the family

the family

Sunday, December 27, 2009

welcoming 2010

well Christmas has come and passed, hard to believe we are embarking on a brand new year already. Christmas was wonderful, Santa was VERY nice, and went a bit overboard in every aspect, but thats okay, this was our FIRST christmas together at home since Zach was born, christmas 2007 was spent in houston at texas childrens hospital, 2008 the boys and i were home but Harold was in korea, so it was VERY nice to have everyone home. especially since Zach was hospitalized only 5 days prior, we got very lucky that he was released after only a day's stay. i think its times like that that remind us not to get to comfortable with our health. not to take it for granted.

Zach was taken to the er on sunday morning with a 105.5 fever, he was then hospitalized, the flu test they ran came back positive, so they were treating him for the flu and pnemonia (once he was released and we had a follow up we learned much different news) at the follow up his pedi informed us the backup test done after the rapid flu test was negative, so zach didnt have the flu, he also didnt have a new case of pneumonia...but looking at his discharge note we learned he DOES have an infection, his white blood count was at 20 thousand, but no bacteria was found in his urine or his blood...once again zach was throwing us for a loop. the same day we had a ENT appointment, the doctor had NO bedside manner, never took in consideration ANY of zach's other health concerns, but wanted to immidatly do surgery on his ears to release the fluid and pressure, said that could be the cause of his infection. with this information we went for a second opinion, have an appointment on jan. 7th, im sure he will need tubes, but we needed to have a doctor who works with zach's other specialists, such as his pulmo, cardio, etc. and so we needed to put the surgery off for a bit. he has been a trooper though and hasnt let it bother him much.

Christmas was very nice, we woke all the boys up about 730 and opened gifts, mikey and chance got loads of nerf gun stuff, some wii games, light sabers for wii, light sabers just for play, some transformer stuff and star wars lego stuff. Zach got a small ride on car, some small toy/rattle type things, a wooden sound puzzle, and a vtech story book musical toy, DH got a tool box, a shirt, some fishing stuff to get him started, and a xbox 360. i was also very pampered this holiday (ill bask in it until the credit card bills show up. lol) i got a brand new high speed camera with a extra lense, filter, carrying backpack, an awesome foot spa and a cool mudd purse, for my birthday (yea got the gifts early) i got a awesome burts bees collection of 25 items, and a beautiful wooden cross.

like i said santa went overboard, but i think it was kinda trying to over compinsate for not being together last year. it was worth it.

the new year is approaching, ill be 28 in a lil over 3 days and in 4 days 2010 will be upon us! i have lots of hopes for this year,
~the health of everyone in the family, especially Zach
~get more finacially stable
~more organized
~more quality family time

some of my resolutions are
~ eliminate as many chemicals from our daily lives as possible
~eat less processed foods
~ cook more meals at home
~ work out more at the gym
~ loose weight
~ give up sodas
~ eat less sweets
~ in general, help me and the family get healthier

Thursday, December 3, 2009

emotional post

today has been one of those days where you sit and reflect on things even though you maybe shouldnt. one thought that keeps passin thru my thoughts...when did life get so complicated? what happend to the simpler times, the carefree times? i try but cant even really recall life BEFORE, before the specialists, before the diagnosis', before the medications and surgeries, before cords,braces, and equipment....

on most days this is fine, on most days his lil smile and happy go lucky self is enough to snap me out and make my heart smile too.... today however isnt a day that falls into the better list.

over the holiday we had visitors, inlaws (i want to say its not my family...poor hubs has to take the blame for having them as family) anyway our inconsiderate brother inlaw and his family (3 kids) came down to share the wonderful holiday with us, they stayed from wed till saturday, only leaving when we kicked them out...the entire time they were here, their kids were sick (they know how we feel about having sick people near zach, we asked them many times to get their kids away from him, to wipe the snot from their kids nose, to get their kids medicen) saturday zach began to act a bit "off" so they were asked to leave....however this was only a small part of what was to come, by sunday zach's oxygen requirements went up, he began coughing and a small fever crept up...

by monday he had a fever of 103.7, and was on 1.5 litters of oxygen, 3x the amount he had been on, i called several clinics and the appointment line for our regular pedi, no luck for same day appointments. we fianlly got in with zach's pedi tuesday, we spent 4 hours in the clinic, poor zach had to endure so much, he had labs drawn, chest xray, flu and rsv swab done...the results were 2 double ear infections, both that had ruptured, pneumonia in his right lung...the "good" lung, the chest xray was so bad that the doctor really battled with admitting him to the hospital, the only thing that saved us was having home health nursing. zach recieved a very strong antibiotic injection into his lil legs, and sent us home on oral/gtube antibiotics. zach is recieving lots of chest procussion therapy (CPT) extra breathing treatments, lots of nasal suctioning and is definatly nowhere near baseline, actually on 2 litters of o2 now :( were still struggling to keep him out of the hospital, and im still kicking myself for ever letting "those people" inside, to top it off, we have recieved NO apology, no call from them, my mother in law did call 3 days after he got sick to "check on him" but thats IT! they just not get it? honestly it angers me but it HURTS that people are that self centered that they cant see beyond theirselves. they have officially been unwelcomed to come back to our house.

please keep him in your thoughts and prayers to get well soon! i miss my happy little boy.:(

Monday, November 16, 2009

whispers in my head

havent had a lot of time since we started homeschooling to sit and pour my thoughts out....not to say i dont have any to spill out though....that would scare me ...the thought that my brain was on a (gasp) break?? eek....never fear...lots of pointless thoughts are about to be poured out...

so some thoughts on homeschooling, some days i HATE it, i HATE not having ME how selfish is that? seriously...i mean is that REALLY something that should bother me? well it does. i want to be able to sit and watch tv, to surf the net, to go shopping with NO kids in tow....
and then i sit back and take another look around and realize that THOSE small wants cant compare to what the boys AND me are gaining. the boys ARE listening, were gaining family time, were gaining learning experiences everywhere...and in the long run were gaining time...time thats not wasted in school lines waiting to pick them up, time not wasted in traffic coming home, time not wasted waiting to go places when school is on break. we arent tied to any schedule, but what we make. i find that i put more expectations (stress) on myself than probably anyone else would...this is good i guess...keeps me accountable, helps me stay on target for teaching the boys. ive been using our library like crazy checking out books on homeschooling for me, crafts, activities, books that help with science, social studies...its amazing what resources they have. its endless.

Zach has been doing wonderful with his crawling and exploring, IF you can get him motivated he is GONE. he LOVES to kick/hit our entertainment center, chase wipe packages down and play with paper. he still isnt much for real toys, but slowly he is exploring them. he is such a joy, and we are so blessed to have him, for the most part i can always look on the bright side, but there are occasions that i just want to scream! i mean he is 2!!! he should be running playing, saying "no" and "hungry" and so many other words, and he "should" be eating by mouth....a parent shouldnt have to rely on a surgically placed plastic tube in his stomach to feed their child! i shouldnt need a syringe and extension cord to hook up zach's feeding and pour the liquid pediasure thru the tube....what "normal" baby/child hits his head HARD daily to say "im tired"? he leaves marks on his face from this, and just keeps going. some days i want a normal child......but then i have to remind myself...then he wouldnt be zach, God gave us Zach, as he is, perfect in God's eyes, for a reason....and thats an honor, and a true blessing. zach will remain innocent longer than most, zach will communicate with his heavenly friends that he can see and we cant, for years longer than others would, zach will remain my cuddly baby just a bit longer... i know this...and yet...some days i want to scream. in the end, im human, im not perfect and i break....they make a wonderful medication...zoloft, that helps with the anxiety of life...:) this helps the optimism last a bit longer than it normally would....(though im really debating with removing the word normal from our vocabulary).

