Yet another curve ball

The last day of September. I thought this day would mean our time in "Cornhusker Country" was coming to a close. However, the Lord may have different plans.

Our clinic appt. actually went really well today! Get this! Caed ended up not gaining a pound this week................He gained almost 2!!!! ha! We were all so shocked by this. What in the world happened? He still has c-diff, and his stools continue to be around 7-8x/day. The only things that are different from last week are his diet and also the new ORS drink. Regardless of 'how' he gained, we are just praising God for those 2 extra pounds. The dr. said he is in the 10th percentile in height and 15% in weight. They are very pleased. All his lab numbers are looking great too.

Our next step is to: begin weaning him off the IV fluids he gets at night. They also want to advance slowly this week in the rehab of tube feedings. (this past week we did nothing while trying to get rid of c-diff). We will go very slowly and if he begins 'stooling out' they want me to stop. We will also continue the new antibiotic (Vancomycin) and PRAY it does the trick with the c-diff.

They believe Caed is doing so well, they are already making plans to take his central line out! This is such a big deal!!! However, a lot has to happen before that occurs. Mainly....he needs to continue gaining weight or at least maintaining and his numbers (primarily CO2 level) needs to stay in the normal range as they wean him off the IV fluids. This is SUCH great news! Thank you God!!!

However....now for the bad. With this "new plan" comes more weeks here in NE. They are thinking we will need to stay here until the end of Oct. The end result (no central line) is our goal and they think it can happen in the next 4 weeks. For Caed and his health, this is wonderful. For a Mommy and little brother who miss their family SO SO much....this was awful news. I left clinic this morning with mixed up emotions. On one hand, I was thrilled with Caed's progress. On the other, I wanted to curl up in the corner and cry my eyes out! How can we keep this up for 4 more weeks? Do you know how much babies change in a 2 months time? I came back to the room.....cried a little (ok....actually ALOT!), and realized that although this was such a huge shock to Todd and I, it was no surprise to God. He knew before we ever got on the plane in Lubbock how long we would be gone. It's sure a good thing I didn't. I don't think I would have agreed to it had I known how big of a commitment this was actually requiring. However, just like the past 7 months.....God only gives us what we need to make it through each day. There's no way we could make it in life if we saw the "big picture." That's what makes 'faith'.....faith. I know He will continue to get us through 30+ more days..........

After talking it over with Todd, we decided he needs to come up this weekend. We desperately need to see him! He will drive up Thurs......leave the car for us, and then fly back Tues. sometime after Caed's clinic appt. Then, I talked with my mom and plans are possibly in the works for Reagan and Caleb to come up later as well for a few days. I think this will be good, and help both Caed and I these next 4 weeks in giving us some great things to look forward to. It will sure help to break up the time. I have yet to mention to him about Reagan & Caleb coming until I know for sure it's going to happen. I know he will be bouncing off the walls with excitement! (as will I!!!!) This Mommy desperately NEEDS to see her other 2 babies!!!!!!!!!!!!!!!

You know, just when I feel I have this whole thing figured out and 'think' I know the ending, God throws a curve ball. Sure a good way to keep me on my toes. Today has been a hard day emotionally for me. I thought I was hitting a wall these past few days.....just missing Todd, Reagan, and Caleb SO much!!

I am amazed at how many things God continues to teach me through all this. Through every surgery and medical procedure, through 72 days spent living at the hospital, through not getting to see my 2 other children much, through aching day in day out having to watch my child suffer, through being 'separated' from Todd this summer as we were in Idalou, and now through being further 'separated' from my family here in NE. Why God? Why did you allow this all to happen in our lives? Why have we yet to experience 'normal' life as a family of 5? What is Your purpose? I don't understand....................

And I never fully will. At least on this side of heaven. Is it absolutely necessary that I know it all and understand it? No. God never said that was my job. But, what He did say was to simply "Trust him." Do not let your hearts be troubled. Trust in God, trust also in Me. (John 14:1) I do know that 'God's ways are not our ways neither are His thoughts our thoughts.' (Isaiah 55:8) And boy am I thankful for that! I'm certain I would mess things up in a heartbeat. He has been SO faithful throughout this, why, why, why do I take my eyes off Him and begin to worry? He who began a good work in you will carry it on to completion until the day of Christ Jesus. (Philippians 1:6) Just because I don't "see" what God is doing, doesn't mean He isn't here!

Thank you all for continuing to pray for Caed! As I watched him "play baseball" the other day.....I was amazed at how far he actually has come! Just 7 months ago, he was laying in the ER fighting for his life. And how close he came............. Now, after all this time, he is alive and well and thriving. (even though it may be slow) I have considered so many of you to be my mighty prayer warriors. God gave me a new picture tonight. Instead of all these individuals, we truly have an ARMY!!!! Strength is great in numbers. Thank you for sticking by us, for supporting us in so many ways, and for not giving up. Perseverance is not easy. Thank you that we have not had to go at this alone. It's neat to think how He has used this 'army' to meet SO many needs. Some of you met urgent ones in the beginning.....watching Reagan and Caleb, bringing baby clothes because Caleb had outgrown the few he had there in Lubbock, bringing Todd and I food up at the hospital, or just simply sending a card or stopping by for a visit. Many of you met a need by sending Caed gifts and toys (little things that were so needed for this little boy who was undergoing a major trauma). Food was brought out to my parents' house in Idalou, airplane vouchers were given, along with overwhelming financial support! Then, as the days turned into months and Caed was finally allowed to "go home," you didn't stop. Many of you continued to stop off and visit us there in Idalou. You invited us to "fun, kid things" to help Caed try to resume a little bit of normalcy. You took Reagan in and loved her like she was one of your own. You watched Caleb so my mom or I could have a break. You supported Todd being gone a few days a week from his job so he could come see us. You were a listening ear. You mowed our yard, you cleaned our house, you brought food. Some of you sent cards/emails or posted comments on the blog that always encouraged us. You offered to help in MORE WAYS than we could ever take you up on. You sold candles, you gave..... You met us at the airport, invited us to dinner, took us to our 1st rodeo, and have become our "Nebraska mom & dad." I am completely overwhelmed at even trying to remember ALL the thousands of ways our ARMY has stood behind us and fought this fight with us. We could never even come close to mentioning all the ways YOU have blessed us! Yes, we have truly been blessed............ but it is GOD who does the ultimate blessing. We know that not a one has been forgotten by Him. He saw YOU. He saw Your heart and the many sacrifices you made. Even though we personally may never be able to truly thank each and every person who touched us through this experience, we know God knows who you are, and that HE will bless you unfold!!!

