Sat. 5/10 - update

I would have despaired unless I had believed that I would see the goodness of the LORD...Wait for the LORD; be strong, and let your heart take courage.
(Psalm 27:13-14)



This was the verse for today in my devotional. How fitting! Thank you God that You speak intimately with ME (little old Lori) and know what's in my heart and what I needed to hear. These last couple of months have been extremely difficult, but even before all this began, there were things in my life that I had been very burdened by. Various things...I'm sure each one of you reading this have very similar concerns and burdens going on in your life as well. The Lord has been working on me, trying to teach me and show me His Faithfulness for quite awhile now. It's just a part of life. However, when times get hard or we don't understand God's ways, that's when "life" can sometime seem hopeless. We can't see the future. We don't know how or when the rest of the story will unfold. It's scary. This is where I personally find myself now. "God...I want to TRUST YOU! I know Your plans for me are great. They are ones that I myself couldn't even dream up or think were possible. Please help me to be still...to leave all my worries, concerns, questions, and "what ifs" at Your feet. I want my hope to solely be in YOU, not my circumstances. And even though I KNOW all these promises in my head; Lord, I plead with You to make them a reality in my HEART!!!!!" Peace be still...



Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and my hope is in You all day long.
(Psalm 25:4-5)



Thank you for reading Caed's blog each day. For simply loving him and us enough to take time out of your busy day. Thank you for (unknowingly) giving me an outlet. When this first began, it started out as 2 bulk emails sent to our close family and friends updating them on Caed's condition. Then, it turned into a daily blog. People have told me not to feel burdened with having to do this each day. What they don't understand is that God knew I desperately needed to "vent," and He created this especially for me! Honestly, nothing would change if I found out no one was even reading the blog. Not only do I cherish "Caed's daily medical updates" for us to look back on, but truly the opportunity to just lay my feelings out there. I used to be a big journal writer through high school and college, but am now rediscovering how therapeutic it is for me. Thank you again for allowing me to do so.

As far as Caed today: some bad, but a lot of good! He gets "unhooked" from his TPN usually from 4:00 - 9:00pm. He was outside 90% of that time. He did very well. He ate a little ice cream, pizza, and a chip today. (however...most all of that came back up) That part is very frustrating!! Dr. G said that's to be expected - it will just take lots of time. But, when you see him improving in so many other areas, you just want his stomach to do the same. His G-tube draining amount doubled from yesterday! Not sure why. I was really excited to see that number going down each day. Really can't pin point what may have caused the difference. Caed is learning our daily routine pretty well now. He is also getting used to Nurse Mommy messing with all his tubes. When I was hooking him back up last night and doing all the meds into his port, he turned to Reagan and said, "Hey watch me! It doesn't even hurt." The reason we laugh at that is because he's been having that EXACT thing done to him for the past 70 days! Now, all of a sudden he plays the "brave card." He and Reagan played very well together today. I would almost forget about them (if I was dealing with Caleb) and then listen out the door and hear some very familiar dialogue from days past. It was SO good for both of them. I know they have really missed each other! Even though we are here now, Caed isn't the same. (physically VERY limited!) Virtually nothing is how is used to be between them before all this began. So, the little time they do have to "semi-play" like they used to...is golden!

Todd will fly back in tomorrow evening. We are all very ready for him to be here!!

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!