an icon of my early teen years has passed away. Patrick Swayze died at 57 years young...after a 20 month battle with cancer. remembering those touching scenes in Ghost, its very disheartning. back in 2005 i was lucky and blessed enough to meet him, and his beautiful wife Lisa. They both came to fort hood to do a small meet and greet thing and promote the movie, One Last Dance, i sit staring at this picture of them both from the movie, with the signatures, sad to say, i have yet to see the movie...and yet the title has such a new meaning now. i hope that all of Patrick and Lisa's dances were with as much Grace, Love, and Faith that they appeared to be. its yet another reminder to Dance your best Dance....we cant control when our last dance will come. ....God Bless Patrick Swayze and his wife Lisa Niemi.
Zach had a pulmonology appointment today, i was actually fearing that we may be sending zach into the hospital for a short time, his poor chest is rattley, stuffy nose, requiring more o2, crabbier, coughing and just gunky sounding. Praise God when we got there, instead of sending us off to the PICU the doc was pleased to see that even though he is sick, he is dealing well with it! i guess this is a sign that Zach is indeed growing stronger. i have also come to the conculsion that it wont matter how strong he grows, any fever, any cough and i will instantly fear for him respitory wise. so in the end zach came home with more oral steriods and xopenex breathing treatments to get him "over this hill" and had a cheerful afternoon. tomorrow zach will see neurology, this appointment has me on pins and needles, more so i guess with just the hopes of having some sort of answer, i want to know what areas of the brain are affected with the atrophy, i want to know if the neuro predicts that zach will talk, walk....I KNOW he WILL do this and more so i guess it shouldnt matter so much to hear it, but it does. i think i can handle any answer...because i KNOW zach, and i know he wont let anything hold him back....but i dont think i can handle going in and the doc skating around the questions again...
ill update more after the appointment:)
the family
Monday, September 14, 2009
Sunday, September 13, 2009
Thursday, September 10, 2009
utter chaos...the "norm"
well life has continued on being crazy. chance went back to see the doc on tuesday, got some antibiotics since he was having fever still, he stayed home tuesday and wed. on wed. we took zach in to see the doc..he wasnt acting right and had fever and a small cough. he had a xray done that looked a "lil congested" he was also put on antibiotic. in betweeen all of our chaos....there was a huge scare at the schools....apparently a ex-airman who had gone a lil wacko decided to start shooting, he was very close to 4 near-by schools, though he himself was at his house. the schools were put on lockdown, where no one could come or go. the boys school wasnt one of them, but no more than a mile away from the craziness. talk about a heartattack, just thinking a shooting or such could happen, scary! i do partly feel that these have been signs that i need to look into homeschooling, there are many plus' that i can think of and only minor negative's the biggest negative i guess is completely selfish on my part......the boys would be here with me 24/7....how do you moms deal with that? i kinda like a break every now and again.:)
so today was proving to be a less crazy day, but that changed very quickly, our day nurse trained two new nurses that will be doing a few shifts for us, so today we had michael jordan and j-lo here (really that was his name....but hers was joilie lopez) still i couldnt help but crack up at the thought of their names. :) they both seemed very nice, j-lo will be here fri and sat night, we have extra night hours this week since our night nurse called out on tues. and michael jordan will be here for the daytime weekend shifts. aaaawwww some rest! at 10 am i had a phone call from the dental office for the boys, i have been trying to re-schedule their dental visits since the day they were suppose to go was going to fall on or very close to when dad would be home.well as luck would have it.they had 2 openings today, so i rushed to get boys from school and mikey got his bottom 2 vampire teeth removed (just not enough room for all his teeth in his small mouth) and chance had 2 fillings done, unfortunatly for chance with his anxiety and fears they had to do a much heavier sedation, he recieved a oral sedation an hour before the procedure and then he got the "funny gas" injections to numb area and demerall in the end..the assistants were stunned that he wasnt asleep with the sedations...he did however take a small nap in the van. :)
for as long as i can recall zach has looked excitingly at a area in the living room, sometimes it is actually hard to direct his gaze to another direction...the area doesnt have much...a dvd rack....and the endcap of one side of the entertainment center. we have joked that "his special friends...with wings" were there playing with him. i suspect his friends are a few of the very Heroic babies that chose wings over feet born with congenital diaphragmatic hernia. i had some photos developed at walgreens from my digi cam, and in one of them you can clearly see 2 orbs...right near the spot that he always looks at.....wow hu? those babies are amazing, they have watched over zach and entertained him so much:)
