Tuesday, March 31, 2009

Pledge!



r-word.orgTake the pledge, change the way you talk. RESPECT those who are differently abled. Grow up! There are lots of ways I can say it. I'm asking you to stop saying things like "that's retarded", "your retarded", "I'm retarded", or "look at those retards". This isn't a word the world just gets to throw around and miss use. This is a word that the medical world uses to describe my baby, and my dearest friends children. Its not a word you get to use when you mess up, when you don't like something, or when you see someone different than you.




Today I pledge to stand up for Alex when I hear someone use the R word in front of me, I'm not going to let it go, I'm not going to tolerate it. I pledge to be respectful, but I will not stand by anymore, its too important. Change will only happen if we do something. Help me out by taking the pledge and dropping this word from your vocabulary!






Take the pledge today!!!!! Change, It matters.


As Teri said on her perfectly written post today, let Alex know you have his back and leave a comment below!

Everytime I

post about how well Alex is feeding, and not throwing up, he throws up. I believe I will never post about feeds again. I'm not sure if he is sick, or just a reflux thing, the sick would make more sense as his reflux isn't an issue, and it has only been a little over a week since it was in our house. Only time will tell.

Alex loves hard floors, he taps his fingers on them. These pictures were taken at my grandmas house where he had plenty of hard floors, and a black lab to tap as well.






Tomorrow morning I go to the doctor, just the standard cup in the bathroom and check the heartbeat, but Im still nervous, and I still dont want to go........

Monday, March 30, 2009

A feeding post

Alex is back to eating the way he was before he had the throw ups. it took almost a week, to get back up to the same amount of food, but we are there and going strong. Alex eats about 7-8 oz of food a day, that is 7-8 ice cubes of food. 3 for the morning feed, and 2-3 for the middle feed, and 2 for the last feed. He is eating table food, anything I make for the family he gets also, it is pureed though, I would say about a stage 3 baby food in a jar. While he is eating he still gets 200cc's of Peptamin jr boluses through the tube. I don't use the pump because the nutritionist told us the bolus is a more natural way to be fed, since when we eat and drink, it isn't going in at a consistent rate. He eats his food in about 10 minutes, but the bolus still takes close to an hour, I really think we could speed things up, but honestly we have such a routine, we just haven't. His reflux is nearly gone, well, he doesn't throw up anymore, and rarely do I hear him reflux. I'm quite sure he still has reflux. So he is still on reflux medication.
Since we are in the high chair for so long, we read, read, and read some more. Alex loves books, loves to turn the pages, and I have every one of them memorized. Here he is reading 5 little ducklings.


Friday, March 27, 2009

I couldnt wait for Wordless Wednesday

So that means I can use words......Every night at bed time, Adam and the boys read together. Alex usually isn't in with them, but Noah has been asking if Alex can come in their room for bedtime. Noah was reading this book, Joel is on the other side of Adam, and yes, Alex is in his Christmas pj's.





Alex is getting to be so much fun. He is into everything, he has this fake little laugh he does when he is pleased, it sort of sounds like he is clearing his throat. Ill have to get it on video. I just love my boys.......

Thursday, March 26, 2009

My little helper

Lately these days its either laundry, packing boxes, and feeding Alex. Of course I have my two other boys, who both have swimming lessons, one with soccer, and everyone with a mouth to feed.
Not so long ago I could leave my 5th basket of folded clothes on the floor because my not so mobile son couldn't get to it.........but now I have a helper!



Thanks for your help Alex! I love the things you do:)

Wednesday, March 25, 2009

Cruisin!

Oh how things have (changed in a year!) My boy is eating good, crawling, and now he cruises the couch. He usually starts at the entertainment center which is to the left of this first picture, and makes his way to the couch. Yesterday I had left him near his basket of toys, and when I came back in the room, had a quick moment of panic when I couldn't find him, he was cruisin the couch, on the other side of the room from where I had left him.





I hope you clicked above to see what Alex was doing a year ago, almost to the day! I just cant beleive it:)


Tuesday, March 24, 2009

It was time......

As hard as it was for me, it was time. Bird's hair was always in his eyes, and I had one too many therapists tell me "he needs a haircut mom".








Monday, March 23, 2009

Out for a walk

The weather has been so nice here lately, everyday that I can I have been taking Alex out for a walk. He loves to hang over his stroller and watch the ground go by. Then he likes to check behind him and make sure his momma is still there, and he smiles........


