Ugggghhhh

I have been sick for a week. I have an infection in my G-tube. The antibiotics suck! I can't wait until I feel better. Thanks to my fam for being so patient and loving.

Camel's Back

Truman hiked to the top of Camel's Back today!!!! Well...okay so Tom pushed him up but at least we got to the top. He was so excited to see the city from a different view. We take for granted the little things in life and forget that some people are thrilled when they are able to see those little things as GIANT milestones.

Assistive Technology and our World

So we are going on 3 years now trying to find a communication system for Truman. We have tried the Dynavox, the Tobii, and various amounts of switches. Truman loves his switch toys and communicates very well with large button switches. We are still a very long way away from finding a system that he can use with ease and function. His muscular control is still limiting which reduces his accuracy and success.
Truman also does very well when he is motivated by his therapy dogs Ovelle and Prairie at school.

I am constantly amazed at how much information is out there and how expensive it is. We do not have any switch buttons or recordable switches at home but we are making due. We have figured out how to communicate the best we can and give Truman what he needs.

Hopefully within the near future we will be able to make more progress and obtain some of the basic switches.

I am the Child

I love this story. It does not define us but it certainly puts in words the way we feel sometimes. Thank you to who ever wrote this.

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of--I see that as well. I am aware of much--whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being. Sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards--great strides in development that you can credit yourself, I do not give you understanding as you know it.

What I give you is so much more valuable--I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The worlds seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh, I've dropped my fork again. I am dependent on you in these ways. My gift is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in SIMPLE things. I am not burdened as you are with the strifes and conflicts of a more complicates life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you uncondontional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

-Author Unknow-

Baclofen Pump Surgery

After much thought, prayers, advice and consideration we have decided to go forth with this method of treatment for Truman. It is called an Intrathecal Baclofen Pump. It is used to treat patients with severe muscular disorders. A pump is surgically inserted in the abdomen and a catheter is inserted and connected to the spine. The placement of the catheter is determined by the area in which the treatment will be. In Truman's case it was placed just above the neck to deliver medication to treat the muscles below. Because Truman has severe spacticity ( tightness and constantly contracted muscles) this procedure has been recommended to better treat him. The pump is roughly the size of hockey puck and is filled with Baclofen (a muscle relaxer) that is strategically dispersed into his spinal fluid that delivers the medication directly to the nerves that control his muscles. He was getting Botox therapy in his Biceps, Triceps, Calves and Inner Thighs to help reduce his tone. This would happen every 3 months and painful, yet effective. The pump will now replace the Botox injections Yay!
Surgery went as well as could be expected. His Orthopaedic Surgeon, Dr. Jeffrey Shilt, did the surgery. He is very highly recommended and a great surgeon. There are only 2 Pediatric Orthopedic Surgeons in the Treasure Valley. Dr. Shilt is great. The surgery took place at St. Alphonsus, not my first choice in the beginning, but has turned out to be a great choice. The staff and doctors here are amazing. We are still here at the hopsital on the 5th floor in the peds unit. Very nice and spacious.
Truman has an incision on his abdomen, just opposite of his feeding tube button and then a small hole in his lower back. His pain is being managed well and he is comfortable. He slept pretty well all night and is now trying to eat and digest. Hopefully we will be able to go home today but I am not counting on it.
Thanks to all of our friends and family who have wished him well and sent their love. It has made this more bearable.