Wow I can't believe that it is almost 2010 it's so weird to think of that..So again been awhile, but kids are doing great. Today took Zachery to CMH to the ENT doctors, kinda a waste of time but it has been so long since he has gone, basically wait till after winter is over and bug season come back and we will do a bronc scope, tonsils?out but until then keep doing what your doing, your doing a great job...So that's good I guess no need for anything major. Allie is doing good to she is her normal self mamamamam...As for the things with the nurse are actually going good, I have been out of the house this last week more than I have been in 5 years! Last Friday me and Paul went to a concert at the Midland in K.C Twisted Christmas it was awesome for me Paul on the other had he's not into that much, but I made him have fun! Done with all the Christmas shopping, and tomorrow my grandma is coming to spend the whole weekend and we are going to make some Christmas candy, I'm excited haven't seen my grandma as much as I like, but this will be her first time staying with us, and our first time making Christmas candy together, so this should be fun! So if it's 2 weeks or more if I get to write again I hope everyone had a safe Merry Christmas and a Happy safe New Year
So it's been almost 2months since I last wrote..wow lots has happned in thoes two months, as last I said I got a nurse to help out. In October little miss Allie was so sick, we were in and out of the doctors office, the ER, the hospital here in Trenton and then off to Childrens Mercy. By the time she was admitted to CMH, she was not doing so well, we went from our home docs saying pneumonia,bronchittis,asthma, allergies...to H1N1!!! Allie was diagnoised with this after arriving to CMH they tried everything they could with her, she was only getting worse with every little breathe she took she moaned:( it was so horrible to watch her. the last resort was to put her on the ventilator and let her body fight, in the process of this she developed pneumonia, pseudamonis, her kidneys were shutting down, her heart didn't want to pump right and she ended up having to have a blood transfusion. she was in the PICU for 20+ days, at first everything kept getting worse, they didn't know what else they could do for her, it was the worst feeling ever not to know, on top of all this they were having problems keeping her sedeated, that littl girl had more meds pushed in her one day they I will ever see in a life time...wow Finally she got better and was moved out of the PICU on to the floor, believe it or not only 7days off the vent we were got to come home finally. so from oct,17-nov,13 Allie was in the hospital I just thank god every day that he gave my little girl the strentght to pull through!!! As for mister Zachery he has been doing great!! I want to keep him this way, it was so hard to be away from him that time, I came home atleast once a week to see him, i missed him so much, but he is doing awesome going to school and being just a onrey little boy:) allie finally went back to school today..ahh leery of the germs for the both of them, but can't keep them in a bubble, but for now were all doing good, and well kids are in need of mommy so I;ll let this be it for now
So it's been quite awhile since I've sit down and posted...Things have been pretty busy around here lately..At the end of August Paul's aunt passed away from lung cancer, as I always do I tried to take care of every ones needs. Also I've been trying to help my mom out who is sick with her own problems, we've made a few trips to Kansas City for her to see the doctor.. For once it's wasn't Zach and Allie! I'm so excited for Zachery and Allie, they started school last week, and seem to be liking it really well. Our mornings are even crazier, I have to get Allie up at 6 and get her dressed and fed before the bus comes at 7:30, after I get her on the bus I get Zachery up and dressed and fed before the bus comes back to get him at 10:00, so from then till noon I have no kids, they bring Allie back home at noon, and then Zachery gets back about 2:30. I find my self not knowing really what to do. I'm working on something to do beside clean! So back to the first day of school, of course I got tears the firs day putting them on the bus. This is the first time either of them have rode the bus. Poor little Allie I felt so bad, I put her on the bus and when I started buckling the car seat, her face was so scared looking, like mommy what are you doing and why are you leaving me, it made me have a lump in my stomach to put my little girl on the bus and watch it drive away:( Zachery was pretty clam with it, like see ya mom I'm a big boy. The first day when they brought him home he was out like a light on the bus. Today Allie was so excited we were singing Allie is going to school and she was clapping and singing, it was so cute. They said that she clapped all the way to school. And my little man Zachery. oh today he melted my heart, when the bus pulled up I was standing outside, waiting for him and, he seen me out the window, and smiled really big and started signing mom over and over again, when I got on the bus and he seen me, he was so excited, like he wanted to tell me all about it. Oh my babies are not babies anymore, they are growing up on me so fast. I was sitting and thinking the other day that Zachery will be 5 in January. Well since I could sit here and go on and on, have a lot to say..But as I was saying I'm hoping to have a little more time to keep up on the blog, I haven't forgot about it or anyone that we follow or who follows us..
