the family

the family

Monday, December 29, 2008

oh the joys of boys

Hope everyone had a great christmas, ours was nice, quiet and nice, we missed Harold being home, but we got to see him on webcam opening his gifts, so that was really cool. i got him a memory book from snapfish, 20 pages of photos of us and captions, very cool, he also got a small(much smaller than i thought...) digi pic frame, then he got a cool pair of PJ pants with super heros, his roomate tells him his pj's need a volume button.....i love it. :) life should be full of color hu? a lil sparkle to make life less ordinary.

we had a nice christmas, the boys ended up getting lots of gifts from our nurses that i didnt anticipate them doing at all, so it was very sweet of them all. the boys theme was basically STAR WARS as usual. they got light sabers, books, action figures, mini action figures, pj's and shirts all with star wars. they LOVED it. Zach of course got a buttload of gifts, ring stackers ...2, light up ball, glow worm, baby einstine toys, books, dvd's, christmas ornament, tickle me cookie monster, leapfrog toy,clothes and much more! very awesome. i even got a few nice things that was totally unexpected. our day nurse Alex, who is such a doll, i really hope she stays with us for a long while, got me a wallet, that i really needed,a wonderful candle and this awesome collage frame that i was eyeballing in kohls. another nurse got me a music box, very sweet. so it looks like SANTA really did come. :)

now the holidays are over and the kids are bouncing off the walls. remember when i said earlier that a lil color in life is good? brings a sparkle and such? well....the boys are like that, on a good day they warm the house and it glows with love, on the normal days its like our house has amillion christmas light on and its SCREAMING look at me!! sometimes they are a bit toooo colorful. Chance is still obsessed with numbers, i mentioned this with his primary doc today while we were discussing holding off on most of zach's shots till 18 months. the doctors eyes grew wide with concern when i said chance is 3 and counts to 100 and adds numbers all day and carries a calculator around, and i told him mikey is the same, that paired with their sleep problems and meltdowns, mikeys sensory problems and clumsiness the doc was at a loss for words at first. he then asked me how the boys vocabulary was, when i told him they were rather advanced in that they use words adults do, such as Embosal (sp) or calling me and Harold the parents, not mom and dad, i also told him that the neuro we were sent to see for mikey told me he couldnt help us, dr fontain just stared wide eyed and told me to keep an eye on them. i know in my heart he was thinking exactly what i have been for a while. i think somewhere on the autism spectrum disorder ASD is where the boys are, they are definatly not the low functioning classical autistic kid, maybe high functioning or aspergers or even nonverbal learning disorder. i just hope whatever the case we can get the help they need to let them succeed in school. im so tired of no one having any ideas and passing us on from doctor to doctor.
Chance has been REALLY colorful in public lately, letting out piercing screams and wailing over the smallest of things, not wanting to walk, not wanting to sit in buggy, mikey looking at him...etc, it wouldnt be so bad but the "looks" i get from the shoppers around like "what a brat" or "she needs to beat em" is about to kill me, ive attempted to do just that, but the spankings dont work, its not the problem, i wish i could fix them.
im exhusted and worn out.
Wed is my birthday!! yippie, lol. ill be spending a day by myself, alex will be keeping all the kids so i can go out window shopping or reading at the book store or whatever and then ill be having dinner with a good friend while her hubby watches the boys and her daughter, ill of course take zach along for the dinner. i am soo looking forward to that.
k, time to watch some tv.....
Happy New Year incase i dont get back on before:)

Wednesday, December 17, 2008


well again its been a lil bit, seems like time passes rather quickly around here and before i know it, its a new day, not that thats always a bad thing, but its hectic. Today Zach had his pulmonology follow up, he did WONDERFUL! his lungs sounded great, he is now been put on PRN (AS NEEDED) Treatments of his rescue nebulizer medication, xopenex, so instead of getting it EVERY 6 hours, he gets it as needed, this is a FIRST since he started the medication!! wahoo!! zach lasted the tops, 5 minutes, off the oxygen at the clinic for their lil "test" they do each time he comes in, usually he only lasts 30 seconds, meaning he drops his sats very fast without oxygen, today was MUCH BETTER!!the pulmo doc was very impressed and i was THRILLED! this explains why he has been tugging at the oxygen and such, he says he dont need it!! the doc said we can lower the oxygen to 1/2 litter, but no further for now, we need to wean off his diuretics first and then the oxygen, so were making progress!! Zach has also been making progress in therapy as well, rolling back and forth and attempting to get his knee under him (you need to do this to crawl) its said a "normal" developing baby when learning how to do something such as rolling or climbing will do the activitie 1500 times a day, so zach is just "being normal".

Mikey has his christmas party tomorrow, can you believe its nearly christmas already? wowzers, im telling ya, time flies~! im baking cookies tonight for the party, ooey gooey chocolate and lemon cookies, yummo.

Mikey is doing pretty good in school and seems to enjoy it, i think all the extra help and tutoring are paying off, thank the heavens!!

Chance on the other hand, im not sure what school will hold for him, he already counts to 100, without skipping any, counts by 10"s to 100, spells, MICHEAL, says all of his abc's in order, knows his shapes and colors, is starting to try to sound out words and is now counting backwards from 10-1 perfect and i heard him today attempting to count back from 100 he got to like 96. i guess he is picking up where we are working with mikey, but holy moly!!

overall the kids are doing good and im waiting till winter break is here so i can rest for a bit at home.

Harold recieved his tree and gifts, so it was nice to know he is getting some christmas cheer too. he seems like he is doing okay, we miss him and the boys miss him a bunch, just hoping next christmas he will be home with us.

My friend had her beautiful baby on dec 5th, she is a beauty. she was born with CHARGE syndrome, parents had no clue till after birth. she required some extra oxygen for a few days, but is off of it now. she had a feeding tube placed surgically at 8 days old, she cant swallow for now, so this is the way she gets food for now. her ears are slightly different (i think they are adorable, like lil elf ears) but this is also one of the signs of the syndrome, and she can have vision and hearing problems, worse case, blind and deaf, not sure the extent of it yet. she also has a hole in her heart, they think should close on its own, i believe she still has some fluid on her head that they are watching, and other than that she is great! she is a doll, they call her snowflake and tomorrow ifinally get to meet her! i cant wait!!

and something i think santa should know, before he passes me up this year i have one thing to say...... I CAN EXPLAIN...... give me one chance:)

Sunday, November 30, 2008

well i have put off writing any kind of update simple due to laziness, there has been so much going on that my mind barely has time to process it and to even think of rehashing it at times is too much. were hanging in there.
ill start oldest to youngest here with the kids.
Mikey..was tested for dyslexia and i have an ARD meeting with the school tomorrow to discuss the findings, im pretty nervous about this, kinda like a momma hen i guess...the thought that i may hear something that sounds criticle of mikey makes me ready to go into "attack" mode. mikey missed two days of school last week due to a fever and a cough, poor guy. he is feeling better now thankfully. he has a busy few days with appointments, a physical on tuesday, appointment with the audiologist on the 4th, the neurologist on the 8th and a dental appointment on the 4th to i think.

Chance, bout the only thing to announce with chance is that he has learned his abc's, he can say them, and usually about 90% of the time he gets them all. he can also count to at least 50! im pretty impressed with this since he wont be 4 till Feb! Chance also got a lil under the weather the other day and had to get some breathing treatments, he had a couple asthma attacks, luckily he seems like he is doing better.

