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Monday, June 28, 2010

Make-A-Wish

When I have shared with some that Ian has qualified for Make-A-Wish, I get very strange looks along with: "I don't know how to ask this but isn't that for kids with terminal illnesses?" Well the answer is NO. According to the Make-A-Wish website:
Many of the children who qualify for a wish go on to lead healthy lives. We grant the wishes of medically eligible children (i.e. those diagnosed with life-threatening medical conditions - i.e., a progressive, degenerative or malignant condition that has placed the child's life in jeopardy.)
Most wish requests fall into four major categories:
• I wish to go
Some wish kids want to travel to their favorite theme park, while others want to visit an exotic beach, go on a cruise, see snow for the first time, or attend a major sporting event or concert.
• I wish to be
Children search the depths of their imagination when they wish to be someone for a day – a firefighter, a police officer or a model.
• I wish to meet
Many want to meet their favorite athlete, recording artist, television personality, movie star, politician or public figure.
• I wish to have
Children often wish for a special gift, like a computer, a tree house, a shopping spree or something that they have coveted for a long time.

Thursday, June 24, 2010

Our Journey Continues

Our journey continued with Becca and Ian each spending week in the NICU and on May 10, 2003 and May 11, 2003 when Becca and Ian, respectively came home from the hospital. We knew Ian had microcephaly, an abnormally small head, everything else seemed okay. Ian qualified for infants and toddlers from birth due to his traumatic entrance into the world. As he continued to grow, we started to see some other developments. He was having difficulty feeding; we could usually get him to drink but most of the time he would spit up. He had hypotonia — low muscle tone when muscles are on the loose, floppy side. Although hypotonia is not a well-understood phenomenon, children with low muscle tone often have delayed motor skills, muscle weakness, and / or coordination problems (from babycenter). During this time, we were living in Howard County and his pediatrician was wonderful, he was running numerous tests as well as consulting specialists to see if they had any insight on what was going on with Ian. We had seen many doctors during this time as well…pediatrician, endocrinologist, gastroenterologist and feeding disorders, orthopedists, pediatric neurologist and physiatrist. Some of these specialists we had gone to see more then one for second opinions. All of his doctors were/are either at Johns Hopkins, Kennedy Krieger or Mt. Washington Pediatric Hospital. In addition, Ian had a sleep study conducted as he was not sleeping through the night until he was 18-19 months old.

We always get the doctors notes sent to us, around the age of 2 ½, we received one which we found alarming. It was the first time we had seen written in words and told to us that Ian had diplegic {paralysis of corresponding parts (as the legs) on both sides of the body} cerebral palsy. Brian and I struggled with this diagnosis for many months, deep down we just did not think he had CP. There is a developmental pediatrician at Johns Hopkins/Kennedy Krieger who specializes in CP among other diseases; we decided to see him for a 2nd opinion. We were told that Ian was on the fine line of having CP, it could go either way and he could see where some would say he did have it while other would say he did not. One comment I distinctly remember is “Ian can do things that CP kids can’t do.” Looking back maybe I should have taken that comment differently then I did…don’t know what I would have done with it but…anyway. The MD said he would support us in our decision. We decided it could help Ian to have CP…medically issues as well as academic issues. So at the age of 3, Ian was diagnosed as having CP with unknown origin. He was getting physical therapy, occupational therapy, speech therapy as well as a resource teacher. He was making gains, I am not sure at what point and time I can say we started to see him plateaued or even digress…I do know looking back over the years it was a slow digression until July 4th weekend of 2009. Before this weekend, he was getting around well, could walk in the house without his AFO’s (ankle-foot orthoses (orthosis = brace). AFO’s are usually plastic encompassing the ankle joint and all or part of the foot. They are commonly used in the treatment of disorders that affect muscle function such as stroke, spinal cord injury, muscular dystrophy, cerebral palsy, polio, multiple sclerosis and peripheral neuropathy. AFOs can be used to provide support to weak or wasted limbs or to position a limb with tight, contracted muscles into a more normal position. Below is what they can look like, obviously not Ian as they are pink and we know pink is not his color…that would be blue (from http://www.pediatric-orthopedics.com and http://en.wikipedia.org/wiki/Ankle-foot_orthosis). Ian could get up and down the steps on his own, was not always the most elegant way but that is okay. He was able to get in and out of his bed on his own, could not completely dress himself but could assist us. I would say he was fairly independent. Then came July 4th weekend 2009.


Tuesday, June 22, 2010

Day One of Camp

Well yesterday was day one for Camp Milldale and both kids did wonderful. Being who I am, around 1:30 I called camp to check on Ian, see how he did with his medicine as well as how he was holding up in the heat. I spoke with Mindy, one of the camp nurses, she said he did great. He told her how much medicine to put into each syringe, exactly how to put the syringe into his mouth as well as when each syringe was completed. Then to make sure he took care of everything Ian told Mindy "Make sure you put the rest of the medicine back in the bottle and back into the fridge."

More of our story to follow soon.

Monday, June 14, 2010

Make-a-Wish

I am still in shock...about a month ago, I applied to see if Ian would qualify for Make-a-Wish. It starts off with my applying for him and then paperwork has to go off to the MD to see if he is eligible...well finally I got a call. Ian is indeed eligible since his disease is progressive. I had not shared this with a soul, not even Brian...well now he knows. Our next step is to get a letter from Make-a-Wish, welcoming Ian to the program and who our wish team will be to help make his wish happen. Now Brian and I need to start playing the "wishing" game with Ian...so when the wish team come out he has an idea of what his wish will be...one never knows with Ian, just what his wish will be. Stay tuned to see what happens as this unfolds.

