Quick Update

Thank you all for your prayers. We really do appreciate it.

Today we had a visit downtown at TCH, and I must admit that it did not feel very productive. I am not sure exactly what I was expecting to happen, but I guess I was hoping for more action. This is disappointing to us as we are so ready for relief for our little man. He has lost a couple more ounces and is quite irritable. I know ounces don't seem like much, but when you are a little bitty failure to thrive kid the ounces all matter. We started adding Duocal (a powder that adds calories to food) to his formula around his first birthday, and they now want us to add it to all of his foods. I think it would be great if it helped, and we hope that it does, but what tends to happen is that he eats less. It is as if his body has an internal calorie counter. And when you increase the calories per ounce of his milk, he just drinks less milk. So we will try adding the Duocal to his purees and see if that helps. Hopefully, it will be successful.

As for the c.diff, we will continue treating with antibiotics. You wouldn't believe how difficult it was to find the medicine this time. We live in such a big city that you would expect a perk being easy access to necessary meds. Not the case on Friday evening. None of our go-to pharmacies had the right chemicals needed. His medicine has to be compounded since he is a baby so the pharmacy has to be a compounding pharmacy, and it has to have the right supplies. After 4 hours and the help of Walgreens, we found someone in The Woodlands/Montgomery that could make it for us. It was a 51 minute one way drive! Thank goodness for Mickey Mouse Clubhouse and a DVD player for a rear-facing carseat! We are now searching for some other possible solutions as the last 8 rounds of antibiotics have not taken care of it for us. I have been in contact with Cincinnati as well, in hopes that they might have some solutions. I hope to hear more from them tomorrow. Beckett had to have an irrigation done last night to help clear the stool out of his colon. His intestinal motility disorder just really compounds the battle with c.diff. His dose of Senna (ex-lax) has been bumped up once again in order for him to have a daily bowel movement.

The main thing we left our GI appointment with was a cardiology referral. So, to cardio we go. Sometimes, it feels a little bit like everyone is just trying to pass him off to the next guy. This type of failure to thrive is a symptom of heart problems. He also does have episodes of turning blue around the mouth, so they felt it was warranted to send him to cardio. He had an echo cardiogram done when he was 2 months old, but they want to re-check. He also had a normal EKG in the Spring. But they want to be sure nothing is being missed. That appointment will not be for a few months as it takes a while to get in, and there is nothing "urgent" about his case (no murmur, etc.)

I have been in contact with our wonderful pediatrician this afternoon, and she is working on getting things moving a bit faster for Beckett at this point. We are very thankful for her and how hard she works to help our little man. We expect to see a neurologist, endocrinologist, geneticist, and cardiologist this Spring.

Thank you for your prayers for our sweet little man! We are so thankful! Thanks for checking in on us! Hopefully, the next post will be a more positive one! :)

Happy New Year!

In true Kaylan fashion, I realize I am a little late with this, but I just wanted to wish you all a Happy New Year!

2011 was a big year for our family- one we won't ever forget. This was one of those years where God's strength and might became so evident in a real and personal way. His strength and might are always there--always will be and always have been. But during times of challenge, when you feel stripped of "normal," God can show and remind us of how big he is! When we are asked to "get out of the boat," --despite how comfortable we may have been in the boat--God saves us with his strength and shows everyone how amazing He is. He is our healer and our comforter.

We knew going into 2011 that it was going to be a challenging year, but we had no idea how big of a challenge! After much prayer and discussion, we had made the decision to pack up and leave the town where we had each grown up- the town where we met, the town where our family began, and the town where we had a support system of family and friends. We knew this included hubby leaving for the big city while I stayed home with our two young children waiting for our house to sell. God quickly blessed us when our house sold in just 9 days on the market. And the moving blessings just continued from there. We are thankful for the way everything lined up. When we moved here, we never imagined the amount of pediatric specialists Beckett would need easy access to; we did not know we would need insurance to cover a trip to Cincinnati and infant formula and medicine well past the age of 1. We didn't know how wonderful it would be for the husband to get off of work at 3:30. There was a lot we didn't know, but God knew. God took care of all of it for us--even before we knew the need was there.

There were definite ups and downs of 2011, but throughout all of it we grew in big ways as a family. And I am so thankful for that. I am thankful for all the ways God worked in our lives during 2011. And now we enter 2012, and I cannot wait to see what God has in store for our family.