Zach is doing well, he had his ultrasound on his testicles (unsure if i even mentioned that ordeal with getting the appointment here?) but anyway we ended up getting an appointmetn at 11am not 1 am! i still cant believe they even offered the appointment at 1 am. anyway his testicles are right on the verge of dropping so maybe we wont have anything to worry about. zach also had an appointmetn with the ortho doc, they did an xray of his spine and told me he does in fact have about a 20% curve, and for now were just watching it. we go back in 6 months. zach has been doing well other than those though, he is such a joy, always so happy and content.

Harold is doing okay over there, his unit has lost their minds though, to much drinking and fighting, i think he said half of his unit went to jail last night, insane hu!?! he misses home and we miss him being here. thanksgiving was very quiet and we didnt feel like doing anything. im trying to get better for christmas, and am going to send a small tree and all the deco to him over there, im sure it will brighten his day as well.

wow tomorrow is dec 1st, ready for a new month, ready to enjoy the holidays as much as i can. hope all is well!!

BTW 46 more trash days till Harold comes home, 23 more pay periods, 9 more house payments, only 6? more holidays until he can be back home. :)

Thursday, November 13, 2008

more news? this time on mikey

mikey went to the speech eval. today were trying to pin point his trouble in school. school tested him for dyslexia and i havent heard back yet, i had his vision checked and its fine, the speech therapist was awesome, but going over everything she thinks either in addition to or without the auditory processing disorder he may have a visual processing disorder, he already has a sensory processing disorder and adhd and the sleep problems that he is on medication for, all of these things however are on the spectrum of autism including aspengers and ppdnos, so im suppose to get a referral to some other specialists, get hospital testing for dyslexia and get a ocupational therapist to work with mikey for his fine motor skills, he is still lacking in those areas. i wont get the report from the speech therapist for a few weeks and in december he will have a hearing test adn a specialized hearing test to check for the auditory processing disorder, and hopefully around this time we can pinpoint something and get him help and modifacations in the school system.

im about to check into lala land and out of reality...this sh#t's to hard!!

Wednesday, November 12, 2008

emotionally spent

goodness, today was a crazy day, thankfully we had our wonderful day nurse to help us out, she takes on so much for zach, i guess we have been getting short changed with our other nurses, but she does soooo much and helps us so much. were so happy she has been with us for about a month now.
Physical therapy FINALLY came by today, YAY! we started the eval process today, im sooo relieved to have that moving forward. she said we will most definatly need to get some adaptive equipment, a stander im sure and some other things to allow him to have the chance to do things a 12 month old would be doing. she wants him on the floor more and doing a lot of tummy time, he still doesnt tolerate it for long, but we will give it our best shot. she also said speech therapy has been approved so now we wait for a speech therapist to come on board!
Zach had his 1 year check up today, this was really one of the only times he has had a basic head to toe check up, and with HIS pediatrician, the only time we have seen him before today was in the ER when Zach went into respitory faliure back in april, he is one of the top docs here and so its hard to get an appointment with him, though he has helped me with referrals and medications over the phone alot.
Zach weighed in at 25lbs 7 ounces.....eek he is officially too big for his he swings in it now. :)zachs ears, nose and throat were checked, his lungs were listend to, and then his testicles were checked, apparently they havent dropped...why has this not been caught before now?i guess cause the attention was always on zachs breathing or the bleeding on the brain. so now we have a few options, option 1 is to have the surgery to bring them down, and normally this isnt a big surgery, but with zachs history there is concern with anestisia and a breathing tube. if we choose to do this he is at the prime time now. the doctor did say we may choose not to and this would cause him to not be able to have children of his own, but he asked if we even thought that was a possibility for his future.if we choose not to he is at greater risk for testicular cancer in his 30's. we have an ultrasound to schedule to find out exactly where the testicles are and go from there.
the next thing the doctor noticed right away, is Zach's head, it has been quite small for a long time and i have asked about it and been told to wait and see and blah blah blah. well today the answer is, his head is to small...because his brain is to small, the damaged tissue that died will not grow back. his brain is bilaterally attrophied in the front lobes, we went thru and looked at a couple ct's of his head, the doctor said it wasnt as bad as he thought and that he has seen worse, he told me he isnt a neuro but he has seen alot of films and cases and said it appeared that his balance part of the brain was pretty full, and he said that Zach may actually walk in time. (zach will be in running all over the place we know this for sure:)) he also said that zach doesnt show the spasticity that Cerebral Palsy patients usually have, and if he were to make a guess at it he would say Global Developmental Delay since his brain damage is probably kinda all over. he told me he was shocked i hadnt been told any of this or what to expect for zach and he hated to be the one to tell me this as he didnt want to upset me. but its things we have to know.
it was also time to renew our handicap parking permit, if he deemed it worthy, he immediatly marked it as perminant not temporary as it was done last time, so we shouldnt have to renew it anymore, and though its nice to have one less thing to do it was hard to read the word and not see "temporary" we talked a lil more about zach and the fact he isnt talking to us, or responding back to what we say, even with him rolling now the doctor said he is still at about a 2 month level. so after our LONG appointment the doctor sent us down to get shots, he only got zach the hep. a for now and help off on about 4 of his 12 month shots, he said he didnt want to stress him out and he could get them at 15 months. zach had fallen asleep in his stroller by the time we were ready to get the shot and he slept right thru it....bless his heart he is a tough cookie! the doctor was an awesome and caring guy and we are very blessed to have him working with zach, he was worth the wait, zach really recieved the best care today. our total time at the clinic was about 2 hours!
so were home now and exhusted. emotionally drained. and hungry

Monday, November 10, 2008

Happy Veterns Day

when i picked mikey up from school today, i asked him how school was and what he did, he told me that he made a picture for veterns day, but that he had left it at school, i asked him what he drew.
he told me he drew daddy and two of his soldiers and he drew that because he missed his daddy, and he then drew our couch, tv, me, chance, zach and him sitting on the couch watching daddy's video he left for them, he said we were smiling, but he quickly added we were smiling because we like the video, but not because daddy was gone, cause he dont like that.

Thursday, November 6, 2008

catching up

well its been a few days, halloween was okay, we stayed in as planned and the boys dressed up and played and ate candy. we passed out some candy to the neighbors who came by and still had plenty to eat on for a while.

the boys and i also got our flu shots this week, its a very important thing, with us having zach here at home. we are trying to minimize every contact with anything as much as we can humanly possible. i also spent over 2 hours at the eye dr yesterday for both the boys, what a nightmare, kids crying, eye drops to dialate the eyes, the waiting, the crying cause one was going second and one first, the crying over staying and waiting and then crying over was horrendious (sp)! at least we dont have to go back again for a year and their eyes are good. mikey has his hearing test with the audiologist on dec 4th, he will meet with the speech therapist next week though and see what she says. we eliminated the eyesight as the issue, still waiting to hear back from the school for the dislexia testing.

this deployment is really starting to suck, lol i mean of course it is, but the holidays are coming up and its just feeling lonely. im trying to be excited for the kids about christmas and decorating and gifts, but im not there just yet. thanksgiving...forget it not even concerned about it. christmas has always been my fav. and sad but true Harold has missed quite a few, causing us to usually celebrate way early or slightly later, usually earlier. winter time is also a bad time for depression aside from financial worries most people face, and other life struggles, but the sun isnt out as much and it can cause SAD(seasonal affected depression) in some people, im one, thankfully this year i have a jump start on that.

zach is rolling....yep i typed it, im screamin it! ZACH ROLLED, not just once or twice, 3 times in one day, at least 5 yeasterday within 15 minutes!! he is a rolling machine! he can only roll to the right from his back to his tummy and then get gets stuck, but its soooo much progress. zach will continue seeing a ocupational therapist 3 times a week and he will see a physical therapist, hopefully soon, 3 times a week....YEA!!! im still waiting to hear about a speech therapist.

