Disney or bust...

IT'S HERE!!!!!!!!!!!!!!!!!!!!!!!


I have had the busiest/most stressful 48+ hrs...........flew to Houston and back in less than 8 yesterday, and can I tell you, I AM BEAT! (by the way.....hated the reason I had to go to Edna, but LOVED every minute (and there weren't that many) spending it and seeing all our dear sweet friends!!! You don't realize how much you miss people until you see them again)


This trip will be a first. Normally I begin packing/preparing days in advance. Now, here it is 2 hrs. before we head to airport, and Todd and I are literally just throwing things in suitcases. (and to top it all off.....I'm blogging about it! ha!)

Anyway, the day Caed has been looking forward to for SO long......has finally arrived. Thank you for your prayers specifically for this special trip. We know not everything is going to go smooth sailing, but we know it will all be ok. We are looking so forward to spending this time away together as a family (minus our beloved Caleb), seeing the joy in Caed and Reagan's eyes as they experience Disney for the 1st time , and also time to reflect yet again on God's goodness and how faithful has was and continues to be to sweet Caed.

This trip is for HIM......he deserves every minute and more........he is our strong, brave little hero!

(watch for pics!....I'll try to post in the evenings)

You've got to be kidding!

.....I can't believe the last 3 days have ended up like this. Reagan and Caed have had a countdown on our board for over a month with how many days left til Disney. We finally made it to the single digits....and then 5, 4, 3......

uh oh! Should have known it wouldn't be an easy week. :)

It all started Labor Day weekend....what I thought was Reagan's "first pimple" turned into full fledged IMPETIGO! The school called me this morning to come get her. She was running a low grade fever and then "the rash!" We had many guesses as to what it might have been....food allergy, fever blisters/cold sores/eczema........(but my mom was right!)......impetigo. I took her to our pediatrician and she told us Reagan needed to stay home from school for at least 48 hrs. ugghhh! Didn't she know we were leaving this weekend, and Reagan would be missing all 5 days next week too? What awful timing for her to be missing more school!

Then....there's me. I began feeling not- so- good also on Labor Day. Bad sore throat, headaches, sinus and ear pressure, and fatigue. I finally forced myself to go to the dr. this afternoon. Yep....he said I had a pretty bad infection myself. Gave me 2 shots and an antibiotic.

Caed also has "something" brewing. Yucky, yucky nose and the beginnings of a cough. Taking him to our pediatrician for something "simple" like this.....well, isn't always quite so simple. You see, there are certain antibiotics that Caed absorbs better than others. Trying to inform our "back-up/fill-in" pediatrician about Caed's situation, is not fun. So, I have put in a desperate plea to NE, and hopefully they can just call us in something. Oh, I'm praying it can be that easy.

Next.....one of my dear, sweet friends who has battled cancer for the past several years passed away this week. It truly is a rejoicing time. If you knew Rebecca or even talked to her for a few minutes, you knew who she lived for and what she longed for. JESUS! We know she is singing and dancing and praising her Lord right now (pain free!), but yet we are left here to mourn our loss. She was a very special woman who I am going to miss dearly. She lived in Edna (our former church), and even though we have only seen each other twice since our move, she faithfully called and sent beautiful hand-written cards every couple of months. She was one of the most Godly women I have ever met. I thank God for allowing our paths to cross and the sweet time we had together laughing, crying, praying, and studying His Word together. She will be greatly missed......

I am flying out early in the morning to attend her funeral. It will be a marathon day as I will have to fly back 10 hrs. later. Oh, and have I mentioned I haven't yet packed for our trip? Yep....that was on the "to-do" list for today....before I got called away to spend the remainder of it in dr.'s offices and pharmacies.

All will be ok. Usually I am "one crazed-stressin' woman" in times like this.....but not tonight. I guess Rebecca's passing has reminded me to put things in perspective. We are not promised tomorrow.....so let's live for TODAY!

Mic key vs. Mini

So far.....the new "Mini One" button is great! His stoma looks so much better; although it may be difficult to see that in the picture. We have begun putting a cortisone cream around it and the redness, etc....have all but disappeared. The only issue we have had with it was the first 24 hrs. It is virtually the exact same device as the mic key, but the feel is different. Therefore, when I went to attach the extension tube to it, I had to really work at it. Because it's smaller, it's a little harder to grab onto. The first night he had his new button, he woke up around 3 am swimming in NeoCate/stomach fluids. It was wonderful!!!!! And if you've ever had the pleasure of having either of those spill on you.....then you know his room stunk for days. I did everything I could think of...washed sheets, bed protector, comforter, carpet....infinite sprays of Lysol....and put at least 5 different Glade products all around his room! ugghhh! It was awful. Apparently I thought I had the tube inserted correctly. So, the next night I MADE SURE I did! I think I about have it figured out now.




