her, but most of our time was spent trying to find something that would make her happy.  But nothing worked.  She was just not in the mood for any of it.

It's frustrating because it's not free to go to these physical therapy sessions.  Today was a complete waste of our time and money.

It's frustrating because I really want her to learn these skills and to develop normally.  There are times when I feel like she is doing okay.  She is starting to cruise all around the room, using only the walls for support sometimes.  That seems fairly normal development for her age.  But other times she seems so far behind.  We had a nine month old baby over to visit this week, and she was all over the place.  Crawling, rolling, pulling up, standing...and it all seemed so effortless for her.  Isla really has a hard time pulling herself up.  I'm not sure if she is just not strong enough, or if she just can't figure out how to do it.  And then there is the whole scooting thing, which in and of itself is not that big of a deal.   But because she scoots, she can't pull up, and she is probably not going to take off walking until she is able to get herself into a walking position.  So I really want physical therapy to go well, and I want her to learn how to do these things, and I am growing impatient, so I'm writing this long run-on sentence to complain about it all!

Working with her at home has not been going so well lately.  We were on vacation last week, so it was hard to work with her then.  And she has been Little Miss Crabby pants off and on since we've been home, which makes it hard for her to be cooperative.  I don't feel like she made any progress in the two weeks between physical therapy sessions.

Shannon seemed to be less optimistic about Isla as well today.  Last time, she thought Isla would take off crawling soon.  This time, she said it was okay if she didn't crawl.  There are a lot of benefits to crawling, but she admitted that some kids just don't do it and won't do it, and it's not the end of the world.  I think she thinks Isla is going to be one of those kids.

In the midst of all this, the question keeps floating through my mind:  Is all this really necessary?  If we just left her alone, would she figure this all out by herself in her own time?  It's hard to know, and I would hate to take a chance and then be wrong.

We'll just keep trying at home, and we will go back next week and hope for a better session.  For today, I'm just frustrated!!

December 22

Day 22 Advent activity: Watch a Christmas movie

I DVR'ed the old Santa Claus is Coming to Town movie, so we watched that tonight before bed. We really only watched the beginning and the end, as I fast forwarded through at least 30 minutes in the middle. Audrey didn't really care though. She was happy enough just to watch the Santa Claus is Coming to Town song at the end. That is the newest Christmas song that she is learning. She has even made up actions of her own to go along with the words, and it is so cute when she sings it.


Also, Isla had a physical therapy appointment today. She is only going once a month for physical therapy now, just to check in and make sure her development remains on track. Shannon (our physical therapist) gave her glowing reviews for her ability to sit up by herself so steadily. She also got great reviews for her head control and range of motion, which has improved tremendously over the past few months.

The only thing we still need to work on is tummy time and rolling over. While she has rolled over, she is not doing it regularly. We have been consistent with making her do lots of tummy time, but she STILL doesn't like it much. I'm thinking that is a big reason why she doesn't want to roll over. Why roll over and be on her tummy, which she hates, when she could just stay on her back and side, which she loves.

In the end, Shannon says that if she doesn't roll over, it's still okay. As long as she continues to develop normally in other areas and we continue to put her on her tummy so she can build strength, then it is okay if she doesn't want to roll over yet. I just wish she would be a little happier during tummy time. I didn't expect it to still be such a chore at 6 months old.

November 15

I am thankful for Isla's great physical therapy session today. She did such a good job and cooperated with everything Shannon (her physical therapist) wanted her to do. She showed off how strong she has been getting over the past two weeks, and Shannon was really impressed and pleased!

I would say that she is now very close to normal (whatever normal is!) with her head and neck strength and range of motion. She is still just a bit tight on the left side, so Shannon wants to keep seeing her for a while longer and make sure she continues to make progress.

We took the helmet off for a few exercises, and Shannon noticed an obvious difference in her head shape. It is hard for us to tell if it is changing, because we see her every day. Her next head scan is in two weeks, so I'm anxious to get the official word on whether this helmet is working or not!

September 22

Isla had a fairly intense physical therapy session this afternoon. Shannon tried lots of different things to figure out the best way to get her to move her head and neck and improve her head strength and control. When we got home, Isla went to sleep and slept in her crib for one hour and 40 minutes! That is her best crib nap ever. (All the other longer naps she has taken have been in her swing or carseat). I think I might like this more aggressive physical therapy!