our new day nurse, well she has been here with us about a month, is so amazing, we are very blessed, she is incredibly kind and sweet and great at her job. she loves zach and he adores her. its awesome. and just icing on the cake, she has become a very good friend of mine, we talk thru-out the day and watch tv, nothing to exciting i know but she has planned to attempt to help me out in the kitchen im not a good cook at all so im anxious to try and learn. we hope she stays on with us for a long time, i know she will be having their second child in may so im unsure what will take place at that time, but for now we will just count our blessings.

i miss my husband, i cant believe it hasnt even been a month! BOO!!!!! im thankful to the boys for keeping me busy, it helps with the time, but im also exhusted. so i guess its like a double edged sword. anyway time for me to get to bed. goodnight:)

Thursday, October 30, 2008

busy bee worn out

wwheewww im starting to feel the exhustion of every day life:(. things are just so busy around here and they seem to never stop. for the last 2 days ive had no day nurse and my day today was like this....
0600 wake up
0620 talk online to harold about 15 minutes
0630 wake mikey feed him cereal
0645 dress mikey for school
0650 dress zach and get his portable oxygen hooked up
0655 wake chance, listen to him whine and cry, dress him
0710 load everyone in van
0715 drop mikey off
0725 unload everyone out of van, rehook zach to plug in machine
0730 feed chance cereal
0740 talk on phone with harold
0900 take zach off feeding pump
0900 change diaper
1000 put zach in exosaucer/swing
1100 give zach breathing treatment, diaper change, 3 medications, bath, put him in room for nap
1100 listen to chance scream about wanting food
1120 when done with zach feed chance
1140 try to catch a few minutes tv or computer time
1200 forget rest time, gotta make calls to reschedule a therapy for mikey that was suppose to be in austin (are you kidding me....i cant get there with these kids!) after 20 minutes on phone finally get it fixed, made new appointment for in town clinic!
1230 started dishwasher, wipped down surfaces, started laundry
1pm gave zach 2 meds, new diaper
120pm gave chance juice and snack
140pm back on phone trying to get flu shots for boys
2pm got chance redressed, got zach redressed, new diaper, hooked to portable oxygen
220pm headed up to school to get mikey
245pm mikey comes out of school
3pm go vote
330pm stopped and got dinner, too tired to even think about cooking:(
4pm started paying bills
430pm therapy for zach 1 hour
530pm finished paying bills
6pm gave zach breathing treatments and 4 medications, diaper change
630pm did homework with mikey, looked at report card...not good:(
7pm finally done with bills, check email, give boys snack, and their night time meds
8pm resting, playing on computer, about to finish laundry and do floors

at 9pm ill give zach more meds, move him to his crib for the night, make sure his feeding bag has enough formula, get boys teeth brushed and in bed, try to watch a lil tv at 10pm the night nurse will come in and i need to run to walmart for bottled water and airborn. ill get to bed around 1130 and start all over tomorrow at 6am.

so yea im tired, and i cant really even get much accomplished! my house isnt dirty, but its cluttered and unorganized, and id love to be able to do more around here, just dont have the energy, i usually only get to eat one time a day, just dont even think about it. some days i have to take zach to his many appointments in temple...30 minutes away, i also have to go here a couple times a month for oxygen and medications from the compound pharmacy.thank goodness gas is going down!

in november im looking at 16 in home therapy appointments for zach, 1"school day" (teacher comes to house with lesson plans) for chance, 1 speech evaluation for mikey, 2 eye appointment for chance and mikey, a pulmonologist appointment for zach, i need to get the flu shot, and mikey the flu mist, still waiting on chance to get the shot, they dont have any in stock, mikey and chance get their behavioral appointments at the hospital, zach sees a ortho doc, and zach gets one year shots and check up as well as rsv shot.

blah! im ready for a break and were only down almost 2 weeks in this deployment.

on a good note, zach rolled over the other day on the couch on his boppy, he didnt make it completely but we helped him, he initiated it and thats great!!


Tuesday, October 28, 2008

proud momma

top picture,my cutie zach in BIG BOY clothes, his nurse alex bought him some outfits for his birthday, pants and shirts, not the onsies we have been using, he looks so much older now. :)

middle pic, my boys in 5t pj's...a bit snug on both mikey (6.5 years) and chance(3.5 years) they are getting so big.

bottom picture Micheal, he recieved his award today for Citizen of the quarter! only one kid from each class got this! we are very proud of him for behaving himself and doing as he should in school. despite the challanges he is facing with written work and reading, he is doing amazing! his teacher this year has been a blessing to us all. were still waiting to get the results back for the dyslexia testing and i got referralls today for a speach evaluation and a hearing test to rule out hearing issues and a possible central auditory processing disorder, i also have an eye exam scheduled for 5th nov. we will figure this out and get him whatever help he needs!

Monday, October 27, 2008

wake me up next year....

okay its officially hit me, were in a deployment...duh i knew this but i had pretended it was field time....well thats over now, its hit me today! and this for the record feels awful. why today? it could be that i started MPAT (military parents as teachers) program again, where a wonderful lady comes to our home and does lesson plans for the kids, she has been with our family for 3 years, we took a year break due to zach but she has been following our carepage and been a huge support. things have kinda slowed down and we decided to start up again. she came today at 745 armed and ready .....she brought chance and zach some wonderful books, they are for seperation of parents, you can add photos to them and they explain why dad/mom is gone and such. it could be that on the way home from getting mikey from school he asked me if dad was really gonna be gone for his birthday and when i said yes, he asked if it would be awesome if we could erase that memory of him leaving and change it with him coming home. aw that broke my heart! mikey doesnt talk about missing dad to much, never has he is just a distant kiddo, but today, he reached out in his own way. and for whatever reason everytime my phone got a text today i thought it was Harold telling me he was on his way home from work, then it hit me....this happend several times today. im emotionally spent. im tired and i want this year to pass quickly. i cant wrap my mind around the holidays like i should and i really want to. i love christmas, instead i feel empty.

a wonderful friend of mine had her 3rd baby, her first daughter, Sadey today at 8:06am so she is officially 1 year 1 day and 1 minute younger than zach! she is a beauty as well! were so happy that she is here and doing well.

my house needs to be cleaned and i cant think about it, i feel blah! tomorrow i take mikey to get him a hearing test (more than likely just a referral to ENT) and then i will be having lunch with him at school as they announce his name at lunch for being citizen of the quarter! a proud mommy moment!!:)

Tuesday, October 21, 2008

here we go again

well here i am again, its been slightly under 72 hours into this new oh man i really shouldnt use hours as a countdown, but sounds much better than saying only 362 more days. sigh. Harold left at 2am on sunday morning we had "family" time from 2am to 330am, sitting in a parking lot, at the van as he held 2 guns and waited to line up and be bussed to a gym where we couldnt go and be processed to board the plane.
Zach stayed home with the nurse, it was hard to do, but we dont want to risk him getting sick. mikey and chance were asleep and we loaded them in the van, they slept the whole time, but i did get pics of dad with them and dad kissing them goodbye. ive always heard the deployments get easier as you have more....i must say ITS A LIE! its just as hard this time. im tired, im lonely and not ready to make this my "normal" for the next year.
so far we have been blessed with the deployment, its not iraq, or afgan, its safer, and communication is easier. during our first deployment we probably talked 6 times in 7 months and 2 emails. during our second deployment the 11 months he was gone, email was good and instant message was good, but phone calls sucked! so far he called this time from alaska as they waited to be refueled and he IM'd last night and early this morning for a bit. i also recieved a phone call after dinner tonight they havent been long, 10 minutes online and maybe 10 minutes in all with phone calls, but its contact...and ill take it. he should be able to get a phone over there for about 45 bucks a month that will allow him unlimited access to calling home. again....a blessing.
the kids miss dad, they are acting out, chance whinny about everything, mikey very emotional and he had rage today, i hope things settle down soon for them. zach however, just as cheery as he can be. when i came home from leaving Harold that morning zach was awake and smiling for me. i held him and just cried, but of course i didnt cry long, who could with that smile. i swear he was trying to hug me, lil guy is so smart.
so heres to the next 52 weeks, thats 52 trash days, 52 days of church, 26 grocery shopping trips, 26 pay days....sounds a lil better that way.