Tues. 9/30 - update

We were able to go out to Vala's Pumpkin Farm today after Caed's appt. We met a very special family Sunday at church and they invited us to come spend the day with them. They are also a homeschool family and today was "Homeschool Day" at the pumpkin patch, so it worked out great. They are such a wonderful family and Caed of course loves their kids. Carol also met us out there. It was a needed day for me to "get away" and get my mind off of things. God knew that I needed Carol and Julie today, and I thank them for inviting us. What a fun place!! It was similar to the zoo in that you probably need a couple of days to truly see everything. I told Caed we might bring Daddy back out this weekend sometime.



Carol & Caed feeding the goats


Caed, Katherine (2nd grade), and Joseph (6th grade)


Hay ride


finding just the perfect pumpkin


Caed & "Punky"

Mon. 9/29 - update

Have a praise today!! Looks like Caed gained a whole pound this past week! We will "double-check" it tomorrow at clinic, but any gain IS A GAIN! Thank you God!

Dr. Mercer has decided to stop the Flagyl and begin oral-Vanco. Like I told them before, Caed has been on Flagyl many many times, and it has never seemed to work in my opinion. But, I guess we needed to try it again. Hopefully, this new antibiotic will WORK!! Please God......use this to get rid of the c-diff!!

We had a good day. Our plans completely changed as the day progressed, but it was all ok. We finally ended up back at Memorial Park playing some football. Caed had lots of fun!

Our plans tomorrow include clinic (of course), and then going to a pumpkin farm with a family we met yesterday at church. Hopefully that will all work out.

Thank you all so much for your prayers and comments/emails. I usually read them several times throughout the day. They are great encouragement for me and help me feel not so alone! I love each and every one of you!!!!

My Divine Appointment

Last Sunday Carol and Cordell had invited us out to their church, but after getting a call about Caed's c-diff and the need to begin new meds immediately, we weren't able to make it. This Sunday, however, God knew exactly where I needed to be.....Life Spring Church in Bellevue, NE!

The service began like many others, singing various praise songs. However, the minute Blessed Be Your Name started.....I lost it. I knew right then and there it was no coincidence. The Lord was speaking straight to ME! The words have always meant a lot, but hearing it today in our present situation....something was different. I wasn't able to sing....I cried....and just soaked it in.

Just yesterday I got on line and was listening to a preacher speak on Daniel ch. 3 (How to Live When Hard Times Come). Well, once again.....no coincidence.....God apparently wanted to pound this subject in my head. The pastor this morning spoke from....you guessed it.....Daniel ch.3! There were several hundred people sitting in that auditorium and yet my God was speaking directly to ME! 'Am I truly trusting Him to handle my trial in the best way HE sees fit?' I'm not so sure I have.

Please continue to pray for me. I truly covet your prayers!! Don't know if I've ever been in such a deep valley than I have been this past year. God is working on me....I know that for sure! But, just like a rock and chisel, it definitely hurts. God is ultimately creating a beautiful gem. Pray that I would not fight it. What tremendous blessings I might miss out on......

'Justin' Hollingsworth at bat!

Fri. 9/26 - update

Caed and I have had a busy couple of days. Last night Carol and Cordell invited us to the River City Roundup. Can't believe this Texas girl had to go all the way to Nebraska to see her first ever Pro-Rodeo. It was really exciting. Caed loved it! He kept calling it the "bull-game" or the "radio." ha! This morning after his dressing change we decided to hit the zoo again. The rest of the week is supposed to get cooler, so we thought we ought to do something fun outdoors today. (dressing change went really well! They are using a new type of dressing, and it came off super quick....literally less than a minute! Of course the actual cleaning part was still the same. But, at least the "worst part" was fast.)

Got a call from Brandi today. Caed's stool sample came back. The c-diff is still showing up positive. Please pray the medicine will begin working soon!!!!!!! Dr. Mercer doesn't want to change anything as of now (tube feedings).


Rodeo





Didn't quite make it through the IMAX
movie this time




I have heard before that when you're away from home, you can experience different degrees of 'homesickness.' Sure, I miss it ALL THE TIME, but some times are definitely worse than others. I am experiencing one of those today. Just been very sad......

As we walked all over the zoo today, I couldn't help seeing the hundred strollers that passed us by. I saw moms pushing their babies/toddlers and the older kids following closely by. Every time I see a baby about Caleb's age, my stomach gets butterflies and a lump whells up in my throat. It's absolutely excruciating!! I just want to throw my hands up and say, "I quit!.....I cannot do this anymore!" Any strength I had, has been sucked out of me these last 7 months. I just don't know how much longer I can go on.

I have been reminded of a recent sermon from Bobby (FBC Lubbock). It hit me so hard a month or more ago when I heard it. His main point was "As believers, we will always have 'the song' in our hearts, but there will be times it is not on our lips......and it's ok." This describes me perfectly right now. I know who my strength is.....I know He is using this to make us stronger and more like Him.....I know He has great plans for us......BUT, right now, I don't feel like singing.

Dear God, help me! You know my heart and You know the things I am struggling with most! Calm my spirit. Remind me of the endless blessings You have lavished on me. Help me to truly know what it means to 'persevere' and I ask for strength in doing so. I am tired..............

Wed. 9/24 - update

We had a very relaxing, peaceful day today. We never once left the hospital....a 1st! We did venture out of our room a few times, but just for short little walks down to the little convenience store or cafeteria.

I wasn't feeling very well yesterday and last night, so I decided we needed to just "take it easy" today. ( I feel much better by the way.....) This was my cleaning day. I got caught up on all laundry and tried to clean our little "house" a bit too. We do have housecleaning that comes everyday, but I didn't ask for it the past few days. So, I decided to do it myself. It was definitely a good feeling. A clean home is a clean home even if yours is only 500 sq. feet!

Caed drank his ORS mix pretty well today. I tasted it, and ......whew!..........very salty!!! But Caed seems to think it's just great. We never allowed him to drink lemonade the past 8 mos., so the fact that he can now.....I guess he's pretty excited. His appetite however has not been very good today. Has eaten hardly anything. Not sure if it has anything to do with the ORS drink or what? (he's supposed to drink 1 1/2 liters of it every day)

We're going to try to get another early bedtime again tonight. He'll have a stool sample and also lab draws in the morning.