Caed is continuing to do wonderful. Todd and I were a little concerned a few weeks ago thinking he was losing weight. But, this morning when we weighed him again, it showed 45.5 lbs. (he's basically maintaining....and slowly gaining) Which is perfect. He has his dreaded monthly blood draw this afternoon. However, this time he is excited. (because I will pull him out of school a little early) When he left out this morning, he told me, "I can't wait for my blood draw today! I'm lucky, huh....Mommy?" Well.....I don't know about "lucky," but if pulling him out of school an hour early makes the blood draw seem like a "special treat"..........then we'll have to do this every time!

This time last year we had our first meeting with our Nebraska drs. It's very surreal thinking about our time living there. It seems like a lifetime ago....and yet also like it was yesterday. Todd and I have been commenting lately how we miss it! Not the hospital and all of Caed's rehab, but just simply Nebraska. The sweet (lifelong) friends we made. The beautiful countryside and weather. The zoo. The days spent at the parks. And the sight of "football fever" with Cornhusker Red at every turn. I miss the faces. And our little home on the 6th floor of the Lied. Don't get me wrong! I am SO thankful to be HOME....and to have our life return to "normal" again....but like I've said many times before, NE will always hold a very special place in our heart. We're just ready to go back for a little "visit." (which will be the end of Oct.)




(Caed and Reid)


Now.....ode to our sweet Caleb. He's only been gone 2 days, and I can hardly stand it. Maybe more so because he has left me to spend this week alone while the kids are in school. It's just TOO quiet around here! He is in great hands....and I know having a wonderful time with his grandparents in Idalou/Lubbock.

WE LOVE AND MISS YOU!!!!!!!








3 more days......the kids can hardly wait! (as well as Todd and I) We have been watching the Disney World DVD that Make-a-Wish gave us. We are just trying to get through the remainder of this week and not "check out" too early.

Make-a-Wish Party

We had a great time this weekend. Family, friends, and lots of fun! The Make-a-Wish organization wanted to give Caed a party/send-off for his upcoming Disney trip. He decided to have it at the Wiggly Play Center. Most of our family were able to fly/drive in for the party and sure helped to make it extra-special for us. Caed's hot, red-face (as seen in all the pictures) gives you a good indication of how much he enjoyed it!

My parents took Caleb back to Lubbock with them today. He will stay with them the entire time we are gone. We sure miss him and it seems very strange around our house without those big blue eyes. However, we know the trip will be easier (and more enjoyable for Caed) without him. (even though it makes us sad not being able to take him too) I keep telling the kids maybe one day when Caleb gets bigger, we can go back.

Only 4 more days until the "big day"......................... Strep is going around Kindergarten right now, so please pray we can all stay well this week!



pictures like this help reassure me we are making the right decision by leaving our 18 mo. old home. ha!

the whole gang.....cousins and a few close friends

Caed and our sweet Make-a-Wish coordinators

tigers....Caed, Reid, and Hayden

cousins....Claire and Kambree

Reid and Caed

Caed and our across the street neighbors ("the Owen girls")

Grammy

Nana and her (ever-present) sidekick Caleb

Pizza time!

Carlie and Reagan

Caleb and his "big red car"

Caed and his best friend, Reid

New and Improved......

We finally received Caed's new button today. Normally he is nervous about it coming out (changing it), but today, he came in from school and asked if he could get his new button "right now." One of his friends was over, and I think he was wanting to demonstrate his bravery for her. ha! I didn't mind a bit. If her presence helped the process go smoother, then fine by me! (although her mom may not have agreed...ha!)


This is his old mic key button. Because of all the extra drainage/leakage (from having such a large button).....his stoma has built up granulation tissue. He has had it before. Enough so they wanted to burn it off....but luckily for him somehow we dodged that unpleasant procedure. The skin around the stoma has gotten very red and irritated ever since this whole button thing occurred last week. We have been advised to start putting a cortisone cream around it, so hopefully that can begin healing and getting back to "normal" soon.






This is our NEW and improved Mini One button. I LOVE IT (so far)! It is much softer and would imagine more comfortable. Everything about it is the same as the mic key, so changing it out was not a big deal. (listen to me.....I have become quite the pro at this now!) ha! Far cry from a few weeks ago. Anyway, this button seems to be a perfect fit (at 2.3cm). Now we don't have to put a dressing around it anymore. (to catch all the excess drainage) I am loving that! Hopefully this new button will be just what Caed needed.