our christmas deco is partially up...yes its WELL before thanksgiving and its up...there is one is the season of peace and always makes me happy, last week i learned from the hubs that instead of deploying in 2011 it looks like it could be 2010 now...depression hit, only i have no time to worry, or grieve, or any of the next best thing...denial and redirecting my emotions/energy...decorations!!

speaking of army, and deployments, these are the times when i want to lead a civillian life, i want out. hubs has been in for 9 years now...that means WE have been in for 9 years, for many of those years i never thought of life outside of the army...between the last deployment and life with the boys on my own in the past couple years has stainned my view, however it really doesnt seem plausable between zach's medical needs, doctor visits, medical supplies, therapies and the boys medications and therapies and such our out of pocket with most insurance would be insane, and with the economy, its not that its impossible but its definatly scary. for hubs the "safety net" is to stay in. so for now there is alot that i push aside on my "plate", but the army has been good to us, medical wise, housing wise, financially stable for the most part.i just HATE HATE HATE the deployments, the seperations, the strains on the family, on the marraige, on the kids. sigh. enough of that soapbox.

Wednesday, November 11, 2009

bad blogger

yep, i am a bad blogger. lots has happend since the last post. first, Zachy had a wonderful birthday, we celebrated his party on nov. 1st, on oct. 28th, 2 days after he turned 2 zach did the most amazing thing! ZACH CRAWLED! he moved his legs 2 movements actually moving himself. it was so amazing. my lil boy did it! so proud. he has worked VERY hard for that and im just tickled pink!

Zach's party was nice, he had great company, awesome gifts, and some very yummy food thanks to our wonderful friend, Nadine. very much a success.

on novemeber 5th a tragic event took place here at fort hood, a army major, who was a psychologist and also a muslim shot and killed 13 people and injured 29 i believe on fort hood. it was a very emotional and scary day,very unreal.

Zach saw his pulmonologist today,the appointment went wonderfully, i was very happy. zach's sat's and lungs were very good. we were able to wean down his lasix (a fluid reduction medication) from 2x day, 3 day week to 2x day 2x week, it may seem small, but just a few months ago we were at 2xday 7x week, so its working its way down. were hoping in about 6-8 months we may actually be OFF oxygen!! that would be incredible. we also had a blood chemistry done today, i guess the results will be back in a few days, this checks his potassium and sodium levels, were thinking we may be able to decrease those medications as well since the lasix is decreased. zach's weight was down again...he has been getting more mobil and using more calories so its normal for him to loose weight, but he needs more calories to help with growth of lungs and such. so zach went from 760ml/calories of pediasure a day to 1000ml/calories a day. he was 24lbs 10 ounces and 34 inches long.

we cancelled his sweat test for tomorrow, it wasnt the correct procedure we were looking for, this test wouldnt determin how well or how much he sweat, but more, how much of a certian chemical is in his sweat to determin if he has cystic fibrosis, and we know he doesnt, what we are trying to determin is DOES he sweat? and if so, how much? ive never seen him sweat. so for now were back to the drawing board.

42 days until christmas! i am already in the holiday mood, ready to put up our tree, ready to decorate, sip on hot cocoa, sing songs and just bask in the season. i love christmas time! i doubt ill be able to hold out until thanksgiving to put up our tree. :)

every year people make resolutions, most never happen, even with the best of intentions, im guilty. my usual is to "lose weight" and trueth be known, i probably gained instead. this year however i want to correct a few bad habits we got into about 2 years ago, after we had zach and we were living at the ronald mcdonald house, we didnt cook, many nights food was provided by various people and we would grab a bite to eat in the food court in the hospital, we did this day in and day out for months, since then its been much easier in my mind to grab food out rather than make anything, i want to break this habit for many reasons, i would love to have a dinner schedule, family time, save the money, try new foods, and im sure it would help to loose some weight. so im going to try to start this resolution now and hopefully it will stick in the new year.

Saturday, October 24, 2009

memory lane

hey Zach i just wanted to sit here and reminiss with you for a bit. 2 years ago today i had a non-stress test, i had been having them 2x week for you, i didnt mind too much though, i got to check on you and i always got a small ultrasound after too, many of those times we got to take home pictures of you. the radiologist who we usually saw would even get us a glimps of you in sure were a cutie(still are)...but on this appointment i was having many contractions, none apparently were of concern, but i did mention it to the dr i saw, i didnt care for the doctor, she didnt listen to me, she didnt understand the pain id been having in my back and hips for the last couple days, i asked her what would happen if you came early and we werent in houston yet....she told me "you still have 7 weeks, but im sure we could handle that situation" i left from her office to the immunizations mission was to get a flu shot, i knew i needed it, i knew i needed it before you came here.

it would only be about 4 hours after that appointment when your daddy took me to labor and delivery to get checked out. this is where the rollercoaster really started. i was in labor....7 weeks 1 day early, at the local hospital...not in houston at texas childrens. i recieved medication to try to slow labor, but it was no use, you had a plan. the doctors scrambled in to get things ready we HAD to go...if we stayed you would have virtually no chance at all.....if we left we had risks...they informed me that being in the helicopter had its own risks...having had previous c-sections there was a risk of placental abruption...this could lead to your death as well as mine possibly. there was also NO room to deliver you if labor progressed in the helicopter. what choice did i have? we signed the release forms and i kissed your brothers and your daddy goodbye and headed to houston. daddy got things squared away here at home as best he could in such short notice and he headed up to houston. by morning Dr. Carpenter had made his decision after having an amnio and finding maternal blood in your fluid...placental abruption had begun, it was time to get you OUT and let you show us what you could do.

two years ago today was my last day being pregnant with you, was my last day of knowing you were okay,. you were long as you stayed inside you didnt need your lungs to breathe, you didnt need to be hooked to a vent. 2 years ago today lil guy you showed us all how things will be done in ZACH time.

so hard to believe you will be 2 TOMORROW! your amazing Zach! we love you so much, and cant imagine life without you. were so blessed that you are so strong and such a fighter. were so Blessed God has blessed us with you, my lil zachy-poo.

Friday, October 2, 2009

fall time

well there has been alot to update on since the last update.....Harold is HOME! he had many delays but did finally come home Saturday the 26th of sept. its been a crazy week adjusting to new routines and trying to establish each others "roles" in the family, but were ironing out the few creases and i think it should go smoothly.

right before Harold came home Zach was put back on antibiotics for tonsilitis, his poor throat was COVERED in pus! yuck! luckily after about 24-48 hours of the med he was back to himself. he is such a trooper and so amazing!

Since Dad has been home zach has been up to many NEW things, he ate 2 goldfish today, they were crushed up, but he ate them:) he dipped his face into his bath water to lick it:) he dipped his hand in the bath and licked it, he licked dad's shirt, the couch and tried to lick one of his toys. he is slowly begining to show signs of crawling, he moves one knee at a time and is slowly getting there, but slow and steady wins the race. he has been spending more time in his baby walker and is now manuevering it back and forth!!! yippie:) we have also discovered that zach hits himself in his head alot to express a need/want...for instance if he is in a chair or stroller and starts, we can say "you want OUT" and he will smile and kick, if he is laying on the floor sometimes its due to a dirty diaper, or wanting to be picked up. finally WE are able to understand a lil...poor guy im sure he was fusterated with us not knowing what he was trying to say.

