Fri. pictures

Fri. 5/9 - update

Each day seems to get better and better. Again, overall Caed did very well. I did not have to drain his G-tube very much, which is a big praise! We have been measuring everything coming "out" of him very carefully. Each day seems less and less. (other than urine) He threw up once today, but only because he got upset. We still have several times throughout the day where he is hurting, but the pain spells usually don't last very long. After his nap, he immediately walked right outside. Normally I have to coax him a bit. He did great!!

One prayer request in particular would be for me. At the hospital we were basically taking 12 hr. shifts. We at least had time each day to "get away" a little bit. Now, things are 24/7!! He is doing better (not "normal" by any means), and is sleeping VERY well at night and nap time. However, the rest of the day is pretty constant. Sometimes he will go for longer periods than others, but usually I can't go far (even another room). He can be totally fine one minute (laughing, etc...) and then the very next, screaming out in pain or anger/frustration. Someone has to be right there at all times. With Todd out of town a lot now, most of the responsibility is on me. Please just continue to pray for me for strength, patience, and a calm spirit. There are times I get frustrated very easily. I am SO thankful to be home, and I firmly believe he's getting better because of it, but it sure is a lot MORE work. Also pray for Todd. He is back in Celina 5 days a week. His heart is here w/ Caed and our family, and he wishes he could be of more help. I know he feels pulled in two directions.

As draining as it can be at times, I am very thankful to be here. I have LOVED having more time with Reagan and Caleb! I have missed them so much! These past 2 months, Todd and I would usually only see them 2-3 times a week. It is so good to "learn" Caleb again. (his likes, dislikes, routine, etc...) Still don't have it totally down, but I'm getting there.

Thank you for continuing to pray! We had such a blessed day today!


Nana and the 3 Amigos

Day at the "barber shop"

Daddy...you'll be SO proud! (it has been over 2 mos. since Caed's last haircut)


Before - (not happy with his Mama at all!)


During - (I think I just about put him
to sleep...he was so relaxed)


After!!

Thur. 5/8 - update

Today was a very good day! There was less drainage from his G-tube, less throwing up, and just overall in a better mood. Our Home Health nurse came this morning, and that was probably the worst part of his day. She had to change his broviac dressing, so there was a lot of anxiety and fear! But, he did great...was very brave. I think it will only get better each time she comes. He will start to know what to expect more. When he woke up this morning the first thing he wanted was a donut! (but specifically a powdered one...which we didn't have) Then tonight he ate 3 bites of pizza (thanks Jack & Tronda!). We have also begun giving him some Carnation Instant Breakfast (drink). The drs. are telling us to really push that if we can. (it's basically the same type stuff he was getting through his J-tube a few weeks ago) So far over the last 2 days he has only drank about 5 oz. altogether. But, hopefully he can increase that amount slowly. Our main concern there is just for him to keep it down. Some of it has drained out the G-tube and he also threw up some, but again, we pray that a little has gone on through. After his nap this afternoon, he felt like going outside. Something we are desperately trying to encourage. He did good. There are times he will cry (either in pain or just tired), but we try to help him "keep going" and not allow him to always run back to the couch (his security). Again, we were very encouraged by today. Still a long way to go...but hopefully we're gradually making some progress!!!


Caleb - 3 mos. today!


Taking a cruise down the block (look familiar Lesli?)


Daily fish feeding

Fun again with the water gun

We will not let go!!

Although things seem better now that we are "home," Caed still has some major hurdles to overcome! First and foremost, he has to be able to eat and keep it down!! We feel like his stomach is trying, but it is going to take a long time to fully be able to function properly on its own. (if it even will without a transplant) We can't thank you enough for praying for him like you have thus far. We continue to be amazed at how FAR REACHING his name is. So many that we do not even know are fervently lifting him up. With that being said, we continue to ask for more!

My dad sent this verse to me a few weeks ago:

Whoever calls on the Lord, do not give yourselves any rest, and do not give "Him" any rest until He establishes Jerusalem and makes it an object of praise throughout the earth. (Isaiah 62:6-7)

We have also been reminded of the story in Genesis where Jacob wrestles with God (ch. 32 - verses 22 - 32) I will not go into the full account, but want to stress vs. 26. But Jacob replied, "I WILL NOT LET YOU GO unless you bless me."

This is our plea now: Please continue to join us in prayer for Caed's ultimate healing. We want to demonstrate to God that we will not rest until the answer comes, and that we will pray without ceasing until He makes the work He is doing in Caed's life an object that gives God (and God ALONE) the praise throughout the earth. (Isaiah 62) We are also pleading with God, hanging on to Him with all our strength crying out, "We will not let You go until you bless us!!!" We ask each of you to commit at least one day this week to fasting and prayer for our son. God is doing an extraordinary work in and through Caed. But, we can't stop now! Time is urgent and a transplant will continue to loom over our heads until his body starts doing what it's supposed to. Our God continues to perform miracles today, and what an amazing testimony we all will have to see this one in Caed. TO GOD BE THE GLORY FOREVER!!!!

