Tuesday, April 28, 2009

another feeding post

I said I wouldn't ever post another feeding post again because it seems every time I do, the feedings go down hill. However, I'm just certain they wont this time. Fingers crossed knock on wood.
Alex is eating about 2 oz of food by mouth three times a day, and getting 200cc's of peptamin junior through the tube 3 times a day, we give him the peptamin at the same time as the spoon feeding so it isn't prolonged, and he associates his full tummy with the highchair, and spoon feedings. Since I bolus the peptamin he gets about 55cc's as quick as gravity will take it down, then we wait 10 minutes, then he gets 45cc's, then we wait 15, then he gets 45cc's and we wait 20 minutes, and then we dump whatever is left, and the feed is over. It takes about 45 minutes. This may seem like a long time to you, but for us, it is the fastest we have fed Alex in over a year. Soon after we came home from the hospital we had to make his feeds take a little over an hour or he would promptly throw them up, causing me to say a few choice words that my other children never heard, and Alex to not get his feed. After we lengthened his feed the throwing up stopped, of course though being an RTS boy, he had to leave his mark here and there every once and a while in the form of throw up, but it wasn't enough to make me say those few choice words as much.....Ahem....SO, my point is we are going down on the time, 45 minutes is heaven for us, more play time for Alex, and throw up seems to be a thing of the past, unless the tummy bug is in our house. I could be wrong but taking over an hour to feed your child only to have it thrown right back up might be one of the most frustrating things associated with and RTS child while they are babies. So three cheers for Alex, no, make it 10! 45 minute feeds Woo Hooo!!!!!!!
The things we need to work on: Alex does not self feed, does not want to self feed, in fact if I manage to get him to hold onto something to eat, he throws it down much like the cards in the video.......We also need to work on drinking, some days he seems to be interested but still doesn't take any significant amount, and other days he wont have it at all......And finally we need to work on chunks, some things he does good with like anything that dissolves fast, but gags on things that don't. We have lots to work on, but we have made it sooo far.
Again....10 cheers for Alex!


Man, I love that boy!

Monday, April 27, 2009

Can I be honest????

I have reached a point where I am happy with everything surrounding Alex's diagnosis of RTS. Im at peace with it. Sure there are moments that sting, sometimes when I see another child his age, and I wonder what could have been, but then all it takes is one look at Alex, and I love it the way it is. Those moments that sting are so few these days, I can say I'm at peace.
BUT, can I be honest???
I don't want to have another baby with a syndrome, or major health issues. I don't want another NICU stay, I don't want to hand my baby over to a stranger for tests, and surgeries. I don't want a diagnosis. I have heard other moms say that they don't care if their baby has a diagnosis, but can I be honest? I cant say that, I do care, I don't want anything but healthy. I want milestones to be reached on time, I want to see my baby suck and swallow, breathe on its own, I don't want a geneticist anywhere near me or my baby, I don't want ventilators, I don't want Nitric oxide, I don't want helicopters, and neonatologist.
How can I say I love Alex just the way he is, but I don't want another child with anything but a typical diagnosis. I don't know how I can say it, but I can. If I can be honest.
In 10 days I will have my ultrasound. can I be honest? I don't want to have one at all, I could not go to the doctor at all, and live in blissful ignorance.
That's just if I can be honest..............

Friday, April 24, 2009

Just becuase.....

He is so cute......Another video! While we feed Alex we read books, do flash cards, and basically turn feedings into another therapy session, because that's what we parents of differently abled kids do, turn every opportunity into therapy.
Maybe its just us as his parents who think its funny and soooo cute, but we hand Alex the flash card, tell him what it is, and if he likes it he hangs onto it for a while then throws it onto the floor, if he could care less about the picture on the flash card he immediately throws it on the floor, usually does this with the dog, and cat, but hangs onto the mirror, keys, fish and firetruck for a while. So we think he is adorable and funny, what do you think. (remember to pause the music)


Wednesday, April 22, 2009

Peek-A-Boo!

This isn't the best video because you cant see my hands which is an important part of the video, and there is a certain 7 year old in the background trying to distract you away from the action. So you may have to watch it twice to watch Noah in the background, then focus on Alex. So, here is what is going on. I ask Alex if he wants to play peek-a-boo, he then looks down to get one of my hands, then turns and gets my other hand, then lifts my hands to put them over my face so we can play peek-a-boo.

Why is this exciting??? Alex has no words, but I know he understands much of what we say to him like want to go bye bye, lets read a book, take a bath, take a bite, and do you want to play peek a boo. When your child cannot tell you what they want, it is so encouraging to see evidence that they can and will communicate with you. So enjoy, and dont forget to pause the music at the bottom of the blog!




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Wordless Wednesday



Tuesday, April 21, 2009

House tour with Bird!

Hey everyone its Bird here. I know its been a LONG time since I have talked to you all, so I thought it would be cool of me to take you on a tour of my new pad. I like to sit in the front yard and gaze in amazement at the tree blowing in the wind.
And I LOVE to feel the wind rush through my hair!!!!!


But enough about me, come on into my house, thats it right there, the yellow one. With the boxes in front of the garage.



Come on in, Ill show you around. Oh, I'm sure my mom wants me to make sure you get that we are still unpacking, painting, and such things..........We will have another tour when that's all said and done!