Thank you SO much Ms. Tina for the pkg. of goodies!! What fun we're going to have!!!!!!!!!!!!!!
We love you very, very much!!



Tina, he wanted to walk around the
hospital this afternoon with his new
glasses.......thanks SO much!!!!!!!! ha!



had a headache after wearing them!!

Tues. 9/23 - update

God always knows just exactly when we need encouragement the most, and He definitely provided some for me today!

First of all.....I was expecting a package from Todd today, and when I went down to get it, wow!.....what a surprise to get so many cards! THANK YOU ALL SO MUCH! You probably had no idea that I have always been a "letter person." Ever since we moved to Edna 7 yrs. ago, mail time has always become my favorite time of the day. I LOVE to get mail.....(not bills), but the fun stuff. Hearing from you all was definitely the highlight of my day! Thank you again!!!!!

Next, our clinic appt. went very well this morning. I will summarize it for you:

1) They are not 100% sure how much sm. bowel he has left. Dr. Mercer said measuring with the scope is not very accurate. However, in Caed's situation, knowing the exact number is not necessary. Whether it's 40 - 50 - 70 cm or more..........the main thing they are focusing on is not the length but rather how well it is working.

2) There is NO bacterial overgrowth in the small intestine!! This is great news!!!! The C-diff is coming from the colon.

3) This week we will:
-keep the tube feeds the same (no change in concentration or rate) Want to give the bowel a break and try to focus on the c-diff.
-recheck c-diff on Thurs. (stool sample)
-add some extra zinc (this level was a little low)

4) Begin ORS Drink Therapy (oral rehydration salt) This will help absorb some of the water, and hopefully lessen the number of watery stools. They said it is pretty "salty" tasting, but because he is missing his ileum (which absorbs some of the salts in your body), he actually might 'crave' it. We can mix it with sugar free Kool-aid or Crystal Light, so it should be tolerable. Caed picked the lemonade flavor and has been drinking it just fine.

5) They feel we can hopefully control the number of stools more by oral food than with the tube feedings. Because of the c-diff, they want us to completely cut out ALL fiber, sugar, and water! (absolutely zero fruit!) Caed drinks solely water, so we are praying he can transition to the ORS drink without any problems. Overall, the Small Bowel Syndrome diet is not too bad. I think I've said before that it needs to primarily consist of Protein, Complex Carbs, & polyunsaturated fats. (meat/potatoes) They want him on 'white' bread, rolls, rice, etc.... No whole grains. And limit dairy. (or use lactose free milk) Cookies, candy, cakes, ice cream, etc....will need to disappear. I think I will need to borrow my grandmother's Diabetic cook-books to get some recipes for low sugar or 'no sugar' desserts, etc... Tuesdays seem to be our grocery store days (after we leave clinic). Since they made even more changes this week in his diet, we needed to go get some more things. He has been fine with the snack choices they have given. No complaints whatsoever! The hardest part of implementing the diet is the fact that I am living out of a 'hotel room' with a microwave and mini frig. Carol and Cordell let me borrow an extra toaster they had, so that will help too. Eating out all the time gets OLD really quick. Today we just ate soley from our room, but most days we will grab something at least one meal / day.

6) Overall, they feel that he is doing very well. He weighed an even 35 lbs. today. Basically maintained from last week (which is good considering the c-diff). Just wanting him to start gaining!

The main prayer request right now will be getting rid of the c-diff. Already today he has had 10 watery stools (and we still have 3 1/2 hrs. to go in the day)!

Today has been a fairly relaxing day for us. It's been a little rainy here, so we've mainly stayed inside. I have struggled with allergies pretty bad, so I've felt kind of crummy. Probably will have an early bedtime tonight.

Reagan had an exciting day today. She has started "Tuesday school." It is made up of other homeschool kids, and primarily those who use Classical Christian Education. It is from 9-3 and they do Art, P.E., Music, Geography, Latin, and Science. She had a great time!! Thank you Lesli for thinking of her!

Thank you all again for the cards, etc.... It truly brightened my day and made me feel not quite so far away! The Lord definitely used you to bless me today!!!!

**Thank you SO VERY much Coach Ford! Caed loved it! Thank you from the bottom of our hearts. What a special gift!!!!

Mon. 9/22 - update

Had another busy day. Caed woke up fine this morning, ate a big breakfast of sausage and eggs (thanks to Jimmy Dean frozen breakfasts!), but then after about an hour he was out again........ Finally I was able to get him up around 10:45. I didn't call Brandi because we had an appt. to get blood drawn at 11:00. I figured if the CO2 was low again she would call me. Never heard from her the whole day. ???

After lunch we drove out to Bellevue to Carol and Cordell's house. Carol was going to take Caed and I to Fontenelle Forest. There is a board walk path through the forest right beside the Missouri River (where Lewis and Clark explored). It was very pretty. Caed had a fun time throwing acorns and other various nuts/fruits that fell along the path. Then, we drove over closer to the river and Caed again had a good time throwing rocks. (interesting to me....on the opposite side of the river is Iowa!) We then let Caed play for awhile at the park until Carol and I were worn out. ha! Then, we went back to their house for "homemade hamburgers." I say 'homemade' because all the hamburgers Caed and I have been eating have been fast food. There IS a difference! They were very good Cordell! Thank you both again for taking us in. I know you will become our "lifelong" friends.









When we finally got back to the hospital this evening, we got a message from the front desk that we had a package. I had asked my mom to box up some of Caed's toys..............then, when we have to leave, I will mail them back. Don't have the room in any suitcase. Anyway, Caed was SO excited! You would have thought it was Christmas here. At first he said, "Oh look Mommy! Now I have 2 of these!" He thought they had sent him all new toys! He has had fun though having more things to play with. We had a few things here, but this should really keep him busy. Thank you Reagan for picking out the ones you knew he would especially like!

Clinic appt. in the morning. I always look forward to Tuesdays. We have been able to spend close to 2 hrs. with the drs. at these appts.!!


talking to Reagan on the phone and
thanking her for his "presents."

Simple (but profound) conversations

This was a conversation Caed and I had yesterday as we were driving:

Caed - Do all people get sick?

