Saturday, March 22, 2008

Turtle Helmet

A new helmet design to match his Easter outfit.

Lollipop



Saturday, March 15, 2008

Spring Break?

Not for the helmet baby! Thursday morning we left bright and early... scratch that... at 6:45 am when it was still dark outside, and headed to Austin for a helmet check. It was another uneventful visit to the orthotist, had more of the helmet shaved out, and got a great report. Praise God! Benjamin was super sweet to everyone there, and did lots of waving and kiss blowing.

After leaving Austin, we headed north to Kansas to spend our spring break with my family. We're having a great time, and Benjamin has enjoyed showing of his, "new head" (as I like to call it).

Saturday, March 08, 2008

Mostly Irish

Helmet says, "Kiss me, I'm mostly Irish."



Saturday, March 01, 2008

Three Months later

On Monday, it will be three months from when Benjamin had his surgery. We desire to tell everyone of the wonderful goodness God has shown our family, for the protection and healing He has given Benjamin, of the love and support we have received from family and friends, and of the covenant family who has blessed us. So this is my feeble attempt to share with others the great and mighty hand of God, as we have seen it in the life of Benjamin. Please praise God with me for all he has done!

Friday, February 29, 2008

"lucky"

I just finished reading a friends blog where she vented about some of the comments she receives from people when talking about the premature birth of her sons. In no way have I had to deal with all that she and her boys have been through. But I could relate to what she was saying.

In conversations about Benjamin, I often hear, "Oh, you're so lucky to have a baby with a helmet! I'll bet every mother wishes her baby had a helmet."

Here are my thoughts (and vent) in response to that.

Are you kidding me?!?!

Sure, the helmet does give me a certain peace of mind now that Benjamin is becoming mobile. But I wouldn't wish to go through this again.

Yes, I'm sure every mother wishes she had to make major medical decision like we did. We were lucky to get to sign tons of paper work listing all the possible risks that our son could encounter during surgery. It was a ton of fun to get to sit in a waiting room for four hours, knowing that my baby was having having major surgery, losing blood, having a transfusion, and all the while I wasn't with him. He woke up to strangers, not me.

We were lucky to spend three full days in a hospital, two hours away from our other children and our church family, getting about three hours of sleep a night.

We are lucky to have made almost a dozen trip to Austin in a three month period. We are lucky to have to spend the money on food, gas, and of course medical bills.

I'm sure every mother wishes she could go through all that, just to have the reassurance that a helmet might bring.

I know people don't intend their comments to come across that way. I've often thought, "What would I say to a mom or dad if I saw them with a helmeted child, and didn't know why he was wearing it?" And I don't know what I would say. So, I would say nothing. And sometimes, I wish strangers would just say nothing too.

I don't consider myself, or Benjamin to be lucky. However, we are very blessed. We are blessed to have caught his craniosynistosis when we did. We were blessed to see a wonderful doctor, and be in a wonderful hospital. We are blessed with family and friends who have surrounded us with their love and prayers. And most of all, we are blessed with the daily grace to walk down this road and continue on this journey. It is truly amazing the grace that we have been showered with!

You're right Lindsey, that does feel better. :-) Until the next comment.

Monday, February 25, 2008

Look familiar?

Stolen from Mr. Matt's blog.
Isaiah 59:17 He put on righteousness as his breastplate, and the HELMET of salvation on his head; he put on the garments of vengeance and wrapped himself in zeal as in a cloak.

1 Thessalonians 5:8 But since we belong to the day, let us be self-controlled, putting on faith and love as a breastplate, and the hope of salvation as a HELMET.

Thursday, February 21, 2008

Melmet Check

Just for the record, this is a happy face. A very happy face! And if you click on it, you can see a bigger version of his new teeth. Usually babies get their front two bottom teeth first. Benjamin got the tooth next to the front two bottom teeth first. The two bottom teeth are making their appearance now, as is one of the top ones.

This picture was taken this morning as we were loading up to head to Austin for a "melmet check" (as Micah calls it). Before I get to the details of the trip, the doctor's report was another good one. Benjamin's head has continued to get wider, and the circumference is bigger. The orthotist is very pleased!

You know how you have trips where lots of little things go wrong making it feel like everything is going wrong? That's kinda how today was. My friend Ashlee had graciously offered to ride with us. But her sweet daughter got sick. Normally I wouldn't care, but it seems that several of the kiddos in our church family have been sick. So far, we've avoided it so I thought it best to just go on my own. Curtis thought that the idea was pure craziness, and took the day off to come with me.

Before we had even started this morning, we found out the DVD player for the van was broken. The Elizabeth's Leap Pad started acting up. The boys were supposed to sleep on the way to Austin, but didn't. They did quickly fall asleep on the way to lunch though, making lunch a challenge. On the ride home, the baby did sleep, but somehow Micah stayed awake. Elizabeth feel sound asleep when we were about 15 minutes from the house.

So, Benjamin is already in bed, Micah is about to go down, and Elizabeth will probably be up till 10:00, which will be about the time Ben wakes up. Sigh. Good thing we love these crazy kids of ours! Oh, and did I mention that Micah has been up since 5:30 am?

