One Month of Helmetless Fun!

I have been missing bragging on my sweet baby Ben, so I thought I would post an update.

It has been over a month since Ben finished helmet therapy! Everyone asked me if he was so much happier without his helmet, and I have to say there was no difference at all for him. He has always been a happy baby, and the helmet really didn't affect him in any noticeable way. It is much more difficult on the parents than on the kiddos.

That being said, I could not be happier to have his head back! I still find myself playing with his hair every time I feed him. The "where did he get that red hair" comments have returned- after a major decrease while he was in his helmet. And the timing could not have been any better for getting the plastic hat off- I can't imagine if he had been in it this last month. We would not have left the house because he would have been so miserable.

Ben is still in physical therapy, but only once a month. We went back today for his first visit since he got his helmet off. Kea, his therapist, was so happy to see him without his helmet! She was so impressed with the progress he has made in the last month. Ben is army crawling all over our house, and it is only a matter of days before he takes off on all fours. He gets up on all fours and smiles so big like he is going to race around, but then he gets down on his belly. He is trying to pull up on things, but hasn't quite figured that one out yet either, although he really wants too.

He is growing up too fast! J.P. brought it to my attention last night that we have a 9 month old and I almost started to cry! He is supposed to be my baby, and he is just growing up so fast! I wish I could keep him little forever!

Ben had his 9 month checkup on Monday and weighs 19 pounds 10 ounces! This is only the 30th percentile, but it is the same weight that Jack and Luke were at 1 year old. It is all in Ben's big head, cheeks and double chin! He seems to be a very healthy little guy, and we don't take that for granted! I am so grateful for my happy healthy baby- especially after all he has been through.

I will post some of the latest Ben pictures, as I am sure you have been missing his sweet face!

Also, I started a fun blog about being a housewife. I share tales of my boys and other fun things about my life on there- so check it out: Barefoot and Pregnant.

End of Helmet Photo Shoot

Happy happy baby!

So Happy to show off his pretty red hair!!

Look at those cheeks!

His very last helmet picture!!

Profile Shot Look at the egg-shaped head!!!

The end of a chapter...

Hip hip hooray!!!! Ben is finished with helmet therapy!!!!

Ben and I went to Dallas today, along with my mom, for what we thought would be a helmet adjustment and scan. When we arrived Dwayne said Ben does not have to wear it anymore! I was so excited that I didn't ask too many questions. I probably should have been a bit more inquisitive about if he had talked to Dr. Genecov or how he came about his decision to discharge us, but I was too excited- I just wanted to get out of there. We might send him an email just to double-check that it is the right time for Ben to finish up, but I won't push the matter too much. I am so happy to have Ben's fluffy head back!

As we were checking out of Star Cranial, the receptionist said, "Have a good life!" I thought this was great- no more helmet appointments! Woo hoo! Dwayne said we could come back in six months, when we go see Dr. Genecov, to get a scan if we wanted to follow up, but it is not required.

The whole afternoon I was kissing Ben's head and playing with his hair. I just can't get enough of his head. It was amazing how many comments he got as we were walking around: "Look at that red hair!", "What beautiful hair" and the ever-present "Where did he get that red hair?" I didn't realize how few comments we got with his helmet until he had it off. He looks so different with it off- it might take me a couple days to get used to it. I am loving his fluffy red-head!

As my mom and I were talking today she said, "What a crazy six months you have had!" I couldn't agree more! It has been almost six months since we received Ben's diagnosis. At the time it seemed like it would take over our lives forever. It is hard to believe that this chapter in our lives is coming to an end. Ben has amazed us with his strength and positive attitude- he truly is the happiest baby I have ever seen. This journey has made us realize how much we take our health for granted. I appreciate all three of my children so much more because of what we have been through. What a journey it has been!

Ben's journeywith Craniosynostosis is winding down, but I will continue to update the blog whenever there are any major milestones or developments. Thank you all for your continued support and prayers. We are so grateful for all of our family and friends!

(The picture above was taken tonight to document this momentous day! There will be many more hlemetless pictures to follow. It also shows a more serious side of Ben. He was totally exhausted after his big day!)

Dallas Day 8 and a Helmet Update

Ben and I had a Dallas day today! We met with Dr. Genecov and had a helmet adjustment. It was a busy day, but we had good appointments.

