Tuesday, May 20, 2008

Tue. 5/20 - update

Thank you God for giving us such a good night this evening. It's always nice to go to bed on a happy note! Things started out pretty good when Caed woke up this morning. He was ok for about the first hour or so....then the crying/vomiting began. Just like everyday, we have these moments scattered throughout the day. Sometimes they last longer than others. About mid-morning, my good friend Marilyn came out with her kids. Caed enjoyed being around them (even if most of it was just watching them play while he sat on the couch). It's good for him to be around other children. I think sometimes it takes his mind off his problems for awhile. Then, this evening, we went out to "The Everitt Pool" (thank you Lee J. and Sandy) and he sat and watched everyone swim. He did ok for about an hour and then he gave me the "sign" (hand on tummy) and I knew it was time for us to go. As soon as we left the backyard he began crying. He threw up when we got home and then sat on the couch for quite awhile. He just seemed so depressed. Finally, Reagan made it home and that's when we saw Caed truly be himself all day long. Grammy had bought them a new game for their Wii, and he wanted to play. He jumped up and was being so silly. Immediately a light in Reagan's eyes went off. When she sees the"real Caed" she gets so excited. I know she misses him (like we all do). They played Wii for awhile, made some silly videos on the web cam, went downstairs to play air hockey, etc... and just overall had a VERY good night. My parents went out this evening, so it was just us 5 here. I am so grateful for having this time. (especially since Caed was feeling well) It was good for all of us. We have needed it! We began today giving Caed 5cc. (tsp) of Carnation Instant Breakfast every hour. (that's basically what he would be getting with the feeding tube) There were times he threw it up, but overall...it was progress. We will try to continue this and also gradually increase it like they did in the hospital. IF he can successfully do this, the J-tube option will probably be done away with. We are wanting them to take out the G-tube. It will be a week tomorrow that it has been totally closed! Dr. Goldthorn can't believe it! I'm sure just having that in his stomach is irritating it. I talked with Dr. G more about the Pediatric Behaviorist today. She spoke very highly of this woman. We will probably set up a time for her to initially assess Caed next week. I am excited to start that and am praying for positive results. Dr. G also said Caed can most likely stop the antibiotics by the end of the week. I am really praising God for that one! These meds are continuous all day and night. I have been having to be the day AND the night nurse. Have only been getting about 4 hrs. of sleep the last few nights. Surprisingly I feel ok though. Maybe just knowing it will only last a few more days helps.

Todd will fly back to Celina in the morning. It is always good having him here. Not only for an extra set of hands, but I think having us both around is good for Caed (& Reagan). Next week when Todd flies out, Reagan will get to go with him. She has been wanting to go back for awhile now. It's always good for her to be back home if only for a few days.

Please specifically pray for the "nutrition drink" we are giving him to increase and also be able to STAY DOWN! (the TPN can also decrease the more his stomach starts working on its own) A huge need!! We also had a praise with some blood work done today. Thank you God for answering our prayer!


Caed and his friend Ben taking
care of the fish


Playing Wii

*Thank you Celina Bobcat football
team and coaches for everything you
sent Caed! He wore his shirt very
proud today!!!


Nurse Reagan


Caleb and his big blue eyes

5 comments:

Stacey said...

I'm sure you probably have a written update coming... but I don't know if I can stay awake tonight to see it! Matthew woke up a lot last night (he finally went to sleep at 3!) so I am starting to crash. The pictures look like things are okay. So, I guess I'll not stay up any later to check in on you guys. We pray at every single meal for Caed. We don't ever pray for our food anymore at all, lol! We love you guys!

Anonymous said...

caed looks like hes having so much fun in the pictures he looks a lot better to. i pray to God every night that he will healand i guess its working. you rock Caed and i know you will get through this.

Anonymous said...

Todd and Lori,

Reading your blog today, the thought came to mind that there's a good reason God doesn't let us know the future in advance. Can you imagine March 1st finding out you would be going through this process for this long - with still no end in sight? That is why He wants us to live by faith and not by sight. It's much easier to take things one step at a time.

I praise God that you have a very supportive family and group of friends.

I praise Him that you have such a supportive church family.

I praise Him that you are with doctors, nurses, and other health care providers in which you have confidence.

I praise Him that though you are not home in Celina, you are "home."

I praise God for the realization that His Son is at His right hand praying, too.

I praise Him that through this entire process, you have been "real" - you have shown that it's alright to question God, and you still show your faith day after day.

I praise God for the internet - because you have reached untold numbers of people you've never met with your continuing blog.

I praise Him for the valleys and the mountain-tops He's brought you through, and your willingness to share your journey.

Most of all, I praise God that He, the Creator of the universe, hears constantly about this little boy named Caed because of the prayers of innumerable people - and He loves Caed far more than even his mom and dad.

Oh yes, I also praise God that He doesn't tell us the future. In all likelihood, we couldn't handle knowing it all at once.

Your prayer partner in Albuquerque,
Debbie

Anonymous said...

What a breath of fresh air it is to read the blog this morning. I thank God for our little Caed. Knowing how easily we all could have lost him and now seeing how far God is bringing him.......one can only imagine what He has in store for Caed. Just think.....even if it is one soul that is won for our King.....just one. What an awesome thing. Our God truly does things in mysterious ways. For the Glory of the Lord.

Anonymous said...

Whoops! That last was from me.

G & K