Thank You!

Dear friends,

Thank you so much for the love, support, and encouragement that you gave to our family this summer.  We are overwhelmed by the outpouring of love that was shown to us.  We are so blessed to know that we are not in this alone.  Thank you for carrying a little of our burden for us.  Beckett is doing well.  His "special button" is doing the trick and helping him feel better.  Everyone who sees him comments on the amazing increase in energy.  It was all worth it.  We are so thankful. Thank you from the very bottom of our hearts.  (For our new friends, please read "Wow" (click here) to learn about how God showed his amazing love to us through all of those around us. There is a video at the bottom of that posts that describes Beckett's journey.  Thank you!)

Love,
our family

Our Life In Bullet-Points

Hi.

My blogging has been a bit sub-par lately. There is a lot going through my head, but sometimes it is hard to make sense of it all.  For today, I am going to keep it simple and bullet point my life. I will attempt to elaborate on most of points at a later date, but I make no promises. But here is kind of where I am at:

-  Read 7:An Experimental Mutiny Against Excess by Jen Hatmaker. Awesomeness. If you do one productive thing to stimulate your mind (and your heart) between now and 2014, make it reading this book. I have a project in mind, and I will share my favorite reads of 2013 soon. Just for fun.

- Kindergarten has become more bearable for Brant. He even admitted to liking school because he got to play with his friends. No more crying at drop off. Praise God. I love him so very much and I am so blessed to have him as my son. I am glad that I get to be his mom. He is such a special little boy who still loves the color purple. Amazing that I now have a "school-aged" child.  Wow.

-  We have made it to Dallas and home from Dallas safely twice in the last two weeks. Always an accomplishment. Praising God for our safety.

- Following said trips to Dallas, I got 4 new tires, tire rods (or something?), front end alignment, some other cool stuff that has to do with wheels, shocks, and new bearings (I have no idea if I am saying that right in my head or spelling it right as cars are not my thing).  Apparently one bearing was completely stripped and my wheel was at risk of coming off. See above bullet point about praising God for our safety.  Even when we don't know it, He is protecting us.

- I am not sure what I did all day in my prior life.

- Endocrine appointment went well. Tested Beckett for growth hormone deficiency but this is doubtful. Results are pending. Also checked for diabetes which was negative.

- Cystic Fibrosis appointment went well. We are working with the doctors at Dallas, our local pediatrician here, and the CF specialist in Cincinnati to come up with the best care plan for Beckett.

- iPhones are a necessity for parents of chronically ill kids. I have officially now had one for ONE year.  Life changing.

- 3 year check up went great! Ladies and Gentlemen, Beckett is on the chart! Birthdays carry a lot of emotion. They just do.  I am so blessed, I am so amazed, and I love that little man so very much. His birthday and the few days after it are the last time I was a "normal" mom doing normal mom things.  I am still doing normal mom things, but it just doesn't look the same. And there is a lot more thrown on top. 

- Every time I step foot into a children's hospital, I am truly humbled.  I look around, and it brings me to my knees everytime and makes me aware of just how big this world is. My heart breaks.  It reminds me that we are not guaranteed anything of this world. What we do know is God is good. And the promise we have is in Him. Our hope comes from our Savior. We know that God loves us so much that he would send his only Son so that we could have eternal life. We know that He is stronger and bigger than the hurts of this world that we don't understand. We know that God is good. And we go with what we know. Pray for all of the children (and their families) that fill these hospitals. They need your prayers and need you to lift your hands when they feel too tired.

- If you know someone who is dealing with illness in their family and want a way to help, get a group of friends together and purchasing a tablet for that someone.  It would be priceless for them. With all the time we spend waiting and traveling and waiting some more, I have no idea how I would make it without our little best friend, Mini. (I know we would make it, but there would be a lot more screaming involved.)  Many of my fellow mamas agree with this necessity.  Aaannnd, they are even educational. Anyways, just throwing ideas out there.