I also have to add this picture of Audrey and the vacuum. Tonight, I mentioned to Audrey that our floors were dirty and needed to be vacuumed. The worst part of getting rid of Maggie is the dirt that accumulates on our floor. Maggie was like a little vacuum cleaner, cleaning up food and crumbs before it would even reach the floor! Without her, I am amazed at how quickly our floors get dirty!

So tonight all I did was mention the word vacuum, and Audrey got so excited. She pestered me over and over again, "When are we going to vacuum, Mom? We got to vacuum, Mom. We got to."

This was shocking because for entire life, all 35 months of it, Audrey has hated the vacuum. She has always cried and fussed when we run the vacuum. Always. But all of a sudden tonight, the vacuum was the best thing in the world. I strapped Isla into the baby carrier, got out the vacuum, and ended up vacuuming the whole house. After we finished one room, Audrey would pick the next room to be vacuumed. I let her push the button to turn it on and off, and she thought that was great. And the loud sound that used to scare her now makes her happy. She kept saying, "That loud sound make me laugh. Ha, ha, ha!"

When we finally finished all the rooms, Audrey said. "Now the whole house is clean. Now we take a break." Oh, she is a funny girl!

September 14

Wow, today was rough! Get ready for a long blog post ahead including: pictures of my sweet, ornery girls who refuse to sleep during the day, more concerns about Isla's head and neck, and a precious newborn photo shoot.

I started the day with the girls in their matching shirts. I have been planning to get a picture of them together with their shirts for the last 3 months and finally got around to it today! I would have liked for them to be in opposite order, with Audrey on the left and Isla on the right. But Audrey was being so squirmy, I was happy just to get her to be still long enough for a few pics.
Isla kept grabbing a hold of her hair, so I don't really blame her for not wanting to lay down next to her for too long. That girl has a strong grip!
So, we headed out with their matching shirts to go see Dr. Shannon (that's what Audrey calls her), Isla's physical therapist. It wasn't good news at physical therapy this morning.

Back when Isla was two months old, Shannon had some concerns about Isla's somewhat limited range of motion with her neck on both sides. She should have been able to turn her head a full 90 degrees to each side, but she was only able to turn about 60-70 degrees. Shannon thought that stretching exercises at home would help her develop the strength to turn it all the way on both sides. We have been doing this exercises at home consistently, but it is frustrating as Isla just doesn't want to turn her head!

Well, here we are 6 weeks later, and while Isla is getting stronger, she is still not turning her neck more than 60-70 degrees on each side. Shannon is not sure exactly what is causing this. She wants to rule out the possibility of a problem with her neck bones. She says that it is very rare, but sometimes there is something wrong with the bones of the neck. If that is the case, then this kind of physical therapy is not going to help...it might even make things worse if we continue.

So, now we have to take her in for a neck x-ray to make sure everything is okay with the vertebrae in her neck. Seriously, this girl is trying to give me a head full of gray hairs before she is even 4 months old! If everything looks okay with her neck bones, then Shannon will move on with a more aggressive physical therapy plan to stretch her neck muscles. If something is wrong with her neck bones, then I have no idea what will happen next.

(Actually I just did a little internet research and found a name for this: Klippel-Feil syndrome. It is when some of the neck vertebrae fuse together. It's kind of scary to read about all the possible problems associated with it. So let's just pray that everything looks good on Isla's x-ray!!!)

Daniel was off work this afternoon. So after physical therapy, I left him with the girls and went to take pictures of my friend's new baby. This was a bright spot to the day. Baby Havanna was the perfect little model, sleeping and snuggling all the way through our photo shoot.

After the photo shoot, I came home to two little girls who were refusing to nap. Audrey especially was just a mess all afternoon and evening. Today was definite proof that she really still needs to nap daily!

The long day continued as I also taught a few piano lessons and cooked dinner for our family and for two other families. Why did I squeeze all of these things into one day?? All of this on only three hours of sleep last night, as I have not been sleeping well lately at all.