Micheal and Chance both had parent teacher confrences the other day, micheal's was the worse of the two, his IEP doesnt appear to be in use at all, his teacher even asked me how we decided part of it in the ARD meeting, so obviously that means its not being implemented, or she isnt doing it correctly, then came time to look at his work...apparently math is done in the mornings, and his math book was barely used, she actually asked mikey what he does during math thought was "WHAT do YOU SEE him doing at math time?" ugh. Chance's meeting went better, basically we were told what we know, he is above his peers, he knows numbers to at least 100, all abc's, all colors, all shapes except rectangle confused him, and the letters q and g confused him. she is wanting to try to get him more advanced work. he is a "crasher" and i figured that would be a issue, he does this at home with us, and apparently its a "normal" thing for kiddos with sensory issues, he is trying to "figure out where he is in space" and crashing into things helps him with that. the problem with that in school is, he is disrupting the class, he is bumping into kids, and basically causing CHAOS!

so after a lot of thought, and talk with Harold we have decided to homeschool Mikey, im on the fence with chance....though im thinking it would make more sence to just do them both...they could help each other and kinda keep things more organized that way. so ive gottan a few small workbooks, some good websites, advice from some people and some printouts and we will be starting this probably in the next couple weeks. i have to keep reminding myself its for them, to help with the learning....i personally sure do like my alone time for a bit in the day, but this will be better for them, and maybe i can figure out a way to have a bit of quiet time too.

well im off to bed:) night

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.

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!!

Thursday, July 16, 2009

trying to update

yikes i hadnt imagined it would be so long since i last updated on here. i have ment to update many times and something either comes up or i have writers block. sigh. sadly i still kinda have the writers block but its time to update....

june 1st dad came home for r&r from korea, that was a wonderful nearly 3 weeks. the boys had a blast with dad being home, they played and we went to austin's park where the kids ate pizza, rode gokarts,bumper boats, and played lazer tag.we went to see wolverine with the boys, and we hit IKEA a couple times as well, got lots of cool stuff for the house. their items are super cute:) while dad was home Zach SAT up for the very first time on his own!!! we were so happy. since then he has been sitting on his own constantly, he is able to laydown and sit up all on his own, this is such a huge moment....they say if a child can sit on his/her own before 2 years of age they will most likely walk!!!! well zach did this around 19 months! GO ZACH!!! Harold returned to korea on the 19th and about a week or so later zach said MOMMA!!!! his very first word! im so so so excited. about a week later he said NO, too stinkin cute. we are so incredibly blessed!

this past monday zach had a pulmonology appointment where he did wonderful! we have continued weaning on his lasix and now his potassium and sodium!!!!! yippie yippie. zach has lost a little weight...26lbs 15 ounces, but im sure its due to him being more mobil now. no one was concerned. zach took his oxygen off last week while sleeping and we monitored him for 30 minutes, his saturations remained 94 and above the whole time, even hitting 100, showing he was able to maintain his oxygenation without the supplemental oxygen!!!! today he did even better.....he made it 1 hour and 15 minutes while asleep and his sats were 98 the whole time!! im telling ya he amazes me more and more each day.

today i had to take mikey to see the developmentalist again, we are tinkering with the meds trying to improve his behavior and getting forms for insurance filled out stating that he does has high functioning autism and that the doctor does want him to hopefully get into ABA therapy, so once the form is completed and i get another form done then i will wait to hear back to determin his elgibility. sadly its looking like i will be doing the same steps for chance, i left the papers with the doc for chance too, and we will see what he decides to do. im exhusted with them, i love them to pieces but they surely wear me down. chance constantly kicks, hits and punches me, and has started licking my arms all the time, he always is seeking out sensory imput, crashing into things, jumping off things, he mimicks words and will repeat the words over and over for a very long time, he has also begun to make noises with his mouth, over and over again. all of this may sound silly, but try being in public with him doing these things over and over and not listening to you and people staring in disgust, and while he is doing this, mikey is having a meltdown because chance is too close to him, or annoying him with the noise, so then they are screaming and fighting on top of everything else. its all day, i havent found a trigger yet, so i dont know how to stop it. exhusted is all i can say. speaking of exhusted, we no longer have night nursing thru insurance, zach is doing to well to qualify for it, so though its a good thing, it sux. but id still rather have him doing better than being back sick.

we have about...13 weeks left of this deployment, thats about 91 days. im so tired of the seperation. i want him home to help, to spend time with, to share a life with. and i have already been told sometime after he gets home he will leave again for 2 months for a school i think the school is in s.carolina....blah. oh well, what can i do right?

school will be back in session in about 4 weeks, wow, i still have a lot to do before then. ive begun to get school supplies and socks and underware, i still have a lot to get though. school uniforms for two, lunch boxes, shoes, backpacks and more...for two this year! chance will be going to pre-k at mikeys school, and mikey will be in 2nd grade! wow time flies. well im off to make a grocery list for tomorrow...yippie...not.

Friday, May 29, 2009

summers coming

im still here, for anyone who is reading this, its been a busy timeframe and i just havent had it in me to update. the boys are doing well. Mikey had his ARD meeting at school this week, and i am not pleased with how it went, i feel like his issues were ignored and even though i had documented facts from 2 docs they didnt offer what he needed, i feel like im going to be calling another ARD at the begining of next as of now he is simply staying on his current 504 for dyslexia instead of them doing anything with his PDD/asperger diagnosis, so this means he wont be getting the extra help from the school ocupational therapist for his dysgraphia(handwriting problems) and other fine motor skills, i was hoping he would recieve this in school and he could still continue at his outpatient therapy for his sensory needs...sigh.
chance is doing well, he is so talkative and busy body, i am so looking forward to him and mikey being able to play and get out this summer, hopefully and then he will be going to pre-k!!!!!! yippie. according to the psychologist chance is VERY intelligent scoring in the 97% for 5 year olds, the test was taken just weeks after turning 4....the doc said he was sure chance would be bored for kindergarden when he starts, i had to tell him he will be starting pre-k....oh brother...maybe they will skip him ahead a bit or at least give him some more challenging work.
Zachs reports came in from the geneticist, metabolic screening, negative, thyroid issues, negative, fragile x dna, negative, chromosomal issues, negative, however if the geneticist thinks there is still probably reason the skin biopsy will be done to completely rule out chromosomal problems as not all can be ruled out with blood tests. we go back in july so we will see. zach had his renal ultrasound done, but havent recieved the results just yet, hopefully they came out normal as well.
this is our last weekend before school is out, one more week of school! one more week of mikey being a first grader. wow.
so in between all the normal therapies...mikey twice a week, zach 4-6 a week, and all the doc appointments and errands, i still gotta do the end of school party and whatever else is going on there, so i may not be around for a bit......
happy summer!!

Tuesday, May 19, 2009

ARD meeting and therapies

well its been a few days, Zach seems to be doing much better!! he hasnt had (knock on wood) fever since yesterday morning, and even then it wasnt more than 99, such a relief!! his button leaked some yesterday and just barely today, so that is also progress!! i think it was a bug and its passed. zach is on day 3 of his antibiotics, im sure this is helping as well.
since saturday night we have had nothing but trouble with the oxygen concenrators, on sunday night i got a replacement, only to have it stop working yesterday and again he was placed on his oxygen tanks, today we recieved yet another concentrator, a brand new one, new style, with a pediatric flow meter attached, so i really really hope this one lasts!!

Zach had ocupational therapy today with ECI, he "wow'd" linda, the OT again, she was amazed at his ability to sit, even though today he was doing a very poor job at it....he was too hyper and too wiggly, she said he was doing great. he loves to play "row row row your boat" this is where i sit him up and hold his hands, when the song is sung he rocks himself front to back, its so cute, and it is building his arm stregnth..sneaky sneaky. Zach got to "ride" Rowdy, a inflatable bouncy horse type thing in therapy today, he seemed to really enjoy sitting on it, ll upload some photos soon.

