the family

the family

Wednesday, August 26, 2009

rambles and prayer request

well Zach had a GI appointment today, with a new doc since our last one moved out of state. unfortunatly we were told by the new doc almost right off the bat that he is also leaving:( however he told us the new location where he will be and we have decided to follow him. roughly the same distance just another town. he seemed really caring and upfront, and open to parents suggestions, so i think that was awesome.

Zach has lost more weight....he at one time tipped the scales at 28lbs and now is 25lbs 15 ounces. he is also growing last appointmetn he was 33 and a 1/8 inches, today he was 33.5 inches.

the actuall appointment was over very fast, checked his button, looks like zach may need a new bigger size button before too long, and we made a few tiny tweaks to zach's feeding schedule. instead of getting 75cc 4 times a day by bolus and 450cc for 10 hours at night at 45 cc per hour, we are now going to do 90cc per bolus feeding, 4 times a day (the differnce is very minimal ....equals an extra tablespoon a extra 2 ounces thru the day time hours) and this will shorten his night time feeding by 2 hours with us increasing the rate it goes from 45cc to 50 cc per hour. the hope is, that zach will eventually not need a night time feeding at all and only be getting bolus feeds during the day....more like a "normal" eating pattern.

our trip with the boys to the appointment was a nightmare, it was chance more than mikey who could not deal at all, i guess school is starting to wear on him and since he doesnt nap at school (but he lays quietly) he is tired, anyway he climbed on the doctors bed, jumped off, kicked mikey off the stool, was screaming and bouncing everywhere, the doctor actually even hinted at spanking his bottom! eek. then as i went to get zach's viagra from the pharmacy, the nurse took the boys with zach to a near by bench to wait, chance didnt want to, so he continued to get up over and over, and kept being put down on the bench. he got mad and kicked, hit and pinched our nurse! when i came out of the pharmacy he had slapped her in the face.....oh my can you SEE how RED i was and how MAD!?! we had a small bathroom break where we had a screaming match, and he cried, hit, and spit at me....needless to say i did win that one, and he did not only apologize to me and the nurse but also gave her a hug. the scary part for me was the extreme meltdown he had...reminded me of mikeys about 2 years ago.....

sometimes angels are with us though, a neighbor i met briefly and have said hi to a few times, stopped me at the mail box today and we were talking about getting the boys together, she has 2 boys and a baby girl, anyway i was very unsure expecially after the behavior today, so i told her about the boys a bit, turns out...her boys have mood disorders, one is possibly on the spectrum for autism, they have been on the same sleep medications since 3 years old, just like mikey...talking with her was like a huge she is 3 houses down, dealing with much of what is going on in our house, the meltdowns, the quirkyness, the lack of sleep, picky eating. i wanted to just fall down and cry talking to her....but of course i didnt, i enjoyed the adult time and then came back inside feeling like a weight had been lifted. God's plan is always there, we just dont always see it. God is always with us.

i need to ask for prayers for 2 fellow CDH babies, who are both on ECMO right now. Max is finally stable, not progressing, but stable on ecmo and Ireland is going in for her surgery to fix her hernia tomorrow while on ECMO. there blogs are... (Max) (ireland)

please keep their families in your thoughts as well.

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 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 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!!


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