I for the life of me can not keep up.. The kids are keeping me on my toes 24/7 i can't turn my back on them or sit down for a few, there is always something to be done here cleaning laundry or just chaing them room to room. man Zachery is getting so fast at rolling, I wish he would just stand that boy thinks that it is so funny to stand that he gets to laughing so hard and just plops down, and he is so heavy that I can't stand him very long..and as for miss Allie, she watched her brother and learns from him. I feel like we have so many appts to catch up on, man if we make them all and go to all of them needed, we mise well just stay up there I've thought about calling a social worker and saying ok we need these put us in the RMH and make them all for one week, I feel kinda like I have been slacking on alot latley, it seems there is not enough time for anything..on that note I did it I have called in for some nursing!!! They are going to be sitting up a interview..I tell you I think i have got so caught up in depression from not getting out of the house much I' feel like breaking some days...with school getting ready to start and nursing I hope it will get better..I just feel almost like I will make the kids think that I don't love them..gosh I do this all the time I feel so guilty.. I have to over come this guilty feeling and I don't know where to begin...any suggestions??? Oh I have to tell you my little man just amazes me he is so loving to me and it melts my heart..I put my finger to my mouth today and said shhh and he put his finger to his mouth and smiled real big at me and I take my and under my chin and say hey bubbby and he takes his fist and hits his chin, he also does that for mom, it's so cute I try to catch alot on video but when the kids see i have it they don't do anything it's like they knw I'm trying to catch them doing things...well thats all for tonight Zach's feeding pump is beeping and he just woke up ahhh it's gonna be a late night with him, awake at 9 so I'll try to keep on top of posting I promise
Sorry it has been so long since I have wrote, things have been so crazy and I'm not sure when they will get back on track...So the kids have been great, knock on wood! They are still little stinkers. The other kids will start school tomorrow, and Zach and Allie start September 8th, so a few more weeks. I have no clue where this summer went, it's over and I'm not ready for the cold weather to begin. So back to the kids..they seem to amaze me everyday, Zachery the little things that he is responding to me brings tears to my eyes, like the other day we were in dollar general and he was sitting in the cart and he looked a little tired, so i said bubby you ready for a nap and he shook his head no and smiled, needless to say that he went to sleep as soon as we got home. The next day I was getting ready to change his diaper and I said did you pee your pants you need me to change you, and he nodded yes and laid down for me to change him, It's so crazy how the little things make you so excited!! oh I was away for 4 days wow, I was in Tulsa OK, Paul's aunt is in the Cancer Treatment Center there and she was not doing so well so I took his mom to see her, and I was so proud I never got lost on the way there or back:) n e ways, Paul had the kids, the first time EVER I have never been away and he had them alone, no mom to turn to cause she was with me, my mom was out of town..and oh boy did he get a reality check, he was calling non stop wanting to know when I was coming home and how to do this and that, and where this although he will NOT admit to me but all his friends say he said that he understand why i get so stressed, but it hasn't changed him much, back to the kids, when I got home it seemed that they had grown 10times on me, bubby was so happy to see me he was signing mom mom mom, and Allie well I think she had become daddys girl but it didn't take her long to cry for mommy! Not really much else new with us still the same, for know and I'm going to try to get some pictures posted and try to keep on top of blogging
Hope eveyone has a safe and Happy 4th..Not much new with the kids, I don't remember if I posted about Allie also loosing a tooth, yep they are both one tooth less..she actually kocked hers out with he tooth brush..anyways I'm stressed about today, oh so many people will be at my house..Paul's wonderful idea!! oh yea me and my mom went and got tattoos yesterday..I felt kinda wierd I took my kids with me but, the guy is Paul's cousin, and I was kinda trippin on it and he was like whats the big deal...so I guess i should get over it!:) the tattoos mean "faith" the chineese symbol of faith..we all have to have "faith" And once again..KEEP praying for Tucker to get stronger and for his family. Have a great day everyone
Sorry that it has been awhile since I have posted..anyways well we have another lost tooth..no not Zachery it's Allie..long story short...I was brushing her teeth and well I turned around to suction Zachery and let her keep the toothbrush and well she had it in her mouth and went face down into the highchair tray and pushed it all the way strait out and up into her gums..it's hard to explain, anyways i rushed her to the E.R and they set us up with a dentist, because they didn't know if they could leave it or pull it out..well the dentist said it had to be pulled, so they reached up and popped it out! she yelled for a few, and then was over it, I'll have to post some pictures of her later today, Also PLEASE PRAY for little Tucker, and his family, Tucker had his whole heart repair, and the little guy really needs prays for his recovery, also pray for his mommy, give her the strength to stay strong, and hang in there....Were thinking of you Karen!! Nothing new has really been going on around here except were just a few teeth short, wow never would of thought at age 3 and 4 they would be loosing teeth crazy
Well the day started out crappy..we all woke up late Emma missed the bus, Allie was grouchy ALL day non stop screaming! Then after the girls got out of school they immediately started fighting and by this time I was on the edge, screaming kids..to top it all of i forgot that the lady from first steps was stopping by to pick up the kid cart,( we donated Zachery's old one to a family) and trying to cook dinner..After all was settling down, no one can guess what Allie and Zachery did today?? any guesses?? well, I had to give all an enema..I think that is why she was so grouchy. It didn't work so I decided to put her on the toilet well miss Allie pooped on the toilet for the very first time, we sang the poopy song and away she went..kinda grouse but I was excited for her. Well after that I gave Paul a hair but ( I'm not sure why he trusted me:) hehe I wanted to make a big bald spot, but i didn't) anyways Paul got in the shower and I was sitting on the couch and Zachery was all over the place..I had to get that boy out of his room like 100 times today, not that he can't be in there he likes to play with all the cords, and get into stuff I can't keep up with him..back to the story. he was sitting by the chair and I seen that he kinda bumped his face on the chair, he kinda made a pucker face for a few minutes and I went over to him and all of a sudden blood came pouring out of his mouth I picked him up and ran with him to the bathroom, i was like Paul Zachery is bleeding, i thought maybe he busted his mouth, lip, NO his BOTTOM TOOTH was MISSING!!!!! I was like oh my god did he swallow it what the heck, well I found this perfect little tooth on the floor beside the chair.I'll have to post a pic tomorrow of it, it looks like a puzzle piece just took out of his mouth! ohh I was freaking out, Paul was like it's a tooth. no he is only 4 he is not suppose to loose teeth, I don't know if it was loose, and he bumped it or what it's not broken off or anything it;s just this perfect little tooth. He looks so funny without a tooth, he is going to be toothless prolly for a couple years. I need to make a dentist app ASAP. I was told we don't have any dentist locally that does kids, I don't know I Know Mercy does but I was also told it takes at least 3 months for an Appt. so I have to make some call tomorrow.