Mikey had his ocupational therapy today as well, this will be his last session until next thursday, thanks to the holiday we will get this thursday and next tuesday "off" so im pretty happy, though it may prove to be a not so good thing, as he wont get the sensory imput he does in therapy, and without this he is more easily aggervated and distracted. therapy has really proven to be a big help for him.

i met with a lady from mikey's school today to discuss the upcoming ARD meeting and to turn in mikey's eval. report from the psychologist today....while talking with her she threw me for a small not up on all the terms of the ARD stuff just yet...if there are any moms here that are, please leave your imput, i dont want to mess mikey out of getting help. she mentioned to me wanting to just label mikey as ADHD and calling it OHI (other health impairment) instead of using the PDDNOS diagnosis, saying that if she used this he would be put into PCCD(?) classes...i asked what this ment she said its a smaller class for kids who arent as high functioning...part of me thinks this is where he needs to be...not that i want to hold him back at all...but i do want him to get the services he needs, and i know he works much better in his after school tutoring since its a more one on one time with the teacher. im afraid if the school uses the OHI term mikey wont recieve much help and if he doesnt get a good teacher wont stand a chance....but like i said i dont know how things work, anyone dealt with any of this before? if it helps we are in texas. thanks

Zach had another therapy this afternoon, this one he was just as wobbly and hyper, he was in such a good mood, it was nice to see. he is trying so hard to crawl, its amazing, his legs know what to do, but his upper body doesnt.

mikey had a school program tonight, he was singing some fun summer songs, and seemed to enjoy himself a lot. the only on who did NOT enjoy?....Zach..he screamed his head off, with tears rolling down his face...the loud noise of the singing, clapping and cheering was too much for him....guess that means no rock concerts for a couple years....darn ;)

i have a small update on Kayleigh Freeman, the "one pound miracle" her parents talk about her memorial service on their latest blog entry and have photos and video they put together, some of the photos are from the wonderful organazation NILMDTS (now i lay me down to sleep) they are beautiful. the faith and will this family has is just amazing, please continue to lift them in prayer!.

our nursing schedule is still a work in progress, the full time day nurse i thought we had already to go, isnt working here, she isnt even doing a day a week at the moment, i dont have a clue what happend. the nurse we have instead for now, im told she wont be a our primary but is filling in, is great, i dont know who will come on as our primary or when. ive actually been thinking the last few days about not having a day nurse, or at least not 5 days a week, maybe something like 2 days a week or less, i dont know. all i know is im kinda tired of guessing who will be here, explaining all of zach's history and his needs/wants, dislikes/likes over and over, when in the end it would almost be easier to just do everything myself. at least without a day nurse i would have my house to myself during the day other than therapies, i wouldnt have to worry about that schedule, just do what i need. though there are times when it is nice to have the help. i dont know, i dont want to make a hasty decision, but by the end of the month if our nursing schedule isnt set in stone i think ill be making some sort of decision on this matter.

our ARD for mikey is next week, please if you have anything to add, im taking all suggestions, things to ask for in his IEP, things not to agree too, i dont want to go in uninformed, its like going to a car dealership alone...they see "female...dumb" and automatically see $$$. Thank you for your time:)

Thursday, May 7, 2009

check this out:)

i found a wonderful site on blogspot, another mom of a special needs child "giving back", i have her listed in my blogs that i read...
anyway the website is...
and Zach is on the page today, we recieved the blanket early this week, its so wonderful, we love it. what a kind donation of love she is doing. please check her page out.

Wednesday, May 6, 2009

austin trip

Today was our big trip, we traveled to Austin to see the geneticist.

First off thanks for all the well wishes on the trip….my worry about the new area….i have no idea why I was worried, once we got there it was a easy find and traffic wasn’t bad…maybe im just having flash backs from our nicu days in Houston, but Austin was a walk in the park!

We even managed to do a lil strolling in the stores and have lunch after. The clinic was great, very kid friendly, toys everywhere and since I had ALL the boys it sure was nice to have them somewhat entertained. The doctor was awesome! We were very impressed with her knowledge, and her kind and caring personality. We had a very deep discussion of both my side and Harold’s side of the family and zachs healthy history, luckily I brought in all of the records I personally keep for zach, as it was helpful to go thru the discharge summaries.

The doctor was quite shocked that during our nicu stay at s&w we didn’t receive a lot of the imaging, and things she thought we should have…and I agreed with her, I told her how we had to fight just to get him a hearing test prior to leaving and weren’t able to get a eye screening, about how the doctor referred to Zach as “a grow and feed baby” and basically avoided us at any cost, about how I had to coax the doctor to say he had scoliosis and not just “a curve of the spine” so I completely agree that our nicu doc at the second hospital failed us and failed zach. Had he had a follow up EEG or MRI done on his head there like it was requested by TCH when he transferred his brain atrophy would have been caught sooner, his seizures maybe sooner, and the blood possibly sooner…but anyway back to today…

After going over everything with a fine tooth comb, she began to examine zach, she felt his head, for any bumps or so forth, she called it “f….?” and said hundreds of years ago it was a procedure done to check for illnesses or something. Lol she placed zach on the exam table and looked at his back, his stomach, feet and hands, I noticed she looked at his hands quite a bit, then she measured his head and length and weight. She said that though zach is a big boy, most of it feels as though its fat, and suggested with him being hypotonic that we watch the calorie intake by gtube, I explained that we had 2 specialists who want him to loose weight and one who wants him to gain, so it’s a struggle. Zach’s head measured in at 3% on the charts and with correcting his age for being a preemie it was 5%. Zach I noticed is becoming a lil anxious at these appointments, as soon as I place him on the table he begins to look worried, but she talked to him and played and he quickly cheered up.

Once she was done she told me that the pads of his hands were a bit concerning to her, I had previously told her about the research ive done and the pallister-killian syndrome (sp) affecting the 12th gene? And she told me his hands could be revealing mosaic tetrasomy , when I asked her what this ment she simply said “mosaic just means a mix of good and bad cells…some affected with the problem and some not” then she said “pallister-killian syndrome is a mosaic tetrasomy” she explained that she was going to write up a list of tests to begin with and then we would meet back in 2 months to see if we need/want to do more testing. When the nurse came back in to give me the paper with the tests on it I also noticed the diagnosis’ that was listed, the doctor had made a few of her own, though not a surprise, but its officially now in black and white. The diagnosis’s are….CDH, Scoliosis,Cryptorchidism (undecided testicles) microcephaly (small head) and severe global delay. While im not happy or pleased to see any of these, im ready for answers and ready to start a plan. The bloodwork that was drawn today for the research group in Houston, both me and zach gave blood. I was worried about how it would go with zach and his veins…the nurse got him in one single ****! I was amazed!!!! The blood work was also for the following tests…
Chromosomes, fragile x dna (since mikey has asperger’s and chance also possibly) T4,TSH,serum amino acid, and she ordered a renal ultrasound to be done at the clinic here for zach. We were told they normally do not call for normal results but we can also contact them for the results in 20 days.

After we got home and I napped, and napped…. I looked up mosaic tetrasomy and found mosaic tetrasomy 12p, pallister-killian, one of the links I found actually noted that brain atrophy was a symptom of this, as well as sparse hair on the sides…giving zach that “rooster” hair, diaphragmatic hernia, GERD and others….so the fact that it is all listed there and that “his hand pads are concerning” tells me I wasn’t to crazy to think there may be something else going on, and if the answers come back negative that would be great, but it isn’t a far reach. alot of these genetic tests are done with blood, but many need biopsies to confirm, either skin or muscle, the if the blood tests shows something as a possibility we then move on to possibly a biopsy to get the final result.