- Another thought: Church. Church is hard to get for when you have a little one that has special needs or medical concerns.  Parents of preemies feel stuck for months.  A great ministry idea would be finding those families and volunteering to watch their child for a morning, so that they can get to church.  Again, just another idea.

- My thyroid was biopsied for cancer. The C word. It was negative. Praise.God.

- I have taken up cooking, and I am really really enjoying it. Here is my family's new favorite recipe:
http://www.100daysofrealfood.com/2013/07/18/recipe-roasted-summer-vegetable-pasta/
Except I add some chicken. If I sat a plate with no meat on it in front of the hubby for dinner, well, we would have a problem.  Thus, added chicken.  Even Brant LOVES this one.  Try it.

- We have had 3 dogs come through this house this year. First, Buster. He now lives with my dad. Next, we welcomed Turbo. (There was much disagreement on the name. I lost.) And now we have Lucky.  Kyle picked him up off the side of the road.  ALL BOYS.  I am very out-numbered.  I can't even buy a pink collar.

- I quit drinking Dr. Pepper.  Maybe that is the reason I quit posting on my blog.  Now, I actually have to sleep.

- My husband is awesome. My best friend. I am so thankful for him.  He seems to live with by the words: Challenge Accepted.  He is a rock star.

- I am blessed beyond words.

To Him who can do immeasurably more

than we could ever ask or imagine.

Ephesians 3:20

Yay Three!

Our little man turned three yesterday! We are so proud of him! He is such a precious gift, and we are truly blessed by him. He has come so far over the last year and so much has happened!  I will post pics and document more about his third birthday very soon!

Beckett has been doing very well with his new flush routine. After a rocky first 6 weeks post-op, we are so thankful for how smoothly things are going now.  Over the last several days, he has started having more leakage, so we are going to address this with the doctor tomorrow. It is not as severe as it was last month, but it is definitely starting to "flare up" again.

Tomorrow we have our first appointment at the Cystic Fibrosis clinic in Dallas. We are thankful that they were willing and ready to see Beckett and his unique case.  We think it will greatly benefit his care to see all of his specialists in one location. This way they will be able to work together in an easier, more convenient and quicker way to do what is best for Beckett. It is also waaaay closer to us which equals less drive time and less gas money. So we are excited for this change. I am just praying the transition goes smoothly, especially with his rare presentation.  I am not sure what to expect as all CF clinics apparently have different protocols and ways of doing things.  I am also unsure of what their evaluation of Beckett's diagnosis will be.  So I am anxious to get to the appointment and get their opinion on what direction we need to go with treatment for him.  When Beckett was inpatient in July, we got to meet the CF GI specialist.  This is a GI dr that specializes in kids with Cystic Fibrosis. I am thankful that we have gotten to meet and she has had a sort of "preview" of Beckett.  The CF clinic in Dallas involves appointments with both a GI and a pulmonologist so we will be seeing both tomorrow. This is new for us because the Houston CF clinic only involves the pulmonologist. I think this will be of great benefit to him seeing as how he is so GI involved. I am thankful for this opportunity to see such a specialized specialist.

Thank you so much for your continued prayers for us. Beckett is doing so incredibly well. His energy level has increased, he just seems so happy. We are very thankful for how he is doing. Please pray for his appointments tomorrow. We also have his "well-child" appointment and an appointment with a new endocrinologist coming up next week, so lots of appointments these next couple weeks. Thanks you so much for checking in and for your prayers.

TBT- Do the work

For another throw back Thursday-- (not thrown real far back bc I only have three years to work with here...) 

This is a post that is a lot easier said then done. Now, we are no longer living in that "post-baby phase" and we have pretty much established our new normal. But it is still hard sometimes--and I think everyone can relate. It is hard to wake up and feel like, "Game on. Let's do the work."  Especially when "the work" is constantly changing-- as it is in everyone's lives. Of course, we can all tell ourselves to "just be strong and do the work" all day long, but to actually do it and feel courageous is a whole different ball game! It's a struggle.

I am constantly reminding myself of I Chronicles 28 and attempting to do the work in a "He's got this" kind-of-way. It is a daily prayer in our family.