Well Zachery has had pretty sleepless nights the last few nights. I dont know what it is..but he goes to bed, I usually stay up and clean or just sit back and relax, and as soon and I mean as soon as my head hits the pillow, that damn machine starts beeping, and beeping ah I want to throw that thing out the window! so I put the oxygen on and go back to bed, well he starts coughing, so I suction, go back to bed, machine beeps again, I get up to see whats going on, oxygen off by this time he is fully awake hopping in his bed, and wants to play by this time it is around 2-3 I can't just leave him cuz he is a stinker and leans over the rails, or something! by the time i fully get to bed and asleep the alarm is going off for Paul to get up..hahaha, and Emma has to get to the bus by 7a.m. so then Allie is up and Zachery is back up i have got about 7 hours of sleep total in the last 4 nights, Im running low on energy, i feel funny I know it is from the lack of sleep, I've been arguing with Paul also for it seems like weeks know things are not getting any better they are getting worse, I actually told him tonight, that one of us is moving out. We have been together for 11 years and I think that he thinks oh I'm just mad it will blow over..um he don't realize no it won't blow over anymore It hurts to think that we will not be together, but it hurts right know because we never see him. He's at work, and yes I know he has to work, but instead of coming home he either goes to his friends, or he goes to an odd job! So I told him he can continue living his life the same as he does know except Im not going to be the one sitting there waiting for him to come home eat, shower, and go to bed. I think that at this point it will never change. My kids deserve to hear happiness not mommy bitching at daddy for not helping. So I dont know I'm tired stressed and blah...SO anyways I want to say keep mister Tucker in your prayers,he and his family are going to be going through awhole lot real soon..pray for Tucker's mommy, daddy and sister, that they will all have a safe trip and give them all strength to make it through this time... I was so bummed we didn't get to hang out this weekend, hopefully when he gets back home we can!
So this weather has been crazy..I didn't sleep much last night from the crazy storms that rolled through...so many words of tornado's around the area:( Well today we went to Stormy and Emma's T-ball games, man it was so cold. I just hope that kids don't get sick, Zachery has been acting kinda weird the last couple of days, he has just been really sad acting, I don't know if it is he is bored or if he is not feeling well or what, he has just been really cranky and then the last two days he has took like 3 hour naps, know don't get me wrong it's a little break but I don't like when he acts this way, I just hope that he is not getting sick!! Today was kinda a bummer my sister Ashley came to see us and we had planned to take the kids to the pool, but that didn't happen because it was to cold, and rainy. So we want nicer weather back so we can get out and do some fun stuff. Were are going to start our therapy back up this week, they have been getting therapy at school, and since school is out we have to go to them, so maybe that will do the kids some good just to get out for an hour, maybe wear them out so they will come home and nap and give mommy at least an hour of just sit down and chill or get something done around the house. Well I feel like I'm just babble about whats on my mind, so I think I'm going to call it a night.
So it's been a while since I have wrote...I've been falling behind lately, I think that for the first time in the last four years I'm really starting to get depressed, I'm getting ZERO help with the kids, and I need a break...but anyways, little miss Allie has been getting into the crawling position all by her self. She is getting on her knees and pushing up, I've noticed that she does it when she is mad:) If i just let her be and and she does it, know if I try to help her she won't do it. So this is really exciting, I'm hoping that she is just going to take off on her own. On the other hand mister Zachery is being a stinker, pulling the lamps off the table, getting into the trash! The other day I was giving them baths I started with him first and when it was Allie's turn he followed us to the bathroom, and well as I had her all soapy he decided he was going to play in the trash can, of course I was home alone and had no one to yell for so I had Allie by one arm, trying not to drop her and the other hand trying to get him out of the trash...boy I was ready to scream and cry by the time I was done, also neither of them having been taking naps, so it has been steady on top of both of them lately..I always said I would never do the nurse thing again, but I'm getting to a breaking point, I need help and I NEED A BREAK, I feel Like I'm going to break..It has gotten so bad, that the other day well I go to Wal Mart basically once a month and get everything that we need to last at least 3 weeks, I couldn't even get a sitter for 2 hours,( mind you Paul took the day off from work) and had to take them, wow never again, I took my 8 year old nephew to help, he pushed Allie in the stroller and I put Zachery in the cart, yeah no that was not well. Allie screamed, Colton was poking around, with her, and Zachery hated the cart, he kept throwing his toys on the floor and every time I turned around something was going on, no needless to say I didn't get what I needed! But I'm seriously thinking about getting some respite care, I'm not to crazy about leaving my kids with a stranger, but something has got to give, i can't seem to get any family help anymore, my mom works a full time job, and well Paul's mom always has his sisters kids, or just says she's wore out from having those kids, and well Paul basically lives his own life, oh I don't even want to get into that...other than that the kids are doing pretty well I just hope me being stressed won't stress them out! Well back to the kids they are on top of each other...Karen just let me know when you are coming down and we can try to get together, It would be nice for the kids also to get out of the house
Well first and for most...Saturday was proally the worst time that I have ever had in the last 11 years at Rockfest! We got there 4 hours late, it was HOT, and it was so packed that you couldn't even walk 1 inch without running face first into someone. I don't care what they say there was more that 50 thousand people in that park.. It was so bad that they ran out of water, and we left by 9:30 and it wasn't over till midnight!! On top of that we stayed at the Hyatt, and I was so looking forward to sleeping in..the first morning in years that I could sleep in no kids, no worries, Paul's brother woke us all up at 7 A.M he was ready to go, things to do..AHH I was so mad, we didnt even get to swim. It was like this was suppose to be MY DAY to get away have fun and it was horrible. I know this if we go next year NO ONE will go with us!! Anyways Zachery's sight on his stomach is not healed still! for some reason it is oozing, it almost looks like spit!? And he also has another blister type things coming up on the other side of his mickey button, I don't know what in the heck is going on with this. I've been putting antibiotic med on it, so I guess we will see in a few days if it is going to work. Well Zachery today also had his very first day in the yard alone, which I was so mad at Paul for putting him in the grass and letting him roll around, Paul was like you can't keep him trapped which I understand but I don't know there was no harm in it, I just don't really want him rolling around on the ground! He loved every minute of it:) Little Miss Allie has been on my hip since I walked in the door yesterday, man she won't let me out of her sight! She cries when anyone else holds her or if I leave the room, I think she thinks I'm running away:) Also Paul's brother has been in for a week know and will be here for a month, he has been staying with us...another man to clean up after:) My kids love him so much, they laugh and smile every time he looks at them, it's really cute, they have a fresh new face to look at, and oh boy mister Zachery has been in a biting mood that last day! Allie has a bite on her head, ear, toes, and I tell him no and he just looks at me like hahha..so today he got her again, and I picked her up because she was so upset and she was like clear as can be bu bu bite me, and the more she said the louder she would cry..it was so cute, and I was like sissy mommy knows what bubby did and oh man she bu bu bite me, and the tears were flowing and then a few minutes later she was laughing and jumping:) Oh they crack me up sometimes..I'm going to try to post some new pictures before I have to send my computer to Texas to be fixes, it keeps shutting off on us and ahh it makes me so mad, we have to send it back to the company since we have a warrant on it, so hopefully we get it back soon, I just hate to send all my personal info to some people in Texas! I almost want to break the warrant and let a local person fix the problem! So look maybe tomorrow evening we will have new pics
