the family

the family

Wednesday, September 23, 2009

tick tock goes the clock

well its been a few days and im sure after this post it will be a few more, we have LESS than 48 hours and Harold will be HOME! our year long deployment is nearly OVER. some days it seems as though he has been in korea for years and some days it seems like its been a few months only...though usually its the first one. i think the appointments with zach and the boys has been a double edged sword....both great in that it helped keep us busy and dreadful in that its exhusting!

in the past year Harold has missed, zach's (real) birthday, we celebrated early for him though, thanksgiving, christmas, new years, my birthday, chance's birthday, mikeys birthday, end of school, summer(for the most part) our 9th anniversary, fathers day and mothers day, first day of school for chance and first day of second grade for mikey, mikey's ARD meetings, parent teacher meetings, at least 2 Echo's on zach, countless EEG's, a MRI of zach's brain...(done on monday to see how the brain is results yet) flu shots for the boys last year, about 6 RSV shots for zach last year, all the genetic appointments, ETC....i could go on and on. but its finally coming to an end!

this week has been eventful for Zach, he tried some new foods, though its a fight to get him to take it, he is doing better, he tried lime, applesauce, hot sauce, blueberry baby food, peaches baby food, spegetti o sauce, pickle juice....the ones he seemed to like best? pickle juice, lime,hot sauce.....hhhmmm? crazy.

Zach has been spending more time in his baby walker...the normal kind every baby has, and today he took steps both back and forwards in it!!! im THRILLED! it was only a few, and could have been a fluke but no matter, were doing the happy dance here!

Our ECI developmental therapist has asked us to be the family that they interview (apparently this is a yearly thing they do to train and learn from??) anyway we are going to go to their office in oct. for a interview on Zach! the therapist said they were talking about it at work and she was so excited and asked if she could suggest a family....we feel very honored and excited. any time i can show zach off is a wonderful experience. him babbling or trying to walk in his walker is like mozart playing music! its amazing. so ill let you know more about that when we do it.

Zach has FIANLLY shown us that he can place an association with an spoon goes in mouth, blocks stack up...zach likes PILLOWS!(who knew) he gets happy and reaches for the pillow, lays it down on the floor and then moves himself to lay on it.....he has done this at least a dozen times in the past 24-36 hours, so its not a fluke. we have even given him choices in the pillow and a toy and he picks the he clearly knows what he wants.

i was able to attend a autism meeting last night and lucky enough that a author of some children's books on autism was there, she read some of her books and took questions. i asked her about mikey hiding under the desk at school and she told me that he was looking for a sensory need to be met, and suggested a few things...a cap to wear, a jacket, a weighted vest, or weighted blanket...since i dont have most of these i sent him to school today in a long sleeve shirt with his school uniform shirt on top and a hoody jacket on and when i picked him up i asked how his day went and he told me he didnt need to go under his desk!!!! WOW! so im very happy with this. we will try again and hopefully its not a fluke.

well i have about 42 hours left before he will be home, and i will be sleeping about 12 of those hours, so that leaves me about 30 waking hours until we are a family of 5 again!:)

Thursday, September 17, 2009

sweet zach

holding you as night approaches, you cant talk, not verbally....but you TALK to me, the subtle sighs, your sweet like the cuddles...almost as much as me. your hand rests in its most natural spot....curled and twisted in your mouth as you flick your tongue and grind your teeth. the squeak and chatter of your teeth the only sound i hear, then you look up, almost as if by instinct...and out comes "gaga-ggagga" you smile and rest your head on my shoulder. without wasting a second your back to clacking your teeth together. your eyelids getting heavy, your breathing more steady, its nearly night time and soon you will be laying in your crib, for now we rock in silence....other than you clacking teeth, and i soak up your love....goodnight zachy-poo

Tuesday, September 15, 2009

neuro followup

Zach had a good visit with the neuro, for once he impressed me...the neuro not zach, zach always impresses me!!:) he talked in depth about concerns and actions to take and what we were already doing to improve zach's development. now i dont know if its because i brought backup...our nurse...or because there was a resident in the room, but the visit was nice. we have a new MRI scheduled for the 23rd and hopefully zach is well enough for it then. we are hoping to be able to see what is going on with the the atrophy is, what areas are affected, how the myelin insulation coating in the brain is, and hopefully we will be able to have a better picture of what to expect from zach. he did say that a good predictor for walking is that the child can sit on their own by 2 years old....zach can, so he said that is a good sign and that walking should occur, just later than the norm. were hoping to learn from the scan about zachs cognitive ability, how he might learn and ways to help him.

i recieved a phone call from the peds clinic on post today, they are starting RSV shots in oct, so zach will again be getting those, 1 time a month until around april. poor guy he hates those shots, but its better than the virus any day....

zach is making improvements with the oral steriod and feeling better:) hopefully by the weekend he is back to himself!

Monday, September 14, 2009

a moment of silence....

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:)

Sunday, September 13, 2009

well i set up my blog to post from my phone but i dont know if its working im trying it out and hopefully will work. would be awesome way to update

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/ 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 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....

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.


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