Monday, June 20, 2011

"Bee"-ography Monday

This weeks "Bee"-ography is told to you by our little Bee, Damien (with a little help from mommy, Jessica.)

Damien Zuchowski's Story



Hi my name is Damien Xavier Zuchowski.  My mom is Jessica, my dad is Dusty and I have 2 sisters Kayla (6) and Rylee (4).  I was brought into this world in Great Falls, Montana (Malmstrom AFB) on January 13, 2009 at 10:38am, weighing in at 6lbs. 14oz. and 19.75 in. long. 


 

  I was a handsome lil man.  I was a good baby for the first month or two, but I slowly became a very fussy and irritable baby. 

In March of 2009 my dad left for his very first deployment. He was to be training stateside for a month and then he was headed to Afghanistan for the next 6 months.  Seeing him off was very difficult and sad, we all cried a lot.  Shortly after my dad left I was beginning to be so fussy and crying all the time, and my soft spot on the top of my head began to feel firm to my moms touch.  My mom took me to the ER numerous times and each time she took me they blamed the fussiness and crying on colic or constipation. They even said that my soft spot was fine it was firm because I was crying so much. 

After about the 4th or 5th  time to the ER my mom took me to my pediatrician on April 21st, 2009 and told her that she wanted some kind of test done on my head to make sure there was nothing wrong with my soft spot feeling firm.   


They sent me for a CT scan and later that day my mom was told I had Hydranencephaly.  If that wasn't bad enough for my mom, they had read the diagnosis out of a book, my dad who is in the Air Force was deployed and in Afghanistan. My mom was taking care of me and my 2 sisters, Kayla and Rylee all by herself in a state where she only knew one person and the rest of our family were thousands of miles away in Pennsylvania.  The Air Force immediately asked my mom what children's hospital she wanted to go to since they couldn't help me in Montana.  They even told my mom that it would be days before an MRI could be done.  She explained to them that she wanted to go to Children's Hospital in Pittsburgh, PA since her family and my dad’s entire family only lived 2 hours north of there. They arrange a flight for 3 days later for my mom and I to be on but thanks to the crazy weather in Montana we didn't get to leave until the 26th.When we left Montana on April 26th there was 2 ½ feet of snow on the ground.  My sisters were able to travel with us after a lot of pushing on my moms part.  


 In the meantime the Red Cross contacted my dad in Afghanistan and arranged to bring him back to the states to see me.  Traveling from Montana to Pennsylvania with 3 small kids was not an easy task for my mom to take on all by herself but thank to some wonderful people on our flights it made the trip a lot easier on her.  When we all arrived in the airport in Pittsburgh my dad was there to pick us up. What an emotional time that was.  We came to find out that the Air Force only told my dad that I had taken a turn for the worst and no other details. My mom had to explain it all to him when we got to the hotel.  I had an appointment with the Neurosurgeon on May 1st.  They explained to us in more detail exactly what Hydranencephaly was and that I also had Hydrocephalus and that a shunt was needed to stop the pressure and swelling in my head.  They explained that they is no treatment or cure for Hydranencephaly and that most infants don’t live to see their 1st birthday.  They explained that the shunt would make me more comfortable and may prolong my life.  After speaking with a doctor that wasn’t reading to us from a text book we were feeling  a little better about the whole situation and were given the  weekend to make our decision. 
 We decided that I would have a shunt placed and on Monday they called and set up the surgery  with the doctor for May 6th, 2009.  The surgery went well, I had a little trouble waking up from the anesthesia so that gave my parents and the doctors a bit of a scare but I just must have been tired.  After I woke and they took me to my room I began to my bottles like a champ and the next day I got to go home.  My dad was able to stay stateside until I had my first check-up appointment, but after that he had to return to Afghanistan and finish out his deployment.  