As always, Zach was a happy smiley baby, who caused a contagious wave of smiles thru the day. That lil boy sure can wrap the world around his finger. Not sure why we were picked but we sure were given a blessing with zach. Were so greatful.

Once we finished up there I thought of a conversation with another doc, very well meaning I know, but he told me he didn’t see any reason to see a geneticist for zach, saying “what will it change” and no it wont “change” anything, but it sure will be good to know what were dealing with, if its something mikey and chance may carry a trait for or be able to pass down, to help determine a plan of action for zach. In the end even with the grimmest outcome, its up to God and Zach, not a textbook portrayal of how the diagnosis will play out. Zach has proven himself so many times, he isn’t about to “settle” for anything. our follow up wont be until 28th july.

Monday, April 27, 2009

Kayleigh, a one pound miracle, needs prayers and blessings

i have been reading this beautiful baby girls blog for a month or so now, and am so inspired by her parents. if you can, please check out her blog, there are some links to videos and photos, and a link at the top of the page for a donation to her parents, they are facing loosing their home, unable to pay bills all while trying to help Kayleigh heal and praying they wont need to plan a funeral for their baby girl. please send prayers, and thoughts. remember no donation is too small, $1 is more than they family had. most importantly though, keep Kayleigh in your thoughts as she fights, pray for a miracle!

thank you!!

please dont feel obligated to donate anything, i know times are tough and money is far and inbetween....just send a prayer up for her. i wasnt able to donate much, but i figured my $10 was more than they had to begin with, and hopefully i can donate more soon.


Friday, April 24, 2009

a worried mom, prayers please

well of course things were going too well, too smoothly! just wish there didnt have to always be something to worry about. Zach is so good about keeping us on our toes i tell ya.
i got a call today from the hospital whre we went on wed from the orthopedic department where zach had a xray for his scoliosis, apparently the doc saw "something" and has ordered him a cat scan of his neck and chest area...
we will go on april 30th at 8am. talk about nervous! what on earth could it be? his neck area? his chest? his lungs looked great and sound great, im hoping its not a reherination (though i dont really see any signs of that) but what on earth could they be looking for? oh the waiting is going to drive me batty. why, why Zach, why now?
keep him in your thoughts. thank you!

Thursday, April 23, 2009

still here

i havent forgottan about the blogging world, in fact ive been making changes to our blog and updating blogs i read and finding new resources, i just havent had it in me to update my own, sad hu?

lets start with easter i guess, i hadnt really planned much and was looking forward to some rest and a relaxing weekend....but then it happend....i get a call that my brother and sister in law and their 3 kiddos are coming up and want to do easter, so okay im like this may not be that bad. they know that due to zach being so sick and the nurses being here that there isnt room to house more, so they tell me they are looking into a hotel. my mother in law tells me they will keep the kids so my brother in law will only have to pay for a single bed in a hotel...long story short, my mother in law was full of BS as always and backed out of keeping the older 2 boys and i end up having to watch them thru 2 nights. okay so your thinking its not that bad, and your right, but its the principle of the thing. heres the kicker, right after they get here mikey begins to throw up everywhere, i think im coming down with pink eye (turned out to be only allergies) and their kiddos just got over yea im a lil stressed. in the end i ended up telling my mother in law off, she also was caught talking some crap about me and i guess i had just had enough over the years with her. so needless to say we arent speaking anymore and it feels great!

so lets skip ahead a week...we had mikeys birthday party on the 18th, a sunday. our nurse, Alex let us have it at her house, she grilled some pork chops, hot links, hot dogs, and hamburgers , the kids played in a inflatable bounce house she had and had a blast. mikey had a starwars cake and bakugan napkins and plates, lol, silly boy. he is 7 years old now, man do i feel old!

i was trying to change the layout to my blog and i accidentally deleted all the blogs i follow...i tried to get them all back, but i know im missing a few, if you see yours isnt here and you would like it to be, just leave me a message with your information:)

i tried to break down my list of blogs i follow and links by subjects, take a look on the right side of the page...feel free to check them out:)

yesterday zach had appointments in temple, he saw the pulmonologist and the ortho doc for his scoliosis. ill start with the pulmo appointment first, zach weighed in at 28lbs 5 ounces and was 32.5 inches long:) big boy. he did great for the doc and his lungs sounded great! the resident thought we may be able to come off oxygen at least for a couple hours during the night, however the doc wasnt okay with this for now, with zach pulmonary hypertension, so for now we will stay on the oxygen, but we are weaning down on his diuretics and we will go back in a month to see the progress:) now on to the other appointment, it went well too, zach had his xray and we went over the results, as of now his scoliosis isnt progressing:) he is still at a 20 degree curve, same as 6 months ago, so for now we will watch and wait, if it doesnt progress he may only need a brace, that would be wonderful. so we left the clinics in good spirits and moods.

zach sure is getting to be a big boy, hard to believe in about 3 days he will be 18 months old! he is attempting to crawl, trying to get his knees under him to go, so far no luck but he is trying! im so proud of him. we go see the genetisist on the may 6th in austin and we will see what they think, if there is an underlying issue with zach or not. so far i have been researching and pks...cant remember how to spell it right now, i think is a website on it, sounds like it may be something to look into, zach has a lot of characteristics of it, but who knows.

today is already thursday, i cant believe it, but at the same time, im sooo happy, its almost the weekend again! im ready. k time to do some chores, ill try to update more often.

Wednesday, April 15, 2009

For Payton

this is for a very special lil guy, one of my cousin's, he was born with complications that resulted in cerebral palsy. ill post his mom's letter for his story and i ask that you just read it, if by reading his jouney you feel compelled to donate to his fund the family would greatly appreciate it. if you cant but still want to help, please pass this information on! thank you!

Payton Dale Camp Fund

To Whom It May Concern:

