Back to Blogging

It has been YEARS since my last blog entry! WOW! Life has been crazy-busy in a good kind of way. The kind of busy that happens when your house is loud with little boy chatter (and other noises little boys like to make) and you are surrounded with pillow forts and games of tag (in.the.house).  It's a blessed kind of busy.

So much has happened.

A third little boy. Bauer. Now age 5. He is such a precious blessing. Our little rainbow.

New schools.

Homeschool.

More doctors.

New activities and interests all around.

Covid-19, Distance Learning, Social Distancing, Masks.

More Homeschool.

And that just about sums it up! 

I cannot tell you how many times over the last several years, I have wanted to start writing again.. Maybe our story will help one person. Maybe it will just be a way for me to remember motherhood and this sweet season of life.

Last year, Beckett, our middle son, told me that the only way your story can bring glory to God's is if you share it. (More on this later.)

So here I am. Back to writing. It would be impossible to fill you all in on the last 6 years of life, but I will slowly retell some of the key stories. 

Current Day: We are now officially homeschooling all 3 of our kids. Brant (now 13- holy moly) has attended public school for his entire school career, while Beckett (now 9) has been homeschooled for 3 of his 4 school years. So I have spent a lot of years with a foot in both worlds so to speak giving me a unique perspective. After MUCH discussion and prayer, we have decided to homeschool all of them this year. I have spent hours reviewing homeschool curricula and making plans. I will also be sharing all of that here, as a way to encourage other new (and old) homeschool families. 

Check back this week with my Kindergarten school plan- including read-alouds and STEM ideas.

I can't wait to dive back in to blogging. I plan to use this blog as a place to share school ideas, literacy and art ideas (helpful regardless of where school is happening), and the stories that unfold in our family of 5. 

~Kaylan

Almost

Tomorrow is the day that we take Beckett to the hospital for his tonsillectomy.