December 2nd - receive a phone call regarding cystic fibrosis (10 days old); newborn blood screening had a red flag so they researched/more testing and discovered a CF gene; more testing needed
December 17th - visit children's hospital for CF sweat test; results negative, has the CF mutation gene which means he needs genetic counseling/testing before having his own children (Brayden will also need genetic counseling and testing before having children)
January 27th - two month check up/vaccines, possible craniosynostosis (corrected with skull surgery), need a skull x-ray
February 2nd - skull x-ray at hospital, he did not like that any
February 24th - croup; miss first day of school 25th (first 2 wks of school)
March 1st - cancel skull x-ray follow up appointment due to illness
March 24th - still sick weeks later, still jolly, still SNOTTY, check for RSV (negative, probably had it but didn’t get tested until after the fact)
March 29th - four month check up/vaccines, advised to follow up on skull/head shape; it is not cranial stenosis after reviewing x-ray, no surgery needed, but drastic plagiocephaly/flat head which can put pressure at spots on the brain
April 13th - met with specialist for possible need of a helmet to fix skull shape/pressure issues, schedule head scan; he discovers congenial torticollis which is shortening or tightness of the sternocleidomastoid muscle, could make his head tilt permanently and/or cause numerous learning disabilities if not treated
April 14th - STILL sick (our diagnosis: croup to RSV to a cold 4/2, CF is on my mind), doc check-up for pneumonia or bronchitis, lungs sound clear despite the phlegm, coughing , choking and runny nose; swab comes back positive for enterovirus and/or rhinovirus
April 15th - doctor visit to check inflammation/infection of his dukey, skin split where it should be healed from circumcision, infection cleared up in 2 days w/neosporin
April 25th - skull scan (technology is amazing) with one of only two smartscans in Michigan; no pressure on his brain, just physical appearance issues so it is up to us to decide about the helmet; christian’s results are 8.9cm difference (10cm is considered bad); we can redo scan in 4-6 wks to help us with decision on helmet; in most cases, pressure on the back of the head creating a flat spot, pushes to the other side but christian is in a very small percentage of where pressure is pushing straight forward deforming his face
April 27th - physical therapy evaluation which declares RIGHT torticollis (not left as originally diagnosed); his symptoms aren't text book and a little different than the "norm", his torticollis is linked to his head shape issues but is NOT the actual cause (could actually be complete opposite)
April 28th - back to the doctors to check on lungs again since he still has breathing issues after 9 wks (last check up was 2 wks prior), swab him again for 4 other possible virus'; can't pinpoint the cause so we were directed that we may need to follow-up with a pulmonary doctor and revisit cystic fibrosis concerns; given antibiotics for a small ear infection, steroids and breathing treatments
April 29th - talk to the genetics department at children's hospital, CF test results can be wrong but it is rare; 2nd opinion also suggested to watch him closely and follow up with pulmonologist so we wait and see
May 3rd - my bebe is feeling a bit better, ear/lung follow-up found water still on his ear and directed to continue with breathing treatments as needed; stopped steroids after two days at my own discretion
May 4th - start physical therapy sessions; twice a week mon/wed at 3:15, exercise and stretches should be done about 10x a day, PT could be 6 months up to a year
May 7th - Cranky, slightly feverish, snot faucet! = popped two teeth :D
May 9th/11th - physical therapy
May 13th - recheck on ear/lungs, still a little water buildup on ear but not enough for concern, lungs sound better but directed to proceed with pulmonary specialist appointment
May 16th/18th/23rd/25th/30th - physical therapy; figure out what exercises are most effective since we are having a hard time doing 10x a day
May 31st - Six month check-up/vaccines (didn’t happen yet)
June 1st - Pulmonary Doctor appointment (didn’t happen yet)
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