Caleb's Journey

Our Forever Valentine's

2012-01-13T11:46:00.001-08:00

I will look for you in all of God's beautiful creations, when the trees blow, when it rains, in our butterfly garden, when we see a rainbow and in my dreams. I will wait until we can be together again for eternity...you will always be my forever Valentine. I redid Caleb's Valentine video to include both of the Valentine's that he spent with us.

A special visit from Joey 2012

2012-01-09T15:31:00.001-08:00

Joey is getting so big. She reminds us so much of Caleb. Forever friendships brought together by the love of our beautiful lil' ones.

Caleb' first Heavenly Valentine's Day

2012-01-05T20:10:00.000-08:00

This is Caleb's 1st Heavenly Valentine's Day. We use to decorate a tree each holiday/season for Caleb..he loved lights. Now we decorate his special areas. Especially his Memorial place (it is a memory box & urn, the urn is in the bottom of the case. I love it because I can decorate it and make it extra special). He's always with us

Remembering 2011

2011-12-31T22:22:00.000-08:00

We had a good night having a picnic in the middle of the living room, watching Gomer Pyle movies and then lighting off some fireworks. Daddy bought a bunch of fireworks to make this New Years extra special for Devin...the whole night was just for him...whatever he wanted to do. Corey was visiting with his mother this New Years. Wish he was able to be here with us, but we can do it again next year :)

It seemed like it was just yesterday that we were celebrating New Years....one with our Caleb. It's hard to imagine that he has been gone for 4 months. Caleb was so missed this holiday season...but then again he is missed everyday. Not a moment goes by that he isn't thought of. I have heard from many people that they wish me a better year this year. And I know that they say this because they care for us and want the best for our family. But I truly loved last year. Even with Caleb passing away. There were so many wonderful moments. He celebrated his 2nd birthday, we went on vacations, we took walks, snuggled, and just spent time loving and laughing with each other. I wouldn't trade one moment. And even during his last moments on this earth, as I laid my hand on his chest feeling every breath he took...I wouldn't wish that moment to go away...I'd do anything to have that moment again..to have that last nap. We cherished every moment and even through the heartache, we had many blessings, many memories, so much happiness. May God Bless all my family and friends, keeping their families safe, healthy and blessing them with wonderful memories to last a lifetime. Cherish each moment, they are too precious. Happy New Year!!

Christmas Eve...missing our sweet Caleb

2011-12-24T20:56:00.000-08:00

Today has been a very tough day. I think it has really hit me that Caleb won't be here with us this Christmas. I just couldn't stop crying. We went to Christmas Eve service at church. I couldn't breathe. I remember Caleb moving to the music last year...doing his very best Stevie Wonder. I loved sharing these beautiful moments with Caleb, with our family, with our friends. I cried through the whole service, but that was ok, because I was surrounded by so many people who care for us & love us. They have walked beside us in our journey. We are so Blessed with the gift of family and amazing friendships. There are so many heavy hearts this season. So many lil' ones gone too soon. I pray for all these beautiful families. God Bless you all......

Philly Trip: "You Are My Sunshine"

2011-11-22T20:20:00.000-08:00

During our speech in Philadelphia, we mentioned how Caleb was surrounded by friends and family before he went into the arms of Jesus. We sang "You are my sunshine". Our son Devin, use to sing this to Caleb so often. After we were done speaking, Gianna Jessen, who was also speaking at the Pro-Life Conference asked if she could sing this song in honor of Caleb. We were so touched and happily said "OF COURSE :)". Gianna's story is absolutely amazing too. She is a beautiful person with the sweetest spirit. Danielle Rose, who travels the world as a Music Missionary joined Gianna in singing.....what an honor it was to have these Godly women sing to our precious son Caleb. They are the kind of women that you want to hang out with....always. Getting to know them brought us so much peace and healing. There aren't enough thank you's to express how much it meant to Steven and I.

"........ coming from an orphan's background, it was the most amazing thing to watch a father weep for love of his son. i have never seen that, we hugged each other." This is part of a post that Gianna made on her page that day. We cannot express how much this meant to Steven. Often father's are left in the background and people forget that they hurt too. Thank you so much Gianna.

Philly trip: Speaking at the Pro-life conference

2011-11-22T20:16:00.001-08:00

Steven & I were asked to speak at a Pro-life conference in Philadelphia. We were honored to be asked to be a part of such a wonderful event. However, we weren't sure that we were ready to make this trip. It is still so new in our grieving for our precious son. But when we saw the title of the conference we knew that this could only be orchestrated by God "Born This Way? Made This Way...Wonderfully (Psalm 139)" Psalm 139 is what we used in all of Caleb's parties, Celebration of Life, etc. And how often are you asked to go across country to speak at a conference, especially by a caring and compassionate Dr.? So we did. We met some of the most amazing people. I would like to think that this conference was about making a difference in other people lives...and we pray that we touched even one person. But I truly think this was more about us this time. God knew we were struggling in this part of our grieving process. Lots of doubts, lots of questions and a lot of saddness. He brought these amazing people into our lives that were part of the conference...it was like God brought them together and we were surrounded by this huge hug. For that we are so grateful. I have much more to write about...so much more to share...but for now I will share the video of us speaking. I will tell you that I had this whole speech prepared in my head on what to say...but before we went on, they played the video of Caleb. Steven & I lost it. So when we went up to speak, I just had to throw everything out the window and speak from the heart. It was so hard because our hearts are still in a million pieces.....but we also knew we were surrounded by so many amazing people that were there to support us...and each other. I am especially proud of Steven for getting up and speaking....this I know was hard for him. But he did a beautiful job....I am blessed to be walking hand in hand with him in this journey. We continue the healing process. I will write more on our experiences on this trip...sharing more videos & pictures. We are so incredibly blessed.

2011-11-12T19:05:00.001-08:00

I got his in the mail today from Caleb's buddy, Lane (35 months old, also has trisomy 18). I LOVE IT. The Caleb Bear is the same weight as when Caleb was born... 6lbs 5ozs. It came with a cape and blanket. I cried..it was like snuggling with Caleb again. I'm going to snuggle with him tonight. He is in the crib right now. Who knows I may just jump into the crib with him!!! The bear was made by another special mommy Katie Weaver. Thank you so much Alisha and Katie .....I love you

My first dream of Caleb....

2011-10-08T19:24:00.000-07:00

Last night I had a horrible nightmare...I kept screaming "no" & hugging Steven. I don't remember what it was about but Steven said it lasted a while. I do remember the feeling of panic. I fell back to sleep. Then in the morning I had another dream...this time I remember so vividly our sweet baby Caleb. He was smiling soooo big & sitting on daddy's lap...but he was breathing hard & could see his chest pulling with each breath. I felt like he was saying to me that he was alright. His big smiles always gave me so much hope that everything would be ok. He was absolutely perfect to me...I never focused on his ailments....always celebrated his achievements & milestones. But he did have some issues & he was reminding me of that....that he put up such a great fight. He did so well & overcame things that just amazed me. But now he can rest & I have to find comfort...peace in that somehow. We are so proud of him & love him so very much. I know satan is trying to steal my peace & fill me with doubts & saddness. I won't let him do it....I will fight, my son taught me how :)

Being Strong?