I am staying up way too late blogging about this long day. Time to get some sleep now and hope for smoother sailing tomorrow!!

August 18

I meant to post this last night, but I kept falling asleep and couldn't finish it.
On Wednesday, Isla had her second physical therapy appointment. Shannon, her physical therapist, noted improvement in her range of motion and head control. She seemed pleased with that progress. She also seemed optimistic that as her neck and head continue to strengthen her head would round out on its own.
I am not feeling that optimistic. I just don't understand how her sweet little flat head is ever going to round out all by itself. It has not improved in the past 2 1/2 months, it's hard to see how another 2 months will change anything.

Generally, flat heads are caused by neck problems. A baby doesn't move their neck around enough or only moves it in one direction, therefore causing a flat head. With Isla, the therapist seems to think it is the other way around. Because her head is flat, it is harder for her to move her neck all the way to each side. So it is the flat head causing some minor neck problems and not the other way around.

Shannon felt like Isla was on track now though, so we don't have to go back to see her for another two weeks.
In other news, Isla has started sleeping through the night! (At least for the past three nights. I'm fully aware that she could turn me into a liar and wake up every hour tonight.) Last night she slept from 8 pm-6 am without waking up once. It was great! She is a horrible sleeper during the day and will often only take 30 minute cat naps. But she is sleeping at night, so I'm trying not to complain!

Audrey is doing better with sleep. She is generally sleeping from 8 pm-7 am. But she is usually up once or twice a night. When she wakes up, she comes into our room, then we walk her back to her room and she goes back to sleep. It's not too bad. Sometimes she wakes up at 5 am and won't go back to sleep, and that is the only time that we will let her sleep in our bed. I really want her to sleep in her own bed, but when it is 5 am and my choices are to get up with her or to let her sleep with us, I'm going to choose let Audrey sleep with us for a little bit.

August 10

Today we learned that some dear friends lost their two year old little boy last night. I cannot even put into words how devastated I am for them. Please pray for our friends Brennan and Janna and all of their family right now.

It definitely puts life into perspective. It makes me want to hug my girls a little more tightly tonight. And it makes me feel silly for all this worry about the shape of my daughter's head.
With that in mind, here is how our physical therapy appointment went today:

Our physical therapist was extremely nice and helpful, and we had a good appointment. She confirmed what I already suspected (based on my internet research): Isla has brachycephaly, a form of plagiocephaly where the head flattens uniformly in the back. The therapist thought she likely developed this condition before she was even born.

The therapist did not think that Isla has torticollis, which is a common cause of flat heads. Isla can move her neck in both directions, though there were some minor concerns with the end range of motion. She can't quite turn her neck all the way to the side in either direction. The therapist sent us home with two stretching exercises to do with her. Other than that, it doesn't sound like there is much physical therapy that they will do with her. We have a follow up appointment next week, and then she will let us know if she thinks Isla will need to continue to come back for therapy.

So that's good news, I guess. It's also bad news....if therapy is not really an option for treatment, then that leaves the helmet as the only other option for treatment. We asked her what she thought Isla's chances of wearing a helmet were. She was hesitant to answer, saying that Isla was really young and there is still time for her head to reshape on its own. But then she said she would give her a "fair/moderate" chance of having to wear a helmet in the future.

One of the symptoms of having a flat head is facial asymmetry. As the flatness causes the skull to reshape, it can also cause facial features to reshape...specifically the eyes, ears, and jaw. In Isla's case, you definitely notice the asymmetry in her jaw. Notice how the right cheek/jaw is fuller and more filled out than the left side.

The therapist noticed her jaw shape and asked about Isla's eating habits. We told her that she is a very slow, sometimes fussy eater. So she called in a speech therapist to come in to make sure that there was not a muscular problem with her jaw.

As soon as I started to feed Isla her bottle, the speech therapist noticed the problem. It was not a jaw/muscle problem. It was a problem with the way she was sucking and breathing while eating. She showed us what we can do to help her learn to feed better, and immediately Isla's feeding improved drastically.

So the visit with the speech therapist was probably the most helpful part of today's visit, even though it had nothing to do with the shape of her head! I just feel dumb that I didn't seek out help sooner. I didn't know that this was a problem that could even be resolved with help!