road to finding "me" part 3

around 2 years old we also learned that chance had asthma...he had had 2 severe cases of croup and then the diagnosis hit. he also had allergies and ezcema, and had a small growth on the side of his cheek, we found out was juvinile melanoma and had it removed thru surgery. life seemed to be spinning out of control, but we were managing and doing okay thru it.

April 2007 we learned we were having our 3rd child, shortly after in May i had a small accident in a 711 and had dislocated my knee 12 times in 12 hours, i was in PAIN, on meds, that i wish i could have avoided being pregnant. i was in a knee brace with a walker for about 2 months, i had ocupational therapy myself to help me get up and moving again. in july i was out of therapy and by the 19th we had our BIG ultrasound scheduled, i couldnt wait to find out if we were having a boy or girl! i was so excited. the ultrasound tech said it was a boy, and then got very quiet a few moments later the OB came in, my heart sank, i was afraid, i knew this ment something was wrong, but there is no way i could have prepared myself for what was coming. i was told my son had Congenital Diaphragmatic Hernia, i didnt know what those words ment but hernia didnt sound to bad. then i was hit with the knews of what it ment, i was told abortion was a option. we met with a ob councelor and a case manager who helped set up future appointments with specialists for the baby. i was devestated. the same day we were scheduled to move into our new apartment on post, a bigger place to accomidate the new baby, only now i was told there may not be a new baby coming home. we researched and found the best doc we could in houston to deliver Zach. Zach's delivery came early, on Zach's time, as everything soon would. i was life flighted to houston in labor in a helicoptor, i had signed the proper forms saying i understood the risks of flying while in labor, that i understood the risks of already having scar tissue from previous csection, that i knew i could potentially die, i could have placental abruption and both me and Zach die. but what other choice did i have? stay at the local hospital where they know NOTHING about zach, his needed care, they didnt have proper machines to keep him alive after birth. if we stayed he died, point blank. i HAD to go. the life flight team was wonderful, and the OB department took over. by morning the contractions hadnt stopped, labor was still progressing and when the amnio was done to check zach's lung growth, maternal blood was found...showing that my placenta was indeed abrupting. the csection HAD to happen NOW. luckily Harold was with me, the boys were with his parents (a whole nother story) and on oct 26th at 805am, Zach was born at 33 weeks weighing in at 4lbs 7 ounces, 18 inches long. he was intubated immediatly and i didnt get to see him till that night.

Zach stayed on the vent to breathe for him, thru his surgery to repair the hernia at 5 days, he remained on the vent until christmas morning when he self extubated (remember i said everything is done in Zach time) he seemed to be doing well as far as i could tell. he was still needing oxygen and at the time a CPAP machine to help deliver pressure to his lungs. in january we left houston and transfered to a closer hospital to home, by this time we needed to be with the boys more, mikey was being cared for, or rather not cared for, by my inlaws and chance had come to stay with us at the ronald mcdonald house after only a week with the inlaws (they couldnt handle him) mikey would have been with us as well had it not been for school.

Zach remained in the new hospital for 3 months, i found the care at this hospital to be awful and really felt like we had to get him out inorder for him to survive! he left the hospital after his second surgery to place a gtube, this was how we fed him his formula thru a tube and syringe as he still wouldnt allow for oral feeds. after only having him home for 5 days Zach went into respitory failure and was sent back to the same hospital but the PICU this time not the NICU. the PICU was a God send, my faith was restored with the caring doctors and nurses, the atmosphere was much different than that of the NICU. Zach was on the vent again for 6 weeks before we were able to get him back on a nasal canula (portable oxygen) after tweaking some meds and getting new scripts we brought Zach back home. this time he was home for about a month, when he had a seziure, the seziure we later learned was caused by a bleed in his head, called a subdural hematoma, it was repaired and we were told it was "old" blood, unsure how the injury occured, and that he had brain atrophy from this. he was sent home on seziure medication as well. up until this brain surgery zach didnt respond to anything, didnt smile, he cried alot. he was fussy, and would just lay all day. after the surgery we saw him SMILING!! it was a miracle. he started to slowly respond to things and "wake up" in a way to his world.

