Caleb The Eater

Caleb is eating great. Miraculously great, actually. He's getting better every day. We are thankful to the Lord for what He is doing in Caleb's life.

Christmas Dinner at MCH

What a great time we had at the Christmas Dinner at Miami Children's Hospital! Our friends from Calvary Chapel did an amazing job with the food, carolling, etc. I had some great conversations with parents of babies who are going through similar situations that we went through with Caleb.

It was great to see Dr. Burke again and some members from his surgical team. They were there because they got a call for an emergency surgery. Janet and I met the family of the little girl who was getting operated. We were able to show them pictures of Caleb when he was in the hospital as well as recent pictures. It was good to tell them our story and hear theirs.

Hopefully, we'll be able to see the people we met tonight again.

Doctor's Visit Results

Caleb did great! He has gained enough weight to secure a spot in the 25th percentile. This is a marked improvement over his steady place hovering close to the 10th percentile. His head growth is also leveling off - so his body is catching up to his head. He has also had a diet change and now is eating yogurt through a straw, which is going well.

Caleb's Doing Great

It's been a long time since we've posted. Caleb is doing good. He climbs, he's got a cute smile and laugh. Tommorrow he goes to see his GI doctor. He did have a couple episodes of vomitting today. He's still on quite a bit of medicine, so as he grows, we're hoping that can all be weaned off.

We are looking forward to the Heart 4 Heart Foundation event later this year. Here's some information for you if you're interested. This is the foundation that was started by Caleb's cardiologist, Dr. Mas.


Heart 4 Heart Foundation, Inc.
16373 SW 54 Terrace Miami, Fl. 33185
305-979-3014


Dear Friends and Family:

Our Winter fest is here...
Come with us and cheer...
Many healthy hearts we need to hear
Year after Year!

Our yearly Heart 4 Heart Picnic is well on it's way! We need everyone's help and support once again so that we may help a child's dream come true: A CHANCE TO LIVE!!! We need to support our children and raise money. Through your generous support, we will once again pay for a child's open heart surgery. With all your help and support from last year, YOU helped save the life of a little girl from the Dominican Republic who is now back at home doing great!!! THANK YOU! We currently have several children in desperate need of help! So please, mark your calendars and come join us!

Sunday December 10th, 2006
1:00 to 5:00 pm
18275 SW 104 Street
Miami, Fl.
(This is right off Krome Avenue and 104th Street)

Tickets are already for sale, you can get them directly from me (you can call, e-mail, or just let me know how many you need and I will make sure I get them to you). Here is some of the info of what we will have:

Adults are $10.00 per person and children $5.00 per child. The ticket includes the meal with 2 sides or chips and a soda, juice or water. We will have also have additional refreshments, snacks, cotton candy, snow cones and many delicious desserts available at extra cost.
We will also have a LIVE BAND, bounce house, SNOW, pictures with Santa Claus, face painting, several games and activities, arts & crafts, silent auction, raffle, T-shirts & many, many more fun activities for the entire family.

This will be a wonderful event, lots of fun and all for a magnificent cause! Please make sure you get your tickets early! We hope to see you there!

If you wish to make a donation, you can make checks payable to Heart 4 Heart Foundation
and mail them to 16373 SW 54 Terrace Miami, Fl. 33185.
If anyone wishes to donate any items for our silent auction or raffle or for the event, please contact me ASAP. I am also looking for people interested in helping for the event!!!

God bless you,

Heidi Schuler-Arcila
Heart 4 Heart Foundation, Inc. Director
305-979-3014
hjschuler1@aol.com

New Info

Caleb's been doing great - all boy! Exploring everywhere, playing with everything, pulling his sister's hair!

A couple weeks ago he was diagnosed with Ehler Danlos Syndrome by a genetic doctor that we were referred to who practices at Joe DiMaggio Children's Hospital in Ft. Lauderdale. So what is Ehler Danlos Syndrome? Here's a quote from the EDNF (Ehler Danlos National Foundation) website:

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Basically it means that we can't throw Caleb around and he'll never be a serious athlete.

In other news, although he's doing great, we are still having big problems with his feeding. He won't eat with a spoon and it's quite an ordeal to try to feed him. He just celebrated fourteen months of life, by the way. We are researching some different programs, at the suggestion of Caleb's GI doctor, that are specialized feeding programs for children. They are all out of state so there's alot of issues to consider.

As always, we appreciate your prayers.

Dedication Picture

Dedication Thanks

We'd like to thank all that came to Caleb's dedication. Once again we were humbled and rejoicing in all the love that was shown. It truly has been a memorable year. The dedication was video taped and we look forward to watching it. Thank you all for making it and for standing with us as we pray that God would use Caleb for His glory.

Dedication Invitation

We are thankful to the Lord for blessing our lives with Caleb. Most of you know that the past thirteen months for us have been a test of faith and perseverance which would have been unbearable without your prayers and outpouring of love and help.

On September 24th at Calvary Chapel Kendall we will celebrate Caleb’s life by bringing him before the church and dedicating him to the Lord. It will be part of the 12:30pm Worship Service.

If you are unable to attend or do not live in the Miami area, please join us via a live internet web-cast by going to Calvary Chapel Kendall's webpage and clicking on “Live Broadcast”.

