Bells and Whistles

Last night as Tom was hooking Tru up to his feeding tube the pump would not stop beeping. To back up a little bit...when we put Truman to bed at night we attach his feeding tube to him so we do not interupt his sleep when we plug him in to the pump nightly. Tom came in to our room after hooking him and made a comment about how the pump continually beeps an error alarm sometimes ( after two years of nightly feeding tube hook ups we still havent mastered the pump)...during the beeping Truman continues to sleep peacefully as if there were no interuptions or outside world. He is not disturbed in the least. I thought to myself...I am immediately awakened at the slightest noise anywhere. I am not sure if that is my motherly instinct or tghe fact that I am a light sleeper....the two could be connected and probably are. Anyway, back to the point...I also thought to myself that little Truman has been sleeping through alarms and pumps and noise since he was born. I often wonder how sad and abnormal it is for a child to be so used to alrams and pumps and rustling that he can sleep right through it. Maybe it is "normal" for him and I should stop worrying myself about things I can not change. (the funny part is...he can't seem to stay asleep when I want to take a nap) Is that divine intervention or just motherhood in general? I am going to step out on a limb and guess that it is motherhood.

Truman was having a seizure. This is a typical seizure for Truman. He has them about 2 or 3 times a month. They are considered grande mal seizures. Truman aslo has focal seizures and starring seizures. The most common seizures he has are focal seizures which he has several throughout each day.

Drinking from a Straw

We were at dinner a few weeks ago and thought we would try giving Truman a drink of water from a straw ( we left his cup at home) He totally did it!!!! We have been working on that for about 6 months now. It is the little things that excite us!

My Daily Schedule- Trumans POV

What a busy day I have. Mondays I usually get up and help my mom take Boston and Carson to school. She needs lots of help so I try really hard to do that. I try not make a stinky in my diaper right before we leave but sometimes it is really hard. After we drop the boys off at school it is off to feeding therapy with Jen. I love her. She is very funny and makes me laugh a lot. We start out with some stretching so that my muscles are ready to work. She likes to massage my mouth and tongue and gets really excited when I can swallow within 1 to 2 seconds. I got to practice sucking from a straw. I did it. Duh! It's not rocket science...it is just hard for my body to do what my brain tells it to do.

After feeding therapy we go home to watch some PBS. I love Clifford. Playing with my mom is fun too. My babysitter Brenda gets to come play with me all day. Except for when I go to JumpSTART Preschool. I get to play with my friends and teachers. I think they think I am working but really I just like to play.

I am going to go to bed now because I have to get up in the morning and go to preschool at Taft and then back to JumpSTART. I love school. I miss my mom a lot though. I think she misses me too beacause all she does is give me kisses and hugs and makes me talk all the time. She has to work on Tuesdays so I get to play with Brenda again. Woohoo!

Scoliosis

Today we learned that Truman has Scoliosis. His spine is curved at 30 degrees. The orthopedic surgeon explained to me that children with cerebral palsy are at a greater risk of developing scoliosis. Usually at this age it is not this far progressed but as Truman would have it he doesn't typically play by the rules. The exact treatments at this point are undecided. It looks like he will most likely have to wear a brace at night and an intrethecal baclofen pump will be inserted into his abdomen. An intrathecal Baclofen pump is a pump that is roughlty the size of a hockey puck that will deliver a the medicine Baclofen. Baclofen is a muscle relaxant medicine commonly used to decrease spasticity related to some types of Cerebral Palsy. Spasticity is a motor disorder characterized by tight or stiff muscles that might interfere with voluntary muscle movements. Baclofen can be taken orally or delivered into the intrathecal space. The intrathecal space contains the cerebrospinal fluid, the fluid surrounding the spinal cord and nerve roots. Oral baclofen causes side effects that might limit its usefulness. Of the oral baclofen delivered throughout the body, only a small portion goes to the spinal fluid where it is needed to work.
An intrathecal delivery system, which provides the baclofen right to the target site in the spinal cord, is an effective way to deliver the medicine.. .so this therapy combined with a back brace will hopefully at least get us through about 7 more years until he is big enough to tolerate spinal surgery. Truman's orthopedic surgeon and Physical medicine doctor have conflicting opinions about the pump in Truman. His is still very small and his body may reject it. So we will see what the verdict is as soon as they conference.
(The definitions of medications and pump explanation were found on www.clevelanclinic.org)

Meeting Baby Boy Tueller

I came out of surgery with my sister by my side along with Tom and Boston and Carson. They comforted me as I did them. When I was released from surgery recovery I was wheeled into a secret garden, hidden from the outside world...the Saint Luke's Newborn Intensive Care Unit. That is where I met my fragile newborn infant. I am not completely clear as to what emotions I felt at that moment or what I saw, but I can recall the fear and anxiety and terror. My baby boy looked like he belonged is a science fiction movie. His skin was transparent, he could not breathe on his own and he was attached to a "gazillion" wires and tubes. At this point he was inside an open bassinet that had a heater in it so that the doctors and nurses could continue to work on him and get him situated. He did not look real. I could see his chest rising and falling rapidly with the assistance of an oscillator. We had no name picked out. It would take about a week to come up with a name that seemed for this baby. I don't think I stayed very long.