Saturday, October 11, 2008


i have this overwhelming feeling of sinking in water, unable to reach the surface, unable to breathe. i can feel my chest tighten, i feel an huge weight on my shoulders. anxiety im sure. is it an anxiety attack? that im unsure of. i just wish there were some way to get to the surface and breathe!

were home, thats a huge relief, and despite what i wrote ^ i am very relieved and happy to have been able to bring zach home after one day in the picu. he seems to be doing fairly well and were so greatful. he has 10 days of antibiotics and on higher amount of oral steriods. zach was becoming quite cranky today, and i discovered 11.5 months old zach has his first tooth that just broke thru the gum line!!! wahoo!! i know this tooth came at the perfect time...Harold's flight for korea just got moved up by 3 days. sure it may not sound like a lot, but when your talking about the 22nd vs the 19th, its so much time, so many memories and moments that wont be made! im mad! im angry! im devastated, and broken hearted, and ,,,gasping for air.


how will life go will i carry the job of two parents for a year, how will i deal with 3 special needs kids, and one who is medically dependent? i want so badly to break down and cry, and i just may, but what good will it do? will it buy me time? no. will it change the outcome? no. im afraid if i do begin to cry i wont be able to stop.

i want so badly to soak up all our time left as a family, instead were stuck with a list of things that still need to be done.

in the next year Harold will miss
zachs first birthday
new years eve (my birthday)
new years day
chance's birthday
valentines day
mikeys birthday
the end of school
the begining of summer
his birthday
4th of july
our 9th wedding ann.
the begining of school
the first day of Chance's very first school year

he will miss approx. 115 ocupational therapy sessions for zach, countless doctor appointments, hopefully zachs first roll, first crawl, first food by mouth, maybe first steps, first words.

he will miss mikey's test results to learn if he has dyslexia or not. he will miss out on dozens of Wii games with him, hearing all his wild stories.

he will miss Chance growing like a weed, watching him soak up so much and learn so many things.

I will miss laying next to him in bed, gripping cause he left socks on the floor, making dinner and having to reheat it cause he worked late, watching COPS on tv for hours with him, hanging out on the weekend knowing how blessed we are.

im sure ill put up a front and pretend it doesnt bother me as much as it does, stay strong until he is gone, but the future with zach scares me to pieces, and alone at that. mikey's struggles in school i fear will be more so with his dad gone. of course chance's asthma always scares us, he seems to get croup at least1-2 times each season and lands in the ER. im scared, im mad, i miss him already, and he is still home. what will it be like when his closet no longer holds his clothes?(in the past when he went to iraq he didnt take his normal clothes, but for korea he will) the thought is overwhelming to suddenly have him gone...even his items.

i feel like im suffocating, time for some zoloft and some sleep.....

tomorrow is another day, another day as a family together, whole, complete, another day to cherish and store in memory. another day to wake up and say...i love you.

Friday, October 10, 2008

bustin out

well it appears, unless something changes in the next hour....pray it doesnt...we are on our way outa here!!! his pulmo is confident that zach scared the other docs and he said he told the er doc to give him oral antibiotics and send us home, but the dr was nervous (understandable with zachs history) so anyway zach has been given antibiotics, he is acting normal and we will go home with antibiotics as well. dr said he is pretty certian zach got a virus and the virus caused the congestion and also caused the pink eye. so a decision has been made, the Davis family willnot be trick or treating this year instead the boys will dress up, have a scavenger hunt or game of some sort in the house for candy, maybe bob for apples and stay up late, this was were guarenteed not to catch something from the night air or from the candy (someone could have a virus handing it out)at least the boys are young, all they care about is candy. lol. we will be burrowing up for the winter i do believe and making only necessary trips out with zach. ive also decided to become much more diligent about making sure mikey comes out of school clothes and washes up before he plays, washing hands much more and doing our best to live in a bubble. :) sorry to anyone that this may affect, especially trick or treating, but zachs health has to come first. incase i havent mentioned it lately the PICU at scott and white has been such a blessing, we have amazing doctors here were so lucky to have the compitent team working with zach, the nurses are outstanding, infact last nights nurse, linda was awesome, i was allowed to administer medications, silence the darn alarms, set up his feeding (ended up not being able to use it as they wanted him to be only iv fluids) and we talked and talked, she even brought me a patient mattress instead of the normal hard one that parents sleep on...let me tell ya that was the best PICU nights sleep ever. so i just want to give kudos to our pulmo, our gi, our neuro, our cardi and all the picu nurses here! thank you!!
hoping to be home for the holiday weekend very soon. thank you all for your thoughts and prayers.

Thursday, October 9, 2008

familiar setting but not home!

man, zach is sick again!:( he started 2 days ago with a slight red eye, no drainiage or anything and then yesterday was cranky with a temp. today he has been vomiting lots of flem, fever, but not bad, and eye is still red. took him to the local clinic today and as the doc, who had never worked with him before, was examing his ears, he became pissed off and was crying so hard he desatted some, and well the cycle continued until she was very nervous, she then called the ER and sent zach over via ambulance...sigh. once we get there they want to intubate him (insert the breathing tube down his throat and put him on a vent) and why you ask? because he was satting at 73 with basically a blow by on oxygen, i stopped them before they began and asked why he couldnt wear the canula, they put it on him and wham...back up to 96.they took blood, this was another disaster...zach is a hard stick because his veins have all been used sooooo many times, so they get one and it blows and blood goes everywhere, carseat, floor, hands...everywhere and 14 people are racing around to get the blood collected for tests! they ran a RSV test and flu test, took a xray and finally got a working iv that they gave him antibiotic the chest xray showed what looked like pnemonia, and with that we were sent back to the familiar setting of the PICU. zach is resting now, so far what im hearing is he does have congestion on his left upper side of his lungs and pink eye...poor guy. im so upset, this is very well the last weekend harold will be home, we need to do much around the house, finish the fence, clean the garage (catch the new lil mouse i just found in the living room this morning) get things ready for the boys for harold leaving....talking to them,getting harold to make videos for them. i told the doc harold is leaving so if things go well and he feels zach is okay to go home he might let us, he is a very cautious doctor so i know he wont do anything to risk his health...nor would i. pray hard...maybe just maybe we wont spend the whole weekend here! we know with zachs lung conditions the slightest cold could send him back to the hospital, so that considered even though zach is requiring 4x the amount of 2x the amount of o2 than at home, he is satting 99-100 and doing fairly well. pray he continues to only improve! im drained and im just ready to have zach fully well.

