the family

the family

Friday, August 29, 2008

home sweet home

well were home...Thank you God! each time we enter the hospital it gets a lil shorter and zach is a lil stronger, Thank you God for allowing this to be the case and for allowing us to be home. each time were gone from home i appreciate things a lil more and long for the comforts of home. my apologies for the last post, as the feelings were pretty raw. so as i said were home...we came home on the 28th at 6ish? we still dont know results of eeg the neuro was busy, and with the holiday weekend they decided since zach was back to baseline we could go home. im hoping by tuesday to know the results. i know at least a few occasions zach did have spikes noted on the eeg...does this mean there was a seziure? i have no idea. zach is back at 1 litter oxygen and satting perfectly. he was slightly cranky today and i think its due to his first tooth coming in:) poor guy:(. zach turned 10 months on the 26th....the day we went to the hospital. while in the hospital room i did lots of research online and reading others blogs, mainly special needs moms. this is both good and bad. in some cases to see their stregnth and grace is comforting and inspiring to me and in other cases as im reading i cant help but think, yea this could be us in a year or two or more. i know i cant controll what the future holds for zach and our family. i know that i have to have faith that God has a plan, that he has created zach exactly the way he wanted to, and its not for me to understand. maybe he wanted to show everyone around him that God does exist, that miracles do happen, whatever his reason i have to keep faith. this is something i will struggle with at times im sure. every day with zach, no matter how it is, is truely a gift, and one i need to cherish every second.

Wednesday, August 27, 2008

knowledge is power but ignorance is bliss

forgive me if this isnt coherant (sp) its 1240 am and im tired but cant sleep, the respatory therapist is in the room here now giving zach a breathing treatment, zach is snoozing away with his eeg head wrap ever so slowly coming off. he has been hooked up for 9ish hours now....its suppose to be a 24 hour test, though im just not thinking he will make it. last time the 24 hour test was reduced to 18 hours.

sometimes i think of all the medical jumbo-crapology ive learned over this past year and wish i hadnt heard of it, but of course just because i wouldnt have heard of these terms doesnt mean they wouldnt have occured....zach had congential diaphragmetic hernia before we had heard of it, and of course he occured everything else prior to ever knowing about it, but of course when i learned the terms i researched and now know far more than id like to on much of this medical terminology. like i said its late and im having a moment, this may end up as a pity post but i will try not to let that happen. tomorrow we should find out results for the EEG. maybe i should hold off posting this until we have the results?maybe, but my gut tells me i already know the answers, why...because of research, and due to this research i also know many many many of the worst case senerios.

if zach does have infantile spasms, given that with his developemental delay (he is still currently on about a 2 month level, i could see this road getting even harder. what if zach just doesnt progress? i havent by any means given up on my precious boy, but what if he is forever young, dependent on us for his everything. what kind of life is that for him? or is it still true with the saying, ignorance is bliss and since he had never known anything else he is content and happy? speaking of content, zach has been the most well behaved baby, he doesnt cry, unless he is in pain, he is content to merely be in one spot for lengthy times, until doing more reading i thought this was merely his personality, i see now its his developmental delay....ugh i hate those words, i want to crush them. so many labels, but they dont change one thing...zach is zach, no matter the label he will always be zach, and we willl always love him, but i wish for so much for him and to think of him not having those things is heartbreaking. were coming upon his first birthday, he cant eat cake...he wont even let a pacifier get in his mouth without unloading the contents of his stomach everywhere, he wont take anything orally, whats a birthday without cake? and its not like he can play in the icing...he doesnt do anything with his hands, he cant sit up, this is completly a bum to me. anyway please pray for no infantile spasms tomorrow on the results and maybe i can move past this grim mood and try to regain some positive outlook.

and Zach said...let it be done now

im writing this from the familiar setting of the PICU at scott and white. we arrived here at 1am this morning, after sitting in the ER at our local hospital from 830pm on. Zach began to desat, dipping to the 50's on his pulse ox, we bumped his oxygen from 1 litter to 2 and later to 3, we deep suctioned we gave breathing treatment and finally got him to 88% then he slowly started dropping back to 80 even at 3 this point we called 911. during this time, zach also had head twitching and later a arching of his back, head turned and arms out straight for a few seconds. i believe he had a seziure. zach is now doing 1 litter of oxygen and satting at 99%. the pulmonologist called the neurologist and they decided to up his seziure medication and to get the EEG a few days early...we are currently 2.5 hours into our 24 hour eeg. i asked the pulmo if the seziures could have caused him to desat and he said yes, and that he suspects thats what occured, so we will wait and see what the results say. hopefully this stay will be even shorter than our last 11 day stay.