Harold again left for korea this time in october, only about 6-8 weeks after getting zach home from this brain surgery. times were tough. we had nurses inside our home all the time to help, and while it was help, it was a bit "odd" as well. we had therapists coming in as well. many appointments each month to see his specialists, his cardiologist, his pulmonologist, his neurologist, his orthopedics, his GI doc, as well as all the "normal" baby things. needless to say in all of this the boys issues kinda got put on the back burner for a while. shortly after though we started ocupational therapy for mikey though and started to dig further into their issues. with new medications for mikey and chance sleep got better, moods got better, things were looking better.

Harold was gone for a year, when he came back chance was in pre-k and mikey was in 2nd grade. both boys were having problem and issues in school, mikey was hiding under his desk, chewing his clothes, unable to pay attention, complaing the room was to loud and kids were mean and on and on, he wasnt keeping up with his school work and was having an overall bad experience. chance was getting in trouble for "always bumping into kids" (remember i said he was a crasher) and for having to walk circles around you when he talked and unable to sit quietly when needed, he had verbal tics that he would do when he was nervous and it would inturupt the whole class. it was taking a toll on both me and them. it was one more stress i didnt see the point for anymore. i withdrew them both from school after the first 9 weeks and started homeschooling.

back to school they go

well its half way thru the first week back to school, mikey is in 2nd gade and chance in pre-k. so far all seems okay, from what i can tell. is it normal not to be able to get ANY info from the kiddos about school? they dont say a single word about it. they are like robots going to school, so matter of fact, no excitement, no joy, but also no complaints, no disapointment...they are just there. i wake them up and dress them, feed them, drive them to school, walk them in, they walk to their rooms and go directly to the line outside the door and i have to ask for a kiss, they wouldnt even turn to say goodbye if i didnt ask. in the afternoon they wait till the teacher releases them, they come to me, i ask about school, i ask about friends, lunch, PE, music, math...everything....i get 2-3 word answers, followed by...."can we play"...such and such game when we get home? really...this cant be how kiddos act? is it? i was waiting on excitement, wanting to share something with me. is this part of socialzation problem, from autism? i asked mikey if he made any friends, he told me...um there are two "friends" from last year in his class...i asked if he plays with them..."no" . i asked chance same question....he told me he "made 1000 friends..." when i asked what some names were he said..."i dont know" i asked if he played with them at recess he told me for recess he "traces the lines on the slide, on the top and bottom of the slide" i know you cant see emotions on this page so insert *broken heart* here. ugh.
Mikey has a new ARD planned for friday, im nervous. its a big decision and alot may or may not ride on it, ill go with my instincts this time and not let them alter that feeling, i left last time knowing i had let him down. not again.

Zach....oh my, what can i say....do i want to wow you? shock you? hhhmm let see. for one he is jabbering!! he is singing!!! i "think" he gave me a kiss on my arm! okay let me back up...jabbering...yes he is saying gagaga geegaagagaga gee ALOT! im not sure what he is trying to say, but he is carrying on a conversation! he replied to the ocupational therapist today with a "AAAHHH" sound today when she asked him something, almost like he was yelling at her to hush. and when i was tickling his feet i heard something like "SSTAAA" maybe it was STOP? and on to his singing...ive been singing the itsy bitsy spider, row row row your boat, and some others to him alot lately, he anticipates the next part to the song if i stop, and in my pauses both intential and normal pauses he starts to "sing" mouth open and long vowel sounds coming out. its too cute. tonight during dinner i was holding zach in my arms and we were singing and playing and he laid his head on my to rest, i said "aww baby" and when i said "baby" he popped his head up to smile, i smiled back and so we did this back and forth about 5 times, he was LOVING it and knew when i said "baby" he would pop his head up. after we were done there i turned my head to get a drink and i felt something wet on my arm, when i looked back at him he was smiling, i asked if he kissed my arm and he smiled bigger!!

Zach ate pancakes and syrup tonight...he had strawberry and normal syrup, loved it! he would hit the table for more, and id fight him to get it in and he would smack away. the pancake he got was itsy bitsy...he had 4 tiny finger crumbs, but he ate each one, no gagging, no throwing up, and he was smiling!! if thats what it takes i can make pancakes every day!!