Sunday, March 22, 2009

The Sunday Machine

I sit here this morning thinking back two years ago, then we would be up, running around getting dressed, brushing hair, eating a quick breakfast and out the door to church, the whole family. Now like all Sunday mornings, it is quiet, Adam may or may not take the older boys, and I will be at home caring for Alex.
I wonder how many other parents are at home today, who used to go to church, or would really like to start. However, your child's needs are much too great for the church to handle. Or maybe you simply fear your child would be too much of a distraction for the class, or maybe you are just plain scared of what people would think or say about your precious differently abled child. So here we all sit.
The Sunday machine roars on without us, people shuffling around, in a hurry, sometimes angry because things aren't flowing, somebody spilled on their Sunday best. The stress level is high in the car, but pull into that parking lot at church, the smiles are pasted on.
The Hallelujahs, and God bless yous are said, and the stress of the morning melts among the songs.
A few amens are shouted out when the message is about reaching out to those in need, who are hurting, however, those who are alone go unreached, and midway through the smiles, that hungry stomach growls, and eyes look at the clock, minds start wondering about what food will fill their bellies just as soon as that guy is done talking.
He is finally done, and the race to get the kids begins, not forgetting to say God bless you, as one fights through the crowd of people. Out the door, and off to the favorite restaurant of the week. So is the Sunday Machine.
I used to be a part of it, I grew up in church and I believed that if people really wanted to go to church then they would be there, and I judged them, and made my own opinions on why they weren't there, and I thought that if someone couldn't get there, or had a need, the church would not let it slip by. The church however, lets lots of people slip by, and people continue to form opinions on why they arent at church.
This morning I think of you mommas whose children need so much medical attention you couldn't leave them in a room with 10 other kids and one teacher, and feel safe. Your children who are so delayed the other babies in the room would trample yours, whose children are loud, rock, and at home its like a rhythmic song, but in public you just want to hide.
In a perfect world every church would have special teachers, or volunteers to be an aid to special children, or rooms for differently abled kids, and parents would feel safe leaving their babies. The church would find a way to get you to church. The phone would ring, visits would be made. In a perfect world parents wouldn't feel they needed to protect their children from the blank looks down on their child in a place so filled with love.
The world isn't perfect though, and so here we sit. Sunday morning again.

Friday, March 20, 2009

Really??? Are you kidding me?

Here is the timeline:
Joel has the tummy thing, throwing up, no appetite, for almost a week.
One week to the day after he is better, Alex gets it, and it lasts for a week.
A week later (this Monday) I throw up 3 times in about 8 hours, felt fine, so I convinced myself it was a pregnancy thing. Wednesday Joel refuses snack after school, which was left over cupcakes, if you know Joel, you know this is weird. Thursday (last night) Joel throws up, early this morning Adam throws up.
We are going on 3 weeks with this, has it lasted this long in anyone's house? I'm telling you if Alex gets this again I will lose my mind. He just cant, he has just started eating well again, it took about 5 days to get him eating like he was before he got sick. He cant get this again. Don't you build up some kind of immunity once you have had it. Joel clearly didn't. HELP????

The business has taken over......


I have been busy filling boxes, and of course on top of all that taking care of Alex, picking up from school, you know all the mom stuff. The days aren't long enough, and when things slow down, and its time to blog, I'm fast asleep.

So I may not post everyday while we are packing up, and moving, but I'm still here, and I wont let one important thing slip by without you knowing about it.

We move the weekend of April 17-19, and yes anyone around here that would like to help, is more than welcome to!!!! Alex and I go back to Saint Louis for NICU follow up, and an eye exam on April 14, and my next doctor appointment is April 1st. May 6th is my ultrasound, and the closer I get to it the more fear I feel. I almost would rather not do it at all, and just check the baby out after it is born. This is for another post...........

So these are the up coming events in our lives, I'm here, busy, packing, encouraging Alex to crawl, and cruise, taking boys to swim lessons, and soon to follow soccer, and baseball.

Monday, March 16, 2009

All better......and a birthday.

This is the face that I got to enjoy all day. He's back, he's better, and he's mine. He is back to exploring, smiling, and sleeping. Yay for me:)

This weekend was so busy, not only was it Joel's birthday weekend, but it was the weekend of the mothers volleyball tournament here in our town. Each school 7 elementary, the junior high, the high school, and alumni moms, each have a team, or several teams depending on the amount of moms that play. I know what you are thinking, moms volleyball??? No, no it is competitive, and there are some gray haired moms that can knock the ball down your throat. Our team played a total of 29 games Friday night through Sunday. This pregnant body is tired, but I am proud to say we got second place, out of 18 something teams!!!!! Out for a walk, it was so nice today!

Sunday was Joel's 5th birthday. I cant believe how much he has grown, and that he will be going to kindergarten next year. My 9lb 10oz baby, isn't a baby anymore. On Saturday we had a pool party with some friends from school at a local hotel, and Noah, Joel and I spent the night. Then on Sunday (his birthday) we opened gifts in the morning, and had a family party that night.