I am writing this letter in faith that it will make you interested in sponsoring my son for an upcoming clinic in Minnesota that will change the outcome of his life physically and developmentally.
Let me introduce myself a little. For as far back as I can remember there were two things I wanted most in this world. One was to become a Nurse and the second was to become a mother. The first goal wasn't that hard to accomplish but the latter was a little more complicated than I expected. I obtained my LVN nursing license in 1998 and got married in 1999. In my mind I thought I would start expanding my family in the next year or two however it wasn't in the cards that way. After many unsuccessful attempts I decided to return to school for a Bachelors in nursing. I graduated in May 2006 and finally delivered my first and only child on June 7th 2006. As you can imagine being fresh in nursing school and having wanted a baby for so many years I took every precaution imaginable to make sure things would go smoothly. Sometimes it's just not enough. It was a sharp realization that God is in control of my future, not me. There were complications at birth, Payton was born in Congestive Heart Failure, his blood sugar was really low and wouldn't stabilize, and they couldn't get him breathing correctly. He was careflighted to Methodist in Dallas where he stayed the next 3 weeks. We never really found out why or how things happened the way they did but early MRI's showed there was lack of oxygen to his brain at some point. The MRI's before leaving the hospital showed Periventricular Leukomalacia which is highly associated with Cerebral Palsy later on. With that being known the Neonatologist set us up with Early Childhood Intervention upon leaving the hospital. By the time he was 6 months old it was very clear that he was severely delayed developmentally, not reaching for toys or rolling over, and many other things, so he started Physical and Occupational therapy. He was diagnosed with Cerebral Palsy at age one. I now believe that everything happens for a reason, I realize God had a plan when he made me wait to have a child. I didn't have the wisdom or the patience to be able to care for a child like Payton five years ago. Payton is the most lively, precious child I have ever known. You can ask anyone that knows him and they will mention that he is always so happy and smiling. His attitude amazes me. He is a very hard worker and has such a strong spirit. Everyone that meets him just falls in love! In the beginning I remember thinking "Why did you let this happen to me God, what did I do wrong?" Now I think, "Wow God how can I ever thank you enough for letting me be in this child's life?" Payton will be 3 now in June, he still can't sit by himself or crawl on fours, but he can roll and scoot on his tummy. He has come a long way since the beginning and has worked very hard for everything he has accomplished.
As you may know, all babies are born with certain reflexes that help protect them and also serve with functional things. You never realize how complicated they are until they don't work the way they should. These reflexes are supposed to disappear by certain ages or it's not considered normal. With Cerebral Palsy their reflexes are usually hyperactive or hypoactive and/or they don't follow the correct pattern. If the reflexes don't grow to their matured state it affects later development. So the goal is all about turning the brain on in this aspect and finding what works to teach the reflex the proper pattern. This is where Svetlana Masgatova comes into the picture. She is a Russian Psychologist who has spent years studying reflexes and learning how to integrate them into everyday life so they are functional. She has a University in Poland and now has 3 camps over the United States. The camps are one week long for the child and parents and many practitioners from all over the world including Dr Masgatova herself work with the child for 6 hours a day that week. The camps are limited to only 20 children so they are able to spend adequate time with the children and parents showing them how to do the work once they get back home. They have had outstanding improvements in children that have been told they would never sit, never walk, and never talk. I have had the recent privilege of attending one of her 4-day classes in Houston, Texas called "Children with Challenges". I learned a lot of information and felt it will be very beneficial to Payton's prognosis. I was also able to have an hour of private lessons for 2 days for Payton with Dr. Masgatova. Just with those 2 days of hour lessons I can tell his arms are less spastic, his vision seems more focused, and he is using his arms more while doing the crawling/scooting motion in the floor. She also instructed me on an exercise program to be working with at home. Week after week the therapists and I notice he is doing better and better. With all of these improvements I am so excited to see the possibilities with 7 days of intense therapy by professionals that have spent so much time working and studying with this. I understand that there is nothing that will be a quick fix with Payton's condition and it will require a lot of work on my part even after we return home from this clinic, but I know this will give him the jump start he is needing.
I invite you to be a part in changing the outcomes for this precious child. He has such a happy spirit! You should see his face light up and the excitement he shows when his dad asks him "You want to ride the motorcycle?" Unfortunately his posture doesn't allow him to be safe on it so I haven't let him ride it yet. However his grandparents saw how much he loved his dad's motorcycle and they bought him a small battery operated one for Christmas. They tried to make alterations and they added a seat belt to it so it is safer but it's still too big for him. It doesn't stop him from loving it though. It takes 2 people right now for him to ride it, one to push the go button and one to hold him on and run along side it. Although it wears you out and it's a funny site it's worth it to see him having so much fun. My goal is that one day he will be able to ride it by himself. It is very difficult for me to ask for this kind of assistance but as you can imagine you will do things you never thought possible to help the ones you love. Thank you for your time. I look forward to hearing your response. The next scheduled camp in the United States is in July 2009 in Minnesota. The cost of the camp alone is $8,500. Any help you could provide will be greatly appreciated. Please feel free to contact me anytime by phone or mail. My cell number is 903-340-7443, Home number is 903-469-3615. Address is PO Box 575 Murchison, Tx. 75778. Email address is


Kathy Feagin (mother of Payton Feagin)

the site information is PAYTONDALE

Monday, April 6, 2009

savings, and giveaway

i have been studying blogs for awhile, especially those that have information about being frugal and using coupons such as here and those offering tips, meal ideas and more like Lori (who is also doing a wonderful giveaway with Cheryl at Little Dots and Pretty Spots! she has some amazing talent here and the giveaway is awesome, go check Lori's blog out for more information:)

so anyway like i said ive been trying to get as many tips as i can and figure out this frugal thing a bit better. i went today to walgreens, i must say i know i didnt do as good as most i read about, but you gotta start somewhere hu? ill have pictures later but i got 3 bottles of dish soap for .99 cents each, got a big garnier (sp) shampoo, conditioner and a polishing spray for hair for $10 all together, i also picked up another large shampoo of the same, and it came with a bonus smaller shampoo for $5.99, and i ended up getting a box of hair dye, same brand, for $5, so i totalled above $20 for that and walgreens had a special RR(register rewards) for that, spend $20 get $10 back thru a gift card in the mail. i also bought a chapstick for the same reason, i had a coupon for $1 off and then that brought the total to 1.49 and the RR were 1.49 back on the gift card. i also got $1 instant walgreens coupon off some disposable razors(forget the brand right now) and i had a manufactures' coupon for same brand $2 off, so i got the razors, for 1.99 vs 4.99, and got two arm and hammer deoderants large size for only .99 cents each. i dont have the reciepts infront of me at the moment, but i think it went pretty good. best of all, ill have the RR on the gift card to use next month, so ill be starting out with "free money". i bought some coupons from the site above^ and recieved them today, i spent about $7 for handling fees, and i totalled up for more than $70 in savings. ive also been printing coupons offline and am excited to put these to use for grocery shopping day.

yesterday i happen to go to kmart and found a huge sale on winter clothes, i managed to find the older boys a pair of fleece pants each for 1.99 and i got 2 hoody pullovers for me only 1.99 each. very exciting.

dont forget to go check out Lori's giveaway

Saturday, April 4, 2009


today was a very nice day, i love when we can say this, it was relaxing, it was enjoyable and it was fun. i threw a babyshower for our day nurse, a couple of her awesome friends helped out and made it a blast! we had a rubber ducky theme, the deco, the cake, the punch...all ducks. i was in love and luckily the lucky mom to be liked it as well. :)
the shower lasted a few hours and so we had nice company and good yummy (high fattening im sure) snacks all day.

my mother in law had taken the boys to a big military child appreciation thing on post, they played in bounce houses, colored, got some free small gifts, tshirt and some food. they had a good time and it was nice not to have to worry about them during the shower.

Zach has not been feeling well, i really hope he is back to himself soon, i hate seeing him sick. he has had a fever on and off for about 24 hours, he seems to have some stomach issues going on, while vented his gbutton leaked bile out...eeeww i know, but i feel so bad for him. i was thinking at first it was his teeth...he is cutting 5 right now, but i dont know. anyway i hope he is all better, very soon!

Harold called and we talked a long while last night it was really nice. he mailed the boys their blankets, sent it for the 7-10 day delivery....he wont do that again...cost $68! oh well, he wanted to make sure they were here for mikey's birthday, chance's was already late for his birthday, but he wont mind he will just be so happy to have it. i cant wait either.