All that aside, we are so thankful for how well Benjamin is going. Praise God for how smoothly things are going right now for him, and for how well his little head is healing. God is good!

"On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:10-11
"I will give thanks to the LORD with my whole heart;
I will recount all of your wonderful deeds.
I will be glad and exult in you;
I will sing praise to your name, O Most High.
But the LORD sits enthroned forever;
he has established his throne for justice,
and he judges the world with righteousness;
he judges the peoples with uprightness.
The LORD is a stronghold for the oppressed,
a stronghold in times of trouble.
And those who know your name put their trust in you,
for you, O LORD, have not forsaken those who seek you.
Sing praises to the LORD,
who sits enthroned in Zion!
Tell among the peoples his deeds!"
Psalm 9:1-2 and 7-11

Friday, February 15, 2008

Grace

So often, as a Christian raised in a Christian home, I quote scripture without really letting the full weight of what is being said sink in. For example:

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

During the time leading up to Benjamin's surgery, and in the days following, I kept telling myself, "All this is for my good and HIS glory." But I struggled to really believe it. How could all this work out for my good, the good of my husband, the good of my other children and most of all, the good of Benjamin? Nothing that was happening seemed good! It was far from good. I had to hand over my six month old son, and watch as strangers carried him down a hallway to have a major surgery where he would have his head cut open, and part of his skull removed. That didn't sound good to me. That moment when I would have to hand Benjamin to the doctor was one that I dreaded. When I tried to think about it, I couldn't. I literally couldn't handle it.

People kept asking me how I was doing, how I was holding up. And truthfully, I was shocked at how well I was doing. In the back of my mind though, I was a wreck. The thought of surgery, of handing my baby over, terrified me.

The day before surgery was providentially a Sunday. I received more hugs that day! And I kept hearing, "It's going to be okay." "We'll be praying." And I knew those words to be true. I kept telling myself, "For my good and HIS glory." Then a sweet elder in our church, Mr. Moehlman, came up to me. He asked me how I was doing, and I replied, "Right now, I'm okay." And he told me something that helped me through. "God gives us daily grace. Don't worry about tomorrow, because when it gets here, you will have the grace to get through it." Again, words I knew to be true, but words that weren't quite sinking in.

At just after midnight, the day of surgery, I nursed Benjamin for the last time before his surgery. I was dreading him waking up, hungry and wanting to nurse, knowing that I wouldn't be able to nurse him. Then, at about 4am, he woke up. And surprise, surprise, God gave me the grace to handle Benjamin's sadness and hunger. After Curtis and I got him back to sleep, I just laid in bed, thanking God for that grace, and praying that I would continue to receive it.

While we were in the waiting room with Benjamin I couldn't hold him. Poor guy was so hungry, and just wanted to eat! And at six month old, there was no explaining why Mommy couldn't feed him. So Curtis held him. When they took us back to the prep room, Benjamin kept reaching for me, crying to be fed. It was heartbreaking! The thought of handing Benjamin over to the doctor kept coming to mind. I was so afraid that I wouldn't get to hold my baby one more time before that moment. Not knowing what else to do, I started crying. But I didn't lose it like I thought I would. Again, God's amazing grace!

As Curtis and I were putting Benjamin in his hospital gown, he kept reaching for me, and I finally took him, not knowing how well he would do, being with me but not being able to eat. I held him, sang to him, and we prayed over him. And he fell asleep. Nothing but God's wonderful grace!!

The doctors came, and I handed Benjamin over to them, putting him in their care, but more importantly, I again handed my son over to his Heavenly Father. And that was it. The worst moment was over, and I was still standing.

God's grace and peace continued to wash over us through out the day. The moments I had dreaded passed because of the loving care of my Father. 24 hours after surgery, and I hadn't lost it! I say this not to boast in my ability, but in the power of my Savior! Today, when I think back over the day of Benjamin's surgery, it breaks my heart. I can't look at pictures from his time in the hospital without being brough to tears. God gave me the grace that I needed for that day, and for those moments.

"No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:37-39

Thursday, February 07, 2008

Because it's been awhile.

Nothing much happening here. Thank goodness! We needed some "nothing happening" time.

Benjamin did have a helmet appointment on Monday morning. Everything looked great! The doctor hadn't seen Benjamin since he had his initial helmet fitting in January, and was very pleased with how well Benjamin's head is looking. The back of his head is just about perfect, so we are now working on the forehead area. Even though there is still room to improve, we are so thrilled with how well Benjamin is doing! Praise God!

We don't go back to Austin till the 21st, which is still two weeks away! It's nice to be on a more spaced out schedule.

Thank you to everyone who is continuing to lift Benjamin up in prayer. Your prayers are felt, and encourage us greatly! Please continue to pray that his recovery would go as well as it has so far.

Friday, February 01, 2008

New helmet design

"My Life is a Zoo!"
front
back

Monday, January 28, 2008

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.

Thursday, January 24, 2008

Construction a HEAD!

My onsie says: Construction Ahead


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


Wednesday, January 23, 2008

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!

Thursday, January 17, 2008

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!

Tuesday, January 15, 2008

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!

Monday, January 14, 2008

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.

Friday, January 11, 2008

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!