Mommy - yes....everyone gets sick. It's not just kids or old people, but everybody in the whole world.

Caed - So, if someone hurts his feet, will he have to go to the hospital?

Mommy - yes

Caed - If a building falls on someone's legs, will he go to the hospital?

Mommy - yes

Caed - If someone was at Joyland, and the screw wasn't screwed very tight and he hurt his arms?

Mommy - yes

Caed - But it's really God who heals them, right.

Mommy - Yes! God uses the drs. and hospitals and medicines, but it really is HIM who makes people all better.

Caed - So......is it really God who changes my dressing?




I held it in, and didn't laugh out loud, but the innocent comment sure put a smile on my face. And, as the conversation quickly changed like a 5 yr. old's attention span, I continued to think about that comment the rest of the night. Yes, even for those "dreaded weekly dressing changes" HE IS HERE!! He's not sitting beside Caed on the couch or bed holding his hand like I am. HE is the One holding Caed in His lap with his big, loving, tender arms wrapped around him whispering in his ear, "It's ok...I'm right here...Daddy's got you!"

For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by Him we cry, "Abba, Father." The Spirit Himself testifies with our spirit that we are God's children. Now if we are children, then we are heirs - heirs of God and co-heirs with Christ, if indeed we share in the sufferings in order that we may also share in His glory.
(Romans 8:15-17)

At least one answer...

For Your eye is on the sparrow, so I know You are watching me......................!






We were getting ready for church this morning when I got a call from our IRP coordinator, Brandi. She said, "Your son has C-diff." (diarrheal disease) Maybe that explains the 8-10 times a day he's in the restroom.

In a nut shell......C-diff (c-difficile) is a bacteria that grows everywhere (but especially hospitals). It doesn't create problems until it grows in abnormally lg. numbers in the intestinal tract. One main symptom is persistent diarrhea. That we have!

She wants him to get on Flagyl (which he's been on many times before) and also Culturelle (this is a supplement containing the probiotic lactobacillus). This is "good bacteria" that should help fend off the bad. She also told me to make sure I am washing my hands like crazy....and not just the hand sanitizer stuff (doesn't work with this).

I am having such mixed emotions right now. I am SO glad this has been officially diagnosed, and we are now trying to treat it. However, I guess there's that other side that just feels....if it's not one thing, it's another. I know there is so much going on in Caed's body. So much that is obviously not seen from the outside. Like we've said SO many times before, on the outside.....he's a normal little 5 yr. old boy (who just happens to wear a big backpack and goes to the restroom a lot!) Left untreated, so many of these things going on with him, could be very serious. I'm just happy we have found this one out now.

My sister-n-law, Megan (from SC) told me about a blog she came across. Many of you know Stan and Megan adopted a little girl from China 2 yrs. ago (wow!...can't believe it's been that long!), and so this story especially touches their hearts. It is about an American couple who traveled to China to adopt their daughter. When the day came to get her, they were told she was in the hospital (in serious condition). I will let you read the words from this precious mother about their experience (www.roomforatleastonemore.blogspot.com), and make sure you have a box of Kleenex close by. ha! It has touched me greatly. In many ways it puts me right back to when I was the mother watching my child suffer in the hospital and not being able to do anything about it. It is hard going back there! But.....like Megan and I have talked about, it also has made me so grateful of the care Caed has and continues to get. We are SO blessed to live in the US with such incredible medical facilities and drs. Even though my day is not going as planned (to church), but instead to go get Caed started on these new meds, I am thankful for the call I received this morning. That they are on top of it (on Sunday morning none the less!) and have provided for us 'at least one more answer'................................

Please pray that these new meds will begin working. Brandi said if the Flagyl doesn't, they have some other options. It's one thing to get a diagnosis, but altogether another for the treatment to begin working.

Oh God! My heart has just been given yet another burden to carry. Please calm my spirit, and give me a peace through this seemingly "never-ending" storm. Just like I've been reading.....YOU are the God that moves mountains! I know Caed's situation is not out of Your reach....in fact YOU are the One holding it and him! You are the One holding me! You are the One holding Todd! You are the One holding Reagan and Caleb! You are One holding our families and friends as they walk through this and help us through it! YOU are the same God that is holding this precious little girl who lives across the world! YOU TRULY HAVE THE WHOLE WORLD IN THE PALMS OF YOUR HANDS!!! Thank you for loving us. For caring for even the tiniest details in our lives. Help us all to remember that there is NO MOUNTAIN high enough or big enough that YOU cannot move!

Help us to trust in YOUR ways................................

Praise be to the Lord, to God our Savior, who daily bears our burdens.
(Psalm 68:19)

Sat. 9/20 - update

This morning began good. Caed woke up fine on his own. The Free's (Kensley's family) called and we met them at the park. Caed had lots of fun. Since he knew Kaydee (10) and Cooper (6) and had played with them before, it was really a fun day for him. J., and the kids will fly back home (Lubbock) in the morning. It was sure good to see some familiar faces.

Next, we headed out to the zoo. It was really crowded, but we still had fun. Since we had been before, we tried to hit the exhibits we didn't get to the first time. Still though.....we didn't cover everything! After an hour wait, we finally got on the zoo train. Caed had really been wanting to do this. We had a fun - filled day, but now we are very tired.

I talked with my mom today. Sounds like the kids are doing great! Caleb is officially crawling now. Kinda sad about that, but there's nothing I can do about it. I'm just SO ready to get my hands on him. I know he will seem so big to me when I see him. She also said Reagan is doing well and being such a big help! She has been able to catch up with all the school work she missed. We are VERY proud of her! Todd is going to try to get to Lubb. to see them soon. Not sure when/if he can come back here.