2011-10-04T09:42:00.000-07:00

People often say that I am so strong.....I really am not. I wonder from moment to moment how life will go on. How do I find joy in my life. Will there be a day that I don't feel like this? I have so much to be grateful for. I had my son for 2 1/2 yrs. I knew his life would be short....but it is still not easy. I miss him more and more each day. It gets harder with each passing moment...not easier. I don't want sorrow or pity...I want a bandaid sent from Heaven...I want to not hurt so incredibly bad. My son brought us so much laughter, love & happiness...so what is it that I want? Would it have been easier if he had a hard life?? Of course not! So where are the answers...what am I trying to find? I look at this world so differently now. This isn't my home...just a rest stop. I want to feel like I use to. So abundantly Blessed. Selfish, I know. Grief is such a strange thing. I find myself missing things that just don't make a lot of sense: I haven't been to the grocery store since before Caleb went into the hospital. When I use to go to Publix after Steven got home, it would be my quiet time. I would go shop, call when on my way home, walk in, see Caleb sitting with daddy & just smile. It was my routine. I miss the hospital, the dr's & the nurses. I can't go toward Gainesville because I start having anxiety. I miss parking in handicap spaces...not because of conveniences...but it meant I had a really special baby on board. When I leave the house my anxiety level goes through the roof...I want to be at home...where I had been for 3 yrs. I don't know of any place more important to be than at home and caring for my son. I don't need fancy clothes, glamorous hair, or a night out on the town. But I guess I need to learn how to be a wife and mother again. Strange huh?? Eventhough, I know I feel like I'm the only one going through this, I know that I'm not..there have been those who walked this road before me, with me & will go through it after me. I pray for joy, laughter, love & life....not only for myself but for everyone around me who is also grieving. I miss my son...I miss his smile....there are just no answers...just time I guess, I pray.

Caleb's Life Story by Jacqui Janetzko

2011-10-03T20:11:00.000-07:00

Thank you to the Ocala Star Banner for telling Caleb's story. Especially Jacqui Janetzko & Marian Rizzo, for telling about his journey. And that of his precious trisomy friends. It brought so much awareness about t18. Caleb is missed so much, because of your stories, we can continue to celebrate his beautiful life and show that our children are such a huge part of our families, friends & community. Much love and appreciation from our family.

Letter to my beautiful son..I read this at his Celebration

2011-10-02T06:24:00.000-07:00

Dear Caleb,
I remember the day I was getting ready to head to the hospital to meet you for the first time & I was talking with God. I had prayed to have a couple of moments with you...to hold you. Then I got up the nerve to try & renegotiate with God, & asked Him for 2 hours. And if that was not to be His will, to please hold me and our family so tight to handle whatever may come. Never in my most wonderful dreams did I think I would have 2 1/2 years with you. I got to watch you grow into this amazing lil' boy. So full of life, never knowing your earthly body was broken...because your beautiful spirit shined brightly. Your smiles were infectious....no one was safe from them....they would instantly smile with you. I loved waking you up every morning with a "hello sunshine", laying you on your blanket, turning on your tree, then your cartoons...we had our routine. I loved our naps, I would lay my head right next to yours so I could feel your breath with mine...we were sharing one breath. I loved nibbling on those cute little toes...they were so perfect.... I loved taking care of you my son...I would've done it a lifetime...I am so honored that God chose us to be your parents...your big brothers will be looking for you everywhere...in the garden, in a rainbow, in a dream...so please watch over them. I wouldn't change one moment.... I would do it all over again. You have brought so many wonderful people into our lives. You've shown so many people how to love...how to live...."You've made God famous" I am so incredibly proud of you with all that you have done in the short life you have been here with us. I could go on and on, you have given us so many wonderful memories. I could sit and talk forever...I promise you that I will continue to tell your story to help others & just to make me smile. But there is one more thing I have to say...I want to thank you and God for giving me those last moments with you. When we knew it was close for you to be going home...as I layed next to you...I asked for one more nap with you...we wereso tired. All of a sudden as we layed there your sats went higher than they had been in days & as I held you in my arms I could feel you become warm again, you opened your eyes for the first time in so long...they looked beautiful and you rubbed your nose as you always did. We layed there for a while....until it was time for you to go from our arms into the arms of Jesus. I will never ever forget that moment & I am so incredibly grateful for that moment.I love you my beautiful son....

Caleb's last week with us

2011-09-28T07:22:00.000-07:00

I AM WRITING THIS BECAUSE PEOPLE HAVE BEEN WANTING TO KNOW WHAT HAPPENED. THESE ARE VERY PRIVATE & PERSONAL MOMENTS. WE ASK THAT ANYONE WHO READS THIS, PLEASE BE RESPECTFUL OF OUR DECISIONS, WISHES & FEELINGS. THANK YOU TO ALL WHO HAVE WALKED WITH US DURING CALEB'S AMAZING JOURNEY. I NEEDED TO WRITE THIS SO I CAN ALSO MOVE FORWARD.

Caleb went in on August 18th to have his tonsils and adenoids removed. He was also going to have a bronchoscopy & endoscopy done. We had to cancel this surgery several times over the past year because he wasn't at his best to have it....UTI, platelets, etc. Finally the day came to have the surgery & he was starting to have more difficulty breathing at night. Steven & I knew that going under anesthesia was a big risk, so we talked in great depths with all his dr's & anesthiologists on our concerns & to give him the best possible chance he could have. Just a side note, Caleb did really well during the days and at night only needed blow by oxygen. He had had approx 6 sleep studies to determine the severity of his obstructive apnea. He would have approximately 49 episodes an hour.....extremely severe. Rarely would the monitor ever go off. An in depth sleep study is necessary to determine true apnea.

The day of surgery, I snuggled with Caleb in the bed in pre-op while daddy sat by our side. My parents and our other boys sat in the waiting room. Doctors were in and out discussing & preparing for surgery. We all felt it was time to do this surgery. Without it, his body would continue to decline bc apnea at this level puts a strain on the heart, lungs, etc. Shortly after 8:30 he went off to the OR. We waited with family in the waiting room....impatiently. Jacqui, with the Ocala Star Banner, was in the OR for the majority of the surgery, documenting this part of his journey. The surgery took about an hour 1/2 & I got calls from each of the drs saying he did really well & was going to recover in the OR....someone by his side at all times. They always took extra good care of him. He was extubated fine...looking around, resting. His endoscopy looked great & so did the bronchosocopy. The main problem with his airway was the small jaw that sits back (like most of our babies) At approximately 2 1/2 - 3 hours later his heart rate went to 225, his blood pressure and o2 sats stayed fine. His EKG showed he was having a myocardial infarction (heart attack). They had to reintubate him. We were not told of the MI until after they brought him to the PICU. The Dr's wanted to make sure that is in deed what he had before saying anything to us. It just didn't present as what they "normally" see. Two yr olds just don't have heart attacks...usually. Our hearts just sank. They told us the left side of his heart wasn't squeezing & that they decided not to do a heart cath bc he couldn't handle any more sedation/anesth. I am SO glad that they didn't. The treatment would've been the same anyway. We also found out that they didn't remove the tonsils bc they were hardly even there?? That was a surprise & a blessing. It meant an easier time reintubating & less source of pain & infection. We were prepared to be there at least a month. They brought in so many pumps for meds...rows and rows of them. We knew this was going to be a long process, a huge fight for our lil' man. We fought right along with him. Sleeping together on a small chair bed...waiting for him to wake up. He was having s t depressions on his ekg which meant that there was damage to the heart. They monitored those closely & we waited for each result to show they were going down. PTL, they were improving, his blood gases were great, they were weaning him off meds, his platelets were fabulous...we all celebrated cautiously, we didn't even share this with anyone bc we knew we were still in a critical situation. We talked about getting a trache to help him get off of some of the meds bc he was blowing through them like tic tacs. And he needed to not work so hard so his heart could heal. Steven & I felt comfortable with that. We were now waiting for him to get to a point where he could undergo this surgery. One evening when Dale, the night nurse came in & asked "where's his s t depressions?" Steven & I were confused. Dale hurriedly changed the probes & went back to look at the paper tapes of his heart rhythms for the last 24 hours. Sometime around noon that day, there was about a 3 second gap where the s t depressions just disappeared. Dale said he had never seen that happen before and Steven said " write GOD in that time period". We were over joyed...cautiously.

