A slight glimmer of hope....

Today Gabe woke up with very minimal pain. Yeah us! I did give him Loratab around 11pm, but nothing after that. He was very good the majority of the day with the exception of when he was lying down to watch a movie. Gabe's shunt does not drain while he is down. So his pressure got high enough that he was uncomfortable. His pain was still higher than when he woke up when he went to bed. So this is a step in the right direction. Lets hope he keeps it up!

What kind of Mommy am I?

Today, due to an infection in the wires that were being used to distract Gabe's head, he had to have his wires removed. The procedure is done, in the office with no sedating meds on board. He already has pain because of the infection and how we are going to use hemostats and wire cutters and cut back the wire on both sides of his head. Then you attach a hemo to each remaining wire protruding from his head and you PULL one then the other. Now, Gabe is probably one of the toughest kids I know, but dang it...He cried. It was rather savage to watch and probably more savage to live through. But he did. The areas did not bleed and the areas were left open to allow any drainage from the puncture wounds. We put some ointment on them and we were on our way to the Orthotist to have some final phase work done on this helmet.

By the time we walked out of the building, across the street and to our car in the parking garage he was bleeding from one of the puncture wounds. I rummage through my bag to find something to give him to hold pressure on this wound and I have NO tissues or napkins. All I find in my purse is a tampon and an always ultrathin overnight. I unwrap the pad and make it where it will not stick to his hand and give it to him to hold on his wound.

Me: Here Gabe. Hold this up to your head

Darren: Did you give him a MAXI PAD to put on his head?

Me: Umm, yes. I did not want him to bleed all over his shirt and ruin it...

Darren: Well, I hope this is the one and only time he can say he used a maxi pad...

When we arrived at the Orthotist office we all get out of the car. We are almost to the front door and I notice that Gabe still has the pad held to his head.

Me: Buddy, we need to put that back into the car.

Gabe: Why? My head is bleeding...

Me: If you really thought that people stared at you when you had your helmet and wires...they are going to stare and point more now when you have a pad held to the side of your head.

Gabe: Oh, Can I get a tissue here?

Me: Umm, Yes you can Buddy!

What kind of Mommy does not have a napkin or tissue shoved somewhere in her car? Poor Kid...

Gabe 1 week 6 days post op

Gabe 5 weeks 6 days post op

Gabe 6/24/09-Birds Eye View

Gabe 5w6d post op-You can see that he is more full in the temple region. Yeah! Not as much as we would have liked, but this will have to do...for now...

The Conference....

There are so many things that I would love to share with you about the conference, but I won't completely bore you all. Dr. Frim was speaking about neuropsych issues. He spoke about a study of children/adults that were 1 year post op and were asked to take a neuropsych study. Gabe was in those numbers. It was very hard to hear that your child is a statistic. I mean, we KNOW our children are statistics, but it is very easy to not see the revelance of their "stat" until you hear it spoken about at a conference. Frim also spoke about Failed Chiari Decompressions. (That would also be Gabe) and about how 4-5% of his chiari decompressions develop PTC. That is my son... My son is one of the 4-5%. While I KNEW that, or some odd reason, hearing it spoken about at the conference was just hard. However, the hardest point that Dr. Frim brought up was that the long term prognosis was not known for these kids. However it was noted that Spinal Cord and Brain Fatigue has been seen to happen in these kids as they get older and that spinal cord function deteriorates sooner (than in none CM/SM) kids.

You hear that and you look around the room and you see 20-somethings in wheelchairs and other adults in wheelchairs and you HOPE that is not your kid. Then you feel HORRIBLE for thinking that way. Friday afternoon when we walked out of that conference session Kristen, Cindy, Jenni, Kirk and myself just sort of looked at each other. I believe the phrase may had been, "Wow!", "My brain hurts", and heavy sighs. Jenni and Kirk mentally and emotionally could take no more, and they had to leave. I understand. I wanted to also.

I can tell you without a doubt that there was a lot of fear in us at that moment, but I think that there was more heartbreak. I believe at that moment while we always knew that our kids were not typical it really sunk completely in for the first time....This is not a ride that we get off. We will always been on this ride.

I cried Friday. In the hotel lobby waiting for Cindy to get back to the hotel so we could go to dinner. Kristen had never seen me cry. "You are always a rock". I was not that night. Jenni and Kirk had a rough time on the way home. Kristen was quite. Cindy, also.

For the rest of the conference there was a dark undertone. But Kristen and I plugged away and attended the rest of the seminars. I still have a sense of sadness when I look at my little ones.

Kristen, Cindy, Jenni and Kirk-THANK YOU for the great time!!! Cindy-you and your kids remain in our thoughts as Carson's decompression date moves closer. Jenni and Kirk-My heart breaks that you did not have better results from the MRI. We will keep you guy and Jacob in our thoughts and prayers. Kristen-you and Nic are in my heart. I will try to come and see you while you are in Chicago for Nic's revision.

Random Acts of Kindness...

In less than 48 hours I have been the recipient of 2 random acts of kindness. Monday, after my bad dealings with a crabby radiology tech I went to exit the parking garage and realized that I was out of parking stickers. ACK! So I dug a $20 out of my purse and gave it to the parking attendant. Then entire time thinking, "Great, I get to pay $10 for being here 15 minutes!" I never said anything to the attendant and when I went to reach for my change, he handed me back my $20. I said, "But I..." and he stopped me and said, "Don't worry. You just looked like you needed something nice to happen today. You have a great day!" Which his kindness meant so much to me.