I'm going to make this short tonight. We had a full day, and I'm hoping for an early bedtime. We have been invited out to Bellevue in the morning to go to church with Carol and Cordell. (and also spend the afternoon)







the Zoo Train



Caed on the train

Sat. zoo pics

these "mohawk monkeys" are Caed's favorite
animal in the zoo



this "tiny creature" came literally inches from Caed as
we were walking through the rain forest. Needless to
say, he was a little scared! (Mama was a tad bit
spooked by it too.....ha!)



rainforest



rainforest

Fri. 9/19 - update

We had an eventful day. Caed didn't wake up again. I called our IRP coordinator (Brandi) around 11:00, and she wanted us to get down to the lab and draw some blood. About an hour later, Caed began coming out of it. We went for the lab draw, and sure enough it showed his CO2 level low. Brandi was going to talk further with Dr. Mercer, but felt it could be a number of things: he could just have some kind of "intestinal bug", or we were advancing too fast with his treatment (rehab with his formula). They wanted me to stop all feeds for a few hours and give his gut a break. Then, I started his pump back at 45 cc (it was 82 when all this happened). I increased it by 5 every hour. Now, he is fixing to go to bed and it will be at 75. They want him to stay there through the weekend. They also increased his Sodium Bicarb intake to 30cc. / 3x daily. (the purpose of this is replacement therapy.....because of all his stools each day, he is losing most of what is in his body naturally). I also had to take a stool sample down to Diagnostics after the lab draw. Brandi said the scope Tues. did reveal bacterial overgrowth in his intestines (which we knew anyway), but wasn't sure the details on it yet. She did comment that it was less that what she had expected, so that's good. He will need to get started on bacterial overgrowth therapy (antibiotics) for a very long time. (she said with some kids it's years and years...even life). I'm sure we will find out a lot more at next week's clinic appt.

Caed's dressing change actually turned out pretty good today! Thank you for praying specifically for that. I asked the nurse again about the adhesive removers, and she found some in her bag. It only took about 10 minutes (compared to 30 last week!).

After his nurse left, Caed wanted to go back to the park. We stayed there several hours. It was very busy and there were lots of kids for him to play with. He even made a comment at one point and said, "This is the best day ever!" ha! I have really begun noticing how Caed reacts to the other kids. Most of the time he begins the conversation with "You have to be easy with me because I'm sick....." The kids just look at him, and of course most reply, "No you're not!" It was funny yesterday as I listened to him TRY to sum up the last 7 months and all he has been through to 2 little girls. You should have seen the look on their faces! I know these other little children don't have a clue what he's talking about, but it's definitely good for him to be able to verbalize it. I have also noticed though how he just gets in there and plays. From my viewpoint and I'm sure all the other parents 'Caed is different.' He looks normal, but has a big backpack strapped to him and a tube hanging out the side. I love the innocence of children. Caed does not walk around shy or embarrassed b/c he's different. I don't think he even sees it. Thank you God for that!

We went to eat supper and then walked around the mall until it closed. Our plan is to go to the zoo tomorrow. It's a free day.....no appts, no labs, no nurses. Hopefully though he will have a good night and wake up in the morning.

Also a praise today! Got some stuff finalized (finally) with our social worker. (it's been a mess!)



Eating breakfast at 11:45!
(cereal....easy on the milk)



Here is a glimpse of some of Caed's daily supplies:


the nightstand is officially FULL!
(as well as my parents' pantry back in Idalou)


Here is our "formula mixing" station



pumps and bags

Thurs. 9/18 - update

Just the two of us.............................



Flat lands and corn fields...........that was the picture I had in my head when I heard the word 'Nebraska'. I've quickly found out the truth. It is absolutely beautiful. Green everywhere, gorgeous trees and rolling hills. I took a drive this afternoon and was amazed by God's beautiful handiwork. (it doesn't take much to impress this West Texas girl) Today was exactly what I needed.

...our hearts are like a photographer's film - the longer exposed, the deeper the impression. For God's vision to be impressed on our hearts, we must sit in stillness at His feet for quite a long time. Remember, the troubled surface of a lake will not reflect an image. Yes, our lives must be quiet and peaceful if we expect to see God. (Steams in the Desert)

That's exactly what I was able to do much of today. Sit in stillness and listen to God. This morning while Caed was getting his blood drawn, the nurse told us about a park near the University. It was a beautiful park.....huge shade trees and GREEN everywhere. Plus, it was about 80 degrees. As Caed played, I sat. My heart has been "busy and anxious" the last 2 weeks particularly. It's been awhile since I was able to do exactly what I experienced today. Just sit and be still. The future is no more clear to me than what it was yesterday. I did not have any life-altering revelations from God. But.....He calmed my heart, gave me such a peaceful, quiet afternoon just watching my little boy play! He reminded me to take joy in His daily mercies. Sure, my family is spread out in 3 places, and Caed is still sick. However, what tremendous blessings He has poured out over us. Instead of worrying about an uncertain future, I was reminded to live in the here and now. To make the most of TODAY!!! To get barefoot with Caed and sit and dig tunnels in the sand. To climb the monkeybars, slide down the twisty slides and swing! Today I played with and enjoyed my little boy!

When we left the park, I was fully intending to head back to the hospital. I had groceries in the back! But as soon as I pulled onto the street, I noticed Caed was asleep. I decided to just drive. I knew if we went back "home," it would be a long night just the two of us cooped up in that room. So, I drove and drove and enjoyed the beautiful yellow rolling cornfields. Without even realizing it, I was headed to Lincoln. (only 30 minutes away) So, I thought, sure.....let's go see Lincoln! I drove through the University of Nebraska campus. Very different from Tech! To me it looked like a college campus smack in the heart of downtown Austin. It was a neat atmosphere, just very, very different than what I am used to. Then....we drove over a few blocks and saw the state capitol. Pretty cool. There were several neat places that we might go back to one day. I would LOVE to go to a UN game, but.....probably won't happen. (wish Tech played them here, but it's in Lubbock this year) Caed slept the entire trip! I guess I shouldn't be expecting an early bedtime tonight.

Tomorrow is the dreaded dressing change. Please pray for this! I can assure you if it's like last week, it will be very tough. (the nurse did not use adhesive removers....ugghh!)




Caed played with another little boy
named Cade today! It was sure good
for him to finally get to play with
other kids.



He was pretending to be "Bear Grylls"
starting a fire (from Man vs. Wild -
one of Caed's favorite shows)



Univ. of NE football stadium



Capitol Building

Wed. 9/17 - update

Our first day "alone." It went well, but I can already tell you this is going to be a long month for Caed.

We woke up this morning at 5, loaded the suitcases and kids in the car, and off we headed to the airport. Reagan was pretty upset when I left her. She cried and cried. Todd said she continued for about 30-45 minutes. Finally once they boarded the plane, she was "all better." I think she slept most of the flight to Dallas. Our friend Kendall, who works for Southwest, met them there at Love Field. She had some goodies there for Reagan, and then off the 2 of them flew to Lubbock. We CANNOT begin to thank her enough for what she did for us today. You talk about doing someone a favor.......wow! It sure made it easier on Todd not having to fly to Dallas twice (and then get ready for Wed. night youth!). Thank you SO VERY MUCH Kendall! You were our God-send today!!!