There was a brief period that Caleb opened his eyes and daddy got to read him a book...Caleb watched & listened...this was the last time we got to see our baby boy interact with us. He started having trouble keeping his o2 sats up and they had to keep bagging him. His sats would come up briefly...the time inbetween started to become shorter. That sunday he had a seizure. I suggested that maybe he was having seizures & that's why he couldn't keep his sats up. The medical staff was just as baffled...they were willing to look at anything and was going to have him hooked to a 24 eeg the next day. Monday morning the 29th of August, he just couldn't keep his sats up. Christina his day nurse tried so hard to help him through his discomfort. She had to call a code bc his o2 sats went down to the 20's. They bagged him yet once again & gave him some meds to get him back up. I knew it was time to call the family. I couldn't breathe. Our Pastor, friends, family, Pediatrician, all came to be with us. The cardiologists, other dr's told us he was having pulmonary hypertensive crisis' and they were going to start nitrous oxide to help open things up. He shortly after went into another crisis where his o2 sats were at 0. I about fell to the floor & the air was knocked out of me. We asked them to silence the alarms and give us our time.

I crawled into the crib with him we were surrounded by everyone & his pediatrician started us in singing You are my sunshine....I just couldn't let him go. I wanted my baby back. But I knew he was tired. His o2 sats couldn't stay up. They were dangerously low..the machines were keeping him alive. He was cold so I snuggled into him even more. I talked to him and told him how much we loved him & how proud I was of him. That it was ok to go Home. For him to please watch over us, to keep mommy going..to keep our fight up. We were so tired. I asked God to let us have one more nap together. All of a sudden his o2 sats went to 91, the highest they had been in days. His eyes opened briefly and they were as beautiful as I knew them to be..not the red, dazed look he had had. He rubbed his nose, his usual quirks...and we napped briefly. After a while he closed his eyes, his sats went back down and stayed at 20 for a long time. My baby was gone. It was time to say goodbye bc Jesus was already holding him tightly in His arms.

Dale, our nurse was so wonderful. He handled everything. He had them come in to make molds of our son's hands, the foot was done prior to him passing. He put it in a beautiful box. He helped Steven bathe Caleb one last time and even held him & cried. Caleb touched his heart, even in the short amount of time he knew him. Caleb was so very loved.

I see God's hands guiding us through this whole experience. People have often asked me if maybe we shouldn't have done the surgery. He would've struggled without it...we believe the episodes he was having the last couple of months prior to surgery were ph crisis'. I think God once again placed us where we needed to be, together with our son to be with him as he was called Home. If this had happened at home by myself or with the kids, it would've been devastating. We don't have all the answers...but I guess that is what walking by Faith means. We have to make the best decisions we can with the information we have. We knew Caleb's ph wasn't good and something had to be done. Heart surgery wasn't an option bc of the obstructive apnea and ph. If we had done nothing I think we would've been filled with regret.."what if only".

Pulmonary hypertension is something that many of our children have but isn't discussed much in info about t18/t13. I want to bring more awareness to the issues of obstructive airway issues (determined by sleep studies) and pulmonary hypertension. I think that Caleb had a good life bc we had such proactive and compassionate drs. Sometimes the best that we can give is comfort care bc there is nothing more that we can do. That doesn't mean we don't fight for our children. It just means that we understand that there are some things that are out of our hands & we have to feel blessed by what we are given. It is hard. I miss him more than you could possibly imagine. A part of me is forever gone...but I am so grateful that God held us through this. I pray for each and everyone of my friends that are walking this same journey. I am here for you if you have any questions. I will answer anything you would like. There are several things I have left out bc of the details...but will talk in private. I love you my son...you have changed my life....I will see you again one day.

M.O.M.S grand opening

2011-09-26T06:54:00.000-07:00

Memories of Missing Smiles had their grand opening today. It was amazing...a beautiful place for us to remember our lil' ones. We bought a Caleb tree by the water fall so we can go and picnic and share special moments. I can't wait to decorate his tree with some pretty flowers.

2011-09-23T16:15:00.001-07:00

This video was done by a dear friend of ours, Michael Robinson. Thank you Michael..it is beautiful...perfect.

...we'll always celebrate you

2011-09-20T17:26:00.000-07:00

The 20th of each month won't be celebrated by birthdays anymore. God is holding you now. But we will forever celebrate this special day by remembering the amazing life you lived and all the joy you brought us. You even brought us the rain.......

Celebration of Life

2011-09-18T17:58:00.001-07:00

We wanted to be able to share Caleb's Celebration of Life with all our friends and family who were not able to attend in person. It was an amazing service, we truly felt like it spoke of Caleb's life perfectly. I want to thank Pastor Mike Austin and our CenterPoint family for making Caleb's day so incredible...indescribable. And for everyone involved in making this download possible so we can share. Thank you Dr. Kern's (Caleb's Pediatrician) for giving such a beautiful eulogoy for Caleb, he truly loved you...he had no doubt of the depths you would go to for him. Susan, your words spoke volumes for our T18 family...for Caleb....thank you. Thank you to everyone who made Caleb's Memorial so special...a day fit for the Mightiest of Mouses....we love you all. We love you son. You are missed more each and every day.

We also have a copy of the slide show that was playing on the back screens...I will try and get that up soon.

Our Special Necklaces

2011-09-16T20:14:00.000-07:00

We bought necklace urns so we can always have a small part of our son with us wherever we are....close to us. Our boys wanted to get a way this weekend & it's breaking my heart that Caleb cannot be here laughing with us. But I know he will be watching and playing right along with his brothers from Heaven. And I have a lil' part of him to hold when the tears just don't want to stop falling. Pastor Mike also said a Blessing over our necklaces last night. Oh, I almost forgot...when we pulled into the parking lot of the hotel tonight it started to sprinkle..it has been clear and dry all week. My lil' one must've been saying hi :) Goodnight sweetness....I'll meet you in my dreams....love you.

Caleb has come home

2011-09-16T19:39:00.000-07:00

Caleb finally got to come home. We thought it would be really hard, but there was actually an overwhelming feeling of peace. We had never been apart from him that long and it was so comforting to have him with us again. I was able to hold him close...to love on him. Then Pastor Mike came over and prayed over Caleb & our family, as Caleb's earthly body was to be put to rest in our home. We had family around us, it was a beautiful moment. We shared memories, we cried, and we laughed. Thank you Pastor Mike for all that you do to help our family find peace in such a difficult time. A dear friend of mine, Chontee, will be helping me sometime next week to decorate Caleb's Memorial Cabinet...I can't wait to make it look as beautiful as he was...always will be.

