The story of Micah

I am going to try to give a quick summary of Micah's life in one post... this may be difficult.

• Micah was born full term (4 days late) and weighed 6lbs 1oz
  
• He had fast respirations so I was unable to feed him for several hours


• Low temperatures


• Hypoglycemia (low blood sugar)


• Was unable to feed due to lack of blood sugar... or so we thought


• Had to stay in the NICU for 4 days

• Had to be woken up for feedings because he slept so well


• First ear infection (double) at less that 6 weeks


• First pneumonia at 6 weeks (2 nights in hospital)


• Continued to have ear infections all the time


• Was very small for his age but super cute!
  
• Sat up at 6 months
  
• Had another pneumonia
• Loved sweet potatoes!!! He turned orange and was tested for kidney failure!!! :)


• Tested for CF (cystic fibrosis) and was negative


• Crawled at 10 months


• Hospital stay at 11 months for high fevers (105.7)
  
• Said some sounds at 12 months
  
• Hospital stay at 13 months for 3rd pneumonia and was tested positive for CF, also had a CT scan of his lungs to see why he was getting pneumonia so often. The pulmonologist (lung doctor) did not believe that he really had CF. As far as we know, Micah does NOT have CF. Was also found to have a broken collar bone in the chest x-ray before he was admitted to the hospital. (He fell down 3 stairs the week before)


• Worked up (tested) for immune deffeciency and was found to be IgG4 deffecient


• Walked at 15 months


• Not really babbling


• Extreme fear of water (would not sit down in the tub even!)


• Possible night terrors


• Would wake up screaming in the morning and I would have oatmeal ready to shove in his mouth because that would make him stop


• Had ear tubes placed at 18 months


• Tested for sugar problems (because of the screaming in the morning, we thought possibly low sugars) was found negative


• Became a BIG BROTHER!!


• Referred to Early On for speech evaluation at 24 months (evaluated at 12 month level)
  
• Had weekly visits from Early On to help with talking and communication


• In January of 2006, was hospitalized with RSV and pneumonia. Had blood drawn to do genetic testing for CF to have a final answer and the hospital somehow did NOT send the blood in for testing... so we still don't really know for sure.
• Was told sometime between now and spring that Micah was either autistic or deaf (?!!)
• Had hearing tested and failed
• Had tubes put in again and hearing was better
• Went to U of M for a second opinion and his hearing was good
• "Fell" somehow and cut between his chin and mouth and had 9 stitches (did not help the talking or eating so much)
• Went to U of M for a speech evaluation and was found to have speech apraxia
• Speech pathologist from U of M referred us to neurology to have an MRI done to make sure something else was not wrong because he did have speech regression at one time (would take 2 months to get in)
• Eyes started crossing
• Went to opthalmologist and started patching (not fun)
• Referred to a geneticist to rule out anything else (would take 3 months to get in)
• Had a BAER hearing test along with an EEG to rule out seizures
• "Fell" again and cut his head by his eyebrow, had it glued this time
• Had another EEG because the first one was questionable (he was fine)
• Started speech therapy at the school in the Fall of 2007 and was suggested that he be in the Pre School for special education
• Started school and LOVED it!!!
• Went to U of M for neurology and they did NOT want him to have an MRI but wanted to wait another year because he didn't really have any symptoms that would warrant an MRI
• Went to the Geneticist and they said "he looks fine" (I'm not kidding either!)
• Continued with school and started learning his ABC sounds and was talking more. He loved going to school.
• Was evaluated by the OT at school because of possible swallowing problems that we were noticing. He also would choose to mainly eat soft foods like apple sauce, pudding, yogurt, cottage cheese, etc. He was just fine during the evaluation.
• The opthalmologist finally saw something with Micah's eyes and put him in bi-focals
• Had a swallow study done at the hospital and he did not cooperate so we did not get any information. I could have had them put a tube down his nose to his throat but I honestly thought that too much had been done already and nothing had been found out so I just said forget it! The speech therapist in the room suggested that he has acid reflux because of what I described to her. He started taking prevacid which did seem to help.
• This was about the time when I said NO more testing until something else happens.
• So.... February 22nd, 2008 Micah had a seizure at school and stopped breathing. He was taken by ambulance to the hospital and nothing was found to be wrong (besides having a seizure.) He did say that he hit his head and all of the other kids said so too. He would point to the base of his skull above his neck. There were no marks or bruising there.
• I told the pediatrician that Micah was going to have an MRI now since he had a seizure. They said "I can see there is no point even arguing with you on this one." :)
• The next weekend Micah was throwing up and had diarrhea for 4 hours continually so we took him to the ER because it could possibly have been from another seizure or something else neurologically wrong. He had never thrown up before now. He was fine neurologically and not dehydrated so we went home.
• Had MRI and was found to have Chiari 1 Malformation (8mm) as well as some blockage of CSF (cerebral spinal fluid) at the foramen magnum (hole in your skull where the brainstem and spinal cord meet)
• To finish out this long summary, we ended up at Detroit Children's hospital with Dr. Ham who is going to be doing a Chiari decompression surgery on Micah on May 1st, 2008.
• Micah will be having an MRI on Tuesday, April 22nd to check his whole spine as well as a more detailed CSF flow study before the surgery.