Between my toes

I love to see Caleb use his senses!...This week I've been putting his fingers and toes into a container of rice and beans and corn for some sensory play. His vision therapist had fun putting the beans in between his toes! Couldn't you just eat those cute little tootsies? I could...beans and all!

New wheels!

Caleb got his wheel chair stroller adjusted yesterday! It took 4 months for the parts to come in... just in time for some Springtime strolls through the neighborhood!

Mitchell helped the "wheel chair guys" fix Caleb's stroller with a kitchen beater!

Pucker up!

I told Caleb that Valentines day is a day for smooching...

I told him to practice his pucker...

It took a lot of concentration...

So I decided I better better show him how...

Ahh... a happy boy now that the smooching is over! Eewww!

XOXOXOX

Sunbeam

Jesus wants me for a SUNBEAM

To SHINE for Him each day

Caleb has done well the past few days! Over the weekend he broke out in big rash that covered his whole body so we had to take him to the Doctor. He couldn't figure out why he was having such a big systemic reaction, but some steroid cream and benadryl did the trick! We knew the rash had almost run it's course when it's last signs were in between his toes and on the tips of his ears! I guess we can't play "dot- to - Dot " on Caleb anymore!

A tribute to my brothers

(from Caleb's heart, transcribed by his mother)

I have really special brothers.
Heavenly Father knew he could trust them to love me completely.
They see me with their hearts.
They hold my arms around their necks so that I can hug them.
They crawl into my crib and cuddle me when I need it most.
They visit with me even when I can't speak with words.
They listen with their hearts.
Sometimes they worry about me when I'm in the hospital.
Sometimes it's hard for them to see me with new bandages on my body.
Sometimes they worry that they might hurt me
so they touch me with their hearts.
They are so good to me.
They don't complain.
They often don't realize the many ways they sacrifice for me.
They just love me because I'm their brother, and that's what brothers do.
I know that someday, my brothers and I will be with the Savior,
and He will heal me.
But I don't think I will seem much different to them,
because they see me as I really am.
But I will love to be able to hug them back
and thank them with words for all they did for me.
Because they are my brothers
and I love them with all of my heart.
Love Caleb

jiggety jig

Home again, Home again, jiggety jig!

There's no place like home

Caleb doesn't have any ruby slippers, but our wish was granted... He's coming home tomorrow! He got his chest tubes out today, and his lungs look good! He's tolerating his feedings well, and I've finished my g tube training. So we're preparing to be home by tomorrow evening! Caleb will still be recovering for quite a few weeks, but what better place to heal than his own cozy room, his own comfy bed, and his own family and friends to snuggle him? There's definitely no place like home!

A few pictures from the past few days:

Still not feeling so well...

Starting to feel better...


Getting a snuggle from a"HUG" his nurse gave him!

A little dose of love

Caleb had a really good day today! When I arrived, I changed his trach then changed his G tube dressings and had some more training. By this afternoon we were moved out of the PICU and onto the floor! He still has his chest tubes in, but the drainage has almost stopped! Caleb also started a slow continuous feeding through his g tube. They started him at 5 ml. per hour and are slowly increasing. Once we were settled on the floor I crawled into bed with him and held him on my lap for over 3 hours. Those moments truly remind me what heaven felt like. I finally had to put him down when I got too numb and sweaty from sitting for so long :) Caleb loved being snuggled and held. It was just what the doctor ordered, for both of us. Caleb still has some challenges breathing, but he's getting close to his breathing patterns at home. If all goes well, we may be able to bring him home in a few days to continue his recovery with our home equipment!
Dear Caleb, thanks for the snuggles today. That big dose of L.O.V.E was just what I needed! I love you!

Too many tubes!

