Tuesday, March 6, 2012

Bright Future

We are back from Dallas. Our appointment went GREAT! We met with the anthropologist and he said his measurements show a huge difference. We went to meet with Dr. Fearon and also met with a couple doctors one from Dublin and one from Brazil who are studying with him to learn from him. He asked about any concerns we had and I told him about the ridge I felt which is in the same place as the previous. He felt around and said ... "Oh I feel that too". Sigh of relief that I'm not crazy and yet oh oh what does that mean? He said its fine and just a suture. He had moved his skull around and this is just the lambdoid suture I am feeling. He said his head is going to be changing a lot over the next couple years and we should expect to feel lumps and bumps. He said it should fade and everything is fine.

He also said they ran genetic testing and it came back clear. Craniosynostosis was not a result of genetics. Great news so if we decide to expand our family we would run a low risk of our next child having cranio and Hudsons children (seems weird) should not have cranio. Hopefully this is all behind us!

He repeated several times that I have a perfectly NORMAL boy. He is cleared to play all sports, he can sky dive, ride a bike ... he is a normal boy. We brought some extra Chicks Dig Scars shirts for Dr. Fearon, Dr. Swift (our neurosurgeon), Cindy (his nurse) and asked him to get one to our PICU nurse who was just amazing. Cindy said she kept the Hudson Raven - Strength - Courage - Love bracelets we gave her which made me smile. Then we gave them all hugs and said see ya in a year! Dr. Fearon will be seeing him every year for the next 18 years. Good thing we love Dallas!

Now we are on to planning fun things like a photoshoot for Hudson (a non medical photoshoot!) And planning his first birthday! Ahhh that makes my eyes well up just thinking of how much we have to look forward to. And just being able to live in the moment. Right now we don't foresee any more surgeries. For now I am going to allow myself to breathe and try to let the fear of being too happy go. This all feels too good to be true, to happy and I don't want it to be taken away. But fear does just that. Its time to just be for awhile. Be happy, watch Hudson grow, watch him take his first steps, laugh at all his funny new words. For the first time in a LONG time I feel a sense of relief and just plain happy :)

"Let go of the past and go for the future. Go confidently in the direction of your dreams.
Live the life you imagined."

Thursday, March 1, 2012

Back to Dallas

It has been a loooonnnnggg time (so it seems) since my last post. For the first time in a long time we have just been enjoying our baby and life. I didn't even want to hear the word craniosynostosis. I just wanted to block it all out and MOVE ON.

Its been so long I couldn't even remember my password to get into the blog! So long since I thought about cranio it took me awhile to remember the craniokids.org site but it all came rushing back to me tonight as I was putting him to bed and felt the return of the ridge on his forehead. Time stopped for a brief second as I tried to find my breathe and tell myself my imagination is getting away with me. As I brushed my hand across his forehead again my heart sunk in my chest and all those feelings came pouring back to me. All those feelings I thought I had overcome and I could lock away to never feel again. It made me angry at cranio for doing this to him, to us! Haven't we been through enough? What test did we not pass? How much more can we handle?!

We always knew that someday his skull would want to reform the way it wanted to but to what degree was unknown. I didn't know when it would come back but wasn't thinking this soon! Logically I knew this would never be behind us completely. Dr. Fearon had told us his goal was to overcorrect enough to overcompensate for what his skull wants to do. But I am not always a logical person and tend to lean towards fantasy land and wanted to pretend we could just move on, put this behind us and be thankful for the life lesson. I haven't even had time to mail out all my thank you cards yet and we are already back here!

We already had an appointment set with Dr. Fearon for a follow up visit months ago. We will see him on Monday and Hudson will have his head measured again and the famous post op pics. I was already a bit torn on how to feel about the follow up visit. Surgery certainly didn't go as we thought it would. I can't even think right now about doing that ever again. I hope that when we see Dr. Fearon we can talk about what happened that day... as well as what to expect for the future. Although I am pretty sure for the future he is going to say its a wait and see game.

 On a positive note... Hudson is amazing!!! SO amazing. He is trying to walk, talk, climb and win over any pretty lady near him. He is such a sweet sweet cuddly little boy who forgives in a second and loves to laugh, play, give kisses, sing, dance and EAT... The spirit of a child is inspiring. He is going to be one on March 18th and we are trying to plan his first b-day. Many good things in his future. One of the nearest is his first taste at CAKE!!!