The first year

Dawson David Micheal was delivered by c section at 37 weeks. We spent 4 wonderful days in the hospital just him and I. He was healthy and perfect in every way. The first few weeks and months after coming home were filled with sleepless nights and our poor little man in some serious pain. At 5 days he developed a bad cough and fever. No surprise as he has 5 older siblings 2 were in school and 2 in daycare at the time. We brought in into the ER since he had a fever of 102. They did a chest x ray and found out he had a lung infection. We got some meds and went home. He never really got over that fist cold and the Dr said he had reflux,colic and reactive airway disease (baby asthma). He was put on meds for the reflux and asthma but still he cried 24/7 and seemed to be in so much pain all the time.

At 2 months old Dawson was rushed to the ER with another high fever and bulging soft spot. The Dr in the ER that day was so rude. His first though was shaken baby syndrome. Dave and I were shocked that they would even assume something so harsh (i know its their job.). He told us that until the C/T scan proved we (or the children at home) never hurt him that it was child abuse. Of course the C/T scan proved US right and he had not been dropped or shaken the next test was a lumbar puncture (spinal tap). My heart sank to my feet when thy said the word meningitis. My poor baby was covered in i.v's filled with strong meds and vitamins and lipids since he could not hold down any food.

The spinal tap was done the following morning followed by a head ultrasound and urine tests. All tests came back "normal" or so they told us. There was no answers as to why he showed all signs of meningitis but the test was negative. He was discharged 6 days later.

2 days after coming home we got a call from our pead to take him back to the peads ward because he needed more tests done (they would not say what tests though). Again my heart sank because we had not got the full spinal tests back just the preliminary one. Turns our he had a raging UTI and they wanted to do a cath test instead of a pee bag test. That test also came back for infection. They wrote him another prescription and sent us on our way. Our pead figured that he had had this infection since birth and this must be the reason for the constant crying,vomiting and pain he was in. Told us he would be fine after the meds got into his system. He was wrong.

After close to 3 months of rx after rx to get rid of this infection he started throwing up what looked like coffee grinds and he was admitted into the hospital right from our peads office. The RN that came in to do blood work and i.v's noticed right away how large his head was and how tight and bulgy his soft spot was (it had been this way since his first admit to the hospital at 2 months but our pead said it was fine). She called our pead right away and made him order a C/T scan. We were in the hospital for close to 2 weeks getting i.v antibiotics for the UTI (these ones worked and UTI's were never an issue again!). He had a C/T scan,kidney reflux test,abdominal ultrasound,and barium swallow test done. They told us his c/t scan was clear for hydrocephalus,he was not refluxing urine into his kidneys, he has minor reflux and his internal organs looked great. All was good and we could take our HEALTHY baby home.

A few months went by and we listened to him SCREAM in pain about 22 hours a day EVERYDAY and watched his head grow rapidly (about an inch a week) and watched his facial features change on a daily basis. He could not hold up his head,roll or sit and he was 8 months old. He stated getting P/T and O/T to help with this. At 9 months he was re admitted and had yet another C/T scan and head ultrasound done. Again we were told it was fine. No brain bleeds and no hydrocephalus and to go home. By this time our pead was starting to think I was crazy (while I was thinking he was an idiot).

At 10 months we finally got a referral to a pediatric neuro (thanks to my awesome family dr that agreed there was something wrong with our son). Dawson seen Dr.Prasad for the first time on Sept.21,2006. I brought copies of ALL tests I could get my hands on to show him along with head measurements from birth to date. On that day our son was diagnoses with External hydrocephalus and PVL. External hydro is CSF (cerebral spinal fluid) collecting around the brain not in the ventricles. Thankfully they do not shunt these children anymore but it does but them at a very high risk of brain bleeds with minor bumps to the head. PVL is a type of brain injury that kills white brain tissues beside the ventricles. We are not sure on how he acquired this brain injury and may never know. All this our awesome neuro seen reviewing all the tests that he had done in Windsor under the care of our trusted (so we thought) pead that said our son was fine. So this was the start of Dawson's story.