Tuesday, March 31, 2009

playing catch up

wow, i never had the intention to leave the blogging world for so long, i cant believe its taken me this long to get back on to write. ive been able to read the updates from friends and fellow bloggers, but ive been overwhelmed at the thought of updating mine.

lets start one thing at a time i guess, since i left off with the b12 diet ill pick up with it. its been almost a month, and so far ive lost about 14lbs. i dont feel hungry, im not deprived of food, i would probably loose more if i were able to do more exercise (amazingly enough no one considers chasing 3 kiddos and cleaning house and running errands exercise) but i dont have the time, will or energy to do that, not yet at least. still im very happy about going on the shots and loosing the weight, its been wonderful, i plan on continuing on at least 2 more months, maybe longer.

spring break....well it was nice, the kids enjoyed some free time at home, we went to chuck e cheese and mikey got to play with sarah some and go on a boat ride with her. all in all spring break was good, but i kinda fell into a funk around that time, i slacked off a bit much on everything, now im trying to catch back up and its an uphill battle.

the boys, mikey and chance are doing well. right before spring break i spoke with mikey's teacher and the special education cordinator (?) and got him signed up to get evaluated for autistic therapy, ocupational therapy and speech therapy in school, we havent heard back yet, but im hopeful this will go thru and he will get some extra help in school, its not this school year im worried about, as this year he has an amazing teacher, but what happends next im trying to plan ahead. Chance had his 4 year check up, he was 43.3 inches and 45.5lbs, he is in the 90% for weight and the 97% for height! big boy!!he recieved 4 shots, this threw him into a huge meltdown and i had to physically lay on him to let the nurse give him shots, but his checkup went well, however the doctor showed some concern for chance also showing asperger traits (self taught abc's, memorizing our address after one time, knowing how to spell his name and micheal's name, counting to 100 etc.) the doctor started out asking chance basic color questions and was impressed when he knew what "yellow, or red" was, and i was telling the doctor, "thats nothing, he has known colors and shapes for at least 1.5 years! soooo now we wait till his appointmetn with the developmental pediatrician or another doctor to review chance and determin if he is also on the autism spectrum.
Mikey and Chance are both actually seeing a new psychologist tomorrow to be reviewed, so we may end up with our answers then...unsure.

Zach has been doing amazing, he is such a blessing, when the day is over and we have a quiet moment and im able to just look into his eyes and feel him talking thru them and i can tell him how much i love him, its amazing. Zach went to see the pulmonologist about 2 weeks ago, he is now on 1/2 litter oxygen!! he has come so far from when we brought him home on 2 litters, the oral steriod, breathing treatments 6 times a day etc, to now, 1/2 litter, no oral steriod, breathing treatments 2 times a day, its amazing!! we have even begun to wean him on one of his diuretics, so again its an amazing step in the right direction. Zach is so much happier now, im not sure if its him being off the steriod, the seziure medication or just him feeling better now, but he is always so happy and smiley! Zach had his last RSV shot for the season, he had been getting one shot a month from october till march to help protect him from the virus. he is making progress in therapy too, he is able to sit once we place him, on his own for about 10-15 seconds, sometimes longer. Zach also got his first pair of AFO's today, we had him fitted for them a couple weeks ago, it was nice to finally get them, best part is he doesnt seem to mind them at all. the AFO's are leg and ankel braces (think forest gump) to keep everything aligned like it should be. his braces are much cooler though than forest gumps, they are a light weight plastic, his are blue with airplanes and cars on them. they go from his foot to under his knee area.

Harold, he is doing well over in korea, ready to come home, and we are of course ready for that too, however we still have a bit of a weight, we are finally almost half way thru this deployment so far though. to think he has been gone 6 months is overwhelming, sometimes it feels like yesterday and others like a lifetime ago, so much has happend, and will still happen while he has been gone, chance turned 4, mikey will turn 7 in just 2 weeks, mikey was diagnosed with asperger's, mikey started ocupational therapy, chance might be autistic as well, zach is weaning down on items and may be trying to crawl or walk when he comes home. its a little bittersweet that all of these changes are taking place, i regret that Harold cant be here to see them and experience them first hand as well. I recieved flowers from him about a week ago, he isnt always the most romantic guy, so it was a very big thing, and they were/are so beautiful, tiger lilley's and roses, all pink. i was very happy to get them and love him so much. he has been doing some shopping over in korea as well, anyone who knows my loving and wonderful hubby knows this is a shock as he is a self proclaimed cheapskate, so again it means a lot. he bought be a beautiful dolfin korean blanket (big, thick, soft) and the kids each got one as well, mikey got spiderman and chance got nemo. we havent recieved them yet, but i saw them via webcam. they were only about $20 there, but over here to buy the same is over $100 i think. so im very excited to get that and he also bought a beautiful four piece landscape with bridge painting in blue and black, ill have to find a really good place to display it.

back to zach really fast, i have talked to one of his therapists for a while back and forth and thought on my own too, that zach may have something else going on, besides the CDH and the brain issue (just has alot of symptoms and issues that i dont see in other babies like him ) anyway i finally contacted a genetisist and recieved word back that they also think there may be something else going on, so we made an appointment to head back to texas children's in houston in may. now the idea of going back scared me, as i cant drive in all that traffic, litteraly i will have a panic attack and would be a ball of emotions on the side of the road, so when i agreed (knowing its best for zach) i worried how i would get there, i asked our nurse who has also become a very good friend if she would help, and to my suprise she was completely okay with it, she may never know what a huge relief and burden that took off me, im so thankful. so we will go and get zach evaluated and give blood samples, they usually take blood from both parents, but dad's in they said if they find something that worries them they will figure out ways to get the sample from him, and if not, when he gets home they will do the sample then. apparently there are a few syndromes that are connected to the diaphragmatic hernia, such as Fryns syndrome and PKS (Pallister-Killian Syndrome) and some other mutations of certian genes that can cause a big spectrum of problems. alot of these do sound like maybe it could be connected, they mention, lowset ears, undecended testicles, wide spaced eyes, flat nose bridge, brain atrophy in some cases, gerd, and more. im hopeful we can get some answers and help zach out as much as possible and know what we can expect. its fusterating not knowing.....anything basically, just going day for day.

well we got tax money and used it to pay off debt and im using some to get grass soon, im so tired of the mud pit! we need grass for summer with the kids, so i am excited. the first guy quoted me $3k!! for i went with a guy who is gonna do hydromulch for $750!

tomorrow starts April, wow, already. Mikey turns 7 on the 13th, we will celebrate the weekend of the 18th though. easter is the 12th, still gotta get things in order for that. and this weekend, the 4th is a babyshower im throwing for our day nurse, im very excited, because i love babyshowers, love making people feel suprised and good, and it gives me something productive and exciting to look forward to. im doing a rubber duck theme...the cake, the deco, even the punch will be rubber ducky!

im not sure if i have mentioned Julia here before or just on my carepage, but a wonderful family we have known since before mikey was born had their second daughter in december, anyway she was born with Charge syndrome you can get more information on that here.... and since her birth she has only been home about a month. she had her first surgery to get a gtube for feeding and her second was open heart surgery to repair 2 holes she had, a VSD and a ASD and then today she had a Trach put in to help her breathe. she is such a strong and courageous lil girl, an inspiration. her mommy and daddy had no idea anything was really wrong with her, they were told she had hydrocephalus (fluid on the brain) and would be monitored, but when she was born she had problems breathing, and her ears were oddly shaped (like elf ears) and she had other characteristics of the syndrome. so needless to say they have been thrown into the world of being a special needs parent. not a role anyone wants, but they are doing amazingly well. dad is getting ready to deploy in just under 2 weeks and i am stressing for mom, she seems to be doing okay, but its overwhelming, and now the trach too. but they are a very strong family and julia is such a fighter, she will contiue to touch people she may never meet and show her mom that life as a special mom can be a blessing. i hope to hear she is on her way home very soon.

well there is the long awaited update, not sure why i was so overwhelmed to write it....haha. goodnight.

Friday, March 6, 2009

b12 rocks!

omg so this b12 stuff rocks! since last week, probably a total of 10 days now max, im lost 7-8lbs! i have a buttload of energy.....example, i folded washed and put away, ALL of our weeks laundry thursday night, and gave all three boys a bath. tonight i steam cleaned our carpet and cleaned the kitchen. i feel great! hope the weight continues to drop. the lowest i saw the scale hit today was 215, lets see what it looks like after the weekend.

tomorrow im having someone finally come over to the house to hopefully water seal our fence, and i hope to take our dog to get cut, and of course i want to take the boys to the park for a bit, they need it and i do too i think. hoping its a great weekend.