 My sisters, my mom and I stayed in Pennsylvania with our family while my dad was gone. We never returned to Montana, it was pretty rough considering all are things were there, clothes, beds and toys.  Our friends and family were amazing and helped us out so much.  My life in PA was going good, I was eating and gaining weight, my mom made me work everyday on head control and strengthening all my muscles.  In August of 2009 I began having seizure, although at the time my mom and family members were unsure what they were.  I would cry so very hard and scream at the top of my lungs all while I stiffened my arms and legs and turned my head to the side and stuck out my tongue.  My mom did everything she could to calm me down but nothing worked, I would only stop when the episode was over.  After seeing the Neurosurgeon for one of my shunt check ups they scheduled me to see a Neurologist.  While we waited for the appointment on September 28th, 2009 I began Physical, Occupational and Vision Therapy with the Early Intervention Program.  On September 20th, 2009 I began running a very high fever my mom took me to the ER in the town we lived in near where we were living and as soon as my mom told them about my shunt and my diagnosis of Hydranencephaly they immediately called the Children’s Hospital in Pittsburgh to discuss what should be done.  They decided that I needed to get to Pittsburgh as soon as possible so my mom and I got to ride in a helicopter to get to the hospital.  After a very long stay in the ER in Pittsburgh they finally admitted me to run some test and to check on my shunt.  After all the test and a day and a half later we found out that my shunt was fine I just had a virus.  My Grandma came to Pittsburgh and picked up my mom and I and took us home.  I went to see a neurologist who was very nice, he put me on Keppra to try and control my seizures, after changing dosing with no real noticeable results he also added the medication Sabril (vigabatrin) within a week the seizures seemed to disappear  My dad was scheduled to come back to the states in October but since all our stuff was still in Montana when he got back from deployment that is where he went.  He stayed in Montana until November when he got orders to move to McGuire AFB in New Jersey.  We finally got to see him on November 18th, 2009 although he couldn’t stay in PA with us  for very long. He had to go to McGuire AFB to start work and wait for a house for us.  We spent Christmas in Pennsylvania with all our friends and family but shortly after Christmas we all moved into our new house in New Jersey. 





  After moving to New Jersey it was time to find and meet all new doctors.  It was also time to contact Early Intervention and get my therapy sessions back.  My mom spent a lot of time on the phone when we first got here.  We were living in a two story house on McGuire AFB.  My sister Kayla started school on January 4th, 2010.  Shortly after moving to New Jersey I started to have some small seizures.  Nothing like they were before but I now just jerked my head to the left for a split second and then returned to midline and seemed fine.  I didn’t cry or scream but my mom new instantly that it was a seizure. 


In October of 2010 an amazing group of people from the town my mom grew up in decided to hold a Haunted House Benefit in my behalf.  We returned to Pennsylvania to attend the 2 day event.  The Haunted House was amazing.  My sisters were so scared.  The Montemorenci Fire Hall and the Crew of the Haunted House were wonderful and did an awesome job. The turn out for the Haunted House was spectacular and my mom and I did our best to thank everyone involved.   After seeing my new Neurologist we made some adjustments in the dosage of my current medication but after months of playing with the dosage and no results we decided that it was time to add a new medication.  He added the medication Topamax.  In March of 2011 we moved into a single level housing unit on Fort Dix.  I’m still having seizures some days are a lot worse than others but we are scheduled to go and see the Neurologist next month.  Thanks to our newly found Hydran-families we have lots to discuss with the doctor.  Now that you know what my life has been like through the medical side I’d like to tell you a little bit about what my days are like just being me.  I enjoy getting my mom up very early in the morning usually around 6am after having her up half the night with me.  Its not an every night occurrence but it does happen.  I enjoy being a little stinker for her and refusing to eat my breakfast and take my medicine until about 8am.  I love playing with my mom and my big sister Rylee.  Rylee lays on the floor with me and talks to me and shows me toys. 
 


On Mondays I have therapy with Lisa she comes to play with me and help me learn to be more interactive with everyone around me.  Tuesdays its Nicole and Occupational therapy.  Wednesday is out-patient Physical therapy we get to take a ride in the car to go and see Nancy.  Rylee likes it there more than I do, all she does is play with all the toys while I gotta work.  Thursdays its Physical therapy again at the house with Maureen. Fridays I usually have that day free. Saturdays and Sundays change all the time but no therapy on the weekend.   I eat my lunch anywhere between noon and 1 after a good lunch with my mom and sister it is time to take my nap.  I usually take about a 2 to 3 hour nap depending on my mood that day.  I have my good days and my bad days just like anyone else.  After my nap its time to get my big sister Kayla off the bus from school.  Then its time to sit with mom while she helps her do her homework. 


After that the 3 of us love to listen to music.  My sisters like the girlie stuff but my favorite band is Nickleback.  My mom plays them for me when I’m having a really bad day and it helps to calm me down.  Pretty soon my dad comes home and its time for Daddy son time.  I get to hang out with my dad while my mom cooks dinner.  After we have all eaten dinner we hang out watching tv, talking about how our day went then its bath time for me and showers for the girls.  I enjoys my baths for the most part but some days I want nothing to do with them.  Then the girls go to bed and I get to hang out for a little longer till its time to take my medication and head to bed myself. 
   

One of  my favorite places to sleep is in my oversized bean bag chair. It curls around me and makes me feel like I’m being held by mommy all night long. That’s my story as of June 10, 2011, its kinda short I know but hey I’m only 2 I’ll try to update it as often as I can but for now that’s all folks.


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