PT and Dallas Trip 3

I guess no news is good news when it comes to Ben's Head Blog! The past couple weeks have been busy, but nothing too stressful or urgent.

Ben started physical therapy last week. He has a mild case of Torticollis- which causes his head to always tilt to the left. It also prevents him from turning his head all the way to the left. Dr. Genecov mentioned this in the first 10 minutes of our first visit with him, as it is very common with Sagittal Craniosynostosis. Another reason to do physical therapy with Ben is to keep him on track with his gross motor skills. Because his head is so big and he has the added weight of the helmet, he is at risk for delays in gross motor skills- such as crawling.

Ben progressed a great deal just in the week of doing our special exercises. We would put him on our chest to do tummy time, so that he would be trying to lift his head to see our faces instead of just the floor. He did great with the exercise, especially with J.P. He usually just wanted to lay his head down and cuddle with his Momma! We also sit him on a ball and tip him to his left so he will tilt his head to the right. It is a natural instinct to balance yourself.

This week we are on to bigger and harder exercises. Ben now has tummy time on a rolled-up towel with his elbows tucked under him, like in the picture above. This allows him to hold his head up, but his shoulders take some of the pressure off his neck. He is doing really well so far. We also are focusing on getting him to turn his head to the left by tracking a toy. Again, doing great. I think he will be progressing quickly and we will hopefully be done with physical therapy, at least on a weekly basis, in a month or two. Right now we are going twice a week on non-Dallas weeks, and once a week on the weeks we have helmet fittings.

We went back to Dallas this Tuesday for another helmet adjustment. Everything is going along great- no problems. They didn't even need to adjust his helmet much, just tuck his little ear pieces back in to keep it stable on his head. Next time we go he will be scanned again. I am excited to see the progress he has made with his head shape. We will see Dr. Genecov next time we go back as well. Ben is such a great baby that the Dallas days are almost a little vacation for me! I get Ben to myself all day and get to do a bit of shopping every now and again. He is such a good traveler!

Good news on the insurance front! We were approved for in-network rates. I won't go too far into it, but both of our surgeons were considered out-of-network. It was possible that we would have had to pay a very large deductible because of this, but our appeal was approved and our insurance company is covering our surgeons. Thank goodness!!

Things are finally starting to settle down a little bit around our house. I laugh when I say that, because things are never calm at our house with three kids under four! But, they are much better than they were in the middle of preparing for his surgery.

Thank you to everyone for your continued prayers and support!

One Month Post-op

Well, we have had quite the busy couple weeks since my last update! Ben is officially one month post-op and has been in his helmet 23-hours per day for over two weeks. He amazes us with how well he is doing.

Ben has adjusted amazingly well to his helmet. He had a few nights that he didn't sleep well, but I figured out that he was getting too hot all swaddled up with his helmet on. Once I switched to a lighter blanket and left his little feet out he slept great again, thank goodness! He has spoiled me by sleeping through the night! My biggest gripe about the helmet is that his hair is falling out like crazy. I am sure this is a combination of the helmet rubbing on his hair all day as well as being very hot. Hopefully it won't all fall out! Ben is doing so well in his helmet, he even lifted his head up off the floor for the first time last week! This is a big step because he has a huge head and the added weight of the helmet.

J.P. and I have adjusted to the helmet lifestyle as well. Ben has two baths every day to wash his hair and his helmet so he doesn't get too stinky. I am getting used to explaining it to people when they ask. I have found that a surprising amount of people know of someone who has had to wear a helmet for one reason or another. Who knew!? I'm actually so used to seeing him in it that I think he looks a little funny without it. We cherish our one hour a day of helmet-free time. I kiss his head and snuggle with him as much as I can.

Ben and I had our second day trip to Dallas yesterday. Although it started off on the wrong foot- I overslept- it went very well. We made it to Dallas in time for our 9a.m. appointment with Dr. Genecov. He felt around on Ben's head and said everything is good. He had some concerns about the helmet therapy, but worked all of those out after talking to our "helmet guy." He said that Ben still has a long time in the helmet because his soft-spot on top is still so open. But to me it seems like we just started with the helmet, so I am not discouraged. I just hope he won't be in it for six more months!

We got in a bit of shopping in between appointments yesterday, which was fun. It is nice to have some time outside of doctors' offices! Then we headed to Star Cranial, the helmet place. Ben had a few adjustments made and DeWayne talked to Dr. Genecov on the phone, which DeWayne said was a first. Dr. Genecov is taking a more active role in Ben's helmet therapy than he has with his previous patients. It is just one more reason we have been very happy with Dr. Genecov.