Sunday, June 13, 2010

UPDATE June 13, 2010

It has been a good week. Ian "graduated" from Kindergarten and will be moving to 1st grade at Franklin Elem School. We took Becca out of school early so she could come and see Ian's graduation.

I spoke with Dr. Raymond's nurse to get a status update on Ian's genetic tests...the last part of the testing was started on May 11th and it will be 12 weeks from there before we get results.

This weekend we went swimming and both kids did great. They both remembered most of what they did last year. Ian did great with kicking, what a great workout that was for him. He had his last baseball game and had a great hit. Tonight, we spent some time doing some school work with the kids. Brian had Becca and I had Ian. The B's read while I went over some counting and writing with Ian. It is amazing how far they both have come.

HOW IT STARTED

Our story began in April 2003, when Becca and Ian were born. They were born at 34 wks and 5 days. Beautiful, Brian and I were in love. From the beginning, Becca was a grow and feed...she was in the NICU but just to learn to breath right and eat well. Overall, doing well. From the beginning, Ian had trouble. He was not breathing on his own unless he took a deep breath to cry. He was fighting for his life. The first hours were not good, even though I was drugged and really don't know most of what happened, what I do remember/know...oh just not good. I remember being in the recovery room, Brian by my side and the phone ringing. He said, "Ok, I will be right there." He told me he needed to go to the NICU, I was aware both babies were there so I was not surprised he needed to go. Not sure how long Brian was gone, but I do recall him walking back into my recovery room…the look on his face, not something I want to ever see again. I remember looking at him and asking “Which one did not make it?” He came over to me and said, “Oh no, they are both still with us, however, Ian is very, very sick.” At that point I really don’t remember much, the pain meds knocked me out and I was asleep again. Not sure if that was good or bad, was not there to help and make decisions but at the same time was not there to help and make decisions. Next, I remember Brian by my side again waking me up. He said it was time for them to take me into the NICU so I could see the kids. They were going to be moving Ian to University of Maryland Hospital NICU so he could get the care he needed. Howard County General Hospital could not do for him what he needed. Brian told me, Ian was not breathing on his own, they were breathing for him. The doctors had tried to put in a chest tube; were not able to get it in and his lung had collapsed there fore he was being bagged in order to breath. I still remember going over to see Ian in the NICU all the doctors and nurses around him…trying to work on him but staying out of the way so I could see him before he was transferred. Then it was onto see Becca, such a different sight. There was one nurse with her, reminding her to breath every once in a while. She only had a few tubes attached to her…

After 8 hours of life, Ian was transferred to University of Maryland and I was moved from recovery back to my room on the maternal child unit. I had been in the hospital for 5 weeks prior to delivery on bed rest so my room was saved and I knew the nurses. My mom went with Brian to U of M and my father stayed with me. The only thing I remember from that night is my girlfriend from college calling to tell me she had just come home from the hospital after having her son. I told her about the babies and that Brian was in Las Vegas. Oh I must have still been drugged up. We still get a laugh at that one. We had some ups and downs in the NICU’s for both kids, however, I must say they both did well. Brian and I, along with the grandparents, made sure that both kids had a least one of us there for a good part of each day…remember they were in 2 different hospitals, for two weeks. After two weeks of going back and forth between U of M and Howard, Ian was doing well enough to be transferred back to Howard with Becca.

Ian and Becca together for the 1st time since birth.

Wednesday, June 9, 2010

Ian took a few steps today, unassisted, Becca's face was priceless as she screamed for me to come and take a look...:-)

Tuesday, June 8, 2010

Cerebral Palsy vs Pediatric Neurotransmitter Disease

According to NIH
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy.

According to PND Association
“Pediatric Neurotransmitter Disease” is an umbrella term for genetic disorders that affect the synthesis, metabolism and catabolism of neurotransmitters in children. These inborn errors of metabolism affect the central nervous system in children and if left untreated can lead to severely compromised neurological function. The symptoms of some pediatric neurotransmitter diseases can be completely treated whereas in other pediatric neurotransmitter diseases treatment can sometimes improve quality of life. Characteristic features of Dopamine/Serotonin Related Diseases include:
dystonia or tremor
hypotonia or rigidity
diurnal variation of movement disorder
expressive speech delay
oculogyric crises (upward fixed gaze)
excessive sweating
temperature instability
hypoglycemia
sleep disturbance
irritability.

As my posts continue, I will notice things which I have not noticed before. How looking back on Ian over the years, he was worsening over time. How some of the characteristics of pediatric neurotransmitter diseases, he had however not being aware of them, I was not aware.
I have been doing some thinking on the best way to start the blog as having a history is needed….I am going to do a brief history and then go back and detail the things which over time I have realized were important although at the time I may not have realized were. So before I even get started I want to apologize if at times it seems as if I am all over the place. So please bare with me as I get myself up and running and learn more about blogging as well as retelling our story.

Monday, June 7, 2010

Getting Started

I was at Becca's end of the school year picnic today and another mother asked "how is Ian?" I started to inform her, the response I got "Are you blogging or writing in a journal about this?" "No" I said. "Why not she asked? It would be wonderful for you to do so, others will know what is going on and that way maybe others can learn from your story." So here I am...it may take me a while to get up and running but I am going to do it...stay tuned.