Sunday, August 24, 2008

date night

as our time comes close to saying goodbye for a year were trying to enjoy a few date nights, without kids....this is incredibly hard with zach and the boys. so what we managed to do was get the boys to bed and asleep and when the night nurse got here at 10 we headed out for a movie. we drove out to the new theater around here and watched death race, i had no idea what the movie was about but was suprised to see it was very action packed and i was enjoying it. we made it thru about an hour when the film jerks on screen and before our very eyes the frame melts! then it jerks again and they attempt to fix it, only the next frame melts too....needless to say we missed the last 30-45 minutes and we ended up with a raincheck...hhmmm since it was SOOO easy to just go to the movies on a whim im wondering how long it will be before we can try again. sigh. thank goodness for redbox dvd's, they rock! how easy is it to drive up get a dvd and then drop it off the next day.

we spent a majority of the weekend doing projects to the house, we finished painting the boys bathroom, just need minor touchups and we started painting our bedroom, nearly 2 walls done now, we bought boards for the attic to add things for storage and enjoyed hanging out. tomorrow is mikeys first day of school and he is semi ready, we recieved a postcard from his new teacher yesterday, how sweet that was. mikey picked out his uniform for tomorrow, he wants the red shirt, and pants not shorts. we bought him 5 shirts and 2 shorts and 3 pants for now, we will add as we need to, but this will get us a week each time. he has batman shoes and a batman lunch box, he is very excited about that.
chance also believes he is going to school, he got a backpack, some new clothes adn a lunch box too, he however will be having school here at home, we bought some workbooks from dollar tree for him to do some letters and numbers and such, he is already ahead of what pre-k requires in that he knows all shapes and colors, and many of his numbers and can count to 20 i think the small school we can do at home will give him even more of a edge:) for next year.
im hoping mikey feels more comfortable this year with the new teacher adn can come out of his shell a bit and not be so shy when it comes to showing the teacher he does know his stuff. last year the teacher was concerned saying he shouldnt go to first grade, but other than having some very real difficulty with his reading he is ready, i think the reading issue is his attention span on this, that darn ADHD, im hoping his new schedule of ritalin will help.

good for the soul

The Special mother

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard.
He's used to profanity."
Finally he passes a name to an angel and smiles.
"Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience,
or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today. She has that sense of self and independence
so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that.
This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occassionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

by Erma Bombeck

Saturday, August 23, 2008

and it starts

today started off well, i had extra sleep, kids werent fighting and then WHAM out of nowhere came this brick wall that my heart slammed into....i thought to myself where did this come from? why wasnt i prepared for it? i thought i had many more blocks to travel before coming into the area of the brickwall, instead i hit it fast and furious, or did it assult me? you see i was eating breakfast with harold, the kids, zach and my mother in law, and we were talking about zach, how quiet and good he is and of course how cute. and we were talking about my sister in law, as they have a new baby who is 6 months old, healthy and fine, and we were talking about his developments, as i enjoy hearing about his progressions to a point..when its to the point we are comparing zach with any other baby id rather end it there, but anyway were talking about it and my mother in law brought the brick wall up, i didnt see it coming, so you see i couldnt turn or dodge it. she told me she talked to my sis and bro in law and told them not to bring up their babies developemental progresses to us unless we ask, so that we arent feeling bad. it seriously felt as if id hit the wall going 90mph and no airbag caught me. i felt as if zach had been singled out, i felt the "looks" "talk" already begining. ive noticed in the past week or so with all our appointments having zach out in the public more, were getting looks and we always here people "awwing" but not a new baby, like "aw you poor thing" and it rips my heart each time to hear that. i actualy had one lady stare and tell me she was so sorry...i had so many emotions at that time, anger,embarassment,sadness,and i was just in shock. i know she ment well, as she was a mom herself. i dont know when the feelings will get better, or if this is the begining of whats in store. will we always face this? will we ever be able to steer away from the wall and overcome the obsticals?
friday zach had his neuro appointment, long story short, mri couldnt rule out or rule in cerebal palsy, doc tested muscles and said they were floppy and that this could be a factor, his history also, and that basically it "could" be cerebal palsy, but he wants to wait 6 months to see before diagnosing. i took the news okay, i think mostly cause i suspect it anyway. im trying my hardest to think of labels as nothing more. to always see zach as the whole picture and not let it be clouded with labels...but its hard. we also touched base on the fact zach could have infantile spasms, and if he does we should notify the doc quickly, i researched at home and it reminds me alot of what we see in zach...but are his just weird jerky movements or soemting more? i feel so helpless in all this at times. im always told how "strong" i must be or such things, and i dont always feel strong, i know i dont want to be strong always. i feel weak much of the time. just trying to stay afloat in a ocean of waves. i recently became a medicated mommy, after a lot of struggle with emotions and moods that i cant control on my own, after almost a week i can finally say, i havent cried in almost a week. i know there will be moments and a pill isnt a cure, but life has been rough and i needed help...that was a very hard thing to admit. truethfully other than a few months here and there ive struggled with this for a few it was time. im hoping a medicated mommy=a happy mommy.