Sunday, October 5, 2008

party time

Today was zach's 1st, 1st birthday party, 21 days early, just to ensure dad could be here for the party. it was very quiet and very small, but it was an enormous milestone for us. this represents the last 11months 1 week. the whirlwind of our lives, the never knowing what tomorrow would bring, the hoping and praying Zach would be with us one more day, and then one more. the silent prayers before surgery and pleading with God to be with him and bring him back to us. the hours we have logged into the NICU and PICU's the countless elevators taken to see our baby. watching as others go home and begin their journey unsure if we would get that chance. and today, Zachary sat in a highchair for the first time, and we sang happy birthday to him. he didnt know what the deal was, he didnt "get" the cake, or presents, or the celebration, but we did, and we know how lucky we were to not only have dad here to see this but to have Zachary here to celebrate. Zachary's birthday theme was "itsy bitsy spider" his invites had his footprint on them and it said "itsy bitsy is turning 1" its true Zach sure has come a long way from his itsy bitsy 4lb 7ounce 18 inches self. zach now weighs in at 22lbs and 9 ounces and 27 inches long.
the party was a lil bittersweet, as said above we are ABOVE greatful and amazed to have Zachary here, but Zach is around 3 months not 1 year, buying gifts for him was hard, he cant push or pull or grab or play with toys, he cant roll over or sit up, he doesnt care for to many clothes, but we did decide on some lovely books, some we plan to read and interact with him with them, and that i think will be a wonderful gift each and every time. our bonding, our sharing, our connection.
tomorrow starts another week, one where harold will be headed back to work, the week vacation was nice, but never long enough, and mikey back to school. zach will also be getting back to therapy, he has had 3 days off, its back to the grind! chance seems to be getting ill, i pray its only allergies as he has been sneezy, runny nose, coughing, so we put him back on zyrtec after being off for about a month, he is still on his singular and still on his asthma meds, tonight he said his throat and head hurt, and was slightly warm, so i gave him tylenol and airbourn, hopefully we can knock this out very soon. i have gone over the house, nearly every surface today cleaning and disenfecting, i pray this helps and no one else will get sick, especially zach. heres to a productive week!!

Wednesday, October 1, 2008


well im emotional, i think this is a normal thing for most females? ive always worn my heart on my sleeves...not always the best thing, but the only way i know. sometimes i hate my emotions, hate to show them in public for fear of being weak...though i guess at times its good to show this, to show the "human" side of it all, but its something im not comfortable with. as result ive had doors litteraly closed on me by guys walking ahead of me as im carrying a ton of things and they dont bother to hold it open, ive dropped huge items or had to carry heavy things for far distances while people walk right next to me. sometimes at low moments these incidences can leave me in tears, others i brush it off.

but back to the emotions, being an emotional person stressors and anxiety have bothered me a lot, and with the whirlwind of our lives, as i have said i have gone to the "crutches" of medication to help with this. well i recently upped the amount of medication and am hoping this will provide more aid. life is hitting hard, hard enough that times of watching john and kate plus 8 and autism x 6 are still not leaving me feeling like we have it all that much easier than they do, i find people telling us how seeing us with the boys make them feel like they have it easy.....soooo not what you want to hear right? some days a good scream in the pillow would be soooo appropriate!

today im feeling many emotions and things just keep coming. today is oct. 1st, that means at most harold has 3 weeks left here at home before he goes to korea, 3 weeks isnt much time. 3 weeks to spend time with the boys, to memorize their faces, 3 weeks to get projects done at the house, 3 weeks to make videos and tape recordings for the boys, 3 weeks to prepare for a year apart. in this small amount of time we have zachs first birthday party, earlier than his actual birthday, we have a babyshower, we have to get the fence finished at the house, the rooms finished painted, we have to do so much, and still enjoy our time and cherish the moments we do have left. so today it hit me, and i doubt all the medication in the world could have helped with the emotional roller coaster i felt. Then i went to get mikey from school, and his teacher greated me with a smile, mikey had passed his spelling test with a 100!!!! my joy was thru the roof! i was so happy and suprised for my lil boy. then i learn that that was only done orally, done written, he failed miserably:( this sent my heart into my stomach, we work so hard with new techniques at home, we use tacticle learning things, we study and work hard, then his teacher told me, she wants to have him tested for dyslexcia (sp) again my emotions were mixed, on one hand im so greatful to have a teacher who cares and sees his potential, who doesnt just write him off as a bad child unwilling to try, and on the other hand i felt sorrow for mikey, if this is indeed the case its something im sure he will struggle with for a long time and i hate that for him.

so its been a very emotional day, and i fear this is just the begining for at least a month:(

Friday, September 26, 2008

an unwinding session

its that time again, its late and im tired but cant sleep im sure of it:( we had an extremely busy day to the point im shocked that we made it! what started out as a simple pedi check up for zach prooved to be much more than that. i just needed referrals, a shot of RSV for him and a small look over, what i got was a unexpected chest xray (came back fine) almost running out of o2 causing me to borrow the clinics extra oxygen tanks until we left. we got the referrals for therapy, for an ortho doc, for a bath chair, we got zach a RSV shot. what we didnt get...a flu shot as they dont have them yet, and a direct answer as to "does he have cerebral palsy?" i was told it could very well be since he did have brain injury. still no definate answers. we left there 2 hours later and drove 40 minutes out of town to get more oxygen from our home health company and then we came back into town just as mikeywas about to get out of school....perfect timing. blah. exhustion set in as i quickly got zachs meds going and got his feeding set up before his therapist showed up for session at 340.

i recieved zach's speech pathology swallow study order today in the mail, it was writen up with what the results were , it stated that zach was able to swallow the substances once gottan to the back of his mouth, they also said that "the patient" seemed to be alert, calm and had sporadic head twitches or tics to the left looking like saying "no" that seem to be involuntary....this made me stop....he has been saying "no" to us many times a day for many days/weeks now. we thought it was cute:) now it looks like it could be something else....a seziure? a movement disorder? BLAH!

Zach is Zach no matter what we are inlove with him and are so very proud of him.

Mikey also did something today to make note of. even though he has been having trouble with his writing and sounding out words, mikey made a 80 on his spelling test today! he was first given it written and he failed...words like BACK were spelled like "vax" and when the teacher gave him the test orally he got 8 of the 10 words, the ones he missed were "your" and "they" so its proving to be a processing issue like we suspected, ill bring it up to his therapist on the 8th.

Harold is on leave for 10 days, we are very happy to have him home with us to spend some quality time and get some things done, but what upsets me is the fact that the leave comes because he is preparing to go to korea, i guess no matter how many times i say it im not prepared for it.

heres to a great weekend!!

Thursday, September 25, 2008

Goody Goody Gumdrops!

wow ive had an accomplished kind of day, the kind where you look at all things differently, maybe not completely but really much more light hearted! a huge relief was taken from my shoulders today, i called Annie our MDCP(medically dependent child program) case manager to find out if we would be getting medicade back by oct. 7th, she informed me that we actually got it back 7 sept! so this means we have had the 19.5 hours from MDCP (they run over for up to a year) a week for the last 3 weeks that we havent used!! that plus what insurance pays and if we still need more from medicade we will be SET! this also opens the doors for other things, better equipment, more services, its just sucha relief! then i call the medical supply company and they tell me the new (teeny tiny) feeding pump for zach will be here next week!!!! EEEK its like christmas! lol im thrilled.

after MANY calls this week and an email to another doc, i called for the 3rd time today to our local clinic to get zach seen by a pedi doc, i originally wanted his pedi doc so we could meet him, sigh, but it didnt work and in the end i need to get him seen...i need to get zach a RSV shot, a flu shot, therapy referrals, a referral to the ortho doc for his scoliosis, to get a referral for a bath chair for zach and more....poor doc tomorrow thinks were coming in for blisters. lol he is gonna be shocked!

tomorrow is Friday! man i am sooo ready. Harold is also gonna be on leave for 10 days, thats 10 days to get things done around here and 10 days to spend with him. its kinda bitter sweet, i mean i love to get to spend time with him but i know its only cause he is preparing to leave. sigh. tomorrow is mikeys second week of spelling tests, the first we know he bombed, he was suppose to have a "practice" one on wed, but the class cheated on it and it got tossed out...yep first graders cheating...and to top it off who was the leader? yep you guessed it...mikey. when asked why he did it he said because he didnt know the words(the same words we go over every night!) he erased them from his page and didnt get caught from the teacher, but i had him tell her he cheated too and he was the ring leader....she was very accepting of his apology, so that was nice, but i felt he needed to take responsibility.

so heres to the weekend!!

