Before and After

Before surgery, front
Now, after surgery, front
Before surgery, top
Now, after surgery, top
Before surgery, profile
Now, after surgery, side

Isn't it amazing to see the change?!? A lot of people haven't been able to see the change since he wears the helmet all the time now. But last night at church, I took off his helmet to show off his new head. There was literally, and audible gasp. You can really tell a difference! Praise God for how he has worked in Benjamin's life, for bringing Benjamin to where he is. How good God has been to us, and how unworthy we are for all the grace he has shown.

Construction a HEAD!

My onsie says: Construction Ahead

Look how big I am! Sooooooo big! Grandma taught me this new trick.

Our trip to Austin

Yesterday we were in Austin for Benjamin's six week post of check-up. Everything looks wonderful! Praise God for his goodness and grace to Benjamin!!

Benjamin's head is now 1.5 cm shorter (from forehead to the back of his head) and 2.5 cm wider! Amazing! His cephalic index (CI) was 61% before surgery. A normal CI is between 70% and 80%. His CI now is 78%!!

We continue with the helmet till, as the doctor says, "He grows out of it." We'll go back to the neuro-surgeon in three months, which at this point seems like forever!

Thank you for all the prayers and support! Please keep them coming as we continue to walk down this road. Things can be challenging at times, and going to Austin every week this month has been a little exhausting. But God is good, and we are so thankful for how well Benjamin is doing!

Back in the Helmet Again!

(Title to be sung to the song "Back in the Saddle Again")

Benjamin had a great appointment with the orthotist. Here's the deal with the whole knot on the back of his head. There is a triangle bone on the back of the skull. When the skull is moving, in this case do to remolding, that triangle bone is one of the first to move. When this bone moves, it pokes out. So the bump wasn't the "bad" thing. The "bad" thing is that Benjamin now has a callous where his helmet had rubbed on the bone. So they shaved a little out of the inside of his helmet, we watch to make sure it's getting less red, and that's it!

I asked the orthotist if I would still have to come and have his helmet check next week. She said that as long as The Bump is getting better (mainly less red) then we don't' have to come in till our appointment after that, which is Feb. 4th! Please be praying that the rubbing on Benjamin's head would stop and that his callous would improve so that we don't have to make the two trips to Austin next week.

Things are looking good! We are thankful that this was an easy fix, and that all this is caused by his skull moving, which is exactly what we want!

Back to Austin

I talked to Hanger, the helmet place, a little bit ago and it's back to Austin for us on Thursday. And the really fun part is that our appointment is at 9am, so we'll have to leave here super early. And the fun just keeps on coming.....

Drama!

There are some evenings that are calm, quiet, productive and very enjoyable. Then, there are the evenings where lots of little things go wrong, and all you want to do is go to bed and try again the next day. Yesterday was one of those evenings.

We had a great morning, followed by a nice lunch with Daddy and a visit from Gracie Mae and Ashlee. The boys began their naps, at the same time, and I was planning a quiet afternoon for Elizabeth and I. Benjamin pulled on of his old tricks and only slept for about 45 minutes. He spent the rest of the afternoon/early evening crying. Loads of fun!

Curtis had a meeting so I was bracing myself for a long evening with hopes that his meeting would be short. He left, and I got the big kids in the bath, while Benjamin was content to watch them and made happy screams at them. So far so good. Then, I took his helmet off. There was some blood on the inside of his helmet as well as on his head. Lovely! Upon further inspection I see that he has a sore on his incision (or is it a scar now?) which is oozing blood and puss. And upon even further inspection, I see that he has two such spots. I call my Mom who calls Ms. Terri, my parents best friend and a nurse to boot! She said call our pediatrician and be prepared for a light over reaction. I called the nurse hot line, and half an hour later, they call me back saying I need to call the surgeon. If I can't get a hold of Benjamin's surgeon, I should take him to the ER. Even though I knew that wasn't necessary, it still kinda worried the Mommy side of me which is already on high alert with Benjamin. I get a hold of the surgeon, and she says clean it four times a day, put Neosporin on it, leave the helmet off, and call her to let her know how he's doing. If he doesn't begin to improve, it will be a trip to Austin.

We've also been watching a red spot on the back of his head. Every time we take the helmet off, there's the red spot, but it quickly goes away. The rule is if it goes away within half an hour, it's of no worry. Well, it was still there after several hours AND there's a nice knot on his head to go along with the red spot. So I get to call the helmet place and odds are, end up in Austin for that.

And the icing on the cake is the Benjamin has what I think is some serious allergy problem. His nose his running non stop! And he has the cough, sneezes and watery eyes to finish his pathetic little face.

So, there's how our evening went yesterday! Here's hoping for a better go around tonight!

Prayers

Yesterday, I was reading over some old blog entries, before we knew Benjamin's diagnosis, when everything was up in the air. I asked the readers of our blog to pray that Benjamin would not have craniosynostosis, or that if he did, he would be miraculously healed before surgery.

Today, I was reading a friend of mine's blog, and she was talking about God's sovereignty, even in the times that doesn't follow what our hearts would desire. Her blog reminded me of those prayers that I had prayed, asking God to spare my son from this deformity and from surgery. God told me no. My prayers didn't go unanswered, they just weren't answered the way I would have chosen.

So now, as we continue to deal with Benjamin's craniosynostosis, do I doubt God's sovereignty? Not at all! I'm still not sure why all this happened, and why God ordained these events for our son and our family, but I know that whatever God ordains is right. And what comfort I draw in knowing that that God loves me, he loves Benjamin, and all this is in his control, working for our good and his glory.