This year, I don't want to just "survive." (I can honestly say that at about this time last year--home alone with a 4 month old on a feeding tube and an active and playful 3 year old--survival really was my goal!) I want to be more intentional with my time. I want to continue to work on my goal to "Do the work." I have a lot of growing to do to get there, but I am going to try. I want to love my family well. I want to make our home a happy and engaging environment for Brant. And I want answers and blessings for Beckett. And of course, I want to exercise more and eat healthy!! :) Cause who doesn't want that??

Thank you again for praying for our family throughout 2011. We are so blessed to have wonderful friends and family with whom to share our requests and our praises! Happy New Year!

Christmas Wrap-Up

Merry Christmas Everyone!

(at least I made it before New Year's!...barely )

It's a Christmas miracle! I got a cute picture of the two boys together!

Beckett enjoying his My First Anywhere chair. It is the perfect size for him.

Brant got a kick out of Beckett's toys!

Brant on his new red bike! It is now already covered in mud! He loves splashing through the mud. What a boy!

Sweet boy!

And I didn't even tell them to do this...ha! Brothers!

Just as it was beginning to look a lot like Christmas around here, it is already over! What is usually a solid month of cheesy Christmas movies, holiday treats, Santa t-shirts, and Christmas carols all happened in turbo-speed around here this year! It has taken me a little while to catch up, but we are ready to welcome 2012 tomorrow! I realized I really had to post Christmas pictures before December and 2011 ended!! The boys had a lot of fun this year, and it was really neat to see Brant understand what Christmas is all about. He also had a lot of fun counting down the days until Christmas and is already asking when it will be Christmas again! We are truly thankful for all of the wonderful ways our family was blessed this year...I can't believe this is my last post of 2011--a big year for our family: a year of challenges, blessings, and growth. I hope you all had a Merry Christmas and have a Happy New Year! See you in 2012! :)

Merry Christmas, Brant!

Our Silly Boy!

Christmas 2009



Christmas 2010

Christmas 2011

Our little 4-year-old, Brant, is an absolute hoot. He is precious. He definitely keeps us laughing and on our toes. Throughout this Christmas season, he has had some very funny moments. I am documenting it here not necessarily to start anything about Santa, but just so that his daddy and I will have a way to remember as this has become like a journal for us. I also thought it would be fun to share and might make you smile.

Brant: Well, I do know that you are the one who gives me presents, Daddy. I know there is no Santa.

Daddy: just curious as to what he would say Who told you Santa was not real?

Brant: points upward

Daddy: laughing Who?

Brant: God. God told me there was no Santa.

So, how do you argue with that? :o)

Our decision was that you don't. I promise we don't hate on Santa. We talk about how it is fun to play Santa Clause and people enjoy talking about Santa and dressing up like Santa. It is fun to pretend Santa. We touched on the history of St. Nicholas and what a kind man he was. We discussed that there are many kids that really love pretending about Santa, and that is a lot of fun for them--and we held our breath that he wouldn't run all over school sharing his news! :)

Brant's favorite Christmas song: (while baking our sugar cookies)

All of them...including:

Taste the season! Folly Jolly! Fa-la-la-la-la....

Brant's favorite Christmas dessert:

Needless to say, Sugar Cookies. He prefers the cookies with the most icing and both colored and silver (or chrome) sprinkles...He then licks the icing and sprinkles off and eats about half of the actual cookie. He just likes the real good sugary part!

Brant's favorite Christmas movies: (and they must be watched in jammies)

The Polar Express

Special Agent Oso Living Holiday Lights (Yes, it is definitely a classic...ha! sarcasm noted.)

Ice Age Christmas movie...yes, I know...another classic. sigh.

Brant's favorite Christmas books:

The Polar Express

The Gift of Christmas

Christmas in the Manger

Brant's thoughts on Christmas lights:

As we are driving through a local neighborhood--Why do we only have white lights? I don't want to have only white lights. We should get red and green and purple. And we need all those candy canes to go around our trees. And we need those Santa's to go in front of the driveway. And we need those...and lets get those too....and a reindeer and trees...

I guess Daddy will be very busy next year and you will be able to see our house from outer space!

