Jeremy's Story

Jeremy was conceived after seven years of infertility problems, using a drug called clomid. And after one miscarriage in 1998.Three months along, baby died inutero. Jeremy's pregnancy was pretty much uneventful with the only problem being I had morning sickness for the first five months. At seven months pregnant I had my second ultrasound done and I found out I was having another baby boy! I was I little disappointed for I was hoping for a girl, but after seven years of waiting, I was happy that the pregnancy was even surviving and I was going to finally add to my family. About three days after my ultrasound my doctor called me and said I have  some concerning news. He said "There is something wrong with the baby's brain! "I said what do you mean. He said there seems to be a buildup of fluid on his brain called hydrocephalus. He tried to explain what it was but I was so devastated and crying that I told the doctor I had to go cause I couldn't talk right now. I was actually in my front yard on my hands and knees crying and screaming and asking god why he would finally allow me a child and then give him this problem. Thank god my sister lived in the same apartments and came running out to help me. I called my husband at work and he said he was on his way home. A few minutes later the doctor called me back asking if I was alright. I said ,"NO I'M NOT". He tried to calm me down. He told me I needed to go have a level two ultrasound with a specialist, he'll make the appt. and call me back. So he called me back with the appt. for the next day. We went to the appt., and when it was done the specialist told us that he found that the baby has severe hydrocephalus with probable dandy walker syndrome. A shunt would be placed shortly after birth and the baby would be severally disabled, due to the missing brain called the dandy walker!. From that day on my pregnancy was no longer uneventful ,but very stressful! We had to see new doctors ,all specialist and had to set up the event in a different hospital further from home.

Jeremy was born August  9th 2001 with a scheduled induction at thirty nine weeks, at 6:45pm. He weighed 5.7lbs. After 5 hours of not too bad labor. He came out fast when it was time to push, with the cord around his neck three times. His apgar was low and he looked really pale. He had bruised the top of his head because he came out hard and fast. He wouldn't nurse or take a bottle and stayed in the well baby nursery for the first night for observation. The next day I asked them to bring me the baby several times to no avail. They finally brought him to me after lunch. They wouldn't let me hold him and told me they were bringing him to the NICU because he wouldn't hold his temp. He had an MRI, blood transfusion, and was jaundiced. He started to eat with IV in bellybutton. Then after a week in the hospital the doctor's confirmed the worse, they said that Jeremy's condition was worse then the thought and that he has hydranencephaly and that he probably will die shortly. Take him home and spend as much time as you can with him. So we took him home. The hospital set us up with public health help and off we went.

Jeremy was a very quiet and content baby for the first three months. Then at four months old his neurosurgeon said he needs the VP shunt as soon as possible cause the fluid was building up too much. We had the surgery. It was a scary time and when he was finished he said everything went well but he's having a hard time coming off the vent. He didn't come off the vent for two days following surgery. He finally had a voice after the surgery. Before that we use to call him squeaker cause he barely could cry. When he got off the vent. he cried for the first time and scared himself. I couldn't believe it and had to ask the nurse, why is he crying, she looked at me funny and I told her he's never cried with a voice before, I don't think she understood me cause she still looked at me weird! From that day on that's all the poor baby did. CRY, day after day, night after night  and barely sleeping enough to say that we slept at all.

Jeremy was nursed till he was  two and a half and it took us a long time to get him to take a bottle. I had to learn a three point hold on his mouth while holding his bottle. And I spent tons of money trying different kinds. I found out that a wide nipple  worked best for him due to his poor suck. And we are still using it to feed him liquids. (we use the Playtex natural latch nipple and bottle bag system) He eats orally for all other meals.

Jeremy was a very fussy, irritated baby and fussed for the first two years He. just recently ,within the past year and a half, became less fussy and happier kid. He also started sleeping better and will only get up about one time a night (to snuggle in bed with mom lol.). But of course we still have times when he gets very fussy, crying and not sleeping well!

Jeremy has, Hydranencephaly w/hydrocephalus, VP shunt, reflux, seizures, neurogenic bladder, eczema, legally blind (unknown vision) and low fabrinagin blood levels.

Jeremy is home schooled and receives OT 3x3o,PT 3x30,Speech 3x30,vision teacher 1x30,and special ed. teacher 4x30.Support with OMRDD, and service cord. with Ulster/Greene NYS ARC.

Jeremy has very little equipment right now and I'm working on getting more. He has a bath chair( that's not working out to good). A tiger 2000 push chair (that I hate), rocker switch, big red  jellybean switch, and lots of switch toys (from enabling device.com) that we have purchased.

Jeremy has been pretty healthy thus far, barely ever gets sick. The pass two years we have been fighting UTI's from his neurogenic bladder. In  the winter of 2004 he was in the hospital  twice for a couple days each with bronchiolitis but recovered well.

Jeremy is now a happy little man, that just celebrated his 4th birthday. He just learned how to roll over from his back to his belly just two weeks before his birthday. He likes to kick and scoot about the floor on his belly or his back. He enjoys all kinds of music and will sit and listen to his children's songs cd for at least on hour everyday (depending on his mood). He likes to be roughed up by dad or brother Joey, and when you tickle him he laughs and squeals for joy! His smile can light up even the worst of days. He try's to say Daa Daa but it comes out aah aah, He try's to say grama but it comes out aagah aagah. He likes the crinkle sound of a potato chip bag. He loves vibration and any annoying noises. He thinks the smell of a dead skunk in the road is just hilarious! He doesn't like a dark room so we keep the light on even in the day if needed. He will pucker his bottom lip and cry, if someone yells or he is scared. He has emotions and Is social to people he knows and even people he doesn't. He's my special little man with mommy's eyes and daddy's feet, and I wouldn't change him for the world!

Jeremy age 4, lives in west Coxsackie, N.Y. (upstate) with his mom, dad and older brother Joey age 12, three dogs Tobie, Daisy and Jypsie. Three cats Sasha, Cali and Oreo. And a bunny named Thumper!  email me (Jolene) at Chiapug74@yahoo.com if you have any questions.