A Long Week

Happy Monday Everyone!

Last week was a long one for us! Beckett had an appointment in Houston with the developmental specialist.  This is one of our very last appointments in Houston. We have almost successfully moved all specialists to Dallas at one centralized location. Whew! It has been a job, but I know we will be thankful to have everyone in the same spot! One of these days, I am hoping that we can manage to schedule multiple specialists in one trip! Wouldn't that be a blessing? Besides the convenience of having everyone in one hospital system, this will also be better for Beckett's healthcare.  Now the doctors can communicate very easily through there own system.  This will be very positive and helpful for him and all who are involved in his care. Our GI in Dallas has helped Beckett so much this year, and we feel very confident in our decision to centralize his healthcare here! We are very thankful for Children's. (I missed expressing this at Thanksgiving, so I will now! :) )

Anyways, back to the developmental appointment, I do believe the doctors instantly fell in love with Beckett and his endearing personality.  They were very impressed with his communication and his visual spatial skills. This child can stack some blocks!  His biggest struggles seem to be in fine motor and gross motor.  He is 38 months and currently at the 18 month level for gross motor skills. I honestly was a bit surprised that his delay was this significant...over a year and a half behind. Currently, Beckett is in speech therapy and occupational therapy. We will be adding physical therapy to this list. 

Beckett absolutely loves going to his therapies here.  He likes to think he is going to school and often packs a backpack full of treasures to take along with him.  We really like his therapy center.  Sadly, the looming deadline, January 1, is coming quickly.  This is a looming deadline because at this point all the hard work that we have put towards meeting the deductible will start over.  Sigh.  I have no doubt that we will meet it again in 2014, but it is a burden the first few months of the year.  Each therapy session will cost around $70 until we meet that deductible.  I think we have decided that we will have to cut back on his speech (at least to just once a week) until the deductible is met since in a turn of events (and after 2 years of quality speech therapy - not to mention being in a family of speech therapists) speech is now his strongest point. We will continue to do everything that we need to do to help Beckett grow and learn...no matter what.

Beckett had a lot of tummy troubles last week.  His system just shut down and flushes stopped going through him. The doctors believe it was due to a virus. He never had a fever, but he did get a horrible rash.  Often, in children like him, when they get a virus, it takes so much energy to fight the virus that the already sensitive GI system just can't function. This causes a lot of discomfort because not only is the stool not moving, but all the additional liquid that we put in his button to move the stool through, is sitting in there, too.  This is very uncomfortable for our little guy causing distention, irritability and exhaustion (as to be expected). We frequented the pediatrician's office a few times, got some x-rays, and eventually got the poop out.  Our pediatrician has done a great job. She works very hard for Beckett. She has researched and learned and stepped out of the box to help us. 

The ER doctors here were not lying when they said it would be hard for us to live here with a child that has chronic health conditions.  It is hard. And when his gut shuts down, and we are in the wrong big city in Texas, it's really hard...because unfortunately you cannot just walk into a hospital and tell them you need a quick x-ray.  Then, when Dallas ices over and everything just about shuts down, it is even harder. But I know that God has brought us here to where we are for a reason...well, lots of reasons.  I believe that this change in healthcare and this fresh set of eyes has really helped Beckett. He is thriving. He has gained a couple of pounds and grown an inch! He is feeling good...despite the bad days here and there.  Some of you may have seen on facebook this story:

For all my friends that have prayed for and supported Beckett--especially during his surgery for his ACE (cecostomy), I have to share this story: This morning we were on our way to Walgreens (again!) to get more golytely. He has been backed up this week so we have are doing 2 flushes a day. I told him we had to go get more flushie, and that precious boy said, "My flushie makes make me happy." What... a special moment it was to hear, out of his little mouth, that the flushes help him and it has all been worth it...even when he has to do two a day. We could see it, but to hear it in his sweet little voice....Our God is so good! Praising him for the relief the surgery has brought our son! Praising God that Beckett is beginning to express the way he feels! And what an amazing perspective this little guy has... Thank you all so much for your prayers, encouragement, and financial support throughout this whole process. We are blessed.

 

So yes, we still have struggles. And yes, his system still shuts down sometimes. But the bigger picture here is that he is doing well.  He is making progress in so many ways. And we are so very thankful.