Also, as we count down to Christmas, Brant thinks of more and more things he wants each day! And he has a new interest in Dinosaurs! I love watching him grow and learn new things. It is such a blessing. He made a Dinosaur Field Guide book today on the computer and said he is now a Dino expert. He even said that when he grows up he wants to be someone that studies dinosaurs....and a baseball player?? So, now that Christmas is 3 days away, he suddenly loves all things dinosaur. I hope he isn't too disappointed to not get very many dinosaur toys. After all, he knows the gifts are from mommy and daddy who do not have any time left to go to the store. :o)

Brant is such a wonderful gift to our family, and we are so thankful for him. He is such a loving little boy full of both funny and serious thoughts. You never know what you are going to get with him. He is very perceptive and understanding. He enjoys loving people and showing his love. He has so many precious gifts and is a blessing to our family.

We are so glad God gave you to us to love! We love you Brant! Merry Christmas!

A Good Day

Every one was excited our first night back at home!
It was pretty precious to see how excited the boys were to see each other! I pray they will continue to be blessings to each other as they grow older.

Loving making some Christmas cookies! And he loves his winter fleece jammies! :)

Check out all that sugary goodness! And he LOVES them. This is the first year he has gotten to eat Christmas cookies , as we have dealt with allergies in the past. He is absolutely loving it!

We are really thankful to be home again and have our family all together. Thanks again for all of your prayers and sweet messages throughout our time there. Our trip to Cincinnati was very productive, and we are so thankful that we were able to go, but there is nothing quite like the comfort of your own home, especially at Christmastime. We are so blessed to be in our home as a family. It is a little hard to get back into the swing of things after ten days away, especially during such a busy time of year. I realized yesterday that I had not yet bought gifts for any of our sisters, brothers-in law, or parents! Don't worry ya'll, I got it taken care of now! :) I didn't even have any gift wrap! Ha! So tonight I will busy myself wrapping gifts for our kiddos and the rest of the family while watching a cheesy Christmas movie...and probably eating some Puppy Chow or Muddy Buddies or whatever you want call that wonderful treat! I am really enjoying getting to do my normal (and favorite) Christmas activities now that we are home. Brant and I even got to make some fantastically sugary Christmas cookies yesterday! He really enjoyed it, and now he is LOVING eating them. I have to admit they are pretty good. While we were frosting the cookies, Brant looked up and said, "Jesus, we are making you some cookies right now. They are for your birthday." It doesn't get much sweeter than that. :)

We got the results of Beckett's MRI yesterday, and we are thankful to report that it was "normal!" His blood work had some slight highs and lows that we will investigate further in the months to come, but nothing to alarmingly high or low...if that makes sense. We continue to look for a larger diagnosis (if there is one?), but we are thankful to have ruled out some things. We have been asked several times if we are disappointed to have returned home from Cincinnati with no new diagnosis, and the answer is no. We accomplished a lot in Cincinnati as far as Beckett's quality of life goes, so that alone makes it all worth it. And we may never have a larger diagnosis, but we will continue to do everything we can for his comfort and quality of life. His current diagnoses remains as gastroparesis (which really can cause a slew of nutritional problems), failure to thrive, hypotonic (low tone, "floppier" than toddlers his age), a redundant colon, ideopathic constipation, and global developmental delays.

Beckett seems to be enjoying trying some baby foods, primarily peas and pears as those seem to agree with him the best. He also really likes puffs, a "meltable" finger food. Brant is enjoying snacking on the puffs, too! Beckett has also gotten 2 more teeth over the last month making a grand total of 3 teeth! But I can tell that his top two teeth will be coming in any day now!

And here is what made our day yesterday really, really good: The hubby was holding Beckett and asked him, "Where's mama?" And the precious little man reached his arm towards me and smiled. It was an absolutely amazing moment for us. He has been reaching for me or Daddy or pretty much anyone and smiling, for a long time, but not in answering the question of who/where we are. In the past when we would ask him, he would not acknowledge the question or really even attempt to look up at me. He just continued about his business. We have been working for months on him acknowledging "Where's mama?" and "Where's dada?," and yesterday, he did it!! What a blessing! Hopefully, we will hear his little voice say, "Mama," very soon. For now, we are enjoying celebrating his recognizing who mama is and who dada is. Truly wonderful.

So after Christmas cookies, eating puffs, some special shopping time with Brant, and my little man smiling at me as his "mama," I would consider yesterday a very good day. Thanks for checking in, and thank you again for all of your prayers for our family throughout the trip. We are blessed to have friends like you.