Here is the living room, right now since there isnt furniture, its my play room, with a great view of trees blowing in the wind.







here is our little eat in off the kitchen, I sit in that chair with the red frog on the seat.






Here is the dining room, we still need to get a table and chairs for it.





This is what mamma is decorating the family room around. Shes pretty proud of these pillows. I cant wait to waller in them!










This is the living room downstairs, it still needs paint, and boxes put away, but me and my brothers like to kick it down here brother style!








This is my room, its pretty cool if you ask me, who wouldn't want monkeys, and zebras surrounding them at night???























This is my big brothers room, still needs books on the shelf, and things on the wall, but they are excited about it.


















That's all for now, when mamma finishes all her work, Ill take you through again, and you can see the house the way they imagine it to look:)
Ive missed you all,
Love Bird









Sunday, April 19, 2009

Phew!!!!!!!!!!

We are moved. Boxes are in the right rooms, and some are in the garage. However, we are moved. Despite some rain, we made it, and with all the help even got wallpaper down and some paint up! There is still LOTS to do, but the chaos is over, and we can start to slow down again. Noah and Joel are more than excited with their new diggs, and we love the neighborhood! Alex has been handling all the stress with smiles and cuddles. Our first night in the house was quiet, and I had the best night sleep that I had had since days before we moved.
I have missed all my bloggy friends so much, I am trying so hard to get caught up with everyone. I feel very disconnected with some of you.
Here are some pictures of Alex from the day before the craziness, I figure you all need your Alex fix!!!!!!!!! I am still not used to this boy crawling, everytime he crawls I smile! Im so proud of him.

Our last afternoon in our old yard.










Alex is doing something new, fabulous, sweet, and adorable. I will do my best to get it captured on video to share with you soon!

Thursday, April 16, 2009

Twitter is my Plan B

Even though I don't have internet access through my computer I can still send updates to everyone via Twitter. Gotta love that iPhone! Check for updates at http://twitter.com/japruitt99 until I get my internet back on Monday.

My Internet is Gone!

Well our internet provider who shall remain nameless at this time, but it rhymes with horizon, screwed up our move and cut off the internet to our old home earlier than they were supposed to. In order to reconnect it apparently it takes 5 - 10 business days and by that time we will be in the new house. So I have been without internet since Tuesday evening and will not get it back until next Monday. Luckily my sweet, charming, talented, loving, strong, caring, smart and very handsome husband has access to the internet and can post for me. Isn't he the greatest?

Tuesday, April 14, 2009

I have 3 Full days left



before we move!!!! the good news is we are moving into more space, the bad news, it is going to rain this weekend:( Rain or shine we are moving!!!!


I think I have made some progress since the last picture of boxes.


So i will do my very best to blog in the midst of moving, and being 5 months pregnant(ok so I wont be five months until next Tuesday), and making dinner, and picking kids up from school. If I miss a day or two, you know why!

Monday, April 13, 2009

Spring Break!

This past week Noah and Joel were on spring break. We kicked off the week with Noah's soccer game then to a movie (monsters vs Aliens), The older boys had a sleep over at the farm, a walk to the park, a trip to the skating rink, and of course it ended with an egg hunt, and candy.
Alex decided that this week he wanted to explore more of his house, and has started leaving rooms to go see what else is in the house, Adam found him in the bathroom on Saturday:) Since we only have 4 more days until we move, I guess he thought he needed to get all he could out of this house before he had a new one to explore.
At the end of the week Joel had a cough and was snotty, and of course it wasn't long until Alex had the same symptoms, so we have had a few breathing treatments, and lots of suctioning going on. Despite all that it was a very restful week!











We are supposed to be going to St.Louis on Tuesday for a NICU follow up, and an eye appointment, but I'm not driving two hours with a sick boy, so I have to decide today if I am changing appointment times or not.........He hasn't had a fever, but lots of snot, sounds like a dog when he coughs, and isn't sleeping his best. He is tolerating his feeds, but isn't eating as much from the spoon as normal. Ill know by tonight what we are doing tomorrow.


Thursday, April 9, 2009

The duck is dead

You remember the duck? Well, he is dead. Much use and two holes, it was all he could take. So instead of going out and buying another, I put Alex in the tub like all big boys. He loves his new found freedom. I do put a towel down so it isn't as slippery, I'm not sure if he needs it, but it makes me feel better. He loves to touch the water coming out of the faucet, and is so happy he can turn all around. So goodbye duck, we don't need you anymore. (these pictures were taken with my cell phone so they are a bit grainy)








Monday, April 6, 2009

Nathan




Please have this family on your hearts. Nathan is an adorable little guy who was born with RTS, he will be a year this month. His mom and I have been talking on the phone since last summer, and she is my dear friend. Nathan had surgery yesterday, and the doctors ran in to some difficulties. I don't have specific details to give you, but I can tell you to pray for him and his family. Hopefully Nathan will be home in the next few days, and his mom can update us all.

Down on the farm we.......

Drove remote control monster trucks.







sat on tractors.




squinted in the sun.




snuggled on blankets.









Sat in the grass for the first time ever.





























explored a nearby creek.











walked down a winding road.






















went under a bridge.














drove remote control monster trucks some more.






and cuddled in the sun.