My Caleb's work isn't done.....as he showed me today

2011-09-14T18:50:00.000-07:00

During Caleb's last moments I layed next to him & told him that he needs to make sure to come down & give me a swift kick in the bum every now and then. That we still had work to do & I can't be laying around crying....(eventhough I could probably fill an ocean with all the tears I've cried lately). We've been working so hard at advocating for special needs children on the medical & financial aspects of life. So we chatted a while & I know he was listening....eventhough there was no sign of him being a part of this earth anymore. Well, this morning I got a call from a gentleman with the FL House Health & Human Services Access Committee in Tallahassee. He said that one of our Representatives that we have been talking with contacted him about Caleb's story & what we have done these past 2 years in trying to make changes. We talked for quite some time about the lack of services there are for children & families like ours, etc. He said that he would like to talk more & I asked if I could call in a couple of weeks...need to try & pull it together. He also asked if I would be interested in going to Tallahassee to tell our story & talk about what changes we think are needed. Of course!!! I was so glad to get this call today. That's my Caleb giving me a swift kick...telling me to get moving. I so miss & love him...I pray that I can continue to do his work and make him proud.

Sent from Above

2011-09-11T18:43:00.000-07:00

I've been having a really hard time these last couple of days. Just can't stop crying. Steven goes back to work tomorrow & I think that has lead to some of my tears....I'm going to miss having him here with me. He has been right by my side crying with me...and sharing moments of laughter, remembering our precious lil' boy.

This morning we went outside to have our coffee. I sat next to one of our penta plants. It was beautiful out. Tears just kept falling. Suddenly a beautiful monarch butterfly landed on one of the flowers. He hopped around from flower to flower for about 15 mins...never leaving my side. We chatted for a while...I was telling him how beautiful & perfect he was. Then he started flying in circles around me then flew off as I stopped crying. I had my hand laying flat on my chair & a small butterfly landed on the palm of my hand. It stayed there for about 5 mins & we chatted too. I wondered who had come to visit. Was it one of Caleb's friends or family members coming to let me know he is ok? I'm going to believe that it was :) Then I started crying again as it flew away. Suddenly the monarch appeared again next to me in the penta plant. We sat a lil' longer ...now daddy & I were both crying....but tears filled with some joy. We believe Caleb is around us always.....our hearts still hurt to not be able to hold him..but God sends us lil' gifts that bring us a touch of happiness. Love you so much Caleb...can't wait to see what tomorrow brings.

These pictures are from his Celebration flowers I took today...wish I could keep them forever...they were so beautifully done.

Just a hard day.....

2011-09-08T19:53:00.000-07:00

Today has been a really hard day. Steven & I got up & started working in the butterfly garden. It was full of butterflies, the wind was blowing & the sky was blue. I knew Caleb was with us...bringing us all of these beautiful things. I just wished I could be holding him watching the trees sway & the butterflies buzzing by us. Steven & I ran a couple of errands and I just couldn't stop crying. He just held me. He is such a wonderful husband...I thank God for bringing him into my life. It's nice that we can be standing in the middle of Walmart just holding each other & crying...like there's no one else in the world :) I need to write about Caleb's final days...but right now is too hard. I will soon...

Caleb's Memorial -Ocala Star Banner News Article

2011-09-07T09:36:00.000-07:00

http://www.ocala.com/article/20110907/ARTICLES/110909767?tc=ar

After celebrating his 29th month of life, Caleb dies at area hospital-News Article

2011-08-30T09:45:00.000-07:00

http://www.ocala.com/article/20110830/ARTICLES/110839970

I'm a big boy now, I'm learning to stand :)

2011-08-07T17:09:00.000-07:00

Caleb got his new stander and is doing really well in it. He seems to enjoy it and is interactive with what is going on around him. It brought me to tears just watching how well he was doing...achieving things that we never that he would. God you have blessed us beyond words...

Lovin' the rain

2011-08-01T18:17:00.000-07:00

Caleb loves to listen to the rain. When we are in the car he laughs as the rain starts hitting the window. He loves listening to it fall on the skylight...but most of all...he loves feeling it fall against his face. He reminds us to take a moment, put on our comfy pj's & dance in the rain.

Caleb goes to the movies!

2011-07-24T22:07:00.001-07:00

I haven't updated in a while. There has been so much going on. I will fill in the spaces later...but for now I wanted to share a special time we had taking Caleb to the movies. It's the lil' Blessings that mean so much......And Caleb certainly loves his movies....something we never thought we would be able to do with him. Caleb continues to amaze us...each and every day.

Make an on-line slide show at www.OneTrueMedia.com

Caleb's Birthday Vacation

2011-03-24T15:13:00.001-07:00

Make an on-line slide show at www.OneTrueMedia.com

Trisomy 18 Awareness by the Ocala Star Banner

2011-03-23T07:19:00.000-07:00

Caleb's 2nd Birthday Celebration!

2011-03-14T15:24:00.000-07:00

Make an on-line slide show at www.OneTrueMedia.com

Very Special People

2011-03-09T19:13:00.001-08:00

Angela & Ashley (t21 - Down's Syndrome), Chontee & Brianna (deletion of the 7th chromosome - so rare there is no other name for it), Lisa & Joey (t18 - Edward's Syndrome), Julie & Taylor (t18 - Edward's Syndrome), Susan & Rebekah (t18 - Edward's Syndrome), Me & Caleb (t18 - Edward's Syndrome), Gilianny & Noah (t13 - Patau Syndrome - Noah was right next to Caleb in the NICU when they were born. Noah is one day older than Caleb)

We were so incredibly blessed to have these beautiful families there to celebrate in Caleb's special day. God has brought such amazing & loving mommies & daddies into our life. I thank God for them everyday.

Remembering Caleb's Angel Friends

2011-03-05T20:50:00.000-08:00

We had a balloon release at Caleb's birthday party to remember all of his friends that have been called Home too soon. We know that they were all looking down and celebrating right along with us. It was a beautiful day. Always with us.....always loved.

Make an on-line slideshow at www.OneTrueMedia.com

Caleb & Rebekah

2011-03-03T18:36:00.000-08:00

My friend Susan and her daughter Rebekah came to visit us for Caleb's birthday party from SC. They arrived on Thursday night and was able to stay until Sunday....wish they could've stayed longer. It was so nice to have them here. We had fun chatting, playing & taking lots of pictures. Rebekah is 1 month younger than Caleb and has t18. She is just beautiful & she was mighty "friendly" with Caleb. I don't think he minded though.

Sleep Study 5

2011-01-08T19:26:00.000-08:00

Having another sleep study since Caleb suddenly got off o2. We will decide if we need to reschedule his surgery for the removal of his adenoids. He had a lot of sleep apnea and we will see what it is like now. Caleb is being pretty sassy :) He is 21 months old and has full trisomy18

New Year's Eve!!!!

2010-12-31T14:09:00.000-08:00

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

Christmas 2010 News Article

2010-12-27T18:29:00.000-08:00

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

2010-12-22T19:38:00.000-08:00

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

2010-12-21T06:17:00.000-08:00

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!!

2010-12-02T20:08:00.000-08:00

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

2010-11-15T19:49:00.000-08:00

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

2010-11-07T03:20:00.000-08:00

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

2010-10-31T19:25:00.000-07:00

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

Graduated From Hospice!!

2010-09-30T08:50:00.000-07:00

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

2010-09-12T11:18:00.000-07:00

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

2010-09-06T11:16:00.000-07:00

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!!

2010-09-02T12:59:00.000-07:00

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

2010-08-08T16:17:00.000-07:00

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

2010-08-02T17:00:00.000-07:00

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

2010-08-01T18:01:00.000-07:00

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

2010-07-22T13:24:00.000-07:00

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!