Welcome Baby Boy Tueller

The last night that my baby and I were as one, was August 4, 2005. It was about 1:00 in the morning. I kept feeling like I needed to go to the bathroom, but as I said in my previous blog...I couldn't do it alone. I called the nurses and they helped get the bathroom to relieve the pressure of needing to go. It was very difficult, every time I went I had to turn the water on so I could concentrate and make my body go. Well, that was it. My water broke. My fears were coming true. I called for the nurses and they immediately helped me into the my bed alerted labor and delivery and tried to rush me over there (around the corner and down the hall) I say trying because I was still plugged in to the wall with all my cords and wires and iv's and monitors. It was like I was a dog tied to a chain, chasing the mail man, only to be stopped and yanked back as the chain ran out of length. Oooops.
We made it to the delivery room, my ob was on vacation of course, so his partner on-call, was now in route to meet a patient he didn't know, with no history of high-risk pregnancies. Baby boy Tueller must have thought he was super man, because he decided to swim out of his comfy home head first with one arm above his head....just like superman flying through the sky. Vaginal delivery was not an option for us if he was to enter this world alive so I was immediately prepped for an emergency c-section. This was the first time I had a c-section delivery. I was drugged up and told to curl into a tight ball and turn on to my side. What!!!??? did you say? I was alone with a sea of people I had never seen, staring at my ailing body, lights shining in my eyes and some strange guy holding my hand and telling me it was all going to be okay. I was asked if there was anyone I wanted to call....it was 1:00 in the morning...I didn't want to wake anyone up. My husband was at home with the kids...all cozy and sleeping like angels....my in-laws were in Missouri visiting my sister in law who just gave birth to her first daughter...and my mom lived in Melba. So I called my little sister who lives in Nampa and who made it to me in 15 minutes. I cant remember if she made in time for the delivery. I was given an epidural and my son was pulled back through the birth canal (even with an epidural it was the most painful delivery I have ever experienced) and entered the room through a cut in my abdomen. Baby Boy Truman was born, not breathing, and nearly dead at 1 pound 10 ounces or in medical measurements 758 grams, and 10 inches long. I was terrified!!!

In the Beginning

I would first like to introduce myself. My name is Sarah and I am the very lucky mother of three amazing boys. I have decided to do create this blog for two major reasons. The first is to reach and connect with other families who are expereiencing life while raising a person with disabilities. I really don't like to use that label but I feel it is the only one people trully understand. It is a very broad term and I t hink that it could apply to everyone on this planet. Second, I am using this as a pathway torwards coping with raising a person with a disability. Selfish? Yes and no. Real? Definitely yes! There are sometimes emotions and feelings that creep into our heads that we are told to ignore or ashamed to admit. Well, frankly, I am tired. Tired of running, tired of forgetting and ready to live with this blessing in all of its infinite wonder.

Trumans has two brothers, Boston (11) and Carson (9, two dogs, Lulu a cute Shi Tsu and Tucker a big yellow lab who just passed away in August and a wonderful father named Tom, and then me. We live in a moderate house in Boise, Idaho.

After the birth of our two older sons we decided (after 3 years of discussion) to have one more child. I was 28 years and in fairly good health and shape. In the springof 2005 we were excited to learn that we would be welcoming our third baby boy into our lives in November. My pregnancy was progressing along as "normal" until friday, the 29th day of July. I felt very crampy and looked as though there were 10 babies growing inside me. I called my doctor and was told to drink a can of caffenaited soda to make sure the baby was still moving. I could not feel a thing. I had my mom take me to the hospital. I was taken to the Labor and Delivery unit where I was asked if I really thought there was only one baby in there. After a quick ultrasound, and no comment from the nurse (only that she was going to call my doctor) I started to feel my whole world closing in around me. The white room became very small and all I could do was look at my tiny little peanut swimming in a sea of amniotic fluid. All alone. The doctor quickly rushed across the street to admit this 28 year old, mother of two, whom he barely new. I was put in a wheel chair and taken to a delivery room. At this point the fluid would need to be drained and I was given several medications, hooked up to IV's and told I was not going to leave my new home until I delivered my baby...no prospective date. I was given a steroid to help the baby develop his lungs faster,in the event I delivered him 15 weeks before he was "scheduled" to arrive. I was put on a continues drip of magnesium to relax my uterus and slow down the contractions. Later that evening, around 11:00pm, my OB came in to release the fluid. This process is like that of an amniocentesis. A giant (giant to me) needle is inserted into the abdomen, directly into the amniotic sac. I am watching this all take place on the monitor. An approximate total of 4 liters (equivalent to 1 gallon of milk) was removed. I was given a higher dose of magnesium and transfered to the antepartum unit...where I would find residence (not refuge) for the duration of my pregnancy. Let me tell you a little bit about magnesium...it is awefull. I was on such a high dose that I could not even take myself to the bathroom without my legs collapsing out from underneath me. I had no control over my muscles. I could not tell if I was chewing when it was time to eat (and if anyone knows meI like to eat), I could barely raise my arms to read, let alone focus on the words I was reading, see the television clearly or speak without slurring my speech. I was settling in to the realization that this could be my new home for the next 3 months. That was going to be expensive. I have very wonderful friends and family who came to vist me and comfort me the best that they knew how. I will be eternally grateful for that. But, when everyone was home in there beds, or working or living, I was alone. Alone and scared and all I could do was survive. I was taught, whether I wanted to or not, how to survive. You push your self aside and get throught it day by day. One long lonely minute at a time. It worked, we got through it and in reality I was not alone. I just had a hard time reaching out and opening my eyes to all of the amazing love that camo from this life altering time in our lives.