I had an appt. with our dietitian this morning to go over in detail Caed's diet. It was very good, and I was pretty shocked at what they are allowing him to eat. She gave me 2 big packets of material to read over. In a nut shell.....they want him staying away from sugar (also the natural kind found in fruits), and high fat foods. She stressed again about the meat/potatoes. Also because of the portion of bowel Caed is missing (ileum), she said he may crave salty foods, and that was ok. (even Doritos, etc.....just in moderation) If he wants fruit, he needs to have it with a meal (protein), not just by itself. I got TONS of good info today. Again, too much to relay on the blog. I'm sure it'll take a while for me to really understand it all, and get the knack to his diet. However, I was encouraged because it doesn't seem too different from what he is already doing (give or take a few things).

One interesting tidbit.....normal children (5+) and adults have approximately 500 cm of small bowel (~15 feet) and 200 cm of large (~6 feet). After the scope yesterday, the dr. said he measured 30 cm. from top, and 30 cm. from bottom, so ......Caed has around 60! (small bowel) He did lose the value that connects sm. and large intestines (ileum) and about 30% of colon. The main part that Caed lost (jejunum) is the site that absorbs the nutrients from food. That is why malabsorption has continued to be such an issue with him. They are also really watching his hydration levels. Because he is still stooling quite a bit every day, that's why his CO2 level was dropping like it was the last month or so. (not waking up) That in turn is the reason for having him on IV fluids each night. Right now, this is the main concern they have with Caed (hydration). (obviously there are many others, but this is what's in the spotlight currently)

Tonight Caed has started his "new feedings." The concentration of the formula is higher and we have also added normal saline to the mix. Hopefully the night will go well and he will tolerate this change fine! (up to 80 cc. now)

The remainder of our day was fairly uneventful. We went to Target and then just stayed here in our room the rest of the night. He did want to go for a walk, so we got out a few hrs. ago and walked through the halls of the hospital. (sure is quiet this time of night) We also played a little soccer in our room, of course you can guess who won. He and Reagan talked at least 3-4 times today. He sure does miss her. He has made many comments to me about us going home in 4 days........! Not sure where he got that number, but for now I just say, "oh, I think it might be closer to 10." He really doesn't have a concept for time, and I think it would be pretty overwhelming if I told him "the truth." However, even I don't know for sure how long it will be. I'm really thinking it will for sure be through the whole month of Sept though.

Well, I really need to get to bed. I think I only got about 4 hrs. of sleep last night. I am very tired!! Tomorrow all we really have planned is a lab draw. We might try to go find the Children's Museum or a park or something. The weather has been absolutely beautiful this week.




5:45 am! This was the best way I
could think to get Caed down to the car! ha!



passing the time with some computer
games. (thanks Leanne!)



Our "home"
(Lied Transplant Center)



eating supper on the windowsill

Tues. 9/16 - update

We made it through today! It started out early going to the IRP clinic. We were able to spend an hour and a half just talking with the team of drs. It was wonderful!! We asked lots of questions and they were patient and very clear with us. They said his labs this week looked excellent. They were so pleased with how he looked (much different than last week when they saw him). We will continue with another week of IV fluids at night and increase his tube feeding (consistency) and also rate. They want us to be back up to 90 cc. by next Tues. I will have an appt. with the dietitian tomorrow morning and we will go over in more detail what they want his diet to look like. Right now they are basically wanting us to stick with meat & potatoes. (and stay away from anything with lactose or fructose (fruits....which he loves). I will find out more tomorrow. I couldn't possibly relay ALL they talked to us about....it was a lot! But, we left there feeling really good and knowing Caed is in great hands. "Short gut" is their game!!!!

We then left the clinic (in the hospital) and went to Admissions and Endoscopy. After 2 hrs. of doing lots of waiting....they were finally ready for his procedure. Caed was doing well until we walked back into the endoscopy holding area. Even though he had never been to this particular place, he knew exactly what it was. He began whimpering a little, but overall was VERY brave! They did allow me to ride up on the gurney with him and I was right there talking /playing with him right up to when he fell off to sleep. The GI dr. said they would be doing an upper and lower endoscopy, colonoscopy, and then also take multiple biopsies of his sm. bowel/colon and a sample of the sm. bowel fluid. (mainly looking for bacterial overgrowth, I believe) Those results will be back in a couple of days. He told us this procedure should take about an hour. Well....about an hour and 1/2 later.....he finally was finished. I recognized the look on the GI dr.'s face (Dr. Higgins, I believe you had the same one not long ago....ha!). He said, "Why didn't you warn me about his abnormal anatomy?" (with a laugh) He told us he does this procedure all the time, but never had so much trouble getting the scope through. (primarily due to his abnormal stomach). Anyway, he calculated Caed had at least 30 cm of bowel from the top...and 30 cm from the bottom, but couldn't get all the way through. So, that's at least 60cm!!! He said everything looked really good inside. He was very pleased. Now, we will just wait for the results from the biopsies. Caed did not do so well waking up. This is how he has done every time when coming out of anesthesia. He was very angry, cried alot, and even did a bit of growling when someone came near him (ha!). It was hard, of course, but only lasted 10-15 minutes. He fell back asleep in my arms. In the meantime.....we found out there was a vacancy in the Leid and we could move in today. So, after Caed's procedure was done, Todd took Reagan back to the hotel and they packed and loaded everything again. After about an hour, they transported Caed and I up to our room.

It is very nice, and we are really pleased. It will be perfect for us! We are on the 6th floor. Just to give you an idea: the IRP clinic is in the same building - 2nd floor. The Leid is connected to the hospital, so when we go for labs, need to see our social worker, etc...we're HERE! Just hop on the elevator. There is a little "convenience store" also down the floor from the Leid and it is open about 20 hrs/ day. Laundry is right across the hall from our room. (thank you my dear sweet friends...the roll of quarters is definitely coming in handy!!!) It's kind of a weird feeling. When you are in the hallway or in the room, it all looks like a hotel room. BUT...yet you are in a hospital! I keep having the strange feeling Robert (one of our nurses at Covenant) will be coming in our room at all hours of the night!! ha! I took some pictures to give you a better idea of where we are going to be "living" for the next few weeks.