Wed. 5/7 - update

Today was a pretty good day overall. He slept great again last night, and is getting used to being "hooked up" here at Nana & Grandaddy's. Again, we had a few moments of pain, but not as much as days past. He may have only thrown up once, I believe. We also had a BIG day in that he had his first BM in 4 days!! The drs. did an x-ray Mon. before we left the hospital and said he looked ok (no stool build up). But, we have been getting a little concerned. So, we know things are going through. Hopefully he will go more frequently now and not wait 4 days each time. He was in a pretty good mood most of the day as well. A few times he and Reagan really played like they used to. It was so good to see and hear that. (didn't last too terribly long, but I know it was good for the both of them) This evening as we were eating, he saw chips and asked for one. He ended up eating 3. I watched his G-tube pretty carefully because I knew "Julio's (spicy) chips" is not something we want settling in his stomach right now. Psychologically, it was good for him to "think" he was eating them though. ha!

Today Megan and Xan left. It was a very emotional morning. On one hand, it was so sad to have to say good-bye (not knowing when we'll see them again), but on the other, we were happy for them to be reunited again as a family. Thank you for ALL you did Megan. My dad was looking for you when it was time to clean up the kitchen this evening...ha! And, wouldn't you know it, Caleb was pretty fussy today. He knew you were gone and was so sad!

It's VERY late tonight. Everyone is in bed but me. We pray for another good day tomorrow!

"For My thoughts are not your thoughts, neither are your ways My ways," declares the LORD. As the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts. (Isaiah 55:8-9)



Megan saying good-bye to Caleb




Thank you Megan and Xan!!
We will miss you more than you
know!

Tues. 5/6 - update

Cast all your anxiety on Him because He cares for you. (1 Peter 5:7)


Well, we survived our first 24 hrs. home! Caed did great through the night. We got him a little toddler bed (only because it's lower to the ground and will be easier for him to get in and out of). He never woke up in pain, etc... Only "slapped" the bed (his way of getting our attention) a couple of times because he couldn't find his water. But, never made a peep. This morning was a different story. When we woke up, I guess he was thinking that since he is "home," he wouldn't be hooked up to anything. (usually wasn't when we would come out on our passes) He was VERY upset because we were having to follow him around with his TPN. He basically stayed on the couch most of the morning. Then, he went to his bed and took a nap. After he woke up, it would be time to get "unhooked." (3:00 - 8:00 pm) He wanted to go straight back to the couch, but we wouldn't let him. We encouraged him to come outside with everyone else. Finally, he came and had a little fun. The golf course was under water, so he loved be able to splash around. We also went for a walk in the wagon. Occasionally he would cry out in pain (?) and we would drain his G-tube to give some relief. He did throw up a few times, but the draining seems to help that. So, today was pretty typical of the last week. However, instead of it all happening in a hospital room, he was here at "home." I know that's got to make a difference. Dr. G's office called early this morning to see how he did overnight. We also survived all the "nursing" duties. It was a little nerve-racking, but I think the more I do it, the easier and more confident I will feel. Overall, we thank God for today! Todd keeps reminding me it's only the 1st day. We know we are taking baby steps, but steps none the less. Please continue to pray for his little body!! Also, for those of us here taking care of him. It can get very stressful in a hurry...with him crying, Caleb crying, Reagan needing something (also continuing her schooling), etc... Pray for my patience. God is definitely trying to teach me in this area. Megan and Xan are leaving tomorrow. They have been here 8 weeks!! We cannot begin to express our love and gratitude for what they have done for us! We TRULY could not have made it without her!! Thank you Megan and Stan for loving us so much that you would sacrifice your "normal" life and turn it upside down. We will never forget what you have done for us!! With that being said, that brings up another prayer request. We now have one less set of hands. Pray that my mom and I can handle it all (throughout the day).

As I am writing, I can hear in the distance the faint sound of a West Texas spring thunderstorm. I am reminded of what an awesome, powerful God we serve. This evening has been filled with strong winds, hail, heavy rains, lightning, and thunder (& a brief power outage!) Now, it is calm and the rains have diminished to a light sprinkle. I am very confident that all those living in this area are SO grateful for tonight! Although they may not have liked the "storm, " it still brought MUCH NEEDED rain. We are living in a "major storm" right now. The lightning has stung and the hail has beat us down, but oh!...we are so grateful for the "reign." Thank you God for reigning down on us!!!! We desperately need you! Thank you that you promise calm after the storm.

Then they cried out to the LORD in their trouble, and he brought them out of their distress. He stilled the storm to a whisper... (Psalm 107:28-29)

The little bed we got for Caed to sleep in


Thank you Celina Jr. High for the bear and
banner!! He has hung on to it all day.


Playing a little water golf


Playing water golf and splashing his sister...who
can ask for more fun?


Going for a walk around the block
(can you pick out the child who now hides
when the camera comes out?)