Finding "Normal" originally posted in October 2011

After the addition of a new baby to a family, I think it is common to let a few things go as you adjust to your new life. You may get to-go food a few too many nights a week...(try 7) Or you may let the laundry pile turn into a mountain. You may let yourself off the hook for some social obligations. Your older child(ren) may watch more TV than you previously thought was acceptable. Whatever the case may be, for about 6 to 12 weeks post new baby, something's gotta give as you adjust to this new precious addition to your family. So you look around and you see your new (and old) chaos, but it just doesn't matter anymore. And all you really need to do is enjoy your baby and get sleep when you can because the dishes can wait. Life is in limbo, but you know that new routines will be established, you will sleep again, and everyone will adjust.

Well, we have been living in that newborn limbo for 13 months. I am not too proud to admit that over a year later, there are still bottles filling the sink (or the counters, if they made it that far), the theme song to Mickey Mouse Clubhouse plays a few too many times, and wrappers from last night's burgers in the trashcan. When I was pregnant with Baby B, I had grand plans of what our day would look like and how I would juggle special time with each boy. I had ideas of lining up nap/rest times and bedtimes. The adjustment has taken quite a bit longer than I had anticipated, and I still find that I am allowing myself off the hook for typical daily responsibilities with the disclaimer that "Well, it's like I still have a new baby on 7 feedings a day."

And then I woke up the other day...errr, dragged myself out of bed when I was being summoned...and realized that it is time. It is time to establish some kind of a new normal even amoungst the bottle feedings and appointments. It is time to realize that this is exactly where God has me. This is the job that he has blessed me with, and it is a very special one for which I am so grateful.

A couple weeks ago, I was studying Bible verses on courage. I often pray courage for my family. And I came across this verse from 1 Chronicles 28:

David also said to Solomon his son, "Be strong and courageous, and do the work. Do not be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you until all the work for the service of the temple of the Lord is finished..."

My eyes and my heart just focused in on David's instruction to his son to "do the work," not just once, but twice in this chapter. Do not let the fear of the size of the task be too overwhelming because God is with you. Don't be discouraged that you are an exhausted mother. Keep going, do the work. Don't be afraid of the unknown. Keep going because He is with you and He will not leave you...even in what seems to be too big of a job. Remember, He will not fail you. Earlier in verse 10, David is telling Solomon, "Consider now, for the Lord has chosen you to build a house as the sactuary. Be strong and do the work."

Be strong and do the work.

So I have a choice to make.

A) I can continue to love and nurture my children in a sort of "survival" mode (i.e. too much TV & not enough reading, too many take out or frozen meals, crawling out of bed when they wake up, leaving chores for another day...)

OR

B) I can continue to love and nurture my children in a "He's Got This and I can do the work" mode.

 

Regardless, the love and nurture is always there, and regardless, there will always be days when it is okay to leave the dishes in the sink. But it's just how I get through the day to day. I have just felt like it is time to be more intentional, be strong, and do the work...even in this sleep deprived state.

I choose option B. Do the work that God has given me to do today, each day. I will probably still have hard days...days where it all feels like too much. Days that I long to "fix" my child's health. Days where dinner might not get done. And that will be OK. Don't expect to see a spotless house if you come visit...But I am tired of living in this "post new baby" state of mind. (My hair is tired of being here, too.) It is time to find some kind of new normal and do the work...whatever that work might be each day. And be grateful that I have such precious work to do!

What a Month!

Whew! What a month August was! I am sorry for not posting more frequently...or at all.

As is the nature of this blog and Beckett's health, I will warn you that you possibly do not want to be snacking while reading. :)

We were on the road for much of August, and when we were not traveling, our days and evenings were filled with swimming lessons, back to school events, and medical care for Beckett.

In just 3 weeks in August, we traveled to Dallas three times and Houston 2 times.  We saw the GI doctor, the surgeon, the CF specialist (pulmonologist), and he had a couple of different tests run.  So I actually had a lot to update on, but just no time and/or energy to do it!

