Skip to main content

Monday Update: 01/23/06

Well, today we met with the doctor to discuss Matt’s radiation treatment for his AVM. We are anxious to get started with this process, which we are confident will lead to peace of mind that his condition is remedied. The doctor, nurses, and office were very nice. The doctor explained a little more about the radiation treatment, and even took us back to show us the Cyberknife room and the machine itself. It was pretty amazing! It’s such a blessing that this incredible technology is available right here in Des Moines!!! He explained that the radiation actually scars the blood vessels within the AVM. The reason it takes time for the radiation therapy to be effective, is that it takes time for the scar tissue to grow. The scar tissue will then render the blood vessels useless, and blood will no longer flow through them…thereby removing the risk of a re-bleed. He explained that Matt will have preliminary brain scans that they will use to calculate the exact spot of the AVM. This will allow them to pinpoint it so they can attack it from hundreds of different angles. It looks like Matt’s treatment will probably be sometime in the next few weeks. The doctor said they are having their annual Cyberknife conference this week in California. He plans to take Matt’s case with him to discuss with other Cyberknife doctors, including the experts who developed the technique! We were pretty impressed to hear that! Overall, we both thought the consultation went well and are looking forward to completing it.

Last Thursday, Matt had a follow up exam with the Ophthalmologist. The results of that visit were good as well. The doctor continues to see good improvement in Matt’s vision, and slight improvement in his eye coordination. He reiterated that time is the ultimate healer here, that his eyes are healthy and in good shape, but that they can only do what the brain will tell them to do. So, he feels good that as everything else continues to improve, his eyes will too. In the meantime, Matt tolerates the tape on his glasses well and has adapted to reading with his left eye only. He’s read through ALL of the magazines that had accumulated while he was hospitalized and is now reading a book his dad gave him for Christmas! So, that’s good!

We also talked with Matt’s physical therapist last week about another option they feel may be beneficial to helping improve Matt’s walking. She recommended we check out this facility not too far from Des Moines which offers equine therapy (Hippotherapy) for patients. Apparently, there are many potential benefits to riding horses; the rhythmic motion of the horse as they walk helps to relax tight spastic muscles, sitting on the horse encourages patients to hold themselves up which strengthens neck and trunk muscles, riding also stretches hip and thigh muscles, and improves balance. By trying to maintain balance in response to a horse's motion, riders tone, stretch and strengthen the same muscle groups they would use in walking, sitting and reaching on their own. This all sounds good and interesting to us, so we’re going to check it out. Matt is up for anything that can potentially help improve his balance and walking. His physical therapist thought this might be something Matt could do once a week, to help with his walking…so, we’ll see what comes of it.

Matt has been walking with a walker these days in pt. His therapist thinks he’s walking better and better each week and has seen marked improvement in his balance and walking since he started seeing her. (We were both excited to hear that) This past weekend, she sent the walker home with us. It was hard to use in the house, as it is too wide to go through the bedroom and bathroom doors…but it was helpful in longer walks, like from the bottom of the stairs to the recliner etc. So, I think we may get an order for a walker to have here at home too. Matt isn’t convinced that he’s walking better with it…but all I know is that I have to do MUCH less work when we use the walker…so, I’m a bit more convinced than Matt is right now.

This weekend we had some friends over to watch movies and hang out. It was fun to do something like we always used to. My mom is back in IA for a week, visiting family and friends. So, Sunday we ventured out of town for the first time and went up to my sister’s house for the day. We enjoyed the afternoon and evening playing with our niece and visiting with my family. I helped my sister organize things in the nursery as they prepare for their new baby. It was a good day. The trip out and back went well, and we managed our first outing to someone else’s house!!

Comments

Popular posts from this blog

Carrie Anne - The Beginning of the Story

So, I’ve been trying to sort out how to start this story. It’s been difficult to articulate. Difficult to pick which details to share, and which to hold close. But it’s a story too good, too beautiful, not to share – so here goes! When Matt and I first became parents, we thought our family was complete. We envisioned raising Ethan surrounded by loving friends and family – just the two of us. Given all that we had gone through to finally become parents, we felt content with just the one child. The most adorable boy in the whole wide world. Our Ethan was the apple of our eyes – the most amazing gift. We marveled at all of his accomplishments, soaked up all his love and personality, and celebrated the joy of parenthood at every exhausting, wonderful turn. Along the way, we’ve built a strong and loving relationship with Ethan’s birthmother. We visit yearly, and stay in close contact with pictures, emails, and texts. I have attempted to describe my feelings for her many times over the

I may as well tell you...

I had a miscarriage. I’ve debated for weeks whether or not to acknowledge it publicly. It’s such a personal thing…and this is such a public medium. But a few months have gone by and I’m no closer to feeling ok about it and truly nothing else on my mind really compares, so here I am, letting the world in on my secret. Over the past few weeks I’ve found very little comfort in the fact that only a small handful of people know about the miscarriage. It became nearly unbearable this week, during all our wonderful family Christmas celebrations. Being surrounded by so many people who love me and support me and have no idea how my heart has been broken – it’s a lonely place to be. Not that I would want them all to bombard me with pity or questions or sad looks in their eyes – I realize I can’t have it both ways. But a little acknowledgement goes a long way and I simply can’t ignore or deny the fact that something major happened in my life and impacted me, impacts me still.   It was a warm

WE'RE ADOPTING!!

Bah! I said it…er wrote it…out loud. There it is, in black and white for the world to see. (Pause for a drink and a breath) Matt and I are in the very early stages of planning to adopt. We have had a few meetings with an adoption agency, we are gathering the necessary information, and we are making plans to get this ball officially rolling SOON. It has been a very long and winding road to get us to this point, and honestly I never thought we’d get here. Adoption isn’t what we started out hoping for. It isn’t where we thought we’d end up. But here we are – gearing up for what will surely be a life-changing experience for us with hearts full of hope and excitement. The topic of adoption has come up in the past, but we quickly dismissed it for one reason or another. Matt and I have had our fair share of insecurities about whether or not adoption would be a good option for us. Who would look at our family profile and pick us?? It was a burning question that we probably still have