Dr. Genecov opened the door and Ben's face lit up like a Christmas tree! He smiled so big and stretched his arms out to Dr. Genecov- it was one of the cutest things I have ever seen! Dr. Genecov held Ben for a minute while his nurse and fellow gushed over him. He is a big hit at their office! (Enough bragging about Ben... I know...)

He said that Ben's head looked great. He was pleased that his fontanels (soft spots) were both still open- which I thought we wanted to be closing up. He said we do not want them to close up too fast or get too hard because they could fuse again. So, Ben's head is doing just what it is supposed to do. I asked him how much longer he wanted Ben in the helmet and he said to keep him in the helmet until he outgrows it, but we do not need to get a second helmet. He was very happy with Ben's results and doesn't want to see him again for six months!

After that, we headed on over to Star Cranial. I was anxious to ask Dwayne how long he thought Ben's helmet would fit him. He said he is a very skilled technician who can make the helmets like Ben's last for a long time (not the news I really wanted to hear). He then went on to say that there is a group of doctors involved in a study, Dr. Genecov being one of them, and Dr. Genecov tends to keep his patients in their helmets longer than the other doctors. The average for the others is 14-18 weeks. Ben has been in his 16 weeks currently.

Dwayne said he is meeting with Dr. Hobar, another surgeon who does the same procedure as Genecov, next week. He said he would ask his opinion about how long he thinks we should keep Ben in his helmet. I was not going to leave there until I got a guess out of him, so he told me probably about another month. This was music to my ears! I was prepared for another three months. I am trying not to get too excited, but it is looking like things are winding down on the helmet therapy front.

We go back in two and a half weeks. We will do another scan and Dwayne will look at everything and call Dr. Genecov to discuss the results. We have another appointment booked for August 10- I am hoping this will be our last helmet appointment!

Going to Dallas wares me out, but it is nice to have Ben to my self all day! We had a fun day together, and I will probably miss the little day trips once they are over. But, I can't wait to have his perfectly round head on display for all to see, without a helmet!

Picture: Ben fell asleep with his book in his mouth while we were taxiing to our gate in Tulsa- not very good timing. But, he did look awfully cute, so that is the picture for this week's post!

Happy 4th of July!

Love, Ben

Three (almost four) Months Post-Op

We had a scan at our Dallas appointment last week, so I thought I would post some pics. His shape is looking really good. They want his forehead and back right corner to round out a little bit. Other than those two minor things, his shape is right where they want it to be.

As you can see, the changes in the last six weeks are not as dramatic as the first six weeks. This is totally normal, because the head growth is not as rapid. We are still making progress!

We go back next week and see Dr. Genecov. I am really looking forward to hearing what he thinks of Ben's progress. I will update again then!

June update

It has been almost a month since my last post! As I've said before, no news is good news.

Ben has been working really hard with his physical therapy, and has made great strides since we started. We saw Liesa, our primary physical therapist, two weeks ago and she was amazed at how much Ben has improved. She had not seen Ben in almost two months, so she was very impressed! She checked over all of the goals she made for Ben initially, and he had met every one of them. She does not consider Ben to have any kind of delay, and wants to cut back on our appointments- woo hoo! Ben will go every-other week until he starts crawling, and then once a month until he starts walking. He will be cruising around before we know it. He already makes his way around by rolling and squirming. His nickname at our house is "Speed Roller!"

Last time we were in Dallas, I asked our orthotist how long he thought Ben would be in his helmet. He didn't give me a direct answer, but said that Ben still has both on his fontanels (soft spots) very open on top. They want those to be closed, or close to it, before they take him out of the helmet. To me, it feels like that means another 3 months. The shape of his head is looking phenomenal, we just need that bone to grow in on top. They said initially 3-6 months of helmet therapy, and we are a little over three months in. Hopefully it won't be longer than six!

We are headed to Dallas tomorrow for an adjustment, and then we will go back in two weeks and see Dr. Genecov. I can't wait to hear what he says! I think Ben is having a scan tomorrow. If so, I will post the scan and some "head shots" later this week. I love seeing how much he is improving!

Thank you all for your continued support. We are so blessed to have this sweet little boy in our lives!