Today we met with Dr. Kayser, a genetic specialist. As I mentioned previously, Ben's genetic testing indicated that he had some abnormalities. He said that Ben's Y chromosome has some parts missing and some extra parts as well. The syndromes associated with the abnormalities don't seem to be present in Ben, thankfully. None of the abnormalities appear to be related to Ben's craniosynostosis diagnosis. The meeting was a bit overwhelming to me- genetics is all so complex. Both Ben and J.P. had blood drawn today to do more tests. Since it is his Y chromosome that is abnormal, all 3 boys and J.P. may have the same abnormality. Since they are all seemingly healthy we are not too worried. He also said that the Y chromosome is relatively unimportant. We will find out more in 2-4 weeks.

We go back to Dallas in two more weeks for a helmet adjustment. Should be an easy trip with only one appointment!

This whole process has definitely made me more grateful for my healthy kids! Ben's condition is minor in the grand scheme of things, and he should be good as new in six months. We are so blessed!

Easter Bunny

Happy Easter!

Love,

Ben

Dallas Day Trip

Ben and I made it to and from Dallas yesterday without a hitch! I was so nervous about making it through security by myself, but it ended up going smoothly. Ben enjoyed his first plane ride- even though he slept most of the time.

We left our house at 5:40 a.m., which I thought would be awful, but it worked out just fine. We made it to Dallas at 8 a.m. and back home by 4 p.m. We rented a car and I drove us all over Dallas. I am learning my way around Dallas quite well!

His helmet appointment was much shorter this week, thank goodness. His ear opening was cut to be a little bit bigger, and they moved the pads inside his helmet. The helmet technician had me feel Ben's head where to pads were and I could feel on his skull little indentions. These will all even out, it just goes to show how fast his head is growing; last week the pads were barely touching his hair, and five days later they caused indentions. We don't go back for two weeks, so I am sure we will be ready for an adjustment.

After his helmet appointment we had an appointment with Dr. Genecov. We were able to get in and out of his office in less than 30 minutes- pretty impressive! Dr. Genecov said that Ben's incisions look great, and that everything is going as planned. He wants to see us back every time we have a helmet appointment so he can make sure the shape is being corrected properly. This is a bit of a scheduling hassle, but we want to make sure we are getting the best results out of helmet therapy.

There are several syndromes that go along with Craniosynostosis. Ben does not have any other symptoms of any of the syndromes, but we wanted to have him tested just to be on top of things. During Ben's surgery, a blood sample was taken and sent for genetic testing. We received the report yesterday from Dr. Genecov and Ben has 3 abnormalities. Dr. Genecov is not qualified to interpret the report so we are setting up an appointment with a geneticist to discuss the abnormalities. We are not too concerned at the moment, based on what little we could decipher from the report. It is just one more thing to worry about and wait on an answer. Hopefully we can get answers soon!

We will be going back every two weeks, which is much better than every week! Flying down, renting a car and flying back really wasn't too bad. I can handle it every other week.

Ben is now wearing his helmet 23 hours per day! He has done so well adjusting! He has not had any problems sleeping in it or anything. I am certain that it bothers me much more than it bothers him. I miss being able to kiss his head and play with his beautiful hair! I will just have to take full advantage of the hour-a-day I get without his helmet. Yesterday was also my first time with him in public in his helmet. Only one person asked me why he had a helmet, and I didn't catch any stares like I was anticipating. The only thing I noticed was that I didn't get a single red-head comment, which is a real rarity (his hair looks much darker in the helmet because it gets all sweaty).

That is my weekly update! Ben is doing great, and we couldn't be happier! Thank you again for all of the love, prayers and support. We are so blessed!

Helmet Time

It has been more than two weeks since Ben's surgery, so now it is time to start helmet therapy. My mom, all three boys and I went to Dallas for a Spring Break trip, with the main objective of getting Ben's helmet. We managed to get in a little bit of shopping too!

We picked up Ben's helmet yesterday, which was a much more complicated process than I had anticipated. The helmet was made just for Ben, based on the measurements they took when his head was scanned two weeks ago. They put the helmet on him and then made various adjustments to make sure it fits properly. Getting the right fit is a long trial and error process-our appointment lasted almost two hours.