Happy birthday Joel!!!!!!! You are sweet, silly, smart, funny, sensitive, adorable, and your my boy. I love you.



Friday, March 13, 2009

Tired


This picture of Alex pretty much sums up our week....Tired. Tired of throwing up, tired of not eating, tired, of not smiling, tired of fussing, tired, tired, tired. It has been a week since the fever, and first throw up, it has to be over soon, right? Yesterday I spoon fed Alex in the morning, and gave him his regular amount of peptamin jr, and he didn't seem to have any trouble, he even played for a bit on the floor without fussing. After nap, which was very short, I didn't spoon feed, but I gave him his regular amount of peptamin, and 20 minutes after it was done, can you guess what happened? Yes, throw up, but strangely enough it wasn't his peptamin, it was bile, hmmm? A pretty throw up really, bright yellow,nothing like the throw up of a 4 year old. After two weeks of vomit, it becomes natural to clean it up, and notice the pretty things about it:) No I really dont think its pretty, but let me find some humor in this week, please! It wasn't very much throw up, but next feed he got 2 oz of peptamin and the rest was pedialyte. Poor baby, poor me.......Today will be better....I hope.

Wednesday, March 11, 2009

Puke Update

Alex has kept everything down so far today. This morning I only gave him about 50cc's of his peptamin, and then 150cc's of pedialyte. The second feed I gave him 100cc's of peptamin and 100 of pedialyte. So far still in.......
He is still pretty touchy, and fussy, but I'm so thankful I am able to keep him hydrated. I did some thinking and his first throw up was Friday, along with the fever, then he seemed fine on Saturday, so I figured he was fine. Anyway, again I am hoping we are already 5 days into this thing, and about done with it.
This weekend is Joel's birthday, we don't want him sick for that.

The pukes

Alex has the pukes, its official. He threw up this morning, and then again tonight. He threw up Monday morning, and I'm guessing maybe his fever last Friday was the beginning of it all. My goal..... to keep the boy hydrated. If he can keep his night water in, we should be fine. He gets 570cc's of water at night, and then whatever I can keep in him during the day should keep him hydrated. I'm hoping this is day 5 instead of day 2.
I hope its over soon........
Sorry no cute wordless Wednesday pictures when there is pukes.

Tuesday, March 10, 2009

Some days are harder than others.........

Its so hard to know what to do when Alex is so grumpy. We don't communicate with one another, like most moms, and 18 month olds....That's right Alex is now 18 months old!!!! He cant tell me his tummy hurts, or that he is hungry. I cant ask him to go get the ball for mommy. Communication is one of the big mountains that RTS brings. So while I'm in the middle of this grumpy bird period, I am up close and personal with the lack of communication that I have with Alex. I know you mommas to other differently abled kiddos know the poem Welcome to Holland. It is pretty, and it brings out the special parts of raising our children, but it doesn't mention, or at least in great detail all the rocky spots, and mountains that will be climbed, and climbed again. It talks about the beauty, but leaves out the vomit, it talks about what is learned, and forgets the feeding pump. It leaves out the malformed body parts, and the surgeries, therapies, and tubes. So while I'm in the midst of this struggle of Alex wanting to tell me whats wrong, and me desperate to figure it out, I leave you snippets of my Holland. Beautiful, and hard, unfair, and perfect, all at the same time.........




































This is my world, and even though it is full of feeding bags, tubes, holes in my child's stomach, cute angulated thumbs, puffy feet with odd deep crease (geneticists words not mine), therapy, expensive milk replacement, and a perfectly sweet non-verbal boy, its my home, some days are just harder than others.




Monday, March 9, 2009

Replacing fevers with smiles




As you can tell from these pictures I took last night at bedtime, Alex is feeling better.The last picture I took as I walked in to lay him back down, its what we do every night. He pulls up, then cries when he cant see to get down, so we go in and help him, he goes from crying to making this sweet smile in a matter of seconds, as soon as he sees us he smiles. I guess this could lead to a potential problem in the future, but we are so glad he is pulling up to things, and we don't pick him up and play, or even cuddle, we just lay him back down.
With lots of sleep, and extra water at night Alex made a complete turn around. No more fever, no more vomit, no more, well he still is a little grumpy, but I think that is the tooth coming in the right side of his mouth, the drool and chewing on his finger tells me that.
My second born will be turning 5, next Sunday. I cant believe it, I remember the day he was born so clearly, like it was yesterday, but that's for another post.
I'm not sure how I got away with not reporting to you how my doctor appointment went last week. The heartbeat was in the 150's, and everything continues to look good as far as I am concerned. Ive gained more weight than I should have at this point, but that's how this pregnant girl rolls.
The weather has been so nice, I can taste spring. I'm ready to get out of the house! Take Alex on his first bike ride, and go to the park. This week will bring colder weather, but it will come soon! So back to The regular things of the week, well, no! Now I get to start packing boxes! What fun!