All has been well with the kids, so that is a plus! I think Zachery's allergies are the only problem, his eyes are so red and boy is he sneezing alot, this last week I have been having to put oxygen on him when he sleeps, so that is my thought that it is allergies, he's not wheezing so it doesn't sound respiratory, also if he is in a deep sleep we have to use it, so. I almost was getting worried yesterday, it had been a day or so since Zachery has pooped and of course I thought his stomach was kinda big so I was freaking out that he had re herniated, or bowel obstruction, or something I just knew it so I decided to burp him, and wow i could not believe that air that came out! No wonder his stomach was bloated he was full of air, anyways I told my mom that if he doesn't poop by tomorrow I was going to take him to the E.R, and well we were getting ready to go to the store and I laid him down to change and what a relief, the diaper was dirty! It's amazing the things that you get happy about!:) I think that I will be nervous the rest of my life, with this stupid diaphragmatic hernia! I was also looking at Ava's blogs today, wow that poor little girl has been through so much, with her diaphragmatic hernia, and that also makes me worry about Zach even more, her poor little belly was so big, so keep her in your prayers she is having a hard time right know you can check her blog out look on the side of my post you will see it Hope for Ava CDH.. Also keep little Tucker in your prayers for he is also going to be going to Boston soon for his heart surgery.. On that note back to mommy time! Tomorrow I'll be leaving the kids for the whole night! were going to a concert in Kansas City, Paul and I have gone for the last 11 years, it's just something we look forward to every summer, I hope we have fun, this is the first time this year that I will be away from both of the kids over night, not to the hospital either!:) Oh yeah Zachery and Allie got to meet their uncle for the first time this week he lives in Seattle, and doesn't get to come home much so they think he's funny so on that note I'm going to call it a night and get some rest for our long day tomorrow
Sorry it's been awhile since I have wrote, things have just been crazy...on the other hand the kids are doing great. The medicine that they put Zach on for reflux seems to be helping to that is a plus! Allie is doing great also. Zachery has been a little meany the last couple of days man that boy was so mean to my grandma, he was pinching her and throwing his toys on the floor and when she would bend over he would try to pull her hair. He has also been a little shit to Allie, when she gets near him he kicks her and pulls her hair and tries really hard to bite her. He has been told no so many times the last two days. Then I try to give him a kiss and he starts to pinch my face and smacking at me, and well the whole time that i tell him no and smack his hand the thinks that it is funny..So we have to do something with him being that way. I tell Allie that she has to learn to get away real quick when he starts to come after her.. She usually yell really loud when he is trying to hurt her. ON that note all is well with the kids, and I hope it stays that way!:)
well our appt at Mercy yesterday went well, diaphragmatic hernia looks fine they said..I asked about what we can do about the reflux they gave us some different medicine to try I,m not sure of the name right know our pharmacy had to order it..Also they said that sometimes ginger would help, I guess it's worth a try..Both kids are doing well besides the snotty noses which is form allergies!! They have enjoyed the nice weather and we have been trying to go on walks around the school track at night..Well I have a full night ahead of me I'm busy baking banana bread and zucchini bread for Relay for Life for my moms work..They are having a bake sale on Saturday so I'm doing it all tonight because I plan on spending tomorrow on getting my yard sell ready.. We have so much stuff that has to go, we are running out of room. I still have almost all of Allie's baby clothes and I just cleaned Zachery's closet out..lots of toys that never get played with, gotta go!! ON that note..Karen I sent Tucker his book..and yes I sent it to him not to myself:) i stewed on that for hours..what a dummy
Today we took the kids to the park...I got frustrated because at all of our parks in Trenton, there isn't really much Zachery and Allie can do, they can slide and swing with my help but man it is hard on me to do that..I put Zachery in one of those swings for small kids and started pushing him and well he almost fell out on his head..it scared me and him, he started crying and I felt so bad..after that he was done. I just wish that there was something that they could put in for kids that are in wheelchairs..I've seen stuff in therapy books for parks big swings for wheelchairs and these swings to strap kids in safe, I just wish that the community would think of special needs children, they have spent thousands of dollars on skate parks, new jungle gyms, baseball parks, and they even spent a budget of 10,000 to build bathrooms at this little park, they put in new play equipment there last summer and already they have been vandalized.....ah that makes me so mad how disrespectful some people are. I've thought about making a statement in the paper about maybe them thinking of places parents can take their special needs kids for them to also have enjoyment the same way as the other kids..I figure it's a long shot but you never know unless you try. So tomorrow we go to Children's Mercy for a follow-up with surgery for Zachery, I'm hoping that something will be figured out for his reflux..other than that he seems to be feeling better, we went for a walk yesterday and to the park today..I think I'm going to have to put both kids back on Zyrtec, their little eyes are so red, and their noses are buggery, gotta love that pollen!:0 on that note I'm going to call it a night and get ready for tomorrow
Well last night Zachery was up all night I had to suction him like no stop i tried to catch a few zzz's on his floor but couldn't then I got into bed with him and got about 30 minutes of sleep all night! So today I took him to the E.R. I didn't know if he re herniated or what was going on.. They did an x-ray and found pneumonia..I know that it is from aspirating.. They have to do something Wednesday for him, he is so miserable, and know he had a fever!:( They gave him some antibiotics and hopefully the next day or so he will be feeling better.I have a feeling that this diaphragmatic hernia is going to cause problems all the time..my next mission is to get the GERD figured out once and for all I feel so bad for him.. I want to be mad, but who's to be mad at God....I just hate that these special needs kids never get a break always something..I just wish i could take his place and take all the pain away form him..on that note he is crying and coughing and needs mommy.