GI Update
We saw the GI doctor at the first of the month.  Beckett's flushes were unfortunately very unsuccessful at this point. She changed up the plan of what we needed to flush through the cecostomy. Then, if that didn't work within 12 hours, we were to give him an enema.  In addition, she put him on Flagyl for the first week of every month to treat Small Intestinal Bacterial Overgrowth, as well as Erythromycin to help speed up the motility of his GI tract.

The Flagyl and Erythromycin did seem to help with his severe distention so that was good. However, the flushes were still going wrong...like literally the wrong direction. So as soon as we put the flush in, it all refluxed back up and out of the button site.  So clearly, this wasn't going to work as not only was the flush not coming out, but it wasn't even going through him or in him. Then, the button started leaking stool...a lot of it. So we went back to Dallas for a radiological study to see if the cecostomy tube was in the right position.  This would help confirm if it was a mechanical issue with the tube or the flush just not working.  The tube was confirmed to be in the correct spot, and of course, the flush didn't come back out at the hospital (for them to witness).  It waited until about 15 minutes after leaving the hospital. Frustrating. It has been tough, and sweet boy shed many tears over the situation. Not easy. Long month.

The flush recipe has since been changed and....drumroll, please-- Nearly 2 months post-op, and it is working. For the last week, the flush has been doing its job. Hallelujah! We are so relieved and thankful for that! He is on quite a hefty amount of meds for it to work, but it is working! Unfortunately, he is still leaking a lot of stool, which is definitely a problem.  We hope to get that resolved quickly.

Surgery Update
The surgeon is very pleased with the healing of the incision and the tube site. He has a small bit of something called granulation tissue around the button, but it is not horrible at this point.  He unfortunately seems to have a bit of a rash around the button, but it is controlled and not causing Beckett any discomfort.  The surgeon does not need to see Beckett again unless there is a problem.

CF Clinic Update
We really like the CF clinic in Houston at Tx Children's.  Of all the specialists that we saw there, I would have to say that he is my favorite.  Hence, the reason we drive all the way to Houston to see him. Unfortunately this time around, the appointment was the morning after the GI appointment in Dallas.  So that made for a busy couple of days and three tanks of gas!! There is nothing to eventful to report from this appointment.  He wasn't overly impressed with Beckett's growth, but he also wasn't overly concerned about it. We did learn that Beckett's pancreas elastase test came back showing moderate to severe pancreatic insufficiency.  This does go along with Cystic Fibrosis. It means that his body is not absorbing food appropriately (which could make weight gain quite difficult).  We discussed his enzymes-- the med that helps his body break down, digest, and absorb food-- and were instructed further on these.  We also decided to return for a repeat sweat test. The sweat test came back normal. No big surprise there...it has been normal in the past, and he has never followed those text books!

Genetics Update
This can be slightly controversial, but we sent Beckett's blood work on to whole genome sequencing. They believe through this process, perhaps they can discover the cause of Beckett's trouble.  In turn, it might be able to help other people some day who are struggling similarly. It also might help us know how to treat his health problems and how to best help him.

And Coming Up--
Tomorrow Beckett has a GI appointment, so back to Dallas we go.  Prayers for safe and easy travels for me and Beckett would be very appreciated.  Please pray that we get some ideas on how to improve this leakage problem.  Also, I am going to talk to her about the possibility of a CF specialist in Dallas seeing Beckett.  After our constant travels in 2 directions last month and some discussions with doctors, we feel that - as much as I like the CF doctor- we need to get all his specialists in one place. And we have decided on Dallas. It will not only help with the traveling, but it will also help in the consistency in Beckett's care.  This necessary consistency is actually the bigger reason.  The communication within one hospital is much easier and more streamline and everyone is able to work together for a greater good it seems.  However, we are not sure if we will be able to find a CF specialist to see Beckett in Dallas as he is so very non-classic.  Praying for just the right doctor. And if there isn't one in Dallas, then we will continue to juggle the two.