Today I headed to the grocery store. Fayeth was in the cart, Lindsay and Hannah were holding hands with Gabe and were on either side of him to prevent him from bumping into anyone. His helmet bars stick out and sometimes he bumps into things. And those bars hurt not only the person he bumps into, but also himself. We had a few people look and stare, but nothing horrible. The shift manager came up to Gabe and said, "Hey man! That is a really awesome helmet you have there! Great Colors!" and gave Gabe a Hi-5. Then he told the girls, "I think it is really great how you are looking after your brother. You are a great family that takes care of each other!" I thanked him and kept moving. (On a side note-Gabe is not feeling well today. Headpain is high, he is getting a cold, and a storm front is moving in so I knew I had limited time. I also had forgotten pain meds) We continue about our business when a family of 5 (2 parents, 3 kids probably 16-13-10 in age) start staring at Gabe. I ignored it. Then I notice that they are pointing, I again ignore it. I think look up and they are pointing. I decided that the best course of action was to change aisles. Thinking that Gabe was not paying attention to them, I figured that it was best not to make any comment to the people.

In the next aisle, there they are again. Talking, pointing staring and trying to decide between them what was the best answer for why Gabe would be like he is. I was getting ready to change aisles again and while we were walking into the new aisle Gabe says, "They were talking, pointing and staring at me! That makes me feel bad." I simply said to him, "I know it does buddy, but sometimes people are just rude and ignorant and cannot help themselves. They are still in the other aisle and we are almost done. We will hurry!" That said and these people followed us into the next aisle. They were very loud and basically saying, "I cannot believe she would bring her child out to the store looking like that. He could scare other children!" Gabe heard this and when I turned around he was in tears. I got down to his level and looked him in the eyes and told him, "Gabe, I love you. You are the strongest and most brave little boy that I have every known. God chose this path for us for a reason. He has also scattered it with stupid people. Normally Buddy we should educate people, but this time it is not possible. I cannot help the fact that these people are stupid and moron and compassionless. You cannot teach compassion. However you can teach tact. I am sorry that you are going through this right now but the only excuse I can give you are that they are asses. They are too stupid to take a few minutes to be brave enough to ask us why you are wearing you helmet, and we would take our time to answer their questions. But they allowed ignorance to lead their behavior. It is RUDE to point and stare." I had a few things left on my list but by then decided that it was time to go.

In check out the kids were helping me load the conveyor and I took a few moments to praise their exceptional behavior at the store. The lady in front of me praised me for taking the time to praise my children. She said that parents never take the time to tell their kids how good they are being, but how bad they are being. I thanked her. As I was finishing up loading my cart, the shift manager that had given Gabe a hi-5 earlier, came up to me and handed me a bag of "snacks" and told me that he wanted to thank the kids for being so wonderful to their brother and helping him out and taking such good care of him. He told us that they were so well behaved and that it just touched him deeply to see their love of each other. I thanked him again, and told him that it was nice to hear the good things.

So, I am asking everyone who reads here to pay it forward. Do something or say something kind to someone today. The kind words DO make a difference!

Chiari/Syringomyelia Conference 2009

Well people, for the first time since May 2001 I will be travelling WITHOUT CHILDREN!!!! I am going to the ASAP Conference in Madison, Wisconsin. In the last 12 hours my anxiety about leaving the kids, especially Gabe, have come to full force. Gabe is 3 weeks post op today and we are manually distracting his head and I am expecting my (poor) mom to do this. I know she can, but it is still scary to release this control. (Yeah, I have control issues. I can embrace that and own it)

The best part of this trip, minus having to share my bed with FAYETH, is that I get to spend time with some of my favorite Chiari Moms. (Just wait until camp, THAT is a lot of fun, 23 of my favorite Chiari Families!!!!) Kristen has flown in from OK and I will pick her up in Mt. Prospect this afternoon. Our friend Tommi had to cancel due to her daughters surgical wound infection. Cindy will be coming along with her friend Jenni (whom I have yet to meet) Kristen and I are sharing a room. No Kids. No listening to "Mommy, Mommy Mommy!"

I will be back sometime on Sunday. We have a FAB dinner at the RMH on Sunday so I will be stopping there to help with Dinner before we come home. Have a great weekend ladies!!!

Craniofacial Distraction Osteogenesis

The procedure in which we are going about making Gabe's head bigger is called Craniofacial Distraction Osteogenesis. In generic terms they go in, crack his head like an egg, use sutures to loosely hold the fracture bones in place, attach wires to the fractured bones and pull them out of the skin. Those wires are then attached to a helmet. (in our case) You then manually make the head larger over the course of time. By manually, I mean, *I* (mommy) turn the key device twice a day. We just started doing that today. So, I am not completely sure what the pain scale will be in this. We are also allowing the brain to distract a section of bone over the top of Gabe's parasagittal sinus itself.

Wires coming out of the skin on the skull, attached to a spring that will provide a constant tension of "250" at all times (this is an orthodontic spring) that is now attached to a spring ring clasp. (It was attached to a fishing swivel)

We are already seeing some improvements:

Front of head:

Day of Surgery 6/24/09

2 weeks 2 days post op

2 weeks 6 days.

The forhead is much more round as are the temples!

More to come later!

Craniosynostosis, Take 3!

Some pics from Gabe's 3rd Cranial Expansion:

Our view from 3rd floor surgery holding....

See the story here.

If you want to read the story behind the pictures go here.

Gabe's helmet lost the fight with Hannah's head...