New Year's Eve!!!!

Quiet evening with family. It is not another year gone...
but another year earned.

Christmas 2010 News Article

The Ocala Star Banner did another wonderful article on Caleb & our family. We appreciate them wanting to help educate people on Trisomy 18...and to put God and a personal story to it.
http://www.ocala.com/article/20101225/articles/101229835

Thoughts of Christmas

Christmas is only a couple of days away. It is getting here way too fast. I am so excited, yet sad too. As I shop for presents for Caleb, or driving around looking at Christmas lights...I'm overwhelmed with so much happiness. I am also overcome with the feeling of saddness because I wonder if this will be the last year I can do this. I want so badly to hold on to this moment...to cherish every second. The boys are so excited and I love seeing them smile....especially when they are with Caleb. I pray we have many more Christmas', many more days to cherish the blessings God has given us. I love my family and the moments we have together....I guess I'm a little bit selfish because I want more time...more tomorrows. But I also thank God for every moment.....these are the moments we never thought we would have.

Funny paper

Caleb LOVES the sound of the paper that they put on the Dr's tables. He just laughs and laughs. So one of his Dr's gave us a role to bring home....she thought it was hillarious how he gets so excited over it. Caleb is 21 months old now....he finds laughter in the simplest things in life :)

STINKY!!

Getting ready for my bath...daddy's taking the wrap off my foot from the pulse ox...and it TICKLES!!!!! See my teeth :)

Trying to figure things out

Caleb had been in the hospital for 9 days because he had a severe UTI. He had also been having pain, vomitting & diarhea for about 1 month with no explanation why. He wasn't tolerating his feeds and his GI Dr. felt it was best to admit him to be evaluated. That is when they found the UTI & kidney pyelonephritis. He went on two IV antibiotics. They also found during this stay kidney stones that were embeded in the meat of his kidneys. They switched his formula to see if he could tolerate it better. We were discharged with a follow up to see a Pediatric Urologist in Jacksonville.

When we got home he still wasn't tolerating his feeds well. I did a little bit of research on the different formulas he was on and called the manufacturers. Eventually we figured that Caleb probably has a intolerance to maltodextrine which is a corn carbohydrate. The only formula that doesn't contain this is Alimentum RTF. He has done well on it so far. After further testing of his kidneys, we found out that he has grade 4-5 reflux in his left kidney (which we've known for over a year), but also has grade 4 relux in his right kidney. This was so upsetting. His Urologist feels optomistic that we can handle it with the daily antibiotic but wants us to have a DMSA to see how his kidneys are. So far we have had kidney u/s, cat scans, DTPA, VCUG, and will be having a DMSA.

In the Hospital

It has been a while since I have updated Caleb's blog...I will be doing so soon. It has been an eventful couple of months, so much to tell. We are currently in the hospital bc of a severe UTI and GI issues. Please check back to see all the new stuff that has been going on. xoxo

Halloween 2010

Caleb dressed up as Mighty Mouse & his brother's dressed up in Star Wars costumes...of course :)

Graduated From Hospice!!

We cannot believe this day has come. Caleb has graduated from Hospice. Such a miraculous milestone. He has done so well that he is now graduated into the PIC (Partners in Care) program. This is a program between Hospice & CMS. He still is seen periodically by his Hospice team and is given some respite care when needed. But the program is for children who still require care but not under "Hospice" guidelines. We are thrilled beyond words. God has blessed us abundantly.

Exercising

Caleb has started being a lot more active. He loves to bounce as soon as you pick him up. Sometimes it's hard because he really gets going and I'm afraid to drop him. But he enjoys movin'!!

Sweet Dreams Caleb

I LOVE THINKING THAT CALEB'S ANGEL FRIENDS AND FAMILY ARE ALWAYS WATCHING OVER HIM ESPECIALLY WHILE HE'S SLEEPING. BRINGING HIM BEAUTIFUL DREAMS OF RUNNING, PLAYING AND LAUGHING.

Caleb's new wheels!!

Caleb got his new Ottobock wheelchair/stroller and seating system. He looks so grown up in it. He is able to sit up with us at the dining table or sit on the floor and watch his brothers play. I can't wait for it to get cooler out so we can go for long walks. He will be able to see the world from a whole new view!!