tomorrow is Friday!!! wahooo!!!! looking forward to it, also its 9-11, the anniversary to that horrific disaster...please keep your thoughts with those families
so today was proving to be a less crazy day, but that changed very quickly, our day nurse trained two new nurses that will be doing a few shifts for us, so today we had michael jordan and j-lo here (really that was his name....but hers was joilie lopez) still i couldnt help but crack up at the thought of their names. :) they both seemed very nice, j-lo will be here fri and sat night, we have extra night hours this week since our night nurse called out on tues. and michael jordan will be here for the daytime weekend shifts. aaaawwww some rest! at 10 am i had a phone call from the dental office for the boys, i have been trying to re-schedule their dental visits since the day they were suppose to go was going to fall on or very close to when dad would be home.well as luck would have it.they had 2 openings today, so i rushed to get boys from school and mikey got his bottom 2 vampire teeth removed (just not enough room for all his teeth in his small mouth) and chance had 2 fillings done, unfortunatly for chance with his anxiety and fears they had to do a much heavier sedation, he recieved a oral sedation an hour before the procedure and then he got the "funny gas" injections to numb area and demerall in the end..the assistants were stunned that he wasnt asleep with the sedations...he did however take a small nap in the van. :)
for as long as i can recall zach has looked excitingly at a area in the living room, sometimes it is actually hard to direct his gaze to another direction...the area doesnt have much...a dvd rack....and the endcap of one side of the entertainment center. we have joked that "his special friends...with wings" were there playing with him. i suspect his friends are a few of the very Heroic babies that chose wings over feet born with congenital diaphragmatic hernia. i had some photos developed at walgreens from my digi cam, and in one of them you can clearly see 2 orbs...right near the spot that he always looks at.....wow hu? those babies are amazing, they have watched over zach and entertained him so much:)
tomorrow is Friday!!! wahooo!!!! looking forward to it, also its 9-11, the anniversary to that horrific disaster...please keep your thoughts with those families
Sunday, September 6, 2009
signs from God
this is kinda a twist off the previous post i just made, but ive been contemplating things the past few days, and i wonder....are they signs? or just a series of events that took place?
when i was little, i played with Barbies, like most girls do, i LOVED my barbies, i would play for hours. many of the times i would play with them i would have 1 who was disabled...either i would break a leg off, or i would use their shopping cart as a "wheelchair", im not sure why i did this. was it a sign from above to get me ready for a disabled child?
as i got older i would watch the shows with differnt kinds of people...down syndrome, blind, deaf and was extremly intrested in these. i would read medical books for fun, learning all the different diseases and disorders, and ive loved the medical shows on TLC since i first saw one. if you would have asked me 10 years ago if i had a baby with a disability would i terminate the pregnancy....the answer would have been the same as it is now, no. did i somehow KNOW that my life would be transformed by a "special" child? im not sure but its something to think about.
also growing up i was at least in my heart very close to my grandmother, we didnt live close to her and i can actually only recall seeing her 2 times i think, but i would talk to her on the phone sometimes and she would always send christmas and birthday gifts, usually something not worth more than $2, she didnt have much money and gave what lil she did have to her 12 kids and their families. i remember my favorite gift from her was a pink comb. nothing special but to me it was. i loved her. i love her still. grandma had a massive heart attack 10 years ago this december, she lived thru it but not for long. when she had her heart attack i was in swimming practice and i remember being in awful pain in my chest area for a few minutes, it came on sudden and i couldnt move. somehow i think this is linked. i always admired my grandmother for many things but her stregnth in caring for one of her youngest kids, who in her teenage years became very ill and stopped walking and talking and eating, she has a feeding tube and is bed bound...the doctors say she is brain dead, but she isnt, she knew who grandma was, she knew where she was. before grandma died we all got to see her, her final request was that someone take her younger daughter to live with them and not send her to a institution. once that was settled grandma passed quietly. joy kay is my aunt who is bed bound and "brain dead" she cried for weeks after grandma died...but how can she if she is brain dead? growing up i heard stories of joy kay and now i wonder...was she/is she in my life (though i havent seen her but 2 times i think) as a way of preparing me for the future?
something to ponder on....
when i was little, i played with Barbies, like most girls do, i LOVED my barbies, i would play for hours. many of the times i would play with them i would have 1 who was disabled...either i would break a leg off, or i would use their shopping cart as a "wheelchair", im not sure why i did this. was it a sign from above to get me ready for a disabled child?