Monday, August 18, 2008

ready set sleep

need to be going to bed, tomorrow is a full day. i have a 745am appointment and have to leave the house by 7...eeek. and then i have a much needed appointment for myself...wish i could say it was for the spa, lol but still maybe ill be able to deal with my moods better. i think zach has eczema:( had a rash on his forehead last week, and now its on his trunk. dry, red bumpy, seems to itch him. this bites too cause we use no dye laundry detergent, he uses either california baby soap or dr. bronners soap, and burts bees lotion...thats it. so we will see, but poor baby isnt happy. boys are in bed and im about to shower and hit the bed myself, ill update more later. night

Sunday, August 17, 2008

weekends over

well we had a pretty nice weekend, i was able to check my mood and stabilize it long enough to really enjoy ourselves. we finished the first color paint in our guest bathroom, WAHOO!! and did some cleaning. more importantly though we hung out and enjoyed. last night once the kids went to bed we went out on a "date night" we had zach's nurse here who didnt mind, we drove out to mcdonalds, lol to get drinks and then down to a new strip mall only to see it all closed:( so we went to walmart and i decided it was nearly midnight and i had a chance to be evil in walmart....bad i know. we took pans and dishes to the clothes sections, took bedding to the kitchen area, and tried to take some unmentionables (condoms) and put in others buggies....but no such luck. lol either way we had a blast there for about an hour, and kid free, it was great.
as the time ticks by i know our time grows closer and part of me panics, and part of me is mad and upset. so it was so nice to be able to let loose and enjoy. we made a cake last night and enjoyed the yumminess of it. this week i have yet more appointments, tuesday i have one at 745am and friday i have one at 845am.and an meeting a new nurse for zach.

Tuesday, August 12, 2008

rough day

man this was not the day i had hoped not sorry to say its ending either. i woke up to my momma dog dead in her cage...and one of her two surviving pups dead with idea what happend...was she sick? did she have a pup she didnt deliver? i dont know. the pups were really small this time and still the first 3 died before we could intervene as they suffocated:( so i tried to nurse the pup, kept the last one in a warm box in a warm room fed it, every two hours, rubbed it as she would with her tounge....and still it died tonight. all 5 pups dead. chance was heartbroken....were all upset.

at 930 i left the house today for an appointment for chance with the behavior therapist, ended up getting both boys seen at the same time. adderall wasnt working for mikey, so he is on ritalin 2x day now and since the blood pressure medication wasnt working to help him sleep they put him on a antidepressant....(gave it to him at 7pm its now 10pm and he is STILL AWAKE!)
chance has been throwing major tantrums for awhile and being violent...of course he showed up today and the doc saw...the doc said i was MUCH more patient than he would have been with him...chance was nuts, kicking mikey, screamin his head off, crying, kicking the couch, pinching me, i just kept redirecting him...nothing helps when he gets like this...just time. and sure enough about 5 minutes into it, he came to me and told me he loved me and he was sorry and hugged me. then he was laughing and playing again....ugh! so the doc said he definatly has some anger issues, but hasnt labled him yet...gave him ritalin 2 x day also for that and to help calm him as he is quite busy too. he also gave him the same antideppresant for sleeping...luckily it worked on him, he is out cold. we have those "fits" of his many times a day, no matter where we are, its embarrasing as i know people are wondering why i cant make him mind...i hope we get some relief with the meds. im tired.
we spent 2 hours in appointment and an 1.5 hours in pharmacy! needless to say i was happy to leave!
tomorrow we head up to temple again to get results from zachs head ct....wish us luck. im ready for a GOOD day!