Today was Zachery and Allie's preschool graduation..It was so cute even though they were exactly singing they were having fun with the other kids on stage. They had a beach theme this year and the kids make grass skirts and lays and wore them while they did their songs.. It brought tears to my eyes..so see my kids up there..and little sadness that they weren't up jumping and singing with the other kids:( It's just one of those things that hurts from time to time I know they still had fun. Their teacher Mrs Bridget also got a little choked up when she was giving them their awards and gifts that she got them. As you see I Finally got some new pictures of the kids posted we have more but I only had time to post a few.. Anyways Zachery goes back to the surgery clinic on Wednesday.. I'm so glad because know he has what appears to be a blister type thing right beside his mickey button, and it kinda smells funny...so I hope that it is nothing serious, it doesn't seem to bother him so I guess that's a good thing. We are slowly still working on getting him feedings back to normal, we are almost there. he is getting 130 today and he's use to getting 150, he only retched a few times today, but I still want them to check him out really good to make sure all is well. On that note, Zachery and Allie are doing well, I'm going to have to figure daily things for them to do since they won't being going to school, they didn't qualify for the ESY..so were going to do our own
Just wanted to say Happy Mothers Day to all the mommies out there and hope everyone had a great day with their families.. sooo I really have alot on my mind..and don't have the patience to write much more hopefully the next few days will get better!!
It's been awhile since I have wrote. so all has been well, besides that last couple morning mr Zachery has been having rough mornings. Every morning about 5 a.m. he has been getting up and crying non stop, like he is in pain, and he has been coughing alot. I hope it's not because we have been going to the park everyday. but also his feeding are still not going so well.. everytime I feed him he starts gaging and choking, and back to the same thing as before, so I dont' know what is going on, he hasn't got back to his full feedings yet, so I guess we will contine the same thing until we go back on the 2oth. Besides that Zachery and Allie have been so funny, they were laying on the floor tonight and they were giving each other kisses, and Allie was trying really hard I think to bite but she couldn't get it done and Zachery was licking her face and she was laughing so hard that she would put her head on his chest and just laugh.. it was really cute. Also Stormy had her first ball practice, which I wish bubby could play, but anyways, afterwards we went to Paul's mom and dads house which is across from the park, and Zachery loves hats, especially papa's hat, and even thogugh we had two of Zacherys with us he was still wanting papa's hat and every time he would give zachery thoes he would throw it on the ground beside his stoller and he thought he would be sneeky and when papa bent down to get it Zachery was trying to take it off his head, he had us all laughing so hard...what a smart boy. Although grandpa would have giving it to him, he had been sweating in it all day:( yuck) and Zachery was not getting that one. It's so funny some of the stuff that they do, that just really suprises me like that oh bend down and i'll try to sneak it off your head..so anyways things are going ok with all of us, the kids will all be out of school as of next week, which means less running but kids all the time ahhhh. no not really there all pretty good for the most of the time. Also keep Amy Kaden's mommy in your prayers I know that today is a very tough day for her, but all who know her knows that she is very stong, and will get past the tough days. also keep Tucker in prayers to for he is going to be having a big journey in a few short months
I'm kinda tired but I just want to let everyone know that Zachery is getting along pretty well, we are still having problems with the feedings, we are still having to go slow during the day, I think it is just going to take time, I just hope that he is getting enough so he doesn't get dehydrated, Allie is also doing well I'm hoping that the weather will warm up so we can get out. Tonight Paul kept the kid while me and my mom and my sister Ashley went out for dinner, it was my mom's birthday while we were in K.C so we took her out to for dinner, it was nice to get out for a few hours, I'm hoping that we can go see my grandma tomorrow, she is really missing the kids, it just really depends how the kids are feeling, I know it's alot on them, to be out of home environment, when they are ready for naps it's hard for Zachery especially to nap away from home, because he needs the humidifier, so all is well for us right know, and praying that it stays that way!
Man I knew it was going to happen it was nice when we were in the hospital, and know were home it is raining..of course..Zachery is doing pretty well he was kinda cranky today, I don't know that little boy doesn't want me out of his sight at all! It's kinda sad we were at my moms today, and I went out to the van to get his suction machine and when I got back inside he was crying like really crying, and I was like bubby what is wrong and as he was pouring tears, he was laughing hysterically...oh what a mommy's boy!! I put some steri strips on his sight last night after the bath and tonight they were cover with all kinds of gunk and fluid I think mostly from him rolling around, so I soaked them with water and cleaned the sight and dried it and I'm gonna let it get some air, for the most part it is closed just a small place leaking clear fluid, so I think we are good. I'm kinda sad for Zacher man, the doc's said he could go back to school but I think that it is best he stays home, his graduation will be May 14th so we will attend that and maybe visit one day, but he is again going to miss the last weeks of school, for some reason April we are always in the hospital last year he missed. Allie is still getting to go, it was weird today having bubby home and not her, when I dropped her off she looked at me like wheres bubby why isn't he staying:( but she was just fine. so all is going well we went for a little walk this evening with my mom and little sister, the kids really enjoyed that, so hopefully it will get really nice so we can spend more time outside. oh and today no pain medication needed thank god!:) I don't know what that stuff wired him up it was crazy that boy didn't go to bed until almost 1 a.m man jokingly I told my mom maybe I need to take a swig of that:) to keep up with him, my luck it would knock me out!:)
