Day 3

We began today thoroughly expecting another 7 hr. (x ray) day. We even talked to Caed and reminded him of what it was like back in April. He didn't like the idea, but was being very cooperative. They injected the barium into his g-tube around 9:00, and within 45 MINUTES it was looking as though it was through the small bowel!! We were shocked! I just couldn't believe what was "supposed to take 7 hrs"......was almost done in under 1!!!

However, we soon fell back into our normal routine with an x-ray.....walk around hospital 15-30 minutes.....x-ray.....walk......and on and on. They felt like the barium had reached the colon, but weren't sure where the small and large connected. (remember Caed lost his illeum....the connecting part) They also were wanting to double check on the narrowing portion of bowel we saw back in April. Therefore.....we had to go another 3 hrs! It was ok though. We made the time go by fast and the radiology team was wonderful. Caed told them story after story after story. They patiently listened and really grew to love him. We don't know any results from today's test, but our IRP team will be in contact once we get back home.

Once they gave us the green light to leave, we headed over to the Children's Museum. Caed had lots of fun....and Mommy and Daddy desperately tried to keep up and stay awake. (we are exhausted) Our flight leaves Omaha at 6:15 in the morning, so we better get to bed at a decent hour tonight.

Again we want to say a special THANK YOU to 4 very generous people who helped make this trip possible for us. Wayne and Kendall.....for everything you do to get us from OMA to DAL (and back again!) You have NO idea what a HUGE blessing this is for our family. To Carol and Cordell (our NE family).....thank you for offering up one of your vehicles for us to use this week. Again....a HUGE blessing! Thank you also for your continued warm hospitality. You truly have become our family and we love you so very much! (Sunday lunch with all our NE friends was so fun! Just makes us smile thinking how God put you all into our lives) And lastly...thank you to everyone who prayed for us (particularly Caed-man) this week! We felt them and God showed His faithfulness once again!

only 4 hrs!!





waiting....waiting....waiting in between x rays (such beautiful fall colors here!)


getting some school work done......in between x rays


finally FREE to go to Children's Museum

Day 2.....

.....has been cut short! We had an awesome dr. visit, and they decided to cancel the scheduled scope this afternoon. HUGE praise!!! We never look forward to those since they have to put him under. They basically said, "....since he's doing SO well, we hate to put him through it (since there are always risks)." Our next steps are:

-gradually wean 1 hr./month off night feeds (until we get to around 4-5hrs.) Then, we will see how he is doing, and take him off TOTALLY for a few months before ultimately REMOVING THE G-TUBE!!!! (can't believe I'm typing those words.....thank you GOD!) This could happen possibly by summer!

-continue monthly labs

-get a longer g-tube

-next NE appt. scheduled for summer

We are thrilled with today's news. NO scope.....and an excellent review from drs!! The main test will be in the morning (small bowel series). The look at his colon yesterday was great! (no issues) However, tomorrow's test will be the biggie. They did tell us that even IF his sm. bowel shows dilated loops.....they will not consider the lengthening surgery right now. He is just doing TOO GOOD to mess with. "If it aint broke....don't fix it!" I am still nervous about tomorrow's testing because it does give a more accurate look at his bowel (and its abnormality). They kept reminding us that Caed had a healthy bowel for 4 yrs. (it is not diseased unlike the majority of short gut kids) Again....ANOTHER praise!

THANK YOU to everyone who has prayed for Caed and specifically for this trip!

GREAT is His faithfulness!

Day 1....down

This morning started off rough, but fortunately the day ended sweet.

First on the list was radiology (barium enema). Caed had never had one of these, so much of the crying was due to simple fear. He didn't understand what they were doing, nor whether to believe them when they said "it wouldn't hurt too bad." He has TOO many memories of times in which it DID hurt! I don't blame him for crying, but it made the procedure a little more difficult at first. Finally, he calmed down...and it went very quickly. One hour down in radiology is a breeze. (unlike the small bowel series set for Wed.) This picture was taken after it was over.....and all the tears were gone.

