My Big Boy

When asked what he wants to be when he grows up (or even when not asked, but always willing to share the information), Brant responds with a very admirable list. Paleontologist, train conductor, house builder, astronaut, football player and daddy. And it's an "all of the above" situation, not picking one, but accomplishing ALL. :) It melts my heart every time I hear him rattle off his list...It changes slightly from time to time, but for the most part, he is always dreaming big with a nice array of scientific occupations, the occasional athlete...and daddy. Precious. I am thankful for this in so many ways.

It took Brant a little while to warm up to the dinosaurs and decide to smile for the camara, but once he did, he had a blast posing with each of them! What a goofball!

He loves his adventures! We are so thankful for this little boy who challenges us. We love our conversations about his buddies, his dreams, his fears, his loves...I am so thankful to have a four year old son who can share his heart with me. And I pray that someday I have a fourteen year old son who can still share with us...but one day at a time!

There might be days sometimes that I "miss" the younger years in a way--Oh, how this tired mom misses naptime!--but then I look at this little boy who is growing up right before my eyes, and I know it is a blessing! I love listening to him as he creates a whole world out of his train set or "reads" his newest favorite book. He cracks me up when he says "Paleontologists, LIKE ME, know aaaall about dinosaurs." He melts my heart when he says, "Daddy, your a hero." I won't lie--Its not all lovely, and there are new challenges that come with being a big boy- saying goodbye to naps is a bit exhausting, giving more freedom can be terrifying, and teaching can be daunting. And honestly, there are days that I am ready for bedtime at about 5:00 pm. :) But Game On. This is a good thing. I can't wait to share more adventures with my big boy.

Health Updates

Sorry for the delay in posting. Last week was a bit crazy, and all I really wanted to do in the evening was be lazy! :) Beckett's appointments went very well. Our appointment with the cardiologist was quick and simple. He actually didn't even do an echo cardiogram after all because he felt very confident that Beckett's heart was healthy. He even told us that he can tell us with 100% certainty that our little boy's heart was just fine. We are so thankful.

We also got the results to Beckett's sweat test (one of the tests for Cystic Fibrosis), and once again, they were normal. However, due to Beckett's symptoms as well as growing research in the area, we are still going to treat him with the enzyme trial. We have not been able to start them yet. The CF doctor in Cincinnati has been wonderful to work with, and he has discussed it with our pediatrician and is working to contact our local GI doctor to close the loops. We hope for everything to get worked out so that we can start Beckett on the enzymes very soon.

We have finished the most recent treatment for Beckett's c.diff, and now it is just a waiting game to see if it stays away. Please pray that it is gone and stays gone!

We have another motility test coming up. It's called a sitzmarker study. The goal is that Beckett would swallow a large capsule full of tiny rings, and then using radiology, the rings will be followed throughout his colon. As a one year old, he cannot swallow the capsule, so we will open it up and put all the little rings in a single bite of purees and hope to goodness that he swallows all of them. Eek. It should be interesting and perhaps will shed more light on the actual functioning of his colon and why it doesn't seem to work. If the testing shows something, we will follow up with more testing. I realize that is quite vague but that's about all I know right now. :)

Last weekend, hubby and I took the boys to the "Dinosaur Museum." Brant had a blast! I think Beckett enjoyed it, too. :) He tells people that he wants to be a paleontologist when he grows up, and the looks on people's faces are priceless. I will post pictures of Brant with all the dinosaurs and more details next time. He is so fun, and I am enjoying watching him grow and learn so many new things. We are so blessed to have a growing little boy who is always eager to know more. More on Brant, more pictures, and more on enjoying the later preschool years next time!

Thanks so much for your prayers for our family. Specifically, please pray that everything would get taken care of so that Beckett can get started on the enzyme trial. Pray also that the c.diff is gone and will stay gone. Please pray as we continue to do more testing and meet with more specialists. Praise God that our sweet boy is sleeping through the night! Big step for us! I won't delay nearly so long next time. As soon as I get those pictures uploaded, I'll be here! I also must share my new hobby with you soon!

Love-

A year later...

Well, it's official. I have been blogging for a year. I can't believe I am actually still doing it...haha! Those who know me well know that I tend to get a bit distracted from projects! So yay for a year!

A lot has happened in the year since I started this blog, and it is still mostly about Beckett. Part of me can't believe it is a year later, and we are still here. I was hoping by now it would have moved to more of the typical family blog, but for now, we continue to primarily update on Beckett.