Calvary Chapel Kendall is located at 16435 SW 117th Avenue, Miami, Florida 33177

“Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.”
1 Thessalonians 5:16-18

Cardiology Visit Postponed

Dr. Mas was sick on Monday so Caleb will see her on Thursday. In the meantime, he continues to please his physical therapist and keep his parents on the move!

CALEB'S DEDICATION: YOU ARE INVITED!

On Sunday, September 24, as part of the regular 12:30 worship service at Calvary Chapel Kendall, Caleb will be presented and prayed for. It will be a time for us to stand before our Christian family and acknowledge that Caleb's life is dedicated to the Lord and we will endeavor to bring him up in the wisdom and ways of the Lord.

It would mean so much to us if you would attend. So many of you have been part of Caleb's life directly and indirectly. The blessing we have received from each of you cannot be measured this side of eternity. Would you consider standing with us on September 24 in celebration and dedication of Caleb?

The church is located at 16435 SW 117th Avenue, Miami, FL 33177. The service begins at 12:30pm. The church phone number is 305-233-5433.

If you are out of town or are unable to attend, the service is broadcast live on the Internet. You can join us electronically by going to www.calvarykendall.com and clicking the appropriate link.

We look forward to seeing you there!

Cardiologist Visit Tomorrow

Tomorrow Caleb will have another visit to Dr. Mas. Lately, he's seemed a little tired, which could be nothing, or it could be a sign of heart failure. So it's just a precaution, a wise one, for him to get another echo. His appointment is at 1:00pm and we're making it a family affair. Genesis likes Dr. Mas because she always gets stickers!

Progress Report

He seems to be gaining weight. The GI doctor encouraged us not to weigh him everyday. He's throwing up less. He seems to get tired more than a normal child; but that could be normal for him. He's at the age where he's really fun to play with. Thanks for your prayers.

Something Like Crawling

Caleb is mobile. Although he hasn't been officially clocked, my guess is that he can do about twenty feet in about thirty seconds or so. I think I'll call it "sit-crawling". Maybe we can video tape it for you.

So here's my best attempt at a description. He sits, he leans forward, he moves his hips in a scoot forward type of motion. And then he repeats it many times. It's actually pretty inventive.

The point is no matter how you get there, you need to move forward.

CAT Scan Results

Thankfully, it looks like Caleb simply has a big head. No fluid, no obstruction of the ventricles was found in his brain. The CAT scan was compared to the MRI done at birth and there are no changes. So there will be no brain surgery. That's a relief.

Caleb will continue to get a CAT scan of his brain done every year until his head is proportional to the rest of his body.

We are thankful to the doctors at Miami Children's Hospital who are so cooperative and available to us.

CAT Scan Today

At 10:00am today, Caleb will undergo a computerized axial tomography (CAT) scan of his brain to determine the cause of the abnormal growth of his head. Of course, we hope his body is just simply growing disproportionately and that everything else will catch up to his head. Worst case scenerio, of course, is brain surgery. We should know today.

He looks and acts great. He did fantastic during physical therapy yesterday. The therapist, who hadn't seen him in about a month, said that Caleb made her day he was doing so good.

Large Head Update

The doctor said that Caleb is not mentally retarded because he makes eye contact, claps his hands, responds to his name, etc. We are a bit relieved. She thinks he just has a large head. She did order an MRI to be done within three days so that should give us more info.

Prayer Request

Well, we are thankful for the little reprieve from doctors, therapists, and hospital stays that we have enjoyed. Things have been heating up lately however.

Caleb hasn't been eating, and when he does he has been throwing up. To make sure nothing was wrong with his heart, Janet took him to the cardiologist recently. Dr. Mas noticed that his head seemed to be larger than it should be and that his fontanel (the soft spot on the top of his skull) has not closed completely. She said this should have happened by the time he turned one. (The GI doctor says it should be closed by the time he's eighteen months.)

So today, Janet took him for his one year checkup. The measurement of his head is off the charts. His weight is in the lower 25th percentile, and his height has decreased to the 75th percentile; it used to be in the 90th percentile. So it seems that something strange is happening with his growth.

We've been trying to make an apointment with a neurologist at Miami Children's. I'm sure we'll be getting an MRI and all of that.

The good news is that he, at least to us, appears to be developing well mentally. He laughs, moves, picks things up, etc.

Well, thanks for your prayers.

Dry Heaves

Please keep Caleb in prayer. For some reason, he is throwing up alot again. Thanks.

Birthday!

Happy Birthday Caleb!

Today is your birthday. We are thankful to God that you are our son. No doubt your first year of life has had it's ups and downs. Because we love you so much, our hearts have been pained to see you struggle for so long. But nothing can replace the amazing joy filled laughter and smile that you are famous for. We are so blessed to be your parents; it is an honor.

May your second year of life be glorious. We look forward to seeing you walk, talk, love, learn, and grow. We'll always be here for you little buddy.

Happy Birthday!

Weight Gain

On his last visit to the GI doctor, Caleb weighed in at the same weight he was at six weeks previously. For some of us, it would be an accomplishment to not put any weight on for six weeks. But obviously for an eleven month old, it's not what is best. So we still are working on trying to get this little man to put some weight on. We've been praying for his appetite to increase and for him to gain weight. Please join us.

On other accounts, he's doing great. He's increasingly mobile, working on crawling. He loves to laugh and play.