Saturday, March 7, 2009

tummys, grumpys, and snot

I have to say I am now glad we did not head to Wisconsin yesterday. Alex has come down with a fever, is very grumpy, and uncomfortable. He threw up once yesterday, but kept everything else down, so we aren't sure if he has Joel's tummy bug or if he just threw up because of reflux, or maybe the fever. He is very uncomfortable.
Adam and I both have junk, goop, snot whatever you want to call it in our heads. We aren't feeling well at all. Joel seems totally better, and somehow Noah has missed it all.
Oh how I wanted to meet my RTS family, but not like this. We would have been miserable!

Friday, March 6, 2009

Good news, bad news, and Mrs. Spiders Tea Party

Hi everyone, momma is sick, so I didn't want to bother her by getting out of bed last night, so I waited until this morning. I've got good news and bad news. I'll go bad first. The bad news is that because momma and Joel are still sick, and daddy feels something coming on, and who knows what that means for me, we aren't driving to the Wisconsin Dells this weekend to meet all my RTS brothers and sisters. We are all very sad, momma was so excited to see all the other mommas, and cry and hug, and talk. I was excited to hang with my boys Will, Max, Noah, and Caden, and meet my girl Addie, but next year will come, and we will go then.

The good news is that not only did we sell our house yesterday, but we bought one too! Last night around 10 our offer was taken! So mid April we will be moving. This is great news. The house we are in now is small, too small for the five of us, throw in another little dumpling, and we are busting at the seems. We are so excited!

Since momma has been so lazy with the blog this week I added a video of me reading a book with daddy. I LOVE TO TURN THE PAGES, I know when daddy is done with the page, and I'm ready to get to the next, sometimes I will repeat what daddy said, just for practice. So, I will leave you with my rendition of Mrs. Spiders Tea Party. Have a great weekend, miss you so much RTS family, go down a water slide for me.

Thursday, March 5, 2009

Decisions, decisions......

I have a great video of Alex I will post later, but right now I don't feel well. I woke up with a sore throat. Joel threw up again yesterday. So as of now we don't know if we are going to make it to the RTS reunion. I guess we will make a last minute decision tomorrow if we will go or not. We were all so excited to go, especially the boys. We just have to wait and see how the day goes.
We got an extremely low offer on the house, in fact if we go through with it, we will end up paying money to get out of the house. So, we aren't sure what we will do yet, it was very disappointing to say the least. We have to move, we are busting at the seems here, and one is still on the way. Today we will know more.
Video to come!

Wednesday, March 4, 2009

A year ago

A year ago I didn't know if I could raise a child with special needs.Or, Ill be honest, i didnt want to. For the rest of my life, for as long as I can I would be caring for someone. Part of it was fear of the unknown, part of it was grief for Alex's future, part of it was grief for my own future.

So much has changed in a year, I don't look at other families with all typical children and wish that was me, no worries of health, getting irritated and my very mobile baby, and needing a night off. I don't secretly wish Alex wasn't who he is. I was so full of guilt a year ago, how could I love someone so much, and want them to be so different. I was angry at the isolation I was in, the lonely days and nights in the hospital.

A year ago, I was grieving, I was angry.

Today, I find myself walking past that typical mom, and imagine her thinking how lucky I am. I get to be Alex's mom, I get to have this blessing in my life, and for the rest of it! I find myself grateful for the future Alex has, what fun we will have, taking each day in like its all new everyday.

As we keep moving into this second year of Alex's life, and as I move into the 30th year of mine, I am honored, and proud to be the mother of Alex, and all that comes with him. There is no grief!
When I watch the video below about Alex's first year of life
I remember the pain I felt especially in those first few months, but that's all, I just remember it.
View this montage created at One True Media
Alex first year 2007-2008


Here's to turning 30, to change, and the deepest love I have ever known!!

Tuesday, March 3, 2009

Holding my breath

Joel has been sick, tummy stuff, all weekend. Hasn't had much to eat, I hope when he wakes up this morning he is better, and I'm holding my breath that Alex doesn't get it because we are going to Wisconsin this weekend for the annual Midwestern RTS reunion. I get to meet so many moms and sweet kids that I feel like I already know, but haven't had the honor of hugging yet.
We have also found a house that we really want, and might be getting an offer on our house this week, so we are holding our breath, in hopes!!!!!
Tomorrow I go to the doctor for a pregger check up, and I find myself holding my breath. Is there really a baby in there?
So today I'm just holding my breath, waiting.

So much big news to come.........