Monday, February 8, 2010

Growing too Fast!!!

I never realized how fast time seems to go by when you are a mother. Seems like just last month when he could fit in my lap no problem... now I have to open my legs so that he will at least have support on his neck! He is growing like a weed! He is so big! He looks much older than his age! At least that is what EVERYONE tells me! These are a few pictures from his new chair! It looks alot the same but has a nice head rest on it... and it is fitted to him more!

He is such a Happy Baby!!! I thank God for that! Even though he has all these challenges in his life that he has faced or is going to face, I hope that he can maintain his good attitude about life.

It has a nice foot rest for him. The other chair that we were borrowing had straps for his feet and I never liked the idea of strapping him down!!

His chair even has a really cool tray that just slides into place and he can use it like a desk. We put his toys up there right now but soon we are going to get him into coloring and finger painting! I can't wait!!! He is getting crayons (along with many other things) for Valentine's Day.

This is his toy that has a little bit of everything on it... but he thinks he is too big for it now cause he throws it as soon as you give it to him!!! But the bottle is one of his favorite toys right now... it has a few blocks in it and he can shake it and hear the noise!!!

We love to hold him and try to get him to sit on his butt since he isn't used to sitting up. But recently he has been such a wiggle worm that we have to sit on the floor and let him lean against us. I know this is a good thing and I am very thankful but I also worry about the future... will I be able to handle him then?? I hope so!!!

This picture really should be at the end cause I layed him down last, but he was rolling his legs and butt so much last night. He had an itch on his back and would kick off the couch and roll over on his side!! Mommy was so SO proud!!!

Here he is in my lap. I know it is hard to tell but he is... He has grown so much and he doesn't fit anymore! : (
And here is my Big 21 month old little boy! He sure did do alot for his Daddy and I! He made us grow up A LOT!!! And never have I had so many emotions about one person...We have had lots of good time, few bad times, and many scary times, but all-in-all, This is the love of my life! There will never be another one like him!

On a side note, not many people know how depressed I am. I really try to hide it! I am not depressed all the time, just when I let things get to me! The other night, I was in the shower and just a crying... Derek asked if I was ok later that night and I just broke down... All I ever wanted to be in life was a mommy... and I never wanted just one child (of my own)... and Baker was such an easy delivery. So being around people that have little babies or are pregnant is just hard on me sometime. I always dreamed of my little red headed children being filthy after picking them up at Becky's and not caring cause I knew that they were having a blast... and Baker can't even be around sand. We picked out the name Baker cause we thought it would sound good over the loud speaker when he was up to bat or was involved in the winning play of the game. Now it is a chore to get him to the games. I guess what I am saying is please pray for me... I know that God has bigger and better things in our lives other than having children. And I know that Baker is here in our lives for a reason... Just pray that God continue to bless Baker! And pray that we, as Baker's parents, are doing what we need to do to raise Baker the best way possible!!

I am trying to plan an Annual Batting with Baker Hit-a-thon for later this year to raise money for us to go meet other families of affected children and the extra will go to the Myotubular Myopathy research that is going on. But I am not good at getting things together. I have it in my head but actually doing it is going to be hard!!!

Wednesday, February 3, 2010

Pictures...Part one

Ok... I know that I have been away from my blog for some time now... and I have to upload some pictures... but I don't have my card here at work to load them, so I am having to steal them from FaceBook! : ) I even need to upload pictures to Facebook too!!

These are pictures from our Hospital trip at the beginning of the year when we had to do a sleep study. And that ended up being a Nightmare... We had gone earlier that morning for a regular Home Vent Clinic. We do that every 6 months or so. Just to check that the vent is working correctly. But we were scheduled for a sleep study that night.

This is before the sleep study started.

Poor Baby... This is after the hooked all the wires to him. We had to wrap his head cause he loves to play with his hair while he sleeps. I was really worried that he would pull one loose and have to start over. It was a long process getting him all hooked up.

He was really tired cause it was pushing 10 oclock. But he was so uncomfortable. I finally turned out the lights and he sorta slept. It was different though cause I couldn't read the pulse ox machine. They could read it in the observation room but I couldn't.
Derek was really worried about having to stay at the hospital and be watched while he slept so I told him that it was fine with me if he went to his Uncle Don's house to sleep if we could get back early... so I was all alone... I should have NEVER offered that to him. I got NO sleep. The tech people were in and out of the room all night with their bright flashlights. They had to tweek his vent and I had to do it cause they aren't respritory therapist. I was up and down all night trying to understand what they were doing to my baby. At one point they put a piece of tape over his nose to try to get a more accurate reading on his vent. I knew that he breathes some out of his mouth and nose but I didn't know that he did as much as he did cause as soon as they blocked his upper airway, his stats dropped low! And they put him on oxygen and did a blood gas. I never realized it was because of the nose...

Anyways, the doctor was worried about changing his vent setting so much so we had to stay over night for them to watch him. As SOON as they took that piece off his nose, his stats came up to 99, 98ish and I took him off the oxygen. He was happy. Tired as all get out, but still happy!!

This is him watching a movie on the DVD player that goes in the car. A LIFE SAVER!!

It was so crazy being moved from one place to another and having to have all those people come in to get him hooked up to all his equipment cause they have to change it from our home stuff to the hospital stuff. We had 4 Doctors/Practicioners come in and the charge nurse, our CNA, Respitory therapist, Case worker, Derek, Me and Baker all in that itty bitty room!!! UGH!!! By the time everyone left and it calmed down... Baker was SO tired!!! He took a good long nap... as did I!

This was taken right before we left to go HOME!!!
I am reminded that This was our first hospitalization since we were sent home at 5 months... PRAISE GOD!!!

This is more recent... but not a great picture... Derek took a picture (on his phone) of Baker's new head rest... It is so nice!!!

Hope everyone is having a GREAT 2010... I will be back later with another Post!!!