I forgot to mention a big part of our day. While we were waiting for Caed's procedure, Carol walks up!! She was such a God-send today!! Thank you so much!! Let's just say God answered our prayers as far as Reagan was concerned. Carol sat with her in the waiting room the whole time so Todd and I could be with Caed!! They played games and passed the time with ease. Just the look on Reagan's face told me she really loves Carol! Thank you for stepping in and being her "fill-in Grandma" today! You have NO idea how much you helped out and really blessed us. This was not an easy day for us, and yet it was so comforting just having someone else to talk to while we waited. Thank you from the bottom of our hearts!!

The rest of the day went ok. Caed had a bad headache and also some stomach pains after the procedure. They put a bag on the end of his G-tube and allowed it to drain for several hours. (fluids and also gas) This really helped! Finally around 6:30 or so, he began "coming out" of it, and acting like his normal self. We went out to eat and he did just great. Every once in awhile he would complain his tummy was hurting, but it never lasted very long.

Everyone is now in bed. We have to get up VERY early (5:00am) to get Todd and Reagan off to the airport. Pray all goes well there. We will sure miss them!! Especially Caed......I know it's going to be really different now with his "best buddy" gone. Pray for Mommy to develop some creativity (quick!).

Thank you all again for your prayers today. It was a big day and parts of it were very difficult, but as I sit here and think back over it all.....I can't help but see how God was in every single detail. He answered so many of my concerns, and I know that He isn't going anywhere now. We will make it through this!!!!!!!!!!!!


Caed beginning to feel better in his
"new" bed



the little sitting room (first thing you
see when you walk in)



other side of sitting room/kitchen (we do have a
microwave and frig! what else do you need??)



Bedroom (with a great view by the way!)



bedroom (I'm loving all the storage! there is tons!
finally I can officially stop living out of my suitcase)

*there is also a good size bathroom


Our New Address:
Lori Hollingsworth/6719
Leid Transplant Center - Nebraska House
987600 Nebraska Medical Center
Omaha, NE 68198-7600

Mon. 9/15 - update

Back and forth....that about sums up our day. We had only reserved this hotel for a week b/c we thought by now the Leid (transplant center) would all be settled. So, we packed everything up (a lot of stuff!) and Todd loaded it up in the van. We drove to the hospital for Caed's lab draw and went over to the Leid to ask about the availability. They said they were completely full, but gave us the info on a hotel we could stay at while we waited. Guess what? It was the exact same hotel we've been at, and we even got the same exact room! ha! So, after all that loading....we turned around about 2 hrs. later and unloaded it all back into the same place. They told us the Leid gets pretty full during the weekends, but usually clears out through the week. So, hopefully we'll get a room over there soon. (we are however getting the "hospital rate" here at this hotel which is pretty cheap). Thank you God for that!

The rest of the day was spent running some errands, making lots of calls (as usual), and then we took the kids back out to the zoo to see one of their IMAX movies. It was one about the ocean. They loved it!

Caed has had to be on a liquid diet today because of the scope tomorrow. Not an easy thing with a 5 yr. old to begin with , but when you do not have a kitchen and are eating out EVERY meal....it's a whole other dilemma. We bought some of those "Soup at Hand" cans of chicken noodle soup. The restaurant here at the hotel knows all about Caed and our story and have been overly gracious this whole week. They had no problem heating the soup up for us and putting it in a bowl for him. We also had some jello and applesauce for him too. He sure has seemed hungry though. But, he's being a trooper and knows that the drs. just don't want him eating very much today.

We will go for our weekly clinic appt. in the morning at 10:00. This is where we sit down with the team of drs. and talk extensively about Caed, his progress, and "the plan." So far this week their main goal has been to get him "stabilized." His CO2 level has been great ever since he has had a bolus every day. You can sure tell a difference in him! We also know that the scope tomorrow is going to be a big day. Hopefully the drs. will be able to get a lot of info from it, and then begin formulating a plan. Please pray for the procedure itself. I don't know how Caed is going to react. In Lubbock, we figured out the best way to get through it. Caed would sit in my lap in a wheelchair and they would wheel both of us into the endoscopy room. Then, while he was still in my lap, they would insert the anesthesia into his line. He would literally "fall asleep" in my arms. Hard for Mommy.....easier for Caed! Please pray they allow us to do this. It is very difficult when he is being wheeled away as he is crying for us to "help" him.

The majority of our day will be spent at the hospital tomorrow. Pray for Reagan as this will be the first time she is there while he's having a procedure done. I know she will be worried. She will be "seeing" a lot tomorrow. Pray the Lord guards her eyes, ears, and mind.

Tomorrow will be our last day together. Todd and Reagan will fly out very early Wed. morning. It will be a hard day all around (for Caed's procedure and also Todd and Reagan preparing to leave). We will definitely need prayer for this as well.

Talked to my parents tonight. Caleb now has 2 new teeth on top! Can't wait to see him..........

Thank you all for your continued prayers. I just thought things were difficult this week. I think they're going to get much harder now. However, I know the Lord is My Provider!!



Styling the 3D glasses!!

Sun. 9/14 - update

Oops! I guess we're not in Texas anymore! We got up this morning and got ready for church. Stepped outside and.............a cold 55 degree wind hit us smack in the face! Sure, we're used to cold weather, but not when my daughter is dressed in a little sundress! I felt like such a good mom. (Todd loved it....naturally!) We went to Dundee Presbyterian Church this morning. This was the church we were invited to by a guy Todd met in the mall. (we have not seen any Baptist churches yet.....I'm sure they are here, just not on every street corner like in Tx.) It was very good, and the pastor and another gentleman came over and made sure they put Caed on their prayer list. They also invited Caed and I to all of their mid-week activities. We went to the early service (9:00), so we were out by 10! Kinda a strange feeling. We went for breakfast afterwards, and the kids were very shocked that we were letting them eat donuts for "lunch!!" This afternoon was pretty restful. Todd took Reagan and Caed back down to the pool, and I took a long nap!! It was very nice and definitely needed!

We have one more night here at the hotel. It's a confusing story, but not sure we will get into the transplant suites tomorrow. You know how stuff like this goes.....just part of it, I guess. We were supposed to have received a fax here at the hotel from our social worker at the hospital (but have yet to see it now 2 days later, and no one is in the office this weekend). I will call first thing in the morning, and we will be heading back to the hospital for Caed's daily labs. (hopefully we can talk to someone there!)