Ever since we changed it out, he has found a "new toy." Literally that's what he's calling it. He is pretending he is a dr. and he is telling us "how to fix your children if they are 5 or 6 or 4....and they have a tummy ache." It's been cute listening to him. I don't mind him playing with it. We will certainly not be using that one ever again, and I think it's good for him to play around with it and see for himself how it works. Might help make the changing out process a little less scary next time.



He asked me to make a video of him explaining the mic key button. ha! It is very cute. I have been having problems uploading videos to Blogger lately (that's why you haven't seen the latest 'Reagan Hollingsworth' episodes). So, I am going to attempt to put it on YouTube. I will post the link as soon as I have it.


Tomorrow is an exciting day for Caed and our family. His Make-a-Wish send off party is at the Wiggly Play Center. A lot of our family is driving/flying in for it, which makes it all the more special.

A blessing in disguise?

Caed began having lots of pain with his tube one week ago tonight. He was picked up from behind from a teenager at church. She in NO way meant to hurt Caed, but we're thinking this pull on his tube might have been the true cause of the pain he experienced this weekend. (plus it already being a little tight on the stomach wall) Through several problems sending out a new size....we are possibly on to something bigger and better. This awful unintentional "injury" might just be a blessing in disguise.

We finally have word on a new button. Literally a NEW button. Our home health company suggested we try a different kind of g-tube. This one is called a mini-one. It is supposedly much softer, flexible, and obviously more comfortable. It works just like the mic key and all our extension sets will supposedly fit into this one too. I asked NE about it, and they are curious for more info themselves. They will be talking with a sales rep there to find out if its something they want other IRP patients to switch over to as well. Just looking at the picture of it....I'm SOLD! ha! Although I guess Caed will be the ultimate judge. They had to order it, so we probably won't get one until Friday. Just praying HARD all this can be resolved and Caed can be back to "sbs normal" by our Disney trip. (which by the way is now in 10 days!!!!!!!!)

(for those of you who know...or care.....what I'm talking about.....this new button will be 18FR - 2.3 cm. Rather than the 2.5 mic key) Hopefully, it'll be the perfect fit!!!!

"Bravery....

.....is not the absence of fear, but the will to overcome it."


The counselor at Caed's school made him a little sign with these words printed on it. I know Caed doesn't understand them, but I pray one day he can realize just how BRAVE he was throughout this whole ordeal....and how GOD gave him the grace to truly "overcome" it.

Today's story time in Caed's class was so sweet. I wish I had a video of the entire thing to share with you. Caed and I, along with the counselor, nurse, and asst. principal, walked into the room together to see all the kids sitting on the floor ready for their "special story." The counselor had Caed sit beside her as she read his story to the class. She hadn't gotten far when a hand shot up and asked "When are we going to get to see Caed's thing on his tummy?" (apparently Caed had already taken the liberty for a few friends to sneak a peek at it...ha!) After she finished the story she asked if anyone had any questions for Caed. Ok....this is the funny part!

1st question: "How did your tummy get sick?""

Caed: "because I was at my Nana's and I was laying on the floor and my tummy starting hurting really bad."

2nd question: "Why did you get sick?"

Caed: "because my tummy was hurting at my Nana's house."

3rd question: ".....one time I hurt my arm and went to the doctor and......."

ooops! Sorry, that wasn't a question

4th question: "How did he have to go to the hospital?"

Caed: "because my tummy was really hurting."

5th question: "I've been to the hospital!!!"

6th question: "ME too! Cuz I got hurt in my mouth"

Counselor: "ok.....let's remember to ASK Caed questions, not tell stories"

7th question: "Why did Caed's tummy hurt?"

Caed: "because I was at my Nana's house and it started hurting...."

8th question: "I was sick one time"

Counselor (sensing these little 5 yr. olds were done with questions): "alright Caed. Do you think that's enough?"

Caed: (pausing.....then holding up 1 finger): "ummmm...I'll take one more."


Apparently someone was enjoying his time in the interview chair a little too much! ha! If you have ever had any experience with young children, you can picture this scene to a T. The questions soon turned into their own stories and everyone had something they desperately wanted to share. It was too cute.

The counselor talked for awhile about HOW BRAVE Caed has been (and continues to be). I was so relieved she did. Caed still has to endure monthly blood draws, extensive bi-annual testing, and just the day in day out dealings with his button, pump, and endless medications. He IS a strong, brave little boy, and I wanted Caed to hear that....loud and clear. I wanted him to feel proud in front of his friends. And know he WILL get through this!