 

Thank you for your continued prayers. Thank you all for your encouragement last week when he was struggling with his tummy troubles.  I appreciate it so much.  And thank you for your prayers during this transition that came with our family's move.  The transition in his healthcare has been a long one, but we are just about done.  We are blessed to have friends and family like you all. Thanks.

Courage for Corynna

My dear praying friends, I ask that you all lift up Corynna and her family in prayer.



Please bear with me with this scattered post. It is one of those times that I have had trouble putting words to paper (or computer).

Corynna is an amazing teenage girl who is fighting mitochondrial disease. Mitochondrial disease "Mito" is a horrible disease that basically zaps the energy out of every cell in your body leading to cell death and organ failures.  UMDF.org describes it like this:

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

How does mitochondrial disease effect the body? UMDF.org describes it:
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease.  The affected individual may have strokes, seizures, gastro-intestinal problems, (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease

Corynna struggled with some GI problems and constipation as a toddler, but it did not interfere with her activity or life style. When I met Corynna about 3 years ago, she was on a competitive dance team.  Now her body does not have the energy to walk.  At the time that we "met", Corynna had severe GI issues and constipation landing her in the hospital several, several times...at this time she was not diagnosed with mitochondrial disease. The first time she was hospitalized, she was diagnosed with idiopathic constipation. She has not been able to eat solid food since 2012.  Her intestines failed her first. She had surgeries to remove her gall bladder and place a Malone/ACE (does the same job as a cecostomy). Surgery was extremely hard for her to recover from, and she remained in the hospital longer than typical. The ACE never really worked for her.  Her colon was done.  She had an ileostomy (a bag placed on the outside of the body at the end of the small intestine) placed as well as a G-tube (feeding tube). However, she can not tolerate feeds in to her feeding tube so she has required TPN (feeding directly into her veins so her tummy doesn't have to do anything).Shortly after she began having fainting spells due to drastic and quick changes in her blood sugars and other changes.  Then started the troubles with breathing and neurological issues.  A year ago, Corynna traveled to see one of the best mito doctors in the country and left with a clinical mito diagnosis. She is now in the care of hospice.

Her body can no longer handle her TPN (her nutrition), and they have had to stop it.  They have changed many meds around to keep her comfortable and have changed her IV fluids to include some calories but not near the amount of nutrition that she received from TPN. Things are very hard. Her body is growing weary.

As a dear online friend said it, "In the three years I have known her she went from dance to wheelchair almost overnight."

There is very little known about mito, and it is Corynna's goal to spread awareness of this disease.  It is such a tough disease because as we have learned it is very hard to diagnose and even harder to rule out. Mito presents hundreds of different ways at different ages and has differing levels of severity. There are over 40 types of mitochondrial disease. Mitochondrial disease it genetic.  It is in the DNA. So as Corynna says, "“I have said quite often that my disease is genetic and is in my DNA. God has had this plan for me all along.  This is the life I was meant to live.”

Corynna has taught me so much. Over the past three years, she has helped give me a perspective that Beckett could not yet give me.  Because he wasn't able to express how he felt, I often talked to her about what it was like to have an NG tube, a G tube, an ACE, enemas...And she has given me patient perspective.  She is so wise.  She is truly a special young lady giving support to grown mamas at the young age of 14, 15, & 16. She is known as Dr. C. We all love her and the amazing insight she has given us. Watching her grace is truly humbling.

The county in Ohio that she lives in has declared November 25, Mitochondrial Disease Awareness Day. Please take time to learn more about this disease.  I have read that more children die from mito than all cancers combined. We need to fight for a cure and awareness. It can affect anybody at any age and any organ.

Here are some links, if you would like to learn more about mitochondrial disease or follow Corynna's story:

Courage for Corynna facebook page...this will give you more specifics on exactly what to pray for
https://www.facebook.com/CourgeforCorynna

The Corynna Strawser Research Fund for UMDF
http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8855871/k.440E/The_Corynna_Strawser_Research_Fund.htm

Article about Corynna
http://www.ehospice.com/usa/Home/tabid/5466/tabid/9364/ArticleId/7624/language/en-GB/Default.aspx

About Mitochondrial Disease- UMDF
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934627

Video about children affected by Mito made by a dear friend
http://www.youtube.com/watch?v=qyLjocnJ2_4


Dear God,

I lift up sweet Corynna and her amazing parents to you, Lord. I pray that you wrap your mighty arms around this dear family and cover them in peace and comfort.  My heart hurts. Really hurts. But I know that You are good. You are creator. You have known and loved Corynna since before her parents ever even held her, and you continue to love them all with a relentless love. Thank you so much for the cross.  Thank you for the comfort and the hope that we have in you. Thank you for sending Jesus to die for us on the cross so that we can have hope in heaven...hope in eternity with you, God, praising you. Hope of being whole again...no more pain or sorrows. No more tears. Lord, I pray for a miracle for this sweet girl. Please hold her family closely to You.