The rest of our day went well. Caed's tube feedings are up to 70cc. tonight. (we increase by 5 ea. day) The IV fluids really seem to be helping keep his CO2 level up / normal. You can just tell he feels better. We will go in for labs in the morning, and then meet with the IRP team on Tues. morning. (his scope is scheduled for 1:30). Todd and Reagan are planning on flying out Wed. morning. Todd really wanted to be here for Caed's procedure on Tues. (he will be under full anesthesia) They will fly to Dallas and then we have a friend who works for Southwest (lives in Celina), and she will meet them at the airport and then fly with Reagan back to Lubbock. Thank you SO MUCH Kendall!! This is helping us out tremendously!!

Pray all goes well and we are allowed to transfer over to the suites tomorrow sometime!! It would really help if we were already over there and settled before Todd leaves.

HAPPY HAPPY BIRTHDAY HAYLEE!!!!! WE LOVE YOU SO MUCH!


Is it summer or fall? (I guess that all depends on
where you live) In Edna, Reagan could continue
wearing this dress at least til Thanksgiving!! ha!

Sat. 9/13 - update

I struggled again today. Not sure why exactly. Just feeling somewhat overwhelmed. It's also very difficult "starting over" with all of Caed's care. I can't tell you how many people from the hospital or Option Care or social workers, etc....have called or I have talked to in person that I have had to "tell all!" It just gets hard telling it because with each question comes a Mommy's heart reliving it all. I spent about 30 minutes just this morning with someone from the hospital needing Caed's "medical history." ughhhh! I have to admit I got a little annoyed with some of the questions: (even though I know she was just doing her job...and for that I am thankful) "How did Caed's reflux go away?" Well....I'm not sure. Was it the medicine he was on for all those months or did his stomach just begin healing? "What all medications has he been on?" I replied, "how much time do you have?" I honestly think I'm just tired....after the past 7 months.....and ALL Caed and my family have been through....missing my Caleb....and staring an unknown future right in the face. I am very down right now. I know where my help comes from.....I know God will not give me more than I can handle....I know He has Caed in the palm of His hands.....I know He has an incredible future in store for my family.....I know sweet Caleb is in great hands.......BUT, I am tired and weary!!!!! Like I said yesterday, here we are....appearing as a family on vacation. Yes, we are doing some fun things, but I am struggling to enjoy them, to find any good in them. I know I am wrong. I know I have SO much to be thankful for. I'm just tired and worn out. Pray for the Lord to RENEW my strength and joy!!!! He has done so many many times for me these past 7 months, I know He is faithful still.

We had a pretty relaxing day today. We were able to sleep in a bit, which was very nice. We didn't leave our room until almost 3:00. After we ate lunch, we let the kids go back to the water park. We stayed there until about 8:30 and now we currently are getting to watch the Tech game! What a surprise when we found that on tv!! We see all the water is gone from the field. Also got word from some friends in Edna. They were spared with Ike. Praise God!

We plan on going to church in the morning. Todd began talking with a guy in the mall and he works with the youth in his church. He invited us. Cordell and Carol have also extended the invitation to theirs as well. Not sure what we'll do in the morning. I'm sure since we'll be here several Sundays, we can do both.



Got milk?

Fri. 9/12 - update

Our day was very similar to the previous ones. We went to the hospital first thing this morning. Caed's labs were better again today. He will get a break (from labs) the next 2 days. Then, we'll start back up Mon. morning.

Caed had to have his dreaded dressing change today. A home health nurse came to the hotel to do it. She was very sweet to him, but I got a little emotional during it. Not sure why exactly. I guess part of it was b/c everything seems to be different here. The things we have been used to doing (medically) are done differently. May not seem like a big deal, but for Caed.....his dressing changes are always pretty traumatic. Since the middle of May he has developed trust for his HH nurse Laura (in Lubbock). There is a large amount of security in just "familiarity." This nurse today was nice, but just did it differently. There have also been some other changes with his central line. In Lubbock they use claves. Here, they like to use the "interlock system." Anyway, that basically means I have had to re-learn how to flush and hook his line up. Again, not a big deal.....but ALL these changes have been a little overwhelming to me. Just as I was getting confident with being his nurse, it changes. Please pray for me in this area. I know it will get easier the more I do it.

I have also been getting lots of calls everyday. I am getting overwhelmed with them too. So many different people and things to remember and do. (home health nurses, IRP nurses, social worker from hospital, insurance people, med delivery company........)

We did get word finally today that we can stay in the Leid Transplant Center (suites) for the duration of our stay. (this is located in the hospital) Haven't seen them, but heard they were nice. ??? That will probably be finalized Sun. or Mon., so we'll move over then.

It has been raining all day today again. I guess a lot of us are getting the wet weather. Lubbock is apparently flooding, which is very unusual. And...of course all our dear friends down in Edna are preparing for Hurricane Ike. Know we are praying for you all!!!!

Since the weather has been dreary today, we decided to let the kids go to the indoor water park located in the hotel. It is really neat, and they of course were SO excited! Caed seemed a little more reserved today in the water than he was yesterday. There were lots of waterfalls, etc...that he seemed to be a little timid of. However, since he can't get too wet, it actually made it easier for us having to watch him. He really seemed to enjoy just watching the other kids.

I personally had a hard day today. I can't really explain my feelings. Everything on the outside looks as though we are a family on vacation. Sure, we are getting to do some fun things. But....we are also having to make daily trips to the hospital and our hotel room is FILLED with medical supplies. Caed has to be hooked up to an IV and G-feeds everyday. As I sat tonight watching other families at the water park, I became very sad. I know there are probably things going on in their lives too, but on the outside everything looked so normal. The other children I saw did not have tubes going into their bodies like mine. They seemed so carefree. Instead of being thankful for the "fun" that MY family was having too, I found myself feeling sad and overwhelmed. Caed has made progress. Just the fact that he is HERE, in a swimsuit, and eating real food is a major deal. I don't need to forget. I think I am also just missing Caleb! It will be a week tomorrow. And the thought of many more to come....is sometimes too much for me to think about. I would ask for prayer for this as well.

Here are a few pictures from the water park. We might try to go back again tomorrow since we have a "free day" and it will more than likely be raining again.







On the lazy river