Sunday, September 21, 2008

life is hard sometimes

well i originally had this blog for us as a family to share whats going on, and here lately i know its been kinda an outlet to the struggles with Zach, and that wasnt the intended use, but i must admit it helps greatly, even if im just writing it and no one reads it, to get the worries and the fears and the stresses out. it helps. but i do intend on getting the blog back to us as a whole. some posts may be more on one person or one area from time to time, but i hope to eliminate basically copying from our carepage, so if you are looking to hear about zach mainly, please go to join, sign in, and search for zach's page, his page name is zacharydavis no spaces.
i think i may have mentioned in here prior about Mikey, he was diagnosed at 18 months with SPD (sensory processing disorder) and underwent ocupational and speech therapy until 2 years old when we moved from germany to texas, i attempted to get therapy started up here but didnt know the right channels to go thru and kinda just thought he would grow out of it, yes i dropped the ball, i was younger and not nearly as wise, and i believe it hurt him:( and added stress to our lives. now fast forward to mikey at 3 years old, Harold is back in iraq and i am home with chance and mikey, mikey now refuses to take naps and wont sleep at night...i tried it all...finally broke down and took mikey to dr's they basically told me tuff crap we cant do anything, so i went to see a mental health doc, mikey was still to young to be diagnosed but i was told he probably had ADHD and to give him melitonin for his sleep issues....well he is now 6, still on melatonin, we have also tried clonidid and now remeron to help him sleep, and chance too as they dont sleep on their own much at all (chance started at the same age) mikey is now diagnosed with ADHD and we have him on ritalin 2x day. some days are better than others and some are pure hell. well last week we encountered another issue....mikey had his first spelling test words such as cat and hat and he spelled them all xaaa aaaa xoooxox well i think i wrote how i had zachs therapist look at him and now we think he may have a processing disorder maybe auditory processing disorder? i just feel like he cant catch a break! i dont want him labled as a bad kid or a stupid kid, cause he is certinaly not! tonight we did some "tacticle" learning, we used shaving cream on a plate and mikey wrote his words in the shaving cream, this seemed to help him remember what they we can only hope things like this may help.
theres a new show on TLC (where john and kate plus 8 come on) called the curtians? autism x6...yes they have 6 kids with autism! wowzers. i am looking forward to watching the premier in the next week or so.
we had a nice weekend, on saturday we picked up our family photos and grilled some ribs out, on sunday harold took the boys to church and we had pizza for lunch. harold ended up having to go back to work for a lil bit as some of the guys are leaving early this coming week. he knocked a few things on his hunny do list and we got to relax some. this coming week im planning on making zach a pedi appointment and we have 5 therapy sessions, should be a nice busy week!

Friday, September 19, 2008

oh bother its friday and im alone

wow, well i started this week out on a positive note, very happy go lucky and then as we wind down to today, friday i find myself in a funk. lets start with monday, Zach began to vocalize more on monday, by more i mean any, and of course by vocalize i dont mean mama or dada or baba i mean like ooooooo or a small squeal like noise, but its a noise other than crying for him. its progress.Zach had a swallow test on tuesday to see if he could infact protect his airway when swallowing, he did and we have been given the clear to get a speech therapist envolved and the GI doc said we can begin to introduce formula and solids to him, though let me tell ya with the oral adversion and probably the sensory processing dysfunction in his oral area this will be no easy task. still im up for it, i hope that zach can one day enjoy food. zach has been recieving ocupational therapy 3-4 times a week and developmental therapy 2 times a month. im trying to get physical therapy envolved and speech therapy, this could proove to be a very busy and trying time. in fact yesterday with his ocupational therapist i basically asked in a round about way how long i should expect therapy to last, dont get me wrong i know things wont change over night, and i know zach is way behind, but she told me stories of other kids and said some of them are 3 days a week for 3 years.....i think my heart sank there. just pure mental exhustion. ill be okay and we will deal but damn is all i can say. zach has been crossing his legs alot when we pick him up, his legs also bow out, some tale tale signs he needs physical therapy and probably some leg braces, this could be another indicator he will have CP (cerebral palsy)as if he didnt already have enough of these, infact ive had enough and am getting zach into the pediatrician next week (crossing fingers) to have him evaluated and to get some referrals and therapies started, i also need to get zach seen by an ortho doc for his scoliosis and have it monitored.
chance is doing well, he is roudy and as talkative as ever. he actually ran head first into mikey last night and ended up with a black eye:(. dad shaved their heads on monday and they are bald now. lol. ive been doing some "homework" with chance during the day, he seems to enjoy and he is so smart! he knows his colors, shapes, how to count to 20, some of his letters, number sequences. im just so proud of him!
Mikey has been in a mood, the medication doesnt seem to be helping at all and im about wiped out to figure out what to do for him. now he is also having trouble in school, his spelling test consisted of words like can and had and bad and hat and mat and he spelled them all basically xxaa or xoxo or aaaa??? WTH? we go over the words, he can tell me them orally one second and then not the next. he tries to memorize them and acts like he cant sound them out, doesnt understand the concept. his handwriting is in need of help! im planning on getting him some work books to help him as well. im worried about a learning disability like dyslexia or something i think its something more than ADHD. to top it off Harold is getting ready to go to korea and wont be able to come home for a year, he can take 2 weeks leave but we will have to purchase tickets for him to come home...1500ish bucks! even in case of an emergency where he is needed back ASAP we will still have to pay this amount! its insane to me. im so flippin mad! yesterday he found out he has to work another 24 hour shift tonight so its me and the kids today and tonight on our own.
im hoping to grill out tomorrow and cheer up this house! we got some ribs, onions and brauts to grill!! mmmm.