So we finally got to come home today, I'm so so so happy, so is Zachery oh boy that little man has been on the go go go. He is scaring me though, his incision is busting the more he rolls around:( I gave him a little bit of pain medication after we got home because he was upset, I figured it was because it took us 3 hours because of the rain, I thought maybe he was in pain from sitting so long, well yeah that crap wound him up, he is begin crazy, he is so happy, but I can't get him to set still. We are still on continuous feeds until tomorrow, but I have been giving him breaks cause he is tired of sitting still. Know he doesn't want to go to bed, so I'm sitting in his bedroom floor so he don't jump out of bed!! I'm worried about his site though, it is oozing all over I have some steri strips I put on it, but still I hope it heals soon cause we DON"T want to go back!!!! Allie is also happy to be home, at least I know she is in her bed and not going to get lost:) so hopefully bubby will go to bed soon, I'm tired and ready to rest in my own bed. I'll keep everyone posted on how things are going, and also Karen again thank you so much for everything that you done for me while Zachery was in the hospital, Thank you Thank you, I'm looking forward when we can get the kids together to play..and oh yeah Zachery will not be getting anymore of the roxicet!! Ibuprofen it is:)
Ohh. I think I'm at the point of going crazy today, Zachery has a pretty rough morning, they were trying to feed him to much to quick I think, but I think we got on the right track this after noon, on top of that the nurse and the RT got into it and put us in the middle of their fighting which you know I have enough to worry about and then the charge nurse came in and it just went on and on all day, then the RT didn't come back to give Zachery his treatment so then that was more crap, but yeah that make me mad because he need those!!! So I'm hoping that he has a good night, I'm ready to go HOME!! Today Karen and her daughter Hunter came to visit and brought us ANOTHER bag of goodies, thank you guys so much!:) it is greatly appreciated all the love and support that you have given us. So with that I think I'm going to call it a night and get some sleep
Well this morning Zachery is doing great, must be all those dandelions Stormy is blowing for him:) I took him off oxygen, and we went for a wagon ride to get him out of that stupid bed and room, he loved that, so were taking steps to getting home soon. Today his teacher Mrs Bridgett came to see him and brought balloons and a card the kids made, he was really happy to see her. he gave her lots of smiles.. We got to meet Karen and Tucker yesterday, and her friend Kim and little Will, they are all such wonderful caring giving people thank you guys so so so much!!! Also to the DSG they have also helped out to... So all is well so far and every day gets a little better and easier for Zachery. I'm ready to go home I really miss my little Allie, she was crying today on the phone and it broke me heart..so keep the prayers going and hope for the best that we will be home soon, Again, thank you to all who have helped and stopped by to see Zachery
Well I'm sitting outside the PICU ANOTHER one of Zacherys I.V's went bad ahh it makes me so mad that poor boy is black and blue all over, they wanted to put in a Central but I dont know they are just going to put one in his groin tonight and do a pic line to marrow, I swear this is crazy, but he has to have it. We are suppose to go to the floor tonight back on 2 Henson so hopefully soon I'm outside cause I can't stand to watch them poke on him anymore I know he proally hates me for that, it it's been an hour and they are still trying to put it in... Other than that he is recovering.
Well Zachery went through a five hour surgery Monday evening..the doc found a bigger mess than he was expecting!! A diaphragmatic hernia repair is all they thought, once he got in there he found also a big hole in is diaphragm, his fundo was undone, and his colon was inside that hole, he said his colon was in bad shape but he said it was pinking up after he messed with it for a while, he has been in pain for so long..it kinda pisses me off that my son laid for 3 days before they did surgery, they didn't think it was an emergency, boy were they wrong...I JUST wish they were a little more attentive too him, but it's over know and he has a road of recovery ahead, on that note, I went home this evening, I was going to bring Allie back with me because my mom came back up but once I packed her stuff and was going to leave I started thinking how much Zachery needs me, it was so hard to leave her, also daddy didn't want to be alone, so i felt kinda bad taking her away from him:( Oh also Zachery's PAT lady Kim came to see him today all the way from Trenton, that was nice and also Tuckers mommy sent him some balloons' boy I know when he feels better he is going to go crazy!!!!:) He was trying to play a little today but he didn't want to move much, I didn't want him to move much!!!! He is suppose to be moved out of the PICU to marrow, on to the floor, so hopefully that will happen, I know that is also another step closer to home, it makes me kinda sad I don't think that he will return to school the rest of this year, he only has a few weeks left so it look like I think anyways, no more school. I don't know what it is about the month of April last April, same time Zachery was admitted for some sickness they still don't know it put him in the PICU. I would love to skip April, but that is my baby girls birthday so we are going to TRY not to be here next year!!!!So on that note I think I'm going to call it a night, and get early and head across the street, I think he was mad at me today also, he cried every time I touched or talked to him but it was OK if aunt Holly did, it's so hard cause he can't tell me so...ohhhhhhhhhh Just everyone prayer for a fast full recovery
well it all started yesterday with a sore throat so I took him to the doctors, and got him some medicine, yesterday afternoon, I noticed that his stomach was HUGE I mean it was freaky, so I took him to the E.R and they did x-ray and shipped him to Children's Mercy, they think he has a obstruction!! Well I got up here around 1a.m. this morning, and about 3 they did another x ray he is starving and can't eat, he's not having bowel movements, so I don't know they came in earlier and think that maybe he has a diaphramatic hernia-I can't spell that! but we will have to see, I;m so tired I haven't been to bed since Thursday night, up all day Friday and Friday night, still up noon on Saturday I think when he sleeps I will sleep I'll keep you posted
Well they kids are sick again!!!:( yesterday after school,i could tell that Zachery wasn't feeling good, and Allie's ears are draining so last night Zachery was up all night crying with his throat hurting so first thing this morning I took him to the doctor, well yep his tonsils are horrid, and big and gross, those stupid things have to come out soooooonnnnn!!!!! they make him sick all the time. Allie is pretty grouchy also, she just wants mommy to hold her. I hate when my kids are sick, poor Zachery is in so much pain, we have to take antibiotics for the next 2 1/2 weeks 3x's a day so hopefully he will be feeling better my next Tuesday so he can go to school, Other than the goal for this weekend is to get the kids feeling better, and hopefully this nice weather will sick around, I'm actually just wondering they had the kids outside at school this week, so that may be playing into the sickness, but I can't have them keep them inside, they need fresh air too. !!