2010-07-20T10:46:00.000-07:00

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

2010-06-16T17:37:00.000-07:00

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

2010-06-02T12:17:00.000-07:00

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

2010-05-28T12:03:00.000-07:00

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

2010-04-19T11:49:00.000-07:00

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!

2010-03-21T07:25:00.000-07:00

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!!!

2010-03-20T07:21:00.000-07:00

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

2010-02-12T18:30:00.000-08:00

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

2010-02-12T16:08:00.000-08:00

He's stolen our hearts

A mother's heart

2010-01-26T09:40:00.000-08:00

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

2010-01-20T18:17:00.000-08:00

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 ....

2010-01-20T18:15:00.000-08:00

"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!

2010-01-20T13:55:00.000-08:00

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

2010-01-17T19:35:00.000-08:00

Just hangin' with Daddy......

Got my voice back

2010-01-17T13:28:00.000-08:00

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..... :)

Caleb's 1st Christmas

2009-12-25T14:04:00.000-08:00

I can't even express how incredibly happy we are to have Caleb here to share Christmas with. He is our Christmas miracle. The boys were so excited to open presents with their brother. I can never thank God enough for allowing us this time to be with our son. I never want this moment to end.

Steven got me the most incredible gift...it is a huge portrait of Caleb. He is the best husband..the best father. He just lit up being with his boys...the love he has for them is breath taking. We have made memories that will last a lifetime......Merry Christmas

Christmas Eve

2009-12-24T20:41:00.000-08:00

We went to Christmas Eve Service tonight. I was recalling that this time last year we had just recently found out about Caleb having trisomy 18. We couldn't hold back the tears during the service. Our hearts were broken thinking we would not be able to have our son to hold. This year we were crying because we are overcome with so much joy. We are so blessed to be celebrating Christmas with our son Caleb and for his brothers to be able to create such priceless memories with him. I cannot thank God enough for the wonderful gift he has given us...each and every day. After church some family came by and we opened gifts. Before going to bed the boys put out some reindeer nip, & cookies & milk for Santa. We heard Santas bells and quietly looked out the bedroom door. Santa (f-i-l) put out gifts and with a ho ho ho went on his way. Now I am ready for bed....I'm sure it wont be too long before I'm awaken by excited little ones. Merry Christmas to all!

Happy 9th month Birthday

2009-12-20T18:41:00.000-08:00

Caleb was suppose to have pictures done today and a special lunch. He hasn't been feeling well so we had to cancel. We received a beautiful birthday cake to celebrate with. Thank you Michelle & Shannon. We are pretty concerned because Caleb just hasn't seemed himself..very lethargic. Praying my baby feels better soon.

New Toys & Peek-a-boo

2009-12-05T18:16:00.000-08:00

Caleb got a new toy for Christmas. We aren't waiting to give him all of his presents until Christmas. We want him to enjoy them little by little....make Christmas last a little longer. It is hard to find things that are appropriate for his special abilities. But he loves his new colorful ring. He brought it up to his mouth once. Then he started playing peek a boo with daddy. He would bury his head, look out the corner of his eye and then turn his head back up to look at him. It was so cute. Devin had also given him a stuffed monkey the other day. It is perfect for his little hands.

Meeting Taylor

2009-11-30T20:06:00.000-08:00

We went to St. Augustine to meet up with another family whose son, Taylor, also has trisomy 18. Taylor is 19 months old and is amazing. Julie, his mother, and I have become very good friends. We are so blessed to have been able to meet them in person. It is so nice to know that we aren't alone and have each other to lean on. They also have two other boys who got along so well with our boys. It was so funny to see Caleb and Taylor feed off of each other. They are truly connected. Friends forever. I hope that the medical profession can see all of our stories and realize that these children ARE compatible with life. They laugh, smile, love and feel. Taylor can even give hugs!! That was the most touching moment when I saw him give his mommy a hug. Caleb & Taylor acknowledged each other...they get it. I love them both so much. I love all our precious t18 babies. Their life matters, no matter how much time they have with us...they have a huge impact on our lives. They are "compatible with life".

First Christmas Lights

2009-11-29T19:52:00.000-08:00

We went down to the downtown square to see all the Christmas lights. Caleb loves bright lights so he was just so excited. It was really nice to get out for a bit to enjoy the beautiful lights, wonderful weather and great music. There were christian bands playing..it was a perfect evening.

Facing our own Giants

2009-11-28T19:29:00.000-08:00

Watched "Facing The Giants"...again. I love this movie because it reminds me of how much God loves us. It is a testimony to His faithfulness to us and a reality check on our faithfulness to Him. I was reminded of how it took many many years for me to have our son Devin. I had given up when I was told that I would probably never be able to have children. But God had a different plan. How tremendously blessed we are to have our beautiful son Devin. Then once again we were faced with not being able to conceive. And once again after several years God surprised us again. Our precious son, Caleb. We still feel so blessed that we were chosen to be Caleb's parents...even if that meant for only a short while. Every moment with our children is more than we had ever expected. Things can seem unbearable at times but I know God is there to carry us. I have learned to love my children more than I ever thought possible, to hug them even harder and more often. We will love God in good times and in difficult times. He constantly shows us He is with us. Today while eating lunch, I looked over at Caleb who was sitting in his swing. He was watching his animals go round and round. Then I saw him reach for one of them. I yelled for everyone to look, then the tears just started pouring down my face. My mom was overwhelmed with happiness. Steven started snapping pictures and the boys got to see their brother acheive something we never thought would be possible. It was another milestone showing with God.... anything is possible.

Thanksgivng

2009-11-26T19:04:00.000-08:00

There is so much to be thankful for this year. I just can't believe that we got to celebrate Thanksgiving with our precious Caleb. We had a small celebration with just us and my father and mother. We also got a surprise by my sister in law who came down from NY. She hadn't seen Caleb since he was born.

I saw this saying on a friends post and I think is says it all. "With you in my life, the music plays longer, the stars twinkle brighter, and Heaven doesn't seem so far away." I see a little piece of Heaven whenever I look into Caleb's beautful blue eyes. Thank you God for my wonderful family. Without them this would be unbearable. And thank you God for the amazing friends you have brought into our lives. But most of all, Thank you God for walking with me, with us, on this journey.

"Daddy"

2009-11-15T09:57:00.000-08:00

Caleb was having such a good night laughing and cooing. During one of his vocal moments...he said "daddy". Whether he meant to say it or not isn't important...the look on daddy's face was priceless. He was beaming. My dad was here as well to witness it. Confirmed...it was "daddy". Now Steven is relentless to get him to say it again :) I love it.

Cpap/bipap study

2009-11-13T09:53:00.000-08:00

Caleb went in for his titration study. He tolerated his mask for about 2 hours then he started screaming. The rest of the night was really difficult. He didn't breathe well at all. We were up with him all night. Monday we will get the results.

Halloween 2009

2009-10-31T13:28:00.000-07:00

I am so amazed that I am even posting this. We made it to Halloween! Never in my wildest dreams did I think that I would be dressing up the boys to share moments with their baby brother, Caleb. We had such a good time going to Coon Hollo Corn Maze, The Pumpkin Patch and of course trick or treating. We made some wonderful memories and I don't think the boys will ever forget how absolutely adorable their baby brother was as Master Yoda. Our children are our world. They are precious and I thank God everyday for them......