In Jesus's Name,
Amen

Hear my cry, O God;
listen to my prayer.
From the ends of the eart I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
Psalm 61:1-3

My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
Psalm 73:26

What Have I Been Up To?

So admittedly, I do not blog as much as I used to.  I don't really think it is for lack of action around here. I wish I could say that everything was slow and boring, but alas, that is not the case. I am going to try to start blogging more, and perhaps include some how-to's (such as how to paint a chevron pattern) and other crafty ideas. You might not know it, but I really like to do artsy and crafty stuff when I can find time.   So here is a glimpse at something about me-- besides my boys.

A little peek at my additional hobby/work that keeps me busy (in addition to my two very little busy B's):

 

 

 

 

 

Painting has always been a fun hobby for me.  Since I was a little girl, I loved all things artsy! So now, I use my art as a little side job. Something that I enjoy, and it works out wonderfully because it allows me to stay home with the B's for now.  I don't always get to paint as much as I would like, but when I do, it can be a great stress relief to me (after the kids go to bed).  If you like anything you see here, you can contact me or look me up on facebook: www.facebook.com/busybsdesigns

I also have an etsy shop: http://www.etsy.com/shop/BusyBsDesigns?ref=search_shop_redirect

I am happy to work with you on any project you may have in mind! I can collaborate with you and work within a very wide range of budgets to come up with the perfect piece of art to personalize your space!

I just wanted to take a minute to show you what I do in all my "spare" (haha!) time.  I hope you all are having a wonderful week.  I will update more on our family soon! Thanks again for checking in on us!

~Kaylan 

My Pumpkins

My sweet little pumpkins really look forward to going to the pumpkin patch each year! They love checking out all the different size pumpkins and looking for the big giant ones and the teeny tiny ones.  They even love to pose with said pumpkins.  So we have A LOT of pictures to share this year of our time at the pumpkin patch!



 

Much fun in the hay maze!! There is a stone alligator, known as "tick tock crock" to our boys, located right at the end of this hay maze.  This reptile is want Brant is eyeballing with uncertainty. They were a little nervous to come to the end of the maze as the creature was waiting for them.

 

Brant was happy to pose with the pumpkin librarian, but little brother felt a bit nervous about this creation.

 

Making a funny face when looking at the pumpkin bee. (See next photo)

 

Brant and I managed to talk him into it...

 

 

Oh my big sweet boy! I am so proud of this kind-hearted little guy!

 6 years

5 years

4 years

 

 

Our silly Beckett boo. :)

3 years

 

2 years

 

 1 year

 

I love the way Beckett is looking up to his brother in this picture. Brant means the world to Beckett.  He is his best friend.

 

 Oh, these faces. Love.Them.

 

 



 

 

Happy Halloween!

 

Our Halloween week has been a little extra busy.  We have a few prayer requests.  Brant was sick with croup last week, and this week has been Beckett's turn. He had a high fever Friday and Saturday. We took him to get checked out on Saturday, and the doctor said it was a virus.  Fast forward a couple of days, and Beckett sounds awful and feels miserable.  So we head back to the pediatrician's office (for the third time in a week- leave it to the Laird's!) and, he managed to develop a severe ear infection, croup, and wheezing.  When his body is fighting an illness, his digestive system also slows down.  Before the fever even started, I could tell his digestion was slowing.  So we are flushing his cecostomy 2x a day and doing breathing treatments 4x a day, along with antibiotics for the infection and oral steroids for croup.  Please pray that he feels better soon and that all the medicines work.  Please also pray that Brant does not get sick again. Thanks so much for checking in! We hope ya'll are enjoying your fall, and have a Happy Halloween!

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.