the family

the family

Thursday, July 24, 2008

time to breath, reflections

Zach's surgery has been rescheduled...maybe it wont even need to be done. wouldnt that be awesome? if everyone prayed on it and Zach's body was able to re-absorb the blood into his body rather than his head, and he didnt need surgery? just a thought. hint hint. its 1213am, the house is soooo quiet, its wonderful. let me back up.

Zach's doctors came in about 3pm and told us that surgery was going to wait, they wanted to do another head CT on sunday and see the results (so see there is plenty of time to send your prayers up) and then depending on that he may or may not need surgery next week. luckily we have the luxery of a bit of time since the blood has been on his head for weeks, or months as the neuro surgery doc said, its not a rush rush thing, but it does need to relieve the pressure from his poor lil brain. so anyway me and dad switched places and i came home. it was time to be home. though dont think for a moment i got to relax...pppffttt. not till about 1030pm.

i arrived home at 5pm with boys in back seat of the van fighting...whats new? and i came in to see my house....kinda messy. in dads defense it wasnt bad, just some laundry and dishes and crums on the table and sweeping and cleaning the boys bathroom....and clearing some of the counter space. so i do this then i have to go to UPS warehouse cause there was a miscommunication for delivery...blah. so i go and guess what? the warehouse is about 20 minutes away...are you kidding me!? so i get there adn come back and its time to pick my inlaws up to take them to dinner (something my husband was suppose to do but since im home....eeehh) and by the time we get home its 9pm. time to bathe boys and brush their teeth and rest.

i sat on the computer and thought, and did some research for zach. it appears zach has been having myoclonic seziures, these are small twitch like seziures. also he has had the absent seziures, where he just stares off, and the atonic seziures, where his body goes limp. im trying my best to get on top of all this lingo so i can communicate with the doctors, when you know what your talking about they listen better. sooo these are the types i believe he has had. and thinking back, i think he has had these for a while. bless his heart. back in december while we were in houston at texas childrens they did an eeg on him for research i believe, anyway i asked the results and remember them saying they showed abnormal brain activities but they said there was no way to tell at that age what exactly that is my hunch...either he had blood leaking onto his brain then making him have the abnormal activites (same words they used this time to describe the seziures) or his seziures arent completely from the blood. zach has twitched for a long while, but shoot i didnt know that wasnt normal, i mean its not full jerky movement, just while he is resting and such. this could also explain why he sometimes sleeps so long...he has the post seziure stuff (cant recall words right now) and it makes him sleepy. i need to pay more attention to these areas and keep a better track.

so anyway harold registered mikey for school today, new school same district since we moved, anyway they wanted to register chance for first grade they thought they were twins...wouldnt that be a hoot,...chance in first grade at 3.5 years old. anyway this seriously gave me a chuckle today. but back to mikey, his new school has a dress do i feel about this? im okay with it for older kids i guess, i understand the reasoning and such, but for younger ones i dont get it. but it will be okay. i hear it will make my morning routine easier...and i guess judging by our life...easier is better.

well its 1230am and im finally relaxed enough to think of sleep. mmmmm a real bed not a cot from the hospital, here i come bed....night.

Wednesday, July 23, 2008

When hospital is like home

wow, well many of you may not know, zach had a seziure on saturday, the 19th of july (a date im BANNING from our house... last year we learned of the defect this year the seziure..) i had just come home from the grocery store and he began to twitch. we ended up calling 911 and 10 minutes later they were taking my baby to the er, the er in turn took him to the big hospital 30 minutes away....where zach spent a huge part of his life.

once he got to the hospital they ran a head CT and found BLOOD on his brain...typically this is from shaken baby syndrom or a car wreck, so of course it wasnt looking good for us. one of the docs that know us came to us to tell us she wasnt going to call CPS but another doctor may. we were devistated not only are we now facing a whole new issue but now there is thought we may have to fight CPS! im so tired of fighting.

on monday zach had numerous tests, full body xrays to make sure there were no fractures, none were found. blood and urine tests, mri, everything seemed okay. then the eeg came, it showed seziure activities. so zach was started on a seziure medication.

yesterday zach had a eye test to make sure there was no hemmoraging behind the eyes, none was found. the blood seems to be old and thats a good thing i suppose. it doesnt appear to be still bleeding. they are treating him for some pretty big infections that he probably doesnt have, but they have no way of knowing for sure since they cant do a spinal tap on him to rule them out due to the blood on his head, so they are testing him for menengitis and herpies.

the CT on saturday also revealed something we werent ready for, Zach's brain is smaller than it should be, they call it brain atrophy, and apparently it is Cerebal Palsey. wham i mean when things start hitting the fan around here they all go nuts! so this could explain zach being unable to do much motorly, no holding his head, no holding toys, no rolling. not sitting...etc. im so upset and so relieved...does this make sence? i know it may sound bad, but i "knew" something wastn right so now we know what it could be and maybe we can start working on to helping him more. also with his brain being so small there is a much more easy chance of blood entering the skull, so it doesnt have to be so tramatic to happen, he could litterally turn his head and it happen. how scary!

so the doctors want to do surgery tomorrow, to release the blood on his brain. this is quite scary for us, not only cause its a huge surgery, dealing with his head, and his 3rd surgery in nearly 9 months, but they will also have to intubate him and im worried how this will go.