Today all of the kids made it to school, usually I have 4 kids all together.. I have Zachery Allie, Emma, and my sister Stormy, they all go to school in different places, sometime it is so crazy they all go at different times, Emma goes from 8-2:15 Stormy goes 11:30-2:15 Zachery and Allie goes 12-2, and they are all at different schools, it gets hecktic to pick them all up also, but that is daily life for me. A day in our life consists of up and at'em usually at 7 Paul takes Emma to school, Stormy gets here and I get Zachery and Allie up, changed,meds,feedings ready, and feed them, usually after they are done around 9-10 I try to get Zachery to take a nap(haha) so he won't sleep at school, then I have to try to squeeze another feeding in for both of them so they aren't hungry while there at school, then I get them dressed, which is a work out, and get all Zacherys, machines ready to go, we have to leave the house around 11:25 to take Stormy to school, then I have to kill about 30 minutes before I take zachery and Allie to school at noon, drop them off and then it is home to clean or do what ever running I need to do, then before I know it..it's 2 time to pick them up, which they go to school about 3 miles out of town pick them up, head back to town to get Stormy at 2:15 and hall rear across town to get Emma which also gets out at 2:15 ahhh by the time we get home, they are ALL starving so I get Zachery and Allie's pumps going, feed the others usually Zachery falls asleep in the hi chair so I have to stop his feeding and take him to bed hook up his machines and start his feeding again, oh yeah in the mist of getting home change diapers!! it makes me tired just typing it:):) then it is time to start supper, and feed the kids again, then after supper it is bath time which oh Zachery's bath is no just a simple bath it is be careful no water in the trach which he loves water, and also that boy is HEAVY get him cleaned then we have to change trach, ties, all that stuff which he is getting hard to chase to get dressed he likes to roll off so then I have to chase him around the front room:) then about this time it is 9 p.m. and I feed them again , and put them to bed, THEN I clean up supper and finish any household chores, and usually stay up till midnight to start Zachery's continuous feed that will run until about 7a.m. and it starts all over again!! This is just basically how I spend the day with the kids shooooo!!
Today was Allie's first day of school and she seemed to like it well, when me and my mom got there to pick the kids up, she really didn't care to much..but my Zacher Man was happy as always to see mommy!! He gets so excited and happy he starts to smack his lips, which I don't know if it is a kiss of feed me:) but he always has a big smile when he sees me so that makes me feel really good, I didn't get a kid free day though..Paul's daughter Emma came home from school around 9, they said she was sick but...she was playing and running and well not sick anymore, which long story short when she is at her moms' she doesn't make her go to school, and well I think she has figured out how she is able to leave school, so bad for a 5 year old to know that!!!!! Anyways, the day was alright and hopefully tomarrow will be great too..
Well tomorrow will be Allie's first day of school I hope that she will be fine.. She hasn't been around strangers like that, I just hope that she doesn't think that I'm leaving her. I think she will be fine, especially when she sees Zachery is there with her, so not much more really. I think Mr. Zachery is getting sick again, he has been coughing alot and has been kinda lazy and whinny, just bumping his head and crying alot, that usually means that he is getting sick, I hope not but what can you do. The other day they had him outside at school it was really windy, but I know that they can't keep him inside, that is no fun!! This stupid weather needs to warm up and stay warm so these kids can stay healthy and enjoy life, Ahh it makes me so mad sometimes I want to yell at god and ask why, they have been through so much already can't they just have a break for once, I know I shouldn't be that way, but I guess I don;t know who else to blame at the moment. I don't know, mothers that have special needs kids that are sick alot know where I'm coming from, so I will leave it at that, and hope that Allie and Zachery will have a great day at school to marrow
Well it has been awhile since I have wrote but I have lots to say...Yesterday was Allie's 3rd birthday and we had a blast... We had a big blow out for her we had about lots of family and friends and lot of kids!! We had a Easter Egg hunt for all the kids and they had a blast.. The only bad thing was when it was time for cake Allie started not to feel good. She has this problem with being constipated and just at that time she had to go to the bathroom and couldn't' and she got very upset, and well I had to help her:( and after all that she was so tired and ended up getting sick all over my grandma, and then she went to sleep, but other than that we had so much fun. With that aside Tuesday we had Allie's transition meeting and well she will start school with Zachery next Tuesday, yeah yeah I don't know what I will do with myself. Oh boy my mister Zachery , the other day that little boy was on a rampage, he pulled the lamp off the table and it cracked him in the head, and after I got him settled down, he went over to the tall toy box and pulled it over on himself, so I decided that maybe he needed a nap and I put him to bed and well when I checked on him he was hanging out of the bed!!! Some days I don't know what to do with him:) We had a good weekend and ready for the week....
So..the weekend was pretty good..I me actually got to go out with the girls on Saturday night....it has been since last year on my b-day so it was nice to get out of the house and just feel like I have no worries. On Sunday we went to my aunt's house to see my cousin who came home from Pennsylvania with her daughter..we got to meet her for the first time, my cousin actually worked at Children's Mercy on the heart floor, which was so nice to have a family member taking care of both of my kids when they had their heart surgeries, which Karen, I was talking to my cousin about Tucker and she remembers him:) I told her about your blog, and she said yes she remember that little fighter:):) So this week is going to be crazy, Tuesday Zachery gets fitted for a bigger wheelchair and then off to school, Allie has her transition meeting on Wednesday since she will be 3 no more first steps off to school she goes, and then Thursday we are suppose to go to CMH but I think that it is going to be canceled because I have been having some problems myself that I have to immediately get taken care of and then Friday-Sat lots of cooking to get ready for Allie's party/Easter party, we are expecting around 20 people, ohhh I hope I don't go crazy:) So I think I need to call it a night and get rested for this long week
Today was so funny, I was cleaning house today and usually it's the other kids that will drag stuff out right behind me and it aggervates me so much, well first of all the boy is crazy over cords, it don't matter what kind he is after it, I was vaccuming the floor and he was chasing me and so I went down the hall and he was right after me, so I stopped and took him back to the frontroom and went to the bathroom and came out and he was back:) so I decided to quit and I went and cleaned up Allie's room and after I got done and went to his room he was in there taking stuff out of the toy box and I had to giggle about it... and same with the toybox in the frontroom, I guess I'm so amaized of this because he has never gotten toys out himself, I can tell that he is just getting this personality,and well it almost brings tears to my eye, it;s so crazy how the littlest things like getting toys out to me is a step in progress!!! He just really wanted to be behind me today and I love it. Allie is starting to do the same I just wish she would set up more on her own, she can when she wants to. My babies are growing up Allie will be 3 next saturday and we are planning a big bash for her....and I'm going to try my best to stay calm
I'm so tired of this crappy weather, I just know that the kids will be sick again!! I have to get them in and out in and out going to school...the store..I just wish it would warm up. Zachery is at school right know and it's just me and Allie. It is so wierd it's so quiet around here, even though zachery doesn't talk and Allie is usually the loud onen around here, maybe it's just cause I can actually sit down for a few minutes. I've been planning Allie's 3rd b-day party for a couple weeks know, I think that I'm done getting everything for it, we are going to have our Easter Egg Hunt the same day since all the family will be here. I don't know why I plan these crazy events like this, I always get so stressed when my house goes to well to right out say it hell:) oh well I guess it's fun time for the kids. I want to also say to Tuckers mommy, that yes I suppose I do have a lot on my plate but....we like to help when ever we can, I know how stressful it can be when you have to see your child go through so much, you don't want to worry about how are we going to do this, pay for that.. I think that it is so amazing that there is so many people that have reached out to help your family with Tuckers journey, with all the bad news you hear anymore on tv.. you can see how much good is still out there!!