A day of reality

2009-10-21T09:58:00.000-07:00

Caleb has been having issues with his oxygen levels being low and I noticed that his heart rate had gotten really low, in the 60's. That is something I hadn't noticed before. I called the cardiologist and pulmonologist to see what I needed to do. Caleb's pulmonologist felt like we really needed to see about getting him on a cpap or bipap. But we first had to get him use to using a mask. That in and of itself is going to be a major feat. Her concern is that she knows that Caleb stresses out so badly that he causes himself to crash. So the options are to either get him use to using a mask or let his respirations slowly get worse. Not an option that we like. So daddy is trying to figure out a way to get more oxygen to him without a mask. Maybe tenting the one end of his crib.

I spent the day loving on him, playing with him, taking pictures and videos. I couldn't stop laughing and crying. Devin got to go spend the day with his friend Liam. It was good for him and it was good for me to have some alone time with Caleb. These days of reality checks are hard. I just love my boys and the thought of losing either of them just rips my heart apart. I know the reality with Caleb I just don't like it when it slaps me in the face.

Mommy & Caleb Time

2009-10-21T09:52:00.000-07:00

We got to spend some alone time together, it was wonderful. Thank you God.

New Crib

2009-10-07T18:14:00.000-07:00

Two very wonderful people gave us a brand new crib for Caleb. They had wanted to do something for us when Caleb was born regarding baby furniture. Because we thought that Caleb would only be with us for a short while we decided to not get any furniture. He would stay in a bassinet that was just his size. Now that Caleb has amazed us all and is 6 months old, it is time to move up into a crib! What an awesome milestone. He loves his new sleeping arrangements. Thank you so much for the amazing gift. I love looking over at him sleeping, he's such a big boy. He's also surrended by pictures of all his little friends & angels.

Applesauce

2009-10-06T18:03:00.000-07:00

We were so excited...Caleb tried his first baby food...applesauce. He doesn't take anything by mouth so we wanted to start out slow. I don't know that he will be able to take a lot of the baby food but he at least gets to try new flavors. He seemed to do really well. Another awesome milestone!

Synagis Shot

2009-09-25T13:04:00.000-07:00

Went in to his Pediatrician's office to get his Synagis shot for RSV and his flu shot. I've heard other t18 mommies whose little ones have gotten RSV and gotten really sick or died. It is so scary. Blessed that we were able to get the shots. They are $1800.00 a shot each month for I think 5 months. Thank goodness for insurance!
Since last week he is up to 11 lbs 13.5 oz! Yay!!!

Cardiology appt

2009-09-23T12:55:00.000-07:00

The appointment went well. There hasn't been any change. Which is a good thing. We would like it to be better but at least it isn't worse. I talked with his Cardiologist about how another t18 mommy had told me about how her little one's pulmonary hypertension had gotten better with having a bipap. He explained that it can get better if the ph isn't caused by lung disease. I asked if we knew that with Caleb. He said no but that it may be a good idea to have a scan of his lungs to see where the cause of the ph may be. If it isn't lung disease then there may be hope to correct some of it. Praying, praying, praying. The only problem is that we will not allow Caleb to go under sedation for any of these tests. It is too dangerous. So we need to see how creative we can get to get this done. He is weighing in at 11 lbs 8 oz!!

Happy 6 month Birthday!!!!

2009-09-20T19:08:00.000-07:00

We celebrated Caleb's big day at Silver Springs. It was a beautiful day. I can't believe that he is 6 months old...I just cry when I think of how incredibly blessed we are. Not only for having Caleb but for having such a wonderful family.

There were hardly any people there. Caleb got to see birds for the first time....and boy were they loud. We got to tell Caleb's story to several people. They wondered why we were celebrating his 6 month birthday. So I had to gladly tell them :) We made some beautiful memories. Devin just adores his little brother. We were sad that Corey wasn't with us. But we will go again soon. WHAT AN INCREDIBLE DAY! We love you so much Caleb.

Talking to my animals

2009-09-15T17:37:00.000-07:00

Caleb loves being in his swing....most of the time :) He has learned that being held a lot is not so bad either. Which we don't mind doing. I think the fact that he acts so much like any other baby is amazing. You can really hear him talk in the video. It may make you a little motion sick, I was loopy after taking it. But I love all the talking he did.

Laughs

2009-09-12T06:55:00.000-07:00

Daddy was kissing on Caleb and making him laugh. I LOVE IT! There is nothing better than the laughter of your children.

Forgot to Mention

2009-09-11T17:55:00.000-07:00

Caleb is 10lbs 7 1/2 oz!!!!

Sept 10, 2009 Neurology Appt

2009-09-10T15:37:00.000-07:00

It is Devin's Birthday!!! He is 5 years old. Where does the time go. We made a HUGE deal about his special day. We got him ready for school, he was all set to let everyone know it was his special day :) We will be having a party on Saturday...hopefully it won't rain.

We had Caleb's Neurology appt today. Dr. Carney is absolutely wonderful. He is so positive. We went over Caleb's MRI. Yes, there are big problems because there are parts of his brain that aren't fully developed. It is a complete brain just not developed adequately. He also has Dandy Walker Malformation. This all basically means that his development is slow (which we knew), and it means that he will continue to have seizures. Dr. Carney expresses it as, it is what it is and we will handle it. I love it. He said that Caleb has great eye contact, and is pleased that he coos, smiles and laughs. Caleb will have a problem with tone bc that part of the brain is deficient. So we need to continue to work with pt/st/ot. There is a concern with the tuft of hair he has at the bottom part of his spine. There is a 40% chance with Dandy Walker Mal. to have neuro tubal issues. Trisomys also often have the same issues. There is a soft spot where the tuft of hair is and he wants to look at it through ultrasound. We may not get a great image of it but the next option is an MRI that is done under sedation. We are so angry that this wasn't done when he was under before during the his last MRI. We asked the Dr's at the hospital if we could have that area imaged. They said they don't do that it is done through ultrasound. We have 2 doctors that said differently. Anyway, we have to move forward now. There are a couple of concerns with this spot bc Dr. Carney says it is possible for him to get meningitis. My heart just sank and my head just about exploded!! There are also other things that can be a problem but usually not until later in life. So we just wait to get the ultrasound and go from there. Dr. Carney agreed that there may not be anything that we can do in our situation but we won't know that without knowing the full extent of what is going on.

September 8, 2009

2009-09-08T19:26:00.000-07:00

Hospice called with the results of his pulse ox from over the weekend. He didn't do well. His sat levels were really low. I know we will probably have to put him on a canula or mask. He just hates anything on his face. We will get with his pulmonologist to see what she thinks. Devin had a great day at school. I asked what he learned. He said Bible. I asked what and he said that they closed their eyes and that God said let there be light. And there was. He said that only God can make darkness. That God said let there be the seas, the skies, flowers and it was done. He made people and children. He even made push pops! I just love him to pieces.

Quiet weekend

2009-09-06T19:37:00.000-07:00

It's Labor Day weekend. It has been a relaxing weekend so far. We went over to our friends house for a bar-b-que. It was really nice. Devin had a great time swimming. He is so sweet. We have been monitoring Caleb's oxygen with a pulse ox that Hospice brought over. We need to make sure that the blow by we are giving him is adequate enough to keep his sat levels up. During the day when he is awake his sat levels are great. But when he is sleeping they dip down way too low. We will keep monitoring him for a couple more nights.

A Father's Love

2009-09-06T06:54:00.000-07:00

I put this video together for Steven. So many times we forget that our husbands are hurting just like we are. I see how much Steven loves his children. Caleb has really stole his heart. He walks by him and says he is the most precious baby I've ever seen. They spend time just staring at each other sharing a special moment of love. After showing Steven the video, he asked to add something at the end. He is a wonderful father. I just wanted him to know how much he is loved.