Next on the agenda was his routine monthly blood draw.....or so he thought. When we come to NE they want lots more blood to check vitamin levels, etc.... (things we don't normally do back at home). He did GREAT!.....until his little vein collapsed, and they had to then move on to arm #2 with a much bigger needle. This again was a little traumatic for him, but he handled it fine. That's when we began talking up the zoo!


Once we got back up to the room, he started hurting pretty badly. He sat on the potty and cried and cried. His face was so pale, and we knew he was worn out! He kept telling us his lower abdomen was hurting. I remember when he was in the hospital, every time they did a contrast study....he would have pretty bad cramping afterwards. Fortunately, the pain only lasted 20-30 minutes this time. He rested on his bed awhile, but soon was up and at 'em...and we could tell he was back to his old self. He is still one of the bravest little boys I know!!!


That was our cue to head off to the zoo! It was SUCH a beautiful day, and we were practically the only ones there. I have lots of great pictures from this afternoon, but it will have to wait until we get home. We are all exhausted.......and we still have 2 more days to go. (tomorrow we meet with his drs.)

Mrs. Smith's class.......we got LOTS of great pictures of bats and spiders (since you are studying them this month). Caed is excited to show them to you!

Thanks for the prayers........

Fall Blessings

While visiting our local pumpkin farm, this particular little sign stopped me right in my tracks. It was just a small reminder of the MANY MANY blessings that the Lord continues to lavish on me. (and not just during the "Fall, " but rather all year long!) They are everywhere....and abundant. Forgive me God for taking my eyes off YOU. Remind me daily of Your faithfulness....show me the little things in life that I take for granted. Help me to live a life that trusts You......that believes You.....and that enjoys YOU!!!!

YOU are GOOD!!!
















Todd, Caed, and I leave out for NE today. Caed will undergo lots of testing Mon - Wed. However, we hope to find some time to do a few of the things we enjoy most about NE. We anticipate good reports and further confirmation of God's continued healing power. I can't say THANK YOU enough for all the prayers and words of encouragement. The Lord used every last one to do just that. I love you ALL!!!!!!

Nana is here to watch Reagan and Caleb while we are gone. I know they will have lots of fun!

Blessings to you all...........................

Breaking out of the grip....

.....of FEAR

Several months ago I posted a comment saying "I was so ready to head back to Nebraska!" Todd has even mentioned the same sentiment. Omaha became our 2nd home during the fall last year, and I miss lots of things about it. (the beautiful fall foliage, our friends, the familiarity of faces at the hospital, and the anonymity of being somewhere in which NO ONE knows you.....probably sounds crazy!) I have SO many wonderful memories of UNMC. That is where Caed began making such tremendous progress. Because he was never really sick there in Omaha.... "those painful memories" are not associated with this hospital. Quite honestly....only good ones!

So why..........the past 2-3 weeks have I had a knot in my stomach just thinking about this trip? Why am I allowing a thousand "what-ifs" to flood my heart? I am scared to death of what they might find. Caed has been doing wonderful the last 6 months since we saw our drs. last! His monthly labs have been coming back with "no worries." God has done A-M-A-Z-I-N-G things in Caed's life the last 18 months! Most people who know what Caed went through, cannot believe he is the same little boy who was once SO very ill. He just looks and acts perfect!