We also will see Endocrine again soon.  The GI thinks that we need Endocrine to check on a couple of things for us including diabetes and hypoglycemia. And the geneticist thinks it could be helpful to discuss growth hormones. She says there is no way to know if they will work for Beckett or not, since we do not know his diagnosis, but that it may be worth looking into.

OK, I think I have covered all of the major updates in this whirlwind of a post.  Pretty quick and to the point! I will post more soon. It shouldn't take me so long to update again. 

I also have some pretty sweet picture of my big boy going to Kindergarten! I will be back to share those soon.

Thank you so much for your prayers over this last crazy month.  We really appreciate them and need them. So thank you. And thank you for your texts and messages checking in on us! We will keep you updated and let you know how he is doing!

Love-
Kaylan

Not the Best Day

So today was not the best day.  Not the worst by any means, but definitely not the best.

Beckett's flushes are not actually going through him.  Instead, they are sitting in him, and I can only assume that all of that fluid is being absorbed and causing many leaked diapers--if you catch my drift.

His button does not feel good.

He won't drink his Miralax or eat his Ex-lax.  This only compounds our situation.  So the home health nurse had to place an NG tube in him to get liquids and medicine in him. As soon as he saw it, he started to cry and thrash around.  He told her "no" and "special button."  His way of letting us know that he now has this fancy button and doesn't need the tubie in his nose.

So tonight, my almost 3-year-old shuffled around the house like a full term expectant mother, looked up at his daddy, pointed to his distended belly and said, "I hurt."

Break.My.Heart.

He did have fun moments today. He loves our new puppy, Turbo, and he enjoyed making silly faces at his cousin on Facetime.  He played legos with his brother.  He had speech today which he loves! So it isn't all sad.  But over the last couple days, the feeling bad is definitely creeping in and starting to take over.

Finding the right flush and timing is something that can take time and patience.  And we were aware of that going in.  And making a toddler take lots of medicine can always be a challenge.  We mainly stay optimistic. We are thankful for how well he is doing.  But I think it is probably okay to have a day where you feel a little overwhelmed by it and just wish you could take it all away.

And then at the end of that day, I pull a verse out of my jar (Thank you, Amy!) and read:

I have set the Lord always before me. Because he is at my right hand, I will not be shaken.

Psalm 16:8

But as for me, I will always have hope; I will praise you more and more.

Psalm 71:14

 

 

Praising our God for giving us hope through his Son. Praising our God whose grace is sufficient in my weakness.  Praising our God who can make all things new again.

 

Asking God for healing. Asking God for renewed energy and patience. Asking God for the right mixture for Beckett. Asking God for understanding and peace for Brant.

 

Thanking God for reminding me of his truths and for reminding me of the bigger picture.

 

 



Surgery Week in Pictures

I would call this "Wordless Wednesday", but we all know that would be next to impossible for me! I almost always have something to say! :) But this will be "Few Words Wednesday"...

 

Standing in front of the Ronald McDonald House the morning of his surgery-- A place where BIG things happen.

An early morning and a little boy who knew exactly where he was.

Almost done now? Sweet boy did not know what coming. We try as much as possible to explain what we can explain to a two year old...but there is only so much that he can understand.

Oso makes a very nice pillow--even in Recovery.

This is on Thursday- 4 days post surgery- trying to stand.

He only wanted to be in bed.

We went exploring, and Beckett loved the trains! They have quite the display!

He was able to stand and play some on Saturday!

We got out of there late on Sunday evening!

Thank you all so much for your prayers and encouragement throughout the week- and since.  We are very thankful. I am amazed when I look at the progression of the pictures throughout the week.  It took him about another week after coming home to get completely back in the swing of things, but he is doing great! Beckett has been doing well ever since, and we know what a wonderful blessing that is.  We had another appointment in Dallas on Monday with the ostomy nurse, and we got his "special button" all cleaned up.  He is so tough!  The nurses are always impressed! Soon, I will post a more detailed update on how the last week and half since we arrived home has gone.

Thank you for praying and for your love towards our family.