Today was tube day! When I arrived at the hospital I learned that his lung was still collapsed and didn't show any signs of improvement. The doctors decided to do a better ultra sound. The results showed a large amount of fluid, so they determined he had a pleural effusion as result of the surgery trauma. They prepared to insert a chest tube by giving Caleb some medicine to put him under, but Caleb didn't respond very well. Even after increased doses, he never did fully relax! He also had a histamine reaction to it which made him break out in a rash all over his body. When he was finally relaxed enough, they made a small incision in his side and place a chest tube between his ribs and into his lung to drain the fluid. He lost 600 ml's of fluid right away! Another chest x ray was taken to see how his lung looked, and it looked so much better... but.... the x ray also showed that the other lung was doing the same thing! So sweet little Caleb has chest tubes placed on both sides. He'll likely have them for around 3 days until they stop draining. His lungs look a lot better though! The surgeons have been down to visit him multiple times and, they feel so bad about the set-back. Caleb is such a little trooper!
Today I went to a 2 hour class to be trained on his g-tube, and started taking care of his tube at the bedside. The g tube site is in good shape and seems to be healing well!
Caleb's sweet face looks much better today! No more chipmunk cheeks! He was tickled with a surprise from his buddy and he loves his BYU Blanket from his valentine!

Chipmunk

Caleb decided that since he has never been to the circus, he needs to create his own in the hospital! Today when I arrived at the hospital, I could see that there was commotion going on. Caleb wasn't doing very well getting off of the ventilator, and after a chest x ray it was discovered that his right lung was totally collapsed. After taking his blood gasses and seeing that his carbon dioxide levels were not good-- we had a little parade back to the PICU! Caleb also had the IV's in his neck infiltrate so his neck and cheeks are so swollen- he looks like a little chipmunk!
So now everything related to Caleb's surgery is on the back burner and his lung have become top priority. They think the collapse is a complication from the surgery and that he has mucus plug that isn't allowing it to re inflate. When I left today, his lung hadn't improved and his tummy was really tight because it's so full of air. It's too bad we can't just transplant the air from his belly into his lungs!
Hopefully tomorrow we'll see some improvement! We love you Chipmunk Caleb!

Post surgery pictures

Caleb was stable when we left the hospital tonight. He is still on the ventilator, but was was doing well! Good night sweet boy!

Surgery adventure

(writing from the hospital) Caleb had an adventurous day today! His surgery was delayed because it took over an hour to place the IV, so the poor little guy finally had it placed in his neck! One IV went bad during surgery so they placed another one on the other side of his neck. He looks like he could be a line-backer with his swollen little neck! We expected the surgery to take an hour and a half, but it took 3 times as long. The end of Caleb's esophagus was in pretty rough shape, so the nissin procedure was quite complicated. His surgeon said they rarely see esophagus's in that condition,and he lost more blood than they they anticipated. The good news, it definitely confirmed that the nissin was the right thing to do because the damage was likely caused by reflux. The bad news, It was a complicated procedure and the g tube was placed a bit lower than the surgeon would have liked. As a result, the surgeon is worried that the g tube that is placed is going to impede his ability to empty his stomach. So, in a month after he heals, he is going to switch it for a different one that is smaller and will work better for a child in Caleb's condition. The good news, it only has to be replaced every year or so instead of once a month like the other one. The bad news, I can't do it myself, it has to be done at the hospital under anesthesia.
Caleb is stable now and has been settled in his room for the past couple of hours. He was able to avoid the PICU and is in a special room on the floor for trach/vent patients. He doesn't have a feeding tube attached to his face any more, and he's being so brave. The plan for tomorrow is to start slow feedings and do some testing to see how his stomach is emptying. Hopefully he'll have a cozy night and he'll feel good enough for some snuggling tomorrow! I'll post a few pictures when I get home!
We love you Caleb, We are so very proud of you!

Tubing

Caleb is going tubing this morning! - G Tube-ing that is.... We check in for surgery at 8:45 AM. His surgery is at 10:15, and they think it will take about an hour and a half. He is also getting a nissin where the surgeon will tie a part of his stomach around his esophagus to tighten it up. Hopefully this will help Caleb not to throw up so he can't aspirate and get pneumonia as often. This day came little bit too fast since it seems like we just barely came home from the hospital. We hope that with these surgeries behind us, we'll be able to spend more cozy time at home with one another, and get ready for a healthier Spring and Summer!
Dear Caleb, Thank you for your courage. We will be praying for you! It will be so much fun to kiss you with no more tubes and tape on your face! I love you so VERY much!