Wednesday, March 4, 2009

good week

wow tomorrow is thursday, almost the weekend again....didnt this week just start? for that matter were into MARCH??? when did that happen? ugh. ive had a great week, i got a call the van is done!! but i havent had a chance to pick it up yet, hoping to do that tomorrow. im soooooo ready to have the van back! i still need to get an oil change on the car, its on my list.....that darn list, it just grows and grows it doesnt shorten....ever!
anyway back on track....the van is ready, the deductible is $250 and yes that SUX but its MUCH better than $500, so i was thrilled! i talked to mikeys teacher on monday, mikey is reading at a level 11, and by april 2 is suppose to be on a level 12, he has gone from a level 0 to a 11 since school started! amazing!!! i "think"(knock on wood) he will be going to second grade, though the teacher wants to talk about summer HELLO....what is there to TALK about....he's there if it gets him to second grade! its for the month of june, from 730am to 1pm, so yea it kinda sucks, but hey im all for it, he even thinks its cool cause were calling it tutoring....and he LOVES tutoring. soooo crossing fingers things go well. i also spoke to his special education director at school to get him evaluated for ocupational therapy in school either in addition to or instead of (havent made up my mind yet) the therapy he recieves outside of school. and she told me she wanted to get him evaluated for ocupational, physical, speech and emotional behavioral i think this is great! yes i realize it may send him down the path of being labled special ed....but you know what? who cares? i just want him to reach his potential and blow it out of the charts!!

Zach has been a happy lil camper, he is such a joy. he gave me a hug today, i initally hugged him while holding him, he smiled i told him it was a hug and then i asked for a hug and he layed his head on my chest, he did this 2 more times and the last time he extended his arms out and touched my shoulders with them....THATS A HUG! my baby UNDERSTANDS me! this is amazing!!! i LOVE it!! Zach has a molar tooth coming in!! poor baby. but he is doing wonderful with it, all smiles.

im venturing out on a diet, and a plan. im starting out 223lbs as of last week here at home, as of this morning at the clinic i was 220, and as of tonight at home im 218, so im guessing i actually weighed 2lbs more than my scale showed and either way ive lost about 5 so far. my goal weight? sheesh i have no idea, id say 170 right now, but of course if i reach that ill say 150 and then 130 that would probably be my stopping point. of course thats almost a hundred pounds, so im kinda doubting that will happen. we will see.i hope i loose enough to suprise harold when he gets home and to feel better about myself.

chance went to daycare 2 days last week and once this week, he seemed to really enjoy it, i did too, but it wasnt long enough, 3 hours at a time. just not enough time. but im sooo glad he is responding well to it. thats a huge step.

k we will see if i can update again before another week goes by.

Tuesday, February 24, 2009

yadda yadda

yea yea i know, two blogs today? but what can i say i found some extra time, i found some extra words and some extra umph! but not much extra. its nearly march, where on earth did the time go? school is almost out. summer is almost here. mikey's first grade year is almost over! Harold has been in korea now for 18 weeks 2 days. ive been a single mom on the verge of a nervous breakdown for about 18 weeks 1 day. march is a busy month for us, mikey will start his ocupational therapy 2x week, zach will be fitted for AFO's to help support his ankles, he should recieve his new stroller/wheelchair, he will be recieving diapers thru our medical supply company, zach will meet with an eye doc to check him out, and of course we have the normal appointments, cardiology, pulmonology, GI, the in home therapies (physical, speech, and ocupational) for zach, oh and somewhere in all of this i need a dental visit for me, will be meetiing with the doc for this weight loss thing and frequent (2x week, b12 injections) and hopefully i will get the van back from the shop, and of course lets not forget spring break! yes needless to say i can see this month flying by.

i miss Harold, i miss not being able to eat dinner with an adult, not getting that quiet time with the kids in bed to talk. not getting to go out, not getting to stay in. i just miss him. ive been blessed beyond all that he can call so frequently now, and if it werent for that im sure i would have gone crazy. i feel anxious alot, the zoloft helps still, but i feel anxious, moody and sad still. i dont think there is a "pill" to help with half your heart is im pretty sure its something ill have to wait it out.

ive been blessed to have the nurses to help me out, as much as at times id like to kick them out and have my house to myself, they provide a great relief, a great help, and friendship. our day nurse alex has been a tremendous blessing, having her here during the day is like being at a friends for lunch, its like forgetting she is here to help with a special needs child, its as if she came by to visit and zach is just another normal babe, normal, wow that is a concept i cant comprehend. i also cant spell tonight and i dont really care to bother to try. chance will be going to day care for a few hours here and there thruout the month, i need a break and he needs to get out. its for the best. ill just do my best to keep him germ free once he leaves the day care center. tomorrow he will go for the first time, will he cry and beg me to stay? will he forget i was even there? the last time he went was with mikey, him and mikey are like conjoined twins, lets hope he can handle it and in the end he loves it!! so tomorrow he will go for 3 hours and i will take zach to get his RSV shots and then go to mikey's parent teacher confrence. thursday chance will also go to daycare for about 3 hours i think, the plan for that day is to have lunch out with alex at an indian restraunt and then get a pedicure. aw the relaxing, the quiet, the girl time, im almost giddy with excitement.

on the days when i get down and out and feel like throwing in the towel or feel like ive failed the kids or im drowning here and cant reach the surface, where i feel like im alone and forgotten, im blessed to have the best friends here, im not a big social person, so i dont make lots, but the ones i do i keep for a lifetime, they are the ones who when you reach for their hands you touch their hearts and vice versa, im blessed beyond measure to have them in my life. i love you , yall know who you are. the family i never knew i had, and the ones i always want in my life. okay okay enough with the mushies hu?

anyway life with special kids is demanding, stressful, and i wouldnt wish anyone to have to endure pain and suffering for the kids, but the rewards they bring in our life is truely priceless. im better as a person with my kids, special issues and all. i cant imagine my life without them, nor do i want to.

as i watch chance i see so manyof "mikey's" traits in him, the sensory stuff (spilled a drop of water on my shirt, shirt must come off!!) the holding his ears in a crowded place or when the toilets flush, its odd to look at the lil things and see nothing, but when you know what to look for the lil things add up to a big puzzle. the rocks that chance carefully lines up outside, as well as all his mcdonald toys that line his walls....may be overlooked by some, but in my heart i know, i know what it means, and i know what must be done. we will see the specialist, we will catch it sooner than we did with mikey. there is no denial with this, not for me at least, a mom knows. i sometimes worry about how Harold will react when he comes home and his world is thrown upside down with all the appointments,therapy, and the list of diagnosis', i hope he can roll with the punches and him being away for so long wont have changed him. i hate the seperations in the army, i hate it. im very proud of the job he does, im proud of him, but we miss him so much, each in our own ways, the boys dont say alot, but in their actions they speak volumes.

starting with mikey, here is a list of diagnosis'

sensory processing disorder, adhd,insomnia,asperger's, dyslexia


ezcema, asthma, allergies, (ones undiagnosed, but mommy knows) sensory processing disorder, on the autistic spectrum


repaired congenital diaphragmatic hernia, repaired subdural hematoma, brain attrophy, scoliosis, GERD, oral adversion, chronic lung disease, restrictive airway disease, pulmonary hypertension, pulmonary hypoplasia, gtube fed, developmental delay, more to come....

okay i suppose i was long winded tonight, i doubt anyone reads much of this, so its just a release for me and a way to record my crazy thoughts.

sometiimes life is hard, but three words sum it all up.....IT KEEPS GOING.

tough times dont last, but tough people do.


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