September 2, 2009

2009-09-02T06:34:00.000-07:00

Caleb woke up this morning like usual at about 6:30 am. He is like clockwork. He starts flailing around because he wants out of his bassinet and wants to lay in our bed. Tell me he's not like any other baby :) Daddy & I layed there with him. It was a nice morning. Then he wanted to be held. This is something new. He usually wants to be left alone. Now he cries because he wants to be held. And don't you dare try to lay him down when he finally falls asleep...he knows...then he's REALLY mad. I love watching him sleep in my arms. His eyes roll to the back of his head, he gets this silly Mr. McGoo grin and sometimes I get a little laugh. What must he be dreaming about? Must be the angels playing with him.

Had his GI appt. Caleb is 10lbs 4 oz and is 22 1/2 inches long. Way to go son! Daddy & I love you so much. You continue to amaze us.

September 1, 2009

2009-09-01T18:37:00.000-07:00

I am finally getting Caleb's blog set up. It has only taken me 5 months to do! It was a pretty quiet day other than the arguing with different agencies trying to get respite care. It looks like it just isn't going to happen. It is hard when you don't have any help or just relief sometimes. But then I look at my little mouse's face and it all seems better. Caleb loves to get kissed on the forhead. He just laughs. I sat here thinking about all the things I'd love for Caleb to experience. Will he ever get to see a sunset, play in the sand, get to see Shamu or be able to hold his head up so he can rest on my shoulder. I would love for him to wrap his arms around me and I'd hold him so tight. I love him so much that whatever he does is such a miracle...I'll take it and cherish each and every moment.

Brotherly Love

2009-08-20T14:45:00.000-07:00

Devin loves his little brother. He is always wanting to do something for him. He was so excited to sing for him....he got his room ready with all the animals. They are such a blessing.

Seizures

2009-08-05T16:55:00.000-07:00

We had gone in for Caleb's Cardiology appt. Caleb just got done having his routine EKG and we were waiting to get his echocardiogram done. Daddy was holding him and I noticed he was trying to get Caleb comfortable. I went over to them and knew something wasn't right. Steven said that he just starting pushing out & getting rigid. Caleb had a blank stare on his face and he wasn't responsive. I couldn't bend his arms or legs. I opened the door and told them that I thought Caleb was having a seizure. All of a sudden everyone came running in. It just happens that Caleb's Cardiologist comes to Ocala and holds appts at Dr. Kern's office (Pediatrician). All of a sudden Dr. Kern's comes running into the office too. By this time Caleb was in the postictal period. It took him a couple of hours to finally calm down. They all agreed that we needed to get Caleb to the Shand's to be evaluated. After a great ordeal and many hours later we were at Shand's. We met with the anesthesiologist because Caleb was scheduled to have an MRI in the morning. I asked why we weren't meeting with the cardiac anesth. We were told that he would absolutely...always need to be under the care of a cardiac anesth. I fought with the dr's for hours. Dr.Ivsik (Caleb's cardiologist) came to the hospital and took care of things, he is wonderful. But it took the hospital 20 hrs to get things arranged. I was so angry because Caleb had only had IV fluids.

Caleb didn't do well under sedation and after the MRI he was sent up to PICU to recover. He just wouldn't come out of it. At about midnight he started to go down hill quickly. I watched the monitors and his respirations went flatline then his sats dropped. He would gasp when he came out of what we think were seizures and apnea. It was horrible. I could tell when he was going to crash. It got more and more frequent. I just layed there on him and cried. The nurses & dr's worked so hard to try and stabilize him. They asked me what our wishes were. My stomach just sank...my heart hurt so bad. I didn't know what was best...no I did know I just didn't want to think about it. I prayed that God would guide me in these hard choices. I called Steven about 2 am and told him that I thought it was time and for him to come to the hospital quickly. Extra caffeine didn't work. They put him on a cpap. He finally was able to stay stable and rest. Caleb was also put into isolation because he had a fever and they weren't sure what all was going on. The next day he had an EEG done. Both the MRI and the EEG showed that he was having seizures. He was also diagnosed with Dandy Walker Malformation. Caleb hadn't cooed or smiled or acknowledged us for days. I was so sad. I kept thinking what did I do?? I was so afraid I wouldn't get my little mouse back. But we did. After we got home he really started to get back to his old self. Thank you Lord for continuing to keep Caleb safely in Your arms. You are our strength...You are with us always....

Unexplained Blood Infection

2009-07-08T13:55:00.000-07:00

Around 11 pm Caleb finished his feed. He threw up and had a bout of diarrhea. No big deal...babies do this. He only did it once. But we called Dr. Kerns and asked what to do. She said to give him pedialyte once we knew he wasn't throwing up anymore. He didn't have a fever or anything else. So my mom and I went to Walgreens around midnight. Steven and I slept in the living room and Caleb slept on daddies chest. Before we went to sleep we filled Caleb's bag with Pedialyte because he was fussing like he was hungry. That was around 1 am. At about 4 am Steven got up telling me to get a rag. He had thought that Caleb had wet through his diaper but his mic-key had come out and there was fluid all over Steven. We were a little freaked out because we had never had to put in a mic-key and we were worried because we didn't know how long it had been out. We had no clue how the thing came out. The bulb was intact and full. Steven couldn't get the mic-key to go in all the way so I called Dr. Islam's office (Ped surgery). The doctor on call told us to come on in to the ER to make sure placement is ok. Steven finally got it in and taped it down but something told us to go in anyway.

When we got to the ER we were met by Peds Surgery. The mic-key had come out again...bulb and all. They popped another one in and said for us to try a feed to make sure everything is working right. Caleb only took about 35 cc's and vomitted. They said he probably has a bit of a bug and to watch him. While they were getting all the paperwork filled out we waited in the room and watched "In the Heat of the Night". :) Steven was holding him and I decided to go over an touch Caleb's forhead. He felt a little warm. I asked the nurse if we could take his temp. It was about 100.4. I think 100.3 is their cut off. So they said they wanted to keep him over night for observation. While they were trying to get us a room, I noticed the moniter that took his vitals climbing. His blood pressure went up to 228 and now he was burning up. So once again I went to the nurse & said something is wrong his bp is getting too high. She thought it was the monitor reading wrong & I told her that I knew how to read a monitor that somethings wrong. She went & checked it out. I could see the concern in her eyes. His temp was now over 103. All of a sudden a team of dr's & nurses flooded the room. They said he is going into respitory failure and was septic...they needed to intubate him. My heart sank. I thought this is it. Steven went with Caleb to the other room where they intubated him. I couldn't watch. I sat there & cried in an empty space. They took my son. God what was happening?? Several nurses and staff came and knelt down beside me. I could tell they were holding back their tears. I asked if my son was going to die. They just looked at me & said it wasn't good. I called my mom who was at our house with our son Devin. I told her that Caleb crashed & she needed to get there quickly. I needed her there too. That was one of the hardest calls I've had to make. A little later we were sent to PICU. He had all kinds of tubes connected to him. It was horrible. They had a line in his collar bone area for access. They told us he had some sort of infection and started him on major antibiotics. They took blood for cultures to see what we were dealing with. Turned out to be Streptococcus Veridans. They couldn't understand how he could've gotten it. It is rare for a child his age to get it. He was fighting so hard. Later they came in and said they needed to do a blood transfusion. What?? I was terrified. But he wouldn't have made it if we didn't. They had to also tie his hands up because he kept trying to get the tubes. He is a fiesty one. We ended up having to stay for 10 days in the hospital because he needed that long of antibiotic treatment. The sepsis did a number on his little body. But if it weren't for what we believed were the hands of God pulling Caleb's mic-key out that night, he would have died. It happened so fast. A wonderful part of this event was that we could say that God put Caleb right where he needed to be. No dr or nurse could explain what happened. I don't know how many times someone came in asking for us to explain what happened again. They had to hear it for themselves. And I was happy to keep telling them the story.