Summer 2010

We decided to make a mini vacation out of our appt to Tampa to have a new ENT consult. My mother's neighbor works at Bush Gardens & he gave us 4 tickets to go. It was wonderful. I am always so scared to take Caleb anywhere, but it turned out ok bc it wasn't too busy. We had lots of areas where we could uncover Caleb & let him enjoy it too. It had started to rain a bit so we went to see the Elmo show until it stopped. The Sesame Street characters blew us kisses & came & loved on Caleb. Caleb LOVED it. Devin had so much fun riding the rides & just spending some time being a kid. We got drenched on the Congo..we laughed so hard...Devin was jumping around...he was so happy...we needed family time. We all took turns watching Caleb. On saturday we went to the beach along the causeway. The regular beach is too far from the hospital. Caleb didn't enjoy that much bc of the wind. Eventhough he was covered up in his playpen, he didn't enjoy it much. Devin got to play in the water for a bit but then we bribed him with dinner on the water so we could leave. He is such a wonderful boy. The people at the restaurant were so accomodating. I told them I needed to have a spot somewhat away from the crowd. They made it happen. Everything worked out perfectly..It was a fabulous weekend. We made a lot of special memories & I loved being there with my mom. GOD IS GREAT...ALWAYS.

Daddy's gonna get you

Caleb's getting cleaned up & ready for the night. Daddy loves playing with him. Caleb's new thing is rocking back & forth shaking his head. He will look out of the corner of his eye to see if you are coming :)

Getting a massage

Caleb is getting his relaxing massage before bedtime. We are working on his heightened sensory issues...he's doing pretty well. He is still really sensitive but he is getting more use to different touches.

Being fitted for my new wheelchair/stroller

Such a BIG day! Our DME from Gainesville came to fit Caleb for his new Otto Bock-Kimba Stroller and adaptive seating. I cannot believe we are doing this! I never thought that this day would ever come. He is getting so big, he's even starting to get his big boy face :) Having this new stroller/seating will allow him to be more social with others and for him to see the world from a whole new perspective. It will be great for him to sit and watch his brothers play, for him to do his playtime and therapies. I can't wait to get it. Hopefully there won't be any insurance hiccups! With God anything is possible....

Sweet sixteen birthday!

Happy sweet 16, Caleb!! These toys use to belong to a beautiful little girl, Brianna. Her mommy wanted to share them with Caleb and gave them to him a while ago. He is finally able to enjoy them..he smiles & laughs at them....another milestone. God is so good...always.

Caleb & Daddy Being Silly

Nothing like the love of a child to make a grown man act like a big kid. Daddy was just making noises when he noticed Caleb laughing at one of the them. Don't know why it made him laugh but it was hysterical. Caleb fully interacts with us. He is such a happy baby. Never in our wildest dreams did we think we would be sharing moments like this. God has shown us once again his miracles in life. THANK HEAVEN FOR DADDIES!!

FOLLOW UP: I got the whole story...daddy was playing Battleship with our other son Devin. Devin sunk daddies ship..so of course daddy being the big kid that he is had to make the sound of the ship going down! Caleb thought that was hillarious!

After Starting Lasix

Just got back from Cardiology appointment. All I can say is THANK YOU GOD!! Caleb's liver has shrunk back down. The left side of his heart is no longer enlarged & the right side has started to shrink a bit. His pulmonary hypertension is slightly lower. The words came out of the dr's mouth "he may be a candidate for heart surgery". I about fell to the floor. The look on the dr's face was priceless, never seen him so happy. We are still not there yet. We need to know why Caleb is still needing o2 & what is going on with his obstructions. Last thing we want is for him to be stuck on a ventilator. I am thrilled beyond words. And the Doctor continues to be amazed...all in GOD'S HANDS

We have to watch to make sure his lungs are not getting damaged from the blood that is accumulating in them. There is a balance with the heart doing well and the lungs may not be. We will have to make decisions on surgery if things start to change. We always pray for guidance.

Perseverance- Caleb trying to pull himself up

Watching Caleb work so hard to try and pull himself up brings tears to my eyes. The smile he gets on his face from accomplishing such small tasks is heart warming. I sometimes let things in life bother me....but when I see Caleb with such determination , it makes everything else seem so unimportant. He puts life into perspective. Way to go my son..you are amazing..and we are so proud of you!