I am so thankful that I started this as a way to journal our days, his progress, our trials, and our blessings. It is neat to be able to look back at the last year and see God's faithfulness in our lives. And it is a reminder to myself that if I could have peace in knowing that God has a perfect plan for our little man when he was being treated for reflux and failure to thrive, then I can still have the same peace when he is being treated for much more. It's been a tough couple of weeks. This week I spoke with or coordinated with our pediatrician (several times), our GI, neurology, cardiology, the Cystic Fibrosis Specialist, Early Childhood Intervention, and the speech language pathologist. It's overwhelming. It was one of those weeks where it hits home that we are not in Italy. I am still not sure where on earth we are, but we are definitely not in Italy. (Click here for an explanation of this analogy in a past post.) This is not what most one year old's weeks look like. I no longer spend my days obsessing over nap schedules and the things that felt so important when Brant was a toddler. My days are now spent carefully dosing several drugs, endlessly counting calories, hoping for a dirty diaper so we can avoid an irrigation, bleaching everything, speaking with doctors and nurses, searching for answers and treatment and wishing I had a fax machine. (I can't figure out for the life of my why the medical world is still insisting on this method of communication, but I digress.) it was just one of those weeks.

And just like God was bigger than reflux and FTT a year ago, God is bigger than this today. Things might get easier or harder, and we might have good days and bad days, but regardless, God is unchanging. He is the same God today that He was a year ago. I am so thankful. Thankful that He will always be our God, the Almighty One.

"I am the Alpha and the Omega --the beginning and the end," says the Lord God. "I am the one who is, who always was, and who is still to come--the Almighty One." Revelation 1:8

Thank you for praying for us and checking on us over this last year. We are blessed.

Taking Action

I heard from the Cystic Fibrosis Specialist in Cincinnati today and by the end of the afternoon, we had a plan. He is a very kind and helpful doctor who called with the results at just the right time. Everyone around here is scratching their heads at this little boy who can’t seem to grow or poop, and this doctor may have the solution. I know that sounds promising but it is a catch-22 because with the treatment comes the possible diagnosis of Cystic Fibrosis or a form of Cystic Fibrosis. So yes, we are desperate for relief for our little boy and the treatment sounds hopeful, but no, we don’t want Cystic Fibrosis. We do want answers, and we do want help.

Beckett’s colon tissue was “borderline” Cystic Fibrosis (CF) positive. I was pretty surprised to learn this. They took 4 tiny pieces of colon- one piece was unusable, one piece was positive, two pieces were barely negative. I don’t know specifics, but from what my non-medical brain can gather, CF tissue is under 35 (I have no idea what unit or in regards to what), and normal tissue is above 35. After calculating the numbers of each pieces of tissue, the average of Beckett’s tissue findings was 38. So, he barely made it over to the normal side. His CFTR function is definitely very low, but BARELY not low enough to call it positive for CF or a form of CF. Our little guy is on the border. This brings with it it’s own set of complications. It is not technically low enough for a diagnosis and treatment, however it is not healthy enough to function normally (causing problems such as chronic failure to thrive and severe constipation with abnormal stooling).

So, the CF specialist is recommending further testing including a sweat test and a stool sample (We are experts at that one). If either of these tests are positive for CF, it could help in making a clear diagnosis. He is working on coordinating all of this with our pediatrician so it could take a few days before the testing occurs, and then there is the waiting. I honestly will be absolutely surprised if these are positive. I just don't see how it could be positive.

And here is the hopeful part, the taking action part—a possible solution. After meeting with the Colo-rectal Center doctors, they have decided to go ahead with the treatment based off of his symptoms and colon tissue biopsies alone. We are going to do a trial of pancreatic enzymes for Beckett and see if it helps. These enzymes are used as treatment for people with CF. The enzymes are taken with food to help digest it better and get proper nutrition. From what I hear, the enzymes could and hopefully will help Beckett start gaining weight and having bowel movements with much less intervention (a lower dose of Senna). This could be why he has such a hard time gaining weight even though he does eat enough calories. I know a couple of people who have had success with the enzymes resulting in weight gain and stooling so I feel hopeful. It could take a couple of weeks or longer to see any real improvement. I am so thankful that they have decided to go ahead and start treatment to see if it helps. I am thankful that someone is ready to step out on a limb and try something new to see if it works. I am thankful for action. This doctor actually emailed me a 3 part plan—a plan feels like a blessing. If his body needs the enzymes, he will use them and we should see some progress. And we will know more.

We continue to wait and see. We are in a perpetual state of waiting. We have spent the last 15 months looking for answers, but the waiting game doesn’t really get any easier. I might be used to it by now, but it is still hard. We are just anxious to know what is going on so that we can fight it. I want him to get the help and treatment that he needs.

Please pray for our borderline kiddo. Pray that he could get the exact treatment that he needs to begin thriving, growing, and developing. Please pray for wisdom and persistence from the doctors in trying to figure this sweet boy out. Pray that every person and piece of equipment involved in all of the testing would be accurate. And please pray for peace as we continue to wait once again…and patience, we always needs patience. Thank you so much for checking on Beckett and this topsy turvy road we are on.

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!