Chance and Mikey are doing okay back home. they spent the first few days with grandparents and then dad was able to come home about 10 hours after zachs seziure and he stayed here with zach, now he is with the boys. i just wish we were home as a family. please pray for a smooth surgery.

Friday, July 18, 2008

a better day

its Friday...this use to be my favorite day, i guess it still is, it always ment the begining of fun and rest at least for a few days. now granted i wont have much of that. but what i awoke to this morning? Zach wide awake, granted he was crying and mad, but he was awake. the boys were also up had been since about 5am...and no fighting. so im working really hard to have a good day myself.
i take zach to the pulmonologist today at 1, to have him looked over. im sure the visit will go okay, he may take some cultures to see what kind of infection zach has, we will see.
Happy Friday everyone! remember to wear red for the troops:)

Thursday, July 17, 2008

a place to release

wow, its been a long time since i was on the looks of the last blog here it was right after chance was born and we entered our second deployment...why is it im now blogging here again at the start of another deployment...i suppose its cause there is so much tension and so much stress, more so now than with the other deployments. im coming upon the day...july 19th, last year we had our ultrasound on july 19th this was the day we learned zach was going to be a boy and the day we learned that zach had a defect, i still hate that word, congenital diaphragmetic hernia, this was a day my world stopped at least short term. i was given options to terminate, and of course i couldnt, wouldnt. but still my world stopped and part of me died, so to speak. a new part was born but that carefree person is gone, i dont regret it, but its different. this was also the day we moved into our new house on post, this house was filled with bad memories for me, the stigma that we moved there on that very day. let me tell ya im so happy to be out of that house and now into our own. we love our new house, i just wish i had longer to share it with Harold.

last week he was "in field" but able to come home at night, this week and next he is gone for the whole time, other than a few "shower runs" that last 1-1.5 hours max. im trying hard to unpack here, clean organize, get everything from old house and keep the chaos that is my life straight. mikey and chance fight from the moment they wake up until they are sleeping. most days i cant even breathe. im worried about mikey in school, but i cant even get him help here at home reading or with math, there simply isnt enough time in the day. and his concentration isnt there, i cant get him to listen to anything, he does his own thing. i had hoped the adderall or ritalin would help, but not so much. and his sleep schedule has been a mess since he was 2, he doesnt sleep. he can wake up at 3am and go until 3am the next day, sleep 2-3 hours and be ready to go again. and before someone mentions it...ive taken everything out of his room before, he plays with his hands, ive locked him in his room, nothing works, the psychiatrist thinks its a neuro issue. probably linked with his ADHD and probably inherited from dad.mikey was diagnosed at 18 months with sensory intergration dysfunction and i think this is still also playing a rol l with him, and he could benifit from some therapy assuming i can find someone around to do it. Chance has some similar isues with sleeping as well.he will see mikey's shrink doc soon to evaluate him, he has been so whinny lately and i hate that. his allergies have been flaring and i worry about his asthma, usually oct-march are his bad months but you never know. mikey is actually on medication for sleep, both over the counter herbs and prescription drugs as well, with no help. all of this combines for some long days and usually some very long nights.
today was no different, i had no time to even breathe. i realize i miss harold's help. im not looking forward to korea, not looking forward to being seperated for a year or more. and quite frankly i just dont know if im up for the challange. i feel very stressed. and though i am forever blessed to have Zach at home with us, he is a LOT of work. he is so delayed motorly that he doesnt do anything for himself and he is quite heavy, 21lbs 1 ounce to be exact. im thrilled to have him home and to watch him grow and get healthier at the same time im so tired. 6 breathing treatments, 17 medications, 4 gbutton cleanings and an 18 hour continous feeding drip each day are so tiring. im thankful for our nursing help, this is the time i run errands and clean, but when they leave its even more chaos. i know one day zach wont need all this extra stuff and it will be a thing of the past and he will be so caught up on everything, so until then this is what we must do.
i realize this is coming off as a vent, and i guess it is, but not because of my kids, just because of circumstances. i love my boys, all of them, though they are all a handful. i just wish we could all be a family together and spend more time together. our 8th wedding anniversary is next week, we wont be able to be together, our 9th he will be in korea, so maybe number 10. im just feeling overwhelmed and lonely tonight, sorry for the vent. thanks for listening.


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