Our First Vacation

We got to make some wonderful memories, one's we can cherish a lifetime. It is scary to leave our comfort zone..afraid of the unknown. But we have to live and allow the boys to be children. They have had to grow up way too fast. It was great for us all to play & be kids again. And for Caleb to experience things I never thought he would. There are no words that can express how great this vacation was. How perfect it all was. God I'm sending you a great big hug..just wait til' we meet face to face :) I love our family, nomatter what the future holds, the here and now is breath taking.

Celebration!

We had Caleb's 1st birthday party today at our church. It was amazing. There were so many people there to celebrate Caleb's miraculous life. Caleb was so cute in his little bow tie outfit. He knew he was the king of the party! We had a Noah's Ark bounce house for the older kids. We wanted Corey and Devin to not feel left out. They so often have to do without because our time is occupied caring for Caleb. They have been so loving and understanding. This party was for them to celebrate as well. Thank you God for Caleb and our wonderful family. We are blessed beyond words.

http://www.ocala.com/article/20100323/ARTICLES/3231003?p=1&tc=pg

Happy 1st Birthday!!!

What an amazing day..this time last year we were at the hospital waiting to see our precious baby boy..so uncertain of what was going to happen. We had family, friends and Pastor Mike waiting anxiously there with us. I remember being in the OR & all of a sudden hearing the most beautiful sound, Caleb's cry. Steven j...ust cried, looked at me & said "he's alive". He was so beautiful, so perfect. We were so anxious bc we kept wondering with each and every breath he took if it was going to be his last. But he fought with every bit of life he had. God has blessed us beyond words & today we are celebrating his miraculous first year of life. With God ANYTHING is possible. He has guided us & held us so tightly through this journey. He has brought so many wonderful people in our lives. I am so grateful to the other t18 families who we've gotten to know & love. Thank you to all our family & friends who have been right here with us..we love you all so very much. Happy Birthday my sweet Little Mouse

My Valentine's

We had a good time taking pictures for Valentine's Day. Caleb just thought it was a good idea to keep falling asleep!

My First Valentine's Day

He's stolen our hearts

A mother's heart

I guess today is one of those days....feeling sad, jealous, angry and guilty for feeling like this. I know I will have these days. I look at my precious baby boy and I wonder why I can't have a lifetime with him. I don't care if you ever walk..I'll carry you wherever you want or need to go. I don't care if you ever talk...I can look in your eyes or listen to your laugh or to your cries and know what you are feeling. I don't care if my every waking moment is spent caring for you as long as I can just have you to hold. People tell me that I should feel blessed because I've had more time with Caleb than I ever imagined. If you knew that tomorrow was possibly the last time you would ever see your child...would you be ok with that? I know I am blessed but I have a mother's heart and I want more tomorrows. You have hope that your child will live a long long life. My hope is to have one more moment. I'm not mad at God....I'm just mad. The bad days are hard but the good days are even harder...because I don't know why my son has to go through this. I know God will reveal that to me one day...maybe not this side of Heaven but someday. I can never kiss you enough my son, I can never hold you enough or smell your tiny little head enough. You are so precious to me and my heart aches because I cannot fix what is broken...but I promise you I will give you all the love that I have....you have stolen this mother's heart.

Happy 10th month Birthday

I can't believe that we are celebrating Caleb's 10th month birthday. He is absolutely amazing. I pray we have many many more. You are so loved little man...

I think Caleb was more interested in the ceiling fan!

Trisomy 18 ....

"Trisomy 18 is more common than muscular dystrophy, juvenile diabetes, breast cancer & cystic fibrosis. But because so many of these children are lost so very young, their deaths are often invisible."

http://www.youtube.com/watch?v=R0xutxBUzVQ

I am Mighty hear me ROAR!

sssshhh, you have to really listen to hear..it's sounds like he's tooting but he's growling. He has been practicing and is really determined. I'm so proud of him.....

Cuddle time

Just hangin' with Daddy......

Got my voice back

Caleb hadn't been feeling well and lost his voice because of a cold. I missed hearing him. But then all of a sudden he woke up and had so much to say. Listen til' the end...just when you think it's over..... :)