Tuesday, September 9, 2008

Tramatic Brain Injury

Yesterday was pure hell on me, but since im typing this so it means i made it hu? we had 3 appointments, plus the pharmacy and getting more o2 from the home health company yesterday, the little trip lasted from 930am to 330pm...when we got home i crashed!
i wasnt able to crash for to long though as Harold had a unit function to attend, so we gathered up the kids and went to a bbq. it was better than i thought, some wonderful ribs and burgers and Harold even had some deer Chilli...not for me though thanks:)
this morning we had 4 more appointments for the other boys:( for their behavior and that was over by 1030 luckily i came home to real changes for them, chance is being nearly 100% better, not sure if its mikey is gone or better sleep with the sleep medication, but its working. mikey is still showing out some, but no medication changes in him just some ajustments in time outs and such.
ended up needing to go to another pharmacy today and then the new ocupational therapist called and wanted to come by today, thursday and friday...eesh its been a busy week. Harold is on 24 hour duty tonight so he will be home tomorrow and sleep most of the day im sure. :(. im so drained and so tired! but when night comes i cant sleep....go figure?
Zach is still 21.6lbs still 27 inches(he hasnt grown in inches since we left in june) and 17 inches in his head size(small) the GI doc was happy with his weight and ordered a swallow study next week, this will help them to see if he is swallowing correctly or if he is aspirating into his lungs, this will let us know if we can possibly even attempt to feed solids or liquids to zach. next month when zach turns 1 year old they will move him from his current formula to pediasure. and other than the swallow study we dont have to return to GI until Dec. Zach also had a repeat echo done yesterday, results i wont know until friday when we return to the cardiologist.
Therapy went very well, it was more of a bonding time this time, she did however make him use neck muscles and back muscles and tummy time, we talked about his diagnosis' and a plan of action. she was told by the other therapist who evaluated zach last week that zach doesnt cry...and he really doesnt unless he is majorly pissed off or hurt. there seems to be some concern in this aspect, since he isnt babbling, or talking at all, she mentioned speech therapy may need to be brought in.we talked about zach being weaker on his left side of the body and preffering his right side. Zach also got some unexpected but much appreciated guests, Bro John and his wife Jannett came by to see us. we have been so bad lately for not getting to church, i know they came to remind us:) and to see zach of course. he loved the attention.
Things i suppose i never thought to ask the doctor until now while doing google searches....zach has billateral brain atrophy (his brain has shruken in the front) he had subdurmal hematoma, this is a result of a Tramatic Brain Injury TBI, he had a midline shift that has begun to correct itself after the last surgery on his head, all of this combined or even one single item could prove to be bad news later on, no one has commented really on what we can expect.
while at the appointment yesterday carrying around the diaper bag, oxygen tank, pulse ox machine and zach the nutrition lady (a sweetheart) mentioned the possibility of getting zach a specialized chair that could help hold his items,...this is definatly something to think about i suppose, we had hoped he wouldnt need that, but i think therapy is going to be a long road, not one zach cant do, just a long road. i still truely believe he has cerebral palsy, i think waiting till 6 more months pass could harm him:( ill have to try to get a second opinion to diagnose now. im trying to introduce to Harold the idea he could come home when zach is 2 and he still cant sit up on his own, this is hard to do though and hard to think about. Tramatic brain injury...all i can say is Why? i havent a clue. ugh, time to get ready for the night nurse....
heres to tomorrow....unless i forgot to write something down my calendar is EMPTY tomorrow:)

Thursday, September 4, 2008

a weekend full of hope

yes i know im a wee bit early with the whole weekend thing, hu? well its simply because i dont know when ill have a chance to get back on. tomorrow is our big night, the one we have been hoping and waiting and praying on, tomorrow we will take zach to a nursing home, all his gear in tote, his medications, his machines, his oxygen, his formula, his boppy, his blankets, my blankets and pillows and whatever else and we will roll into the nursing home around 3pm. i will be staying with him of course, over night, we will leave out around 7 or so saturday morning. the sweet sweet beauty in this is once this is done....and the 30days have passed, zach will automatically...not according to income, qualify for medicade, this is a huge step for him as it will open more nursing hours, respite care hours, medical equipment, and more. im beyond excited to get this overwith, and to think, if i had listend to a certian someone at the hospital who said we wouldnt qualify, we wouldnt have this opprotunity, im so very greatful for the inspiration of others who have walked in our shoes for helping and guiding me to this decision. Thank you!

so as my last post said we dodged a huge hurdle today, with the negative results for infantile spasms, very greatful i am indeed. i had done soooo much research on it, so that if the answer had been yes we would have known the treatments, and the next steps, i talked with many wonderful moms who have gone thru this and its so heartbreaking, my thoughts will always be with them, thank you for your support thru the waiting.

on saturday we are having family photos made....WAHOO!! its been a really long time since we have done this, since before Harold went to Iraq in 2005, when Chance was just 8 days old, so its long overdue, and with him preparing to leave again, we need to get this done. the boys have MATCHING shirts....sooo cute, i cant wait to see how they turn out.

as i was typing this, we had to inturpt this and call 911 again for Zach, yes we though we were headed yet again to the ER and the PICU, our hearts stopped. Zach begant o cry a very strange cry and when we checked his pulse ox, he is on spot checks, as he has blisters on his toes from the probe:(. so i check the pulse ox and to our suprise zach is at 48! we trouble shoot again the line is fine, its connected, the machine is on, we begin to try and wake zach, his sats go up when we turn him to 2 litters, to 66 and then at 3 littes he hits the mid 70's, and then begins to go down. i called 911 again and as im on the phone with him he is shooting back to 97, it seems his humidifier kit has a pressure release valve and it was stuck! once we removed the stupid thing and connected to straight oxygen he is fine! ambulance came out anyway and checked on him, the same guy from last week....we will soon be on a first name basis with him. sigh. to much drama tonight, im tired. our nurse is here and im headed to bed.

results are in

Neurologist just called, zachs 24 hour EEG last week showed no signs of infantile Spasms!YEA!!!! this is wonderful news! one diagnosis he was able to jump over! Thank God! so all the twitchin he does, is simply that...twitching! i feel like a heavy weight has been lifted! Thanks for your prayers and thoughts.

off to get mikey from school......:)

Tuesday, September 2, 2008

the last one for today, a bit of trueth and humor

Moms of SNC (Special Needs Children):
….some reflections and even a little humor….

You know you have a special needs kid when….
the pediatrician insists you call her by her first name.
your kid’s accordian medical file is 4” thick.
you feel you’re constantly in survival mode.
your medical deductible is met by mid-January.
you go for a highly specialized procedure (e.g., a colonoscopy, an EEG, an MRI), and the tech states “you look so familiar; have you been here before?”
you loathe the “developmental milestones” checklist at the pediatric “well baby” (HA!) visits.
“friends” don’t ask you to watch their kids because they fear you’ll ask them to return the favor.
your child is 18 mos. old and you long to have a book barbeque with your copies of “What to Expect: the Toddler Years” and “What to Expect: the Preschool Years”.
you feel yourself stifling laughter when others complain about their child’s “tragic” otitis media or (gasp!), their ordeal with immunizations or a blood draw.
you find yourself resenting any therapist's criticism of your little one's mannerisms ("fix your legs!" "don't rub your head!" "don't flap, just give a clap!").
your mail carrier must think your home is a pseudo-infirmary based on the bundles of Blue Cross/Blue Shield statements you receive.
your child is 2, and has a “medical resume” of sorts to facilitate succinct meetings with new medical professionals who are taking on your child’s case.
you deny your anger to a counselor, yet you long to create an iron-on tee-shirt that reads: “Screw you! He’s special needs!” (This could also apply to bumper stickers, key rings, personal pens; hey, maybe I’m on to a new merchandising trend!)…
you have a vast reference section under the category of your child's illness (also includes at least 5 three-ring binders with 8-pouch pockets sheets filled with medical business cards and contacts).
the quote “it’s nothing that a little prozac and polo mallet won’t cure” is especially poignant.
you see that doctors are human and insecure when they realize they can’t help your child; ("So that's why they call it "medical practice"; I get it!").
out of respect and empathy, you never turn your head to look at a handicapped person, and you are especially irked when you see people stare.
you understand “McDonald’s Envy” (i.e., kids at McDonald’s playground who do so easily what your child cannot) all too well.
you get excited to meet another parent “in your shoes”, as if another child with the same malady is something to celebrate (?)… (It’s so odd!)
your child’s name is permanently etched on your church’s prayer list, and you are on church prayer lists in at least 5 other states.
upon overanalysis of your childhood, you are convinced that you had the same problem as your child, but to a lesser degree.