Because my Mommy thinks I'm cute

Helmet Blooper

When the orthotist drilled holes in Benjamin's helmet, she was very careful to avoid the stickers when possible. However, she was unable to avoid the "r" in "under". Every time I look at it, I think of "undies" and crack up. Today, I have managed to pick off the rest of the letters from "under". In my free time tomorrow, I'll move the word up. In other words, Benjamin might have a helmet that just says "construction" till it's time to redo it!

Helmet update

Benjamin and I made the trip back to Austin for his helmet adjustment. All looks great! We weren't able to see our regular helmet guy (he just had his neck fused.... slacker!), but he had a very nice fill in. She said that everything looked good. There didn't seem to be enough pressure on Benjamin's forehead, so she added a little pad in. The whole point of the helmet is to keep continual pressure on the forehead and the back of his head to help skull growth.

She also drilled multiple holes into the helmet. I thought this was to help with ventilation, but really, it to help them test the helmet. The stick these little probes into the holes, and that determines if the helmet is touching in all the right places. Right now it's just guess work based on the pink spots on his head when the helmet is removed.

Something else I learned today.... Benjamin's head has been becoming less and less sweaty. The orthotist said that his head has learned a new normal temperature, and now his body can better regulate that temperature, thus causing less sweating. Cool! (literally!)

On the down side, we weren't able to get our next helmet check appointment for the 22nd (the day we have Benjamin's 6 week post op appointment). Bud, the orthotist, isn't in the office on Tuesdays or Wednesdays. So we called the neuro surgeons office to see if we could move that appointment. Nope, she's only in the office on Tuesdays and Wednesdays. Dang it! So we will be going back to Austin on the 22nd to see the neuro surgeon and on the 24th for the next helmet check. Oh the miles we will be putting on our van!

After Benjamin's appointment, we went to a sandwich shop, which happens to make GREAT Oreo shakes, so that we could get a bite to eat before getting on the road again. I was feeling a little tired, and frustrated with having to do all this driving, and was just worn out in general. Providentially, I struck up a conversation with a couple, after I noticed their hospital bracelets. They had a daughter in the hospital where we had Benjamin's surgery. They were very sweet, asking about Benjamin, talking to him and making him smile. I asked why their child was in the hospital. "Open heart surgery." Wow! Open heart durgery on their six month old who is the size of a newborn. And I was complaining about driving? I took that moment, praised God for how "easy" we've had it with Benjamin, and had a much better attitude on the drive home.

A Cutie

I took this over Christmas. I think he looks so sweet. And a little bald.

Things I'm learning

Nursing a baby with a helmet is like nursing a bowling ball.

The helmet stinks. I had been warned, but I didn't know how quickly it would start or how terrible a seven month old can smell just due to BO. Poor Benjamin, I keep checking his diaper, that's how bad the smell is.

So far, only children have been bold enough to ask "Why is he wearing that?"

Wal Mart sell really sticky velcro.

My older kids LOVE helping clean the helmet.

Mod Podge can be used to help seal a helmet, or glue a puzzle.

Day 2 and decorating the helmet

Day 2 in the helmet is going fabulously! Benjamin actually slept in his helmet ALL night long! And only woke up twice! Yay!

He's been wearing the helmet almost all the time. We take it off every couple hours to check for rubbing, but all looks great so far.

We went out with him in the helmet for the first time. It wasn't nearly as bad as I was imagining, which is typical for me. We did get several looks, but no one asked us about his helmet or head.

And I finally decorated it!! Here's the end result. (If you can't see what the helmet says in a few places, just click on the picture to get a close up) front
left
back
right
Benjamin showing off his cool helmet.

Helmet, Day 1

As you can see form the pictures below, Benjamin is adjusting quite well to his new helmet. I was a little concerned last night, when he was wearing it for the first time, and he began screaming and smacking his helmet. :-)

Our orthotist (the helmet doctor) has Benjamin on a 4 hour cycle schedule to help him get used to the helmet. It goes like this.
Day 1: 1 hour in helmet, 3 hours out.
Day 2: 2 hours in helmet, 2 hours out
Day 3: 3 hours in helmet, 1 out.
Day 4: 23 hours in helmet, one hour out for cleaning.

Benjamin has been wearing his helmet for about an hour and a half at a time so far today. The orthotist said that he can wear if as long as he wants, but wanted me to know that he didn't have to start out wearing it full time.

So by Monday, he should be wearing it full time (23 hours a day). He hasn't had to sleep in it yet, and that's one of my biggest "concerns". Those of you who know Benjamin well know that he doesn't like to sleep. At all. We were just starting to make some progress at nap time, and I'm worried that we'll be back at square one. Good thing God is sovereign, right?

Benjamin has had some crawling issues in the new helmet. When he moves from a sitting position to a crawling position, he usually ends up doing a face plant. When I tell him to try again, he just lays on his back, and looks at me like this is all my fault. I guess that's better that crying!
He's ridden in has car seat with it on, and that doesn't seem to effect him too much. He really is doing super!
Elizabeth and Micah are totally excited about Benjamin's new helmet. They want him to wear it all the time! There are moments where Benjamin gets a little frustrated with the helmet, and Elizabeth has been especially sweet with distracting him.

All in all, I would say day 1 is going much better than I was anticipating! I'm going to try to get his helmet decorated sometime today or tomorrow. I'll do that in my "free time"! Ha!