Touched

I've been thinking a lot about touch. For Caleb, touch is largely how he experiences the world. I've helped him splash the water in the bath tub. I've put fall leaves in his hands and helped him crunch them. I've brought snow inside and helped him build a little snowman on a cookie sheet....I've wrapped his arms around my neck and held them there when we've needed a hug...I've put his hands on my cheeks and let them melt to my skin. He loves it when I rub his feet, rub my face in his hair, and rub his chubby tummy. Caleb loves to be touched!
Mitchell also loves to feel my skin. Whenever he sits on my lap, he sticks his arm up my sleeve so that he can feel his arm resting on my arm. When he can feel me, he can be still.
Josh and Matthew also love to be touched. Sometimes they want to be westled instead of cradled. Sometimes they prefer a high five, especially if their friends are watching. But they thrive in being hugged, loved, and tackled to the ground!
I think that we all need to be touched. Sometimes I need someone to hold my hand and help me experience the world. Sometimes I need the warmth of an embrace. Sometimes I need to feel someone close so that I can be still.Thank you my sweet boys, for touching my heart every single day!

I know that there are two hands that are always inviting His embrace...Two hands that bear the marks of His redeeming love...two hands that gently lead me through life experiences I don't always understand...two hands that cradle my heart and help me to be still.
"He's reaching down, I'm reaching up, and somehow I feel- the Maker's touch.
(please turn off my playlist at the bottom of the screen)

Sunshine

With cute chubby fingers
and a tube in his nose
Caleb shares sunshine
wherever he goes!
Dear Caleb, Thank you for warming my heart right up on a cold Winter day! I love you!

Just love

Dear Caleb,
I don't have any pictures of you today. I don't have any updates on your health...But, I do want to tell you I LOVE YOU... More deeply than I ever thought possible. I'm coming to find you and snuggle your sweet little self until it's time for bed!

Bean Bag

I've been trying to figure out how to get Caleb a bit more comfy in his crib... The last few days I've been putting a bean bag in it at night and it works great! I put a blanket over it, then tuck him right in! It's made it easier to position him and has helped him to be cozy for the whole night long! Hooray for bean bags!

Tootsies

A dear friend gave us these adorable pocket warmers for Christmas! You put them in the microwave for 20-30 seconds, then put them in your pockets to keep you hands warm. Somehow they keep disappearing...! They mysteriously show up in Caleb's bed tucked under his little tootsies to keep them warm at night.
Okay... maybe he has me for his accomplice--- we're good partners in crime-- Plus I know I can count on Caleb not to spill the beans!

Peeking!

Caleb is so happy to be home! We've adjusted quickly to some new routines, but we're just so thankful to be all together again! We've been using the ventilator at night most of the time. Some nights it seems to make him unhappy, so we just turn it off and put him back on his trach mask. Caleb's lungs sound much better, and he's tolerating his continuous feeding well, too!
He got a new crib toy for Christmas from his aunt and uncle! I tie it everywhere so that Caleb can have something fun to look at! Sometimes Caleb pretends like he's sleeping...but sometimes I catch him PEEKING at the spread of colors, ribbons, and toys attached!

Earth Angel

Jeffrey R. Holland: ...not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day...

I have sweet moments with Caleb when I know that I live with an angel. Even when Caleb is so sick that he can hardly move...he still has an miraculous effect on people. We usually spend most of our time in the PICU where Caleb can't have many visitors. However, during this last hospital stay, I was so touched by the visitors Caleb had...visitors from within the hospital. Many doctors, residents and nurses who have met Caleb before, would come by day after day to check on him, stand by his bed for a moment, and feel his sweet little spirit. Caleb couldn't walk or talk with them- He touched their hearts... and they felt it. I felt it. One told me she had never been so touched and inspired before. I know. Me too.
This last visit was 13 days long. Nine IV's later...and Caleb still shines. I live with an angel, whose feet have never left the ground.