Gtube Placement & Falling In Love

2009-04-16T20:06:00.000-07:00

We had just had our appointments with Caleb's Cardiologist and Pediatrician. Dr. Kerns (Caleb's Pediatrician) had suggested that we get the ng tube out and have a gtube put in instead. That we have a window of opportunity to get it done while Caleb's pulmonary pressures were good. By the time we got home we had a message saying they were able to admit us later and have the surgery the next day. Everything seemed so fast but we knew we needed to move forward. The ng tube was just irritating his nose making it hard for him to breathe.

We arrived at the hospital and got settled in. I was a nervous wreck. We met with the cardiac anethesiologist. He probably thought I was a basket case. I kept crying saying I didn't want to do this....he just said well you don't have to ma'am. He had a very dry personality. I just snapped at him and said I know I don't but I have to...this may be his only opportunity. We got all the paperwork done and we finally got to relax. I curled up in the crib with him and we cuddled. It was my first experience with monitors. They kept going off all night long & I would smack my head up against the metal railing. Needless to say there wasn't much rest. The next day they got him ready for surgery. Dr. Islam (Ped Surgery) is wonderful. He kept telling me everything would be fine. That it was a simple surgery. But my heart was hurting so bad. I just couldn't stop crying. I think a lot of it was guilt. Up until this point I was finding it so hard to bond with Caleb. My heart broke because I so desperately wanted to be close to my son. I guess I was just protecting myself. I was so scared he was going to die. Now I found myself going into survival mode....how can I help him live. I just laid by him and prayed. I begged God to please let him live. To please give me another chance to love him the way he deserved to be loved. I always loved him but now I was in love with him. Surgery went well. He had a couple of apnea spells but this is when he was introduced to caffeine. It worked wonderfully. It was so hard to see him hooked up to so many wires and tubes. But he made it. Thank you God for giving me another chance. Oh how I love my son. We were in the hospital for about 5 days. He is such a fighter. I had family in from Texas and my father in from Virginia. I don't think they were thinking they would be spending their vacation at the hospital. My cousin's husband is a Pastor in Texas, it was so nice having them there.

My beautiful son, I love you so very much. I promise to fight right along with you. You are so amazing. You are so loved.

The day we thought Caleb was going Home

2009-04-14T09:56:00.000-07:00

Steven, me, my mom & Devin were having lunch. I looked over at Steven, he was with the baby. I could tell something was wrong. I asked him if everything was ok, he just shook his head no. My heart sank. I ran over to him and we headed to the bedroom where the oxygen was. Caleb was lifeless and gray. We immediately started oxygen and stimulation. Nothing was working. Devin walked in like he was a pro at this and asked where the phone is bc he needs to call Pa (my dad). We called Hospice and our nurse Stephanie came by. She is wonderful. After some time Stephanie said it is time to pray and we asked if we should be calling our family to come over. She said yes. His breathing and heart rate had changed. There is no way to explain how I was feeling. I just layed next to my son and begged for him to not go...to fight. It has been several hours now. Family & friends came by and sat with us. He continued to go up and done...but never was there a period where he responded. He was just limp. As the day went on Stephanie said that I need to tell him it's ok. He is so tired. I just couldn't seem to pull it all together. I kissed his little face and told him that mommy loves him and that I would be ok...that it is ok to go Home. We called Pastor Mike and he and an Elder, Bob came by. It was about 7:30 PM. Shortly after they got there, Caleb decided to turn pink again and start moving. Praise the Lord! I told them they had to stay the night :) We were all exhausted but so incredibly elated that we had our little Caleb back.

The day we came home

2009-03-24T20:04:00.000-07:00

We had gotten home from the hospital and were met by so many wonderful people. We had family, friends and people from Hospice. We were so glad to be home and to love on our sweet little angel. It was a long day signing paperwork from Hospice and getting the medical equipment that we needed. My dad was here from Virginia and my mom was here from Tampa. After a long day we finally got to settle down a bit. Steven and I were in the bedroom rearranging things when Devin came in and said something is wrong with Caleb. We rushed in and he looked blue & dusky. We immediately put oxygen on him and called Hospice. While we waited for the nurse to come out Steven just held Caleb. He has crying and pleading for God to please not take his son. We sat together holding Caleb...was this the way it was going to all end?? It broke my heart. I cried and was so scared. Caleb looked so lifeless and gray. We tried stimulating him but nothing was working. I was worried about Devin too, he was trying to hide under the bed he was so scared. Finally Hospice got here and called out a crisis nurse. After what seemed like forever Caleb came around. Pam, our nurse took over and allowed us to get a couple of hours sleep. God blessed us with another day.

The day we finally met our little angel

2009-03-20T06:39:00.000-07:00

It is almost 6 am. I'm 43 weeks pregnant. We are on our way to the hospital. Didn't sleep very well, really anxious. Scared of what is to come. Really tired emotionally. There is almost a peace about this day. I can't wait to see my little angel's face. We are still praying for a miracle. God will show us His Will soon. I'm ready...I think.

Family, friends, Pastor Mike, have all shown up to be with us. It is wonderful having everyone here. I was suppose to go in at 9 am. But didn't, it was more like 11:30. I was terrified, but the medical staff was fabulous.

I didn't want any medication that would make me sleepy, I wanted to be totally awake, I didn't know how much time I would have. The anesthesiologist kept asking if I wanted anything to help me relax when we were getting started. I think I was making him crazy or he was worried about what was about to happen. The drape was up, I couldn't see anything except for Steven's face. I started to have chest pains...very painful. The anesthesiologist said it is time to have something. It was to just take the edge off. I then heard something crinkly. I asked what that is. The Dr. said it was them cutting..I said, they started..she said we are almost done. The breath was taken right out of me. I started crying and looked at Steven. We held hands. Then I just saw Steven's face fill with tears. Then I heard an amazing sound...my son cried. I told Steven to go with him. I'd be ok. He came back & said he is wonderful, he peed on the nurse! I asked how he looked...he smiled and said he is perfect...he has an extra thumb. The medication started to wipe me out. The next thing I new they put us in a room to recover and all my friends and family were able to be there. The hospital was so wonderful in accomodating us. Immediately after getting into the room, Pastor Mike performed the Baptism. It was beautiful. Shortly after Wendy took amazing pictures of Caleb. She was given a room to do the pictures.

I tried to nurse but Caleb wasn't able to latch on. It was too difficult and he was hungry. So they put a tube in his nose that went into his stomach to feed. An ng tube. Now he can rest.

Steven wrote this in the journal

2009-03-20T06:38:00.000-07:00

Today my little Caleb was born, he was more beautiful than I could have hoped for. God answered all my prayers about today. We've had many family and friends here to share in our joy. Caleb was just so perfect and strong. Everytime I see him my heart fills so much and I'm overwhelmed with love and joy. I would not give up this experience and time to get to know Caleb for anything in the world. God has inspired me today beyond expectations and reassures me that God can work amazing wonders.