Ben's helmet is clear so that we can keep an eye on his incisions, which are healing wonderfully. I am glad it is clear because we can still see all of his pretty red hair!

Ben will be "breaking in" his helmet over the next five days. Today he is supposed to wear it for one hour followed by a one-hour break, then repeat. The time he wears it will increase each day until he is wearing it 23-hours per day. He will have his first nap in his helmet on Sunday, and sleep in it all night Monday night.

So far, it has not bothered Ben at all, except for when I pick him up- he shrieks just for a second. I think it might pinch his little neck. He has been very happy in it, and we had our first helmet photo session. I think he has to be the cutest kid in a helmet ever! I think it will be harder for me to adjust to the helmet than for him.

Ben and I are flying back to Dallas on Tuesday for a helmet adjustment and an appointment with Dr. Genecov. It will be our first flying-solo adventure. I am a bit nervous about getting through security alone, but we will get the hang of it after a time or two. After that, we will have a two-week break until we have to go back.

On a side-note: I read an article detailing the procedure similar to Ben's. Click here to read it. There were a few differences, but it a good, detailed description for those of you who are interested.

One Week Post-Op

It has been a week since Ben's surgery, and it is simply amazing how fast he recovered! He is 100% back to himself. He is on his normal schedule, and is such a happy little guy. You would never know that he had his skull cut open just a week ago. We could not be any happier with the decision we made to go with the less invasive procedure.

Ben has not needed any pain medicine since we have been home, and he just finished up his antibiotic. All we have to do is shampoo his head every day for three weeks to keep his incisions clean. His stitches are all disolveable. It is amazing how easy the upkeep has been.

I think the past week has been much harder on J.P. and I than it has on Ben. We were both exhausted from our time in Dallas, and there is no time to be tired with 2 toddlers around! We are slowly recovering, and Ben has been so kind to let us sleep all night.

One of the hardest things has been protecting Ben's precious little head. Ben has a huge soft-spot on top of his head, and two crazy brothers running around. I can't lay him on his play mat or in his bouncy chair if they are awake, which makes it pretty hard to get things done around the house. I never thought I would say this, but it will be kind of nice once he has his helmet!

I am going to Dallas with my mom and all three boys next week. We are making a little trip out of going to get Ben's helmet. I think Jack and Luke will probably want to get helmets too! Since I will be doing lots of flying back and forth, it will be nice to have a fun trip in there too.

I honestly can't thank everyone enough for all of the prayers, support, and kind gestures! The meals have been especially helpful in this last week. Thank you to all of the wonderful Marquette parents who make goody bags for Jack and Luke, and who setup a 742-DINE account for us. We are so blessed to be surrounded by such wonderful, thoughtful people!

I wanted to include a few post-op pics of Ben's head. The shape has already changed a little bit, but the real difference will be seen after helmet therapy.

We're Home!

We are so happy to be home! It feels like an enormous weight has been lifted from my shoulders. I do not have to worry about surgery anymore! It is a wonderful feeling.

Ben and I both slept pretty well Thursday night. He didn't even wake up when the nurse came in with the blood pressure cuff in the middle of the night. We both woke up feeling good and ready to go home. Ben thought it was hilarious to rip the monitors off his chest. We took it as a sign he was ready to get out of there! Dr. Weprin and Dr. Genecov's fellow came by and they both said he looked great and that we could go home. Yippee!!

Ben was the biggest hit at the hospital! Lauren, our nurse in the PICU, said he was the cutest kid she had ever seen, aside from her own. Our nurse yesterday morning took him out and showed him off to all the other nurses. Everyone who came in our room said "I heard about his red hair!"

We were discharged at 11:30am yesterday. Star Cranial was able to squeeze us in for an appointment in the afternoon, so we won't have to fly back on Monday as originally planned. Ben was scanned for his helmet. They have a special machine with 4 lasers and 10 cameras which measure all of the dimensions of Ben's head in 1.5 seconds. All of the data is uploaded to their computer so they can custom-build his helmet. He had to wear a funny little cap while this was done, and he looked so silly! We will go back on March 18 to get his helmet.

We made it out of Dallas, after battling traffic, and home by about 8:30 last night. Ben slept almost the entire way home and then slept through the night. He really is the best baby in the whole world! All of the nurses said his schedule would be off for a few weeks, but he is back in his normal routine. I am amazed!

We feel so relieved to have all of this behind us. We can't believe how many people were praying for Ben this week, and we are so grateful!