as i got older i would watch the shows with differnt kinds of people...down syndrome, blind, deaf and was extremly intrested in these. i would read medical books for fun, learning all the different diseases and disorders, and ive loved the medical shows on TLC since i first saw one. if you would have asked me 10 years ago if i had a baby with a disability would i terminate the pregnancy....the answer would have been the same as it is now, no. did i somehow KNOW that my life would be transformed by a "special" child? im not sure but its something to think about.
also growing up i was at least in my heart very close to my grandmother, we didnt live close to her and i can actually only recall seeing her 2 times i think, but i would talk to her on the phone sometimes and she would always send christmas and birthday gifts, usually something not worth more than $2, she didnt have much money and gave what lil she did have to her 12 kids and their families. i remember my favorite gift from her was a pink comb. nothing special but to me it was. i loved her. i love her still. grandma had a massive heart attack 10 years ago this december, she lived thru it but not for long. when she had her heart attack i was in swimming practice and i remember being in awful pain in my chest area for a few minutes, it came on sudden and i couldnt move. somehow i think this is linked. i always admired my grandmother for many things but her stregnth in caring for one of her youngest kids, who in her teenage years became very ill and stopped walking and talking and eating, she has a feeding tube and is bed bound...the doctors say she is brain dead, but she isnt, she knew who grandma was, she knew where she was. before grandma died we all got to see her, her final request was that someone take her younger daughter to live with them and not send her to a institution. once that was settled grandma passed quietly. joy kay is my aunt who is bed bound and "brain dead" she cried for weeks after grandma died...but how can she if she is brain dead? growing up i heard stories of joy kay and now i wonder...was she/is she in my life (though i havent seen her but 2 times i think) as a way of preparing me for the future?
something to ponder on....
tis the season
the flu and virus season that is...bleh! i was becoming nervous with the boys in school and have even slightly considered taking them out of school so that not only would they be healthier but Zach as well. i have debated for years with doing a bit of homeschooling but never went further with the idea, about 4 years ago i met a neighbor (funny how God places you with people you need) who was a mom of a adhd son who homeschooled him, at the time mikey wasnt even of age for pre-k so it wasnt really even thought about. this year the neighbor i have that i mentioned in the last post, who has the boys with the similar issues as mikey and chance, also has started homeschooling this year. sometimes i wonder if im not being given signs? so anyway last week i was really becoming anxious at the thought of the boys getting something and bringing it home, and on Friday morning at 2am i was awoken by chance who was gasping for air, making seal barking noises (croup) and freaking out, he was flailing on the floor, i tried to give a breathing treatment to him and saw that it wasnt helping any, his lips were turning blue and i called 911 for help. he was transported to the hospital at 220am and given another breathing treatment, poor guy had thrown up on himself and was so out of it. he was given a IV with steriod medication and monitored for 4 hours, this episode was much worse than the others ive seen in the past, and he was nearly admitted to the hospital:(. so again i wonder...was this a sign? i dont want to jump the gun, and i dont want to ignore God if he IS trying to talk to me. just not sure.
Chance is much better now a lil hoarse sounding but doing well. ive been cleaning up the germs, mixtures of vinegar, tea tree oil, lavendar oil and rubbing alcohol
Zach seems to be doing well, he is happy of course as always and cheerful. he is such a strong lil guy. i ran into a resident who was at the PICU where zach was for training while we were at the ER, he actually works at the ER, we were loading in the van and he rememberd us, said he and others still talk about zach, its always such a nice thing to hear, that he has left an impression on people.
Chance is much better now a lil hoarse sounding but doing well. ive been cleaning up the germs, mixtures of vinegar, tea tree oil, lavendar oil and rubbing alcohol
Zach seems to be doing well, he is happy of course as always and cheerful. he is such a strong lil guy. i ran into a resident who was at the PICU where zach was for training while we were at the ER, he actually works at the ER, we were loading in the van and he rememberd us, said he and others still talk about zach, its always such a nice thing to hear, that he has left an impression on people.
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 feeding...an 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 relief...here 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...
http://clairegriffinsblog.blogspot.com/ (Max)
http://lovingourirelandrose.blogspot.com/ (ireland)
please keep their families in your thoughts as well.
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 feeding...an 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 relief...here 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...
http://clairegriffinsblog.blogspot.com/ (Max)
http://lovingourirelandrose.blogspot.com/ (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 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!!
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!!
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