Ok so this morning I was called and asked if my kids could be referred to the Dream Factory in Kansas City.. I'm suppose to be thinking about something for the kids... They can't tell me so I don't really know what to do for them...so we take a trip, ???I have no clue I'm not use to people wanting to do stuff for us. If you have any suggestions that would help my two kids with down syndrome and cri du chat syndrome please help, I know this is something that should be so easy for me but it is really not I don;t even know where to begin!!
Well today Mr. Zachery was on the rage of biting Allie today. It seems every time we turned our heads he was trying to take a chunk out of her. He usually does well when we tell him no, but today he just was not listening. They both get so jealous over each other, which I guess that is normal for siblings, if I'm talking to Allie, then he rolls over and well does something mean, and same goes when I'm doing something with Zachery all does something to him. I know it not funny, but if she does something to him, it doesn't matter how many hours has went by it seems that he remembers and when he gets a chance he does something back to her. Well on the other hand all the snow melted today and know it is a big muddy mess, but I would rather have that then cold snowy weather...Hopefully it is over until next winter!!!
Oh my gosh we have so much SNOW!!! I think this is one of the worst snows that we have has this year!! We went to my moms today and she lives across town and when we came home tonight we had trouble. I really wish that this cold weather would go away and the warm would stay....I'm tired of the kids being sick all the time. We had a pretty calm day today, both of the kids took like 4 hour naps at my mom which is so unusual for them, I guess they were just so relaxed at grandma's that they decided to sleep...I bet they will be up late tonight.... I wanna say that I hope Tuckers Family was able to have their bake sale today...I was keeping my fingers crossed for you that the snow would stay away for you!!
I decided to add some of our older pictures of the kids when they were younger... I can't believe how much time has passed since they were little. I wish they were little again but I don't miss all the surgeries that bubby went through. It's kinda sad to know that we won't have anymore babies. But on the other hand, there at the age know where they are fun and funny in the things that they do, they learn and show me something new every day they teach me a life lesson every day. Even though some days are harder than others and I feel like want to cry and give up I take one look at them and they just smile and that just brightens my day! They are such awesome kids they mean the WORLD to me!
Today Zachery went to school..which by the way he stayed awake considering that he didn't have a nap before he went. Allie and I just hung out and spent some time just me and her. She did very well today with her developmental therapist she was sitting up on her own which she can do when she wants to. Other than that the day was pretty much calm, which is nice because things around here can get kinda crazy.
Zachery went to school today, and well the poor little boy I think was still tired from our trip to Kansas City, that he went to sleep at school today. When I picked him up he was still asleep and didn't wake up until we got home. He was starving so I fed him and he went back to sleep and well it is about 8 and he is still asleep, I think I need to wake him up but I don't think he will appreciate that.. He will probably wanna get up when it is time for me to go to bed! Allie has been a bit cranky today, all she wants is to be held so that is what I have got done most of the day holding her:) Actually still holding her!!Hopefully tomorrow will be a better day. On the other hand I'm really not happy about this weather!! It is cold again and we are suppose to get SNOW- that is crazy the kids are still sick with coughing and snotty noses, I can only imagine that it will continue with 70 degree weather and then 20 degrees, I guess it will soon warm up again and stay that way eventually. Anyways not much happened today, Zachery has school again tomorrow, and Allie has Parents as Teachers and her developmental therapist coming over . So I guess I will leave it at that for now
Today we went to Children's Mercy, Zachery had a appointment in the surgery clinic,(which it was backed up so we waited for ever!) he was suppose to get a bigger mickey button put in, but Dr. St.Peter said he thought it was fine for right know. We also scheduled surgery for his Lacroscopic Orchiopexy..which is..well his testicles have never dropped so they have to look with a scope through his stomach to see if they will be ok there,or if the can pull them and tack them down, or take them out:( I feel so bad for him I don't want for him to be in pain. We had a pretty good day, my mom and my little sister Stormy(which is 5!) went with us so we went on a little shopping spree..Zachery got some cool light-up Sketchers, and Allie got some cute little white and pink Nike's, then we went to Party America to pick up some stuff for Allie's birthday. Hello Kitty is what we decided on, after that the kids were getting pretty cranky especially Allie she hates to be in the car very long, and we had a two hour drive back home. Zachery crashed out on the way home, and well Allie yelled half the way home:) We are all pretty tired after that eventful day. So I think it is time for bed, and get some rest...tomorrow leads another busy day Zachery has school, and Allie has speech,and first steps
I have a feeling that this page is going to take forever to get going. I don't have much time to set and work on it. Well tomarrow we have to go to the surgery clinic at CMH Zachery has to get a bigger mickey button put in and have a consultation to. Both kids have been so sick the past few weeks, they have been on antibiotics 3 different times. They haven't been sleeping to well either. The other night Zachery had to be suctions non stop, and we had to put oxygen on him to keep his stats up. Fevers, coughing, crying, I feel so bad for them I just pray that I don't get sick..If I get sick this whole house will fall apart. Well I have a busy day today so hopefully tonight after everyone gets setteled I can work more on posting pictures of the kids