Last Day

Today was our last day here in Cincinnati! We started the day with his colon x-ray, then we had an appointment with our colo-rectal center doctor. Those appointments went very well. We have found the right medicine regimen to clean Beckett's colon out on a daily basis for now. It may change as he grows, eats more food, etc., but they will be here to assist us all along the way. We are so thankful we came and feel like we accomplished a lot this week. Our baby is now having regular bowel movements (hopefully this will prevent c.diff from returning) and he is eating some pureed food. Yay! These are very big accomplishments for us! We have also been given the okay to let him sleep through the night! Whoo-Hoo! These are definitely milestones for us to celebrate. We continue to wait for results of some of the other testing we had done. Please continue to pray as the waiting can be one of the hardest parts!

After his appointment, it was MRI time. Beckett had to fast from 5:30 am until 3:00 pm when the procedure finally started. He finally got to have more formula at 5:00 pm! That is a long time for a little guy not to eat! He did very well with it. The MRI today went very smoothly. They took images of his brain and his lumbar spine. We do not have results of the scans yet. Oh, but I did forget to mention earlier this week that his colon biopsy was negative for Hirschsprung's Disease. We were not expecting for that test to come back positive, so it was not much of a surprise. According to the pathologists is colon is normal. For some unknown reason, it just doesn't want to move very quickly.

Beckett had a very nice nap in recovery. He was so comfy and cozy that he didn't want to get up! He just wanted to sleep! I think the week has worn out the little man...and rightfully so!

Here is a picture of him sleeping with the big fuzzy puppy dog that his kind nurse gave to him. It seemed to make his day!

We are so thankful for the progress we have made this week in his health care and are now very anxious to get home! We are ready for our family to be back together again and enjoy the rest of the holiday season. Thank you so much for your continued prayers for our little boy and our family this week. We are very grateful!

Love,

Kaylan

Miles from Normal

As we were driving through downtown Cincinnati yesterday morning, all I could think was that I could not believe we are here. Don't get me wrong, Cincinnati is a wonderful place to visit and we have enjoyed some fun touristy things while we have been here. But I never really saw myself here--miles from MY normal. This last year has pushed our family out of what we knew as normal in several ways, and there is just nothing normal about taking your one year old halfway across the country for medical treatment. Nope, not normal. Blessed to be here and surrounded by caring, helpful people, but still, it doesn't feel normal.

Today, we were able to see the very experienced director of Motility Disorders at Children's. He was very helpful in looking at Beckett--the whole child. He did not just focus on his poor GI motility but tried to put the whole puzzle together. He examined Beckett's developmental abilities and coordination. And in putting together this precious puzzle, he feels it is necessary for Beckett to have a brain and spinal MRI, along with more blood and urine testing. This means more anesthesia for our little guy. The MRI is scheduled for Friday at 1:30 pm, and yes, he must fast for 8 hours leading up to it...not easy even for a kiddo with gastroparesis.

Please be praying for sweet Beckett as he is put under anesthesia once again for this MRI. Please also pray for accuracy in testing. The goal for the urine test is the "first" urine of the day...how this is possible in a baby who wets throughout the night and day, I do not know...So I hope it is still as accurate as needed. Some of the specific diagnoses that they are considering for Beckett can have a lot of gray area and are difficult to diagnose. So we pray for definite and clear, accurate results. We are hopeful that it will all be negative. Please join us in lifting Beckett up in prayer throughout the testing process. It is hard on a little guy. Please continue to pray for all the doctors and professionals involved--that they are careful and thorough. Please pray for hubby and me as we continue to walk through the unknown and new territory of taking care of a child with chronic health concerns. Thank you.

But Jesus immediately said to them: "Take courage! It is I. Don't be afraid."

Lord, if it's you," Peter replied, "tell me to come to you on the water."

"Come," he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!"

Immediately Jesus reached out his hand and caught him. "You of little faith," he said, "why did you doubt?"
Matthew 14:27-31

We are thankful to our Lord and Savior who saves us, who reaches out his hand and catches us when we are distracted by the winds around us, full of fear and miles from normal.

Here are some pictures of the fun, touristy things we were able to do this weekend. We really have had a nice time between all the appointments and tests! It is a wonderful place to come visit!