Faux Pas:
being overly nice to my kid
ignoring my kid
treating my kid like there’s nothing wrong
Yes, that’s right, you can’t win!!! (Sorry, I’m just the crazy mom of a SNC; are you uncomfortable yet?).

a therapist says: "I just saw a child with something similar to what your son is doing; not nearly as severe, of course, but I have seen it before."
“We’ll keep our fingers crossed!”
not listening to the mom: (to one of my relatives) “No, I don’t think you should feed him that; he’s got major sensory aversions to foods like jello, pudding and oatmeal…. I’m serious…” “Ohhhh, I’ll just give him a little….” (gagging noises, then vomits)… They never listen.
advice. Lord, please no more advice. “Well, did you try _____________?” (fill in blank with any remedy under the sun. My favorites are when non-SN parents/non-medical people list off medications, or when they ask if it’s my laundry detergent or some other household item causing my son’s problems).
“Everyday when I think of you, I realize how fortunate I am to have healthy kids”
what we say: “Ohhhh, I so glad that my child could help you see the blessings that God has given you.”
what we want to say: “I’m so glad my misfortune makes you feel better about your life!”

The Sunny Side of having a SNC:
a SNC is a “bad friend” filter.
all sorts of medical professionals seem to immediately recognize you when you’re out and about (“all this and fame too!”).
you lose all old neuroses (I suppose you trade them for new ones, but let’s be positive); a clean house, for example, is out of the question.
you gain immediate respect from strangers/friends by your “in-depth” medical knowledge; (aka, a self-taught PhD in the category of Williams Syndrome, for example).
you get to take vacations to many big and exciting cities; “Pack your bags, hon! We’re going to Boston! (Children’s, that is…)”
it's December, and upon analysis of the full year's worth of medical statements, you smile and think, "Gee, for what we pay out in medical premiums and deductibles, I really got my money's worth!" (It's like an all-u-can-eat medical buffet, and you're a hungry, 500-lb. fat person. A more succinct way of stating this is "the all-u-can-eat medical buffet is losing money on me!").
you have a really good excuse for:
not showering today
being late
being forgetful
being a sloth
maniacal depression
not paying bills
not attending playgroups
not shaving
not attending the company Christmas Party, and all other outside company “fun”
being rude to telemarketers (or, in my case, bill collectors), parents, and spouse
not having sex
being hostile in traffic
in sum, total self-centeredness
you truly appreciate every developmental milestone that your child has mastered.
you realize that your child is somehow God’s instrument (although sometimes it feels like he’s God’s hammer!)
you cash in your innocence for wisdom (or is this a disadvantage?).
you begin to understand the essence of unconditional love, and strive to give it.
In this sometimes dark place, you are able to see more vividly Christ’s face and God’s fingerprints

rambling on

well somedays it seems i have alot to say...or maybe i just think i do and its just meaningless chit chat? either way, the blog has become an outlet, one i wish id had sooner...but nonetheless im happy i have. ive been doing a TON of reading thru peoples blogs, i read my normal ones, and flip thru their friends blogs (im not the only one who does this) and i read about my beloved CDH babies blogs and more recently ive stumbled upon some wonderful readings from topics of special needs kids, infantile spasm kids, cerebral palsy kids, developmental delay kids, autistic kids and more, i read their struggles and fights and leave feeling a mix of emotions, anger that they have to endure this, pride that they overcome much and fear that zach may end up on the worse end. i have yet to find (maybe i havent read far enough into some of the blogs) a child like zach, now i know there will be differences of course, but i want to be able to flip to a blog and, its like our story...i guess what i want is someone who has traveled the road were on to guide me in the decisions and paths we need to take the cheaters way out i suppose. of course this wont happen....with everything zach has...CDH, developmental delay, possibly cerebral palsy, possible infantile spasms (still waiting for results) chronic lung disease, restrictive airway disease, scoliosis, pulmonary hypertension, pulmonary hypoplasia, hypotonia, subderal hemotoma, gtube fed...etc. each condition varies with each combine them all and no way will someone travel our exact road...i pray.
sometimes my blogs will be to raise awareness or to share feelings, sometimes it will be for the readers, however few there are, tonights though is really just for me, to pinpoint where i was/am emotionally today. i was very "driven" earlier and read thru a huge number of blogs, a new past time for me, and i found something id like to post here, for anyone who would like to read them, and for me to just remember.

this is called the mother at the swings...

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.


It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.


its not everyday i can actually say i have been really productive, it seems life gets in the way of my plans and before i know it its night time. last night i laid in bed tossing and turning and thinking of everything i needed to get done today. i blame the insomnia on the mood pills...but considering my mood is awesome and my emotions are in check, i suppose its a small price to pay.
anyway this mornin i woke up at 545am, had mikey and chance up at 610 to eat cereal and get dressed, i had zach hooked up to all his portable equipment and us all in the van by 650am to take mikey to school. when we came back i cleaned out the van, did 3 loads of laundry cleaned both bathrooms and loaded the dishwasher, called and made zach a nursing home appointment for friday and left a msg for neurologist...not to shabby for 10am. there is still a lil id like to get done today, but i feel very happy of the things already done.
last night as i laid in bed tossing and thinking i thought of previous conversations with friends years ago and suddenly realized why zach is how zach is, many times i always said no matter how the baby was born (with down syndrom or another issue) id have the baby and raise it, termination was never an option, so it only makes sence God wanted to test my faith and beliefs, we are blessed to have Zach in our lives, he enhances it daily. chance has really become the over protective brother, its so sweet. mikey even sneaks in zach time and talks to him or kisses him. we may not be rich but we are blessed with wealth far beyond money and material things, we have love and the end of the day thats what you count on and look for anyway.....

Monday, September 1, 2008

memorial labor day weekend

This was our first labor day with Zach as part of our family, even better he was here with us at home. some days things look so peachy, its perfection, and sometimes the skies are very dark. this weekend was very peachy! we did some painting around the house and got our bedroom nearly done! im excited as i didnt anticipate having it done before Harold leaves for Korea. time for that is ticking closer as well and i find im very anxious about it and very moody, in fact i forgot my pill the other day and just as my emotions got the best of me it hit me, i needed my pill. how is that possible sometimes i wonder, but truethfully at least for a while i need the help. we lounged around this weekend and i lost track of all the laundry i have left to do....tomorrow....blah. we had dinner with some friends tonight, it was nice to get away and talk normal talk. zach seemed to enjoy as well, he planted himself on the cumfy couch and didnt move, he looked around and watched the ceiling fan. this coming weekend we are having family pictures long as zach agrees, im very anxious about these, and excited as well. the boys all have matching shirts and they are too cute and sooo true to their personalities. i cant wait. tomorrow is school day again and work for harold, time for me to clean and get things ready for the week. Happy Labor day

Friday, August 29, 2008

home sweet home

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

Wednesday, August 27, 2008

knowledge is power but ignorance is bliss

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

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

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

and Zach said...let it be done now

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

Sunday, August 24, 2008

date night

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

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

good for the soul

The Special mother

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

by Erma Bombeck

Saturday, August 23, 2008

and it starts

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

Monday, August 18, 2008

ready set sleep

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

Sunday, August 17, 2008

weekends over

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

Tuesday, August 12, 2008

rough day

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

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

Sunday, August 10, 2008

feeling blah

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

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

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


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