Bitter...sweet

I have said before that sometimes the unthinkable doesn't happen to someone else....it happens to you! Today we were reminded of that again. We received devastating news from back home that one of our former youth passed away over night in her home. (her family is apart of our church and her mom one of the church secretaries) I honestly can't even find the words to say. We are all in shock and completely devastated. And yet...even now....even trying to sort through the pain and confusion, there is hope! Karley was a believer, and we know is now in the presence of God. I tried my best to explain to Caed why Mommy and Daddy were sad (and preoccupied), and his comment was...."But it's ok, cause she's (pointing upward) in heaven with Pop!" Out of the mouths of babes. Yes! Caed is right! And yet it doesn't take away the utter devastation that a mom, dad, sister and countless friends are engulfed in. Please pray for this precious family, the Sonntag's. Lord.....we need YOU!

Caed's hardest day is over. He was a trooper. It began in the treatment center with lots of blood draws and IV fluids. He has not had an IV without a central line in a very long time. So....this time was a little difficult, but we had a good "talk" and he was incredibly brave. The nurse was extremely complimentary of him, and said he did better than some of her adult patients.

We had a great clinic visit with his drs. They were so amazed at his progress!! Said his labs looked perfect, weight was good, and honestly couldn't be happier with his present condition. We will need to really push his ORS (drink) now more than ever with summer approaching and the amount of time he is out playing. The risk of getting dehydrated will be high. Dr. M also said he could begin drinking some G2 (low sugar Gatorade). Caed will love that. He loves his "special drink" but to give him another choice every now and then will be wonderful. (not to mention help him feel a little more normal) And praise God.....they DID lower his tube feed time by 2 hrs. So, now he will only be hooked up 16 hrs./day! He will continue lab draws/weight checks monthly, and if things continue to look good, we can lower it again in a couple of months. And just continue this pattern. They are also very pleased with the number of stools......3-4. As I was going through his "poop journal" calculating the last 4 months....it was so evident.....he is improving. And to top it all off, they don't want to see him again until OCTOBER!! Yea! Lord willing, this will be the case. (perfect time to come back to the pumpkin patch!)

Next was the scope. It was a little more difficult (physically and emotionally), but we got through it in one piece. Our GI dr. was also very pleased. He said his anatomy is still very "abnormal" (hard getting the scope through his stomach into the duodenum), but it definitely went faster this time than the past several scopes. He took lots of biopsies, but won't know anything for 2-3 more days. The first section of his small bowel continues to be dilated, and I'm sure we will see that more with tomorrow's small bowel series barium test. He doesn't think he has any bacterial overgrowth which is VERY common in short gut patients. Another praise! The lining of intestines "looked beautiful.....crystal clear!" Again, wonderful news! Caed did have trouble again coming out of anesthesia, but I think overall.....it was much quicker than all the previous times. They added some Fentanyl this time to the anesthesia, so possibly that helped out some.

Tomorrow will be the bone scan and the small bowel series. The hard part will be leaving on Thurs. without knowing in detail the results from all these tests (from our drs. viewpoint), but we stay in contact with them weekly, so I'm sure we will hear more soon.

Thank you again for your prayers for Caed today. Overall, he did wonderful!



Spending several hours in the treatment room for labs and IV

Again waiting several hours for the colonoscopy and EGD.