But....the reality that things are not "perfect" in his little abdomen still haunt me. The other day I was casually googling "short bowel syndrome" which I find myself doing every now and then. I have no idea what really drew me to this particular link, but it was a video from Children's Boston. (who have the top short bowel transplant/rehab program in the nation) There is a particular surgery called the STEP procedure in which it actually lengthens the bowel. I began watching a "live" video of surgeons performing it. It was on a 19 yr. old male who was born with sbs....he spent 3 years in the hospital....and then did GREAT for many, many years. He was taken off all enteral feeding, and became a "normal" teenage guy who no one knew was ever ill. (sound familiar??) All of a sudden he began having issues.....problems tolerating food again. Hence the reason for the STEP procedure. I watched maybe 3 minutes of it. I was not bothered by the surgery itself (blood, etc.....), but rather the image of me standing in the OR watching a bowel surgery being performed on my little boy. I KNEW that this exact scene was what it would have looked like had I been there for Caed's surgeries in Mar and April. I quickly shut the computer down.....and wanted to then curl up into a ball and cry my eyes out. WHY???? Why is all this haunting me NOW? Caed is doing wonderful!!!! While this was happening with me, he was at school.....probably being silly and making others laugh....eating his turkey sandwich.....and winning a race in PE!

It's called the "fear of the unknown." I HAVE an amazing testimony of how God delivered us many, many times before. How He NEVER left our side. And how HE "made all things beautiful in His time." I have SEEN first hand the work of my all powerful healing LORD. I see everyday the face of a little boy that He chose to spare. I see a family that is well.....happy.....and all back together again.....and a baby who actually KNOWS and WANTS his Mommy. I see the hand of the Lord providing for our family in ways we could never imagine.

And yet, I find myself scared and anxious.........................once again.

I think I can recall a story in the Bible where very similar things occurred. God, in His faithfulness.....saved a group of people who were being oppressed. He performed miracle after miracle before their very eyes, and spared their lives on numerous occasions. He provided for them when all hope was lost.....(and in the most creative ways). The people praised HIM....they thanked HIM....and gave HIM glory for what He had done! But....after awhile, something changed. Their hearts grew cold.....doubt and fear swept in like a raging flood, and seeds of bitterness began to take root. They shook their fists at God.....asking Him...."WHY?? Why are you allowing these things..... hardships and adversities? Our lives were better off when we were still in bondage! You should have never delivered us.....you should have left us alone!"

Ouch! Those are hard words to type, much less say. And yet, in some odd way, I have found myself in this same place the Israelites were thousands of years ago. Several days ago, Reagan and I were going through pictures for a school project. It's always so fun to go back and look at the past. We laughed and I told her lots of stories from things she didn't remember. However, the one thing that kept coming back to me was CAED! His baby pictures....the toddler years when the Texas Tech cap was a daily staple in his wardrobe.......then the 3's and 4's.....his little personality began to shine. Always entertaining......always laughing.....being silly.....and rough and tough as only little boys can. There were memories of "before." Before all this happened! Memories of happier times. No, our lives were not perfect, but our definition of a "bad day" was a far stretch to what REALLY classifies as BAD. We were just a happy little family serving in a church far from home......making lifelong friends and memories along the way.

And yet.....in only HIS infinite wisdom......He chose to deliver us! "From what? Things were great! No major complaints here, God. You know....other than just the usual stuff. Why?? Oh WHY did you turn our world upside down? Things were comfortable and relatively predictable. Things like this are supposed to only happen to OTHER people. Not us!"

I have a dear friend....who I absolutely LOVE (and when she reads this she will probably know I am referring to HER! ha) But, she has always struggled with fear. Fear of the unknown. The what-ifs would at times consume her every thought. Her greatest fear was losing one of her children, and she pondered scenarios in her head daily. I remember being in a group with her and hearing her requests for prayer with this issue (almost weekly). My heart hurt for her....and I could see how it was affecting her life. But, I also remember thinking to myself, "what is wrong with me? I don't have those fears. I'm sure every good mother has them.....but why don't I?" I honestly worried about it (which is actually hilarious when you think about that.....I'm worried because I don't WORRY about my kids enough....and that must be wrong!"......ha! Anyway, I now know the utter torture that she lived in. It's consuming and painful and the feeling of helplessness is beyond what I think I can bear at times.