Sunday, August 10, 2008

feeling blah

lately ive been having some mood issues, i just feel blah and i know there are many factors to contribute...hormones, stress, lack of sleep, but i also know its coming from some negativity ive been getting, and not on purpose by any means. family...they mean well...right? they worry about things to the wrong extent...they force their concerns on me, as if i dont know the worries and the stressors, i dont need to hear them again. i dont need to hear how someone thinks i cant handle the kids on my own for a year...hell ya i dont think i can either...but i will, what choice do i have? and of course i dont want zach back in the hospital, but what can i do if it happends? be by his side as much as i humanly can. so i brush their worries off, i force mine down and im left feeling blah. (john and kate plus 8, where are you???? i cant find the tv show on tv to cheer me up) with everything thats gone on the last year ive had to look at life with my glass half full, there is just no other way to survive.

i worry bout what the doctors will say about zachs last head ct, will the blood be back? will he have more brain damage? will they say the words cerebal palsy again? will they say something worse? what will the outcome be? i look over at my angel sleeping in his swing now and think "brain damage"? just isnt fair, isnt right. ive noticed i look at other babies in stores with new eyes, i see how fragile they are, how helpless and how powerful in the same sence. i regretfully also have resentment, i would NEVER want a baby to suffer or to go thru even a portion of what zach has, or the parents for that matter, and yet i wonder "why zach?" i know God has the answers and only he knows the plan. we have to just believe zach will make a full recovery and will lead a normal life, some days are just harder than others. i look at pregnant ladies now and see the obliviousness they have, its hard to think back and remember being the same way, thinking nothing could ever happen to us, it seems like so long ago now.

well ive rambled long enough time to get dinner going and go check on sleepy head zach. the weekend wasnt long enough, but i suppose it never is.

Saturday, August 9, 2008

mood lifter

some days when the stress is great and i feel down, i watch " john and kate plus 8" on TLC, i mean cmon...6 kids that are 2 and 2 that are 6years...yea they got stress! so it makes me feel better. some days i read this...

Welcome to Holland

by: Emily Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared the unique experience to understand it, to imagine how it would feel.

It’s like this... When you’re going to have a baby, it’s like planning a trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum Michelangelo’s "David". The gondolas in Venice. You may even learn some handy phrases in Italian.It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland". "Holland?!" you say. "What do you mean Holland? I signed up for Italy! I’m suppose to be in Italy! All my life I have dreamed of going to Italy"

But there’s been a change of plans. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. You must learn a new language. And you will meet a whole new group of people you would have never met.

It’s just a different place. It’s slower- paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say "yes, that’s where I was suppose to go. That is what I had planned. And the plan of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

a pick me up

some days for a pick me up i watch "john and Ka

Tuesday, August 5, 2008

sleepy day

its been a busy week, i guess its not too bad, our nursing hours have changed, so we only typically have a night nurse now, but thats the best time for one i guess, cause zach gets lots of meds at night...7pm, 9pm, 11pm, 3am and 5am. but i miss the day nurse for the errands and doctor appointments, its okay though once we get it all settled out with insurance we will be okay.

i was just thinking today how far we have come. hence the pictures, before zach was born, at one day old and one about a month ago..i need to download new pics i know.... i took zach to the doctor with us today... no nurse, it was an appointment for chance to check on his asthma, and anyway after that we went to buger king to let the kids play, and eat, i was starved. it was a nice outing, zach was well behaved and things were going really well....then we had an embarrassing that the right phrase? maybe awkward is better. anyway i picked zach up and was holding him when his medicen port that was still attached to his gtube from his belly popped biggy and it didnt hurt him at all, but another mom pointed it out and was like" um you dropped a part" yea a part, i wasnt sure weather to laugh or what, how many moms can say they dropped a part from their baby? she was very polite and very nice about it, but it was awkward.

school is coming up soon! mikey will be in yet another school...but hopefully it will be good. he is going into 1st grade! my big boy is getting bigger and bigger. i still have to finish getting supplies and uniforms...yep he is going to a school where they have uniforms this year..bleh? i hear it may be a good thing, guess we will wait and see. mikey seems semi ready, i am and im not. i missed so much of his kinder year due to being in houston with zach, it just doesnt seem like he should be in 1st.

the boys are doing well, they arent fighting too much, but they arent listening great either. im just happy to be home, having a new appreciation for home life, for life with all my boys and just hoping to be able to stay home with them all for a long long time......until i choose to leave them for a day at the spa.....wink wink.

time to finish dishes and laundry, if your reading this and you have a lil one, go hug him/her a lil harder and appreciate your time with them, we never know how long we have, be thankful for healthy happy kiddos and love on them a lil more.


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