I KNOW what the problem is! And what's worse....I KNOW how to solve it! We even talked about this in my Sunday school class this morning. "Fear is the opposite of faith." I am NOT trusting in the One who has time and time again shown Himself trustworthy! I KNOW I am allowing satan a foothold. I am allowing him to whisper those awful scenarios in my head and I'm listening to him! I'm thinking about them all throughout the day, and have even had a few dreams lately that are terrifying.

And this is what I am afraid of: Sure, things are going fine now.....but when will the next shoe fall? Because I am convincing myself that it indeed WILL happen....sooner or later....and I can't.....I cannot possibly go through it AGAIN? At some point through the years, as we continue to make these bi-annual or annual trips to NE, there will come a time when the report isn't good. When something has gone wrong or his body has just "had enough." Will it be at age 6.....12....19....32? And what if next time there isn't a happy ending?

Something awful HAS happened to me as a mom. Now I know what my friend was talking about all those years ago. I understand what that FEAR feels like. And I hate it............

Deuteronomy 7:19

You saw with your own eyes the great trials, the miraculous signs and wonders, the mighty hand and outstretched arm, with which the LORD your God brought you out. The LORD your God will do the same to all that you now fear.

Psalm 112:7

He will have no fear of bad news; his heart is steadfast, trusting in the LORD.

Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Romans 8:15

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."

3 Things I'm thankful for.......

Finally got a picture of my Thing 1.....Thing 2.....and Thing 3




I have said before how different Reagan and Caed are (girls v. boys), and it also has been very evident in their learning styles. For Caed, it has taken him a little longer to catch the "learning bug." Up until a few weeks ago, he had NO....zero.....nada....interest in schoolwork. Would just as soon be playing ball, dancing, or beating on his drums. However, lately it has all started to click for him. He is doing great, and is SO proud to read to us each day. Don't get me wrong....I still think Caed is going to probably end up being the athlete or entertainer of the bunch, but we are VERY VERY proud to see him grow in this way.

The rest of the family is still doing great. No one else has caught the flu, which I am daily thanking God for. Tomorrow is Celina's homecoming, so we have a busy day planned. Early dismissal.....parade/pep rally......big rivalry game. Should be lots of fun!!



(I think Caleb has been watching too many 1/2 time shows......)




**Devin Update - Colleen said today was a little better. He began peeing more (with the help of meds)....they weaned him off some of the vent settings.........his blood gases look good.....but chest x-ray is unchanged. She is asking for you to PLEASE continue to pray. Devin's 6th birthday is coming up on the 23rd. What an amazing gift it would be for him to be walking and eating again!!!!

Update....

I have been asked by many to give an update on Devin. (and also Caed)

Devin is doing better. (still very very sick though) In Colleen's words....it is "SLOW and steady" progress. He is still on the vent, but was trying to wake up yesterday. PLEASE continue to pray for this sweet boy and also his family. Devin is a fighter, and it is evident in what he has gone through particularly this week. God has heard our pleas.....and is once again showing his love and mercy in Devin's life. THANK YOU LORD!!

As for Caed, he went back to school Mon. He is doing better (fever free), but still has a nasty cough. I have started him on an immune booster (Sambucus) seeing he has been hit with sicknesses at least 4 times since school started. (looks to be a long winter!)

Everyone else is doing well. Caleb has YET to show any signs of this flu. (amazing!) Hopefully we can keep this trend going.....as we leave for Nebraska in 2 weeks. Caed's 6 mo. round of tests and checkup is due again.

Urgent need for prayer!

First off.....Caed is ok. Just continuing to try to shake this flu.


I have made many short gut and/or transplanted bowel friends in this last year. One in particular I have written about before. Devin McQueen is Caed's age, he lives in NY.....and Colleen and I write almost weekly to one another. She has helped me more times than I can count in regards to Caed (she also is a nurse). Devin received a new bowel in Feb., and has been doing awesome!!




This morning I was in COMPLETE shock as I pulled up Devin's website. He was fine.....going to school....baseball practice.......then, all of a sudden within a few short hours, he is now in a hospital fighting for his life!

PLEASE go to his site.....read his story.....and PRAY! He desperately needs it!

www.cotafordevinm.com
-then go to the "Journal" tab

Friday Fever

.....that basically sums up our day. Fever - continually! At times it would get down to 99, but has yet to totally break. Caed seems to be worse today. His voice is all but gone, and I know his throat is killing him. Todd made him a tent in the living room, and he has watched lots of movies. I know it will just take time......







Reagan is doing great! (all A's on her report card this 6 wks), and Caleb, Todd, and I have yet to show any signs of sickness. Thank you Lord!

What a difference a day makes....

This was Caed just two days ago.....going strong....being silly......practicing in he and Caleb's "daily dance-off."


However, the dreaded flu has finally hit our boy!

I knew it eventually would, as it is rampant in our schools. Just about everyone I know has had a bout with it in some form or fashion. Reagan had "something" several days ago (fever, coughing, etc....), but it only lasted 48 hrs. and she is as good as new now. This hit Caed last night after we got back from Awanas. He wanted to go straight to bed (which gave me a huge clue something was up!) He woke during the night burning with fever and then had some vomiting and bad stomach pains this morning. We went ahead and called his pediatrician (just because it's CAED we're dealing with). Definitely need to be on the safe side.

After seeing he had a fever early this morning, I gave him some Tylenol, and we all went back to bed. However, I lay there for quite awhile thinking.......

the last fever Caed had was when he still had his central line. When you get a fever with a CL.....it's scary! Usually is an indication of a line infection, which can be VERY serious.

I lay there not being able to shake the fear in my heart. I had to keep reminding myself.....it's ok. There is NO more line! He's just a normal little boy now with the same junk everyone else in the world currently has. However, for some reason it's just different for me. Will it ever be just a "normal sickness" with him? (in my mind) Reagan ran fever for 2 days this week, and as much as I hated she wasn't feeling well, I honestly never really gave it a 2nd thought with her. I administered the Tylenol or Motrin....and didn't worry too much. But with Caed, too many painful, scary memories become associated with fevers.....stomach pains.....vomiting.....or crying in his bed.

Well, for the update. His dr. said he just has the flu, but there really isn't anything we can do. (just treat the symptoms and stay hydrated) We could tell this afternoon he began feeling (acting) better, but soon the fever returned. He will stay home from school again tomorrow, but hopefully will be back to his dancing/drumming self in no time.

So far.....2 down......3 to go! (oh Lord.....we pray NOT!)

Candy Land

The kids were in for quite a surprise a few days ago. While we were in Florida for Caed's Make a Wish, each evening when we returned to our villa, Give Kids the World would have left some special gift(s) for the kids. It was always so fun to come in and see what the "surprise of the day" was! One day, the board game Candy Land was left on the dinning room table. The kids honestly didn't give it a 2nd glance and neither did I. (you have to remember they are WAY TOO GROWNUP for a 3 yr. old game like that!) I had cousin Xan in mind, since we had just spent the day with her. Thought that would be a great gift!

Well, just a few days ago, I was finally unpacking my suitcase (yes, I admit....I am notorious for not touching it for days/weeks after a trip!). I picked up the Candy Land game, and was so shocked. It wasn't just Candy Land......it was the "Give Kids the World" edition!!!! As I opened it up, I got so excited. This was the real deal! Hasbro.....Milton Bradley Candy Land. However, it was specially made for kids that had been to Give Kids the World. Here are a few pictures of the game AND the real life version!
(the big gray bunny is Mayor Clayton. The kids went to his birthday party the first night we were there, but I didn't have my camera. He and his wife (Ms. Merry) will tuck kids in their beds at night if you request.....we just never had the time (always getting in so late!)


Castle of Miracles

Rusty


Dino Putt


Amberville

Ice Cream Palace


Gingerbread House (cafeteria)


Old Elmer


Playground that is designed after a giant Candy Land game

(and of course the Star Fairy is the one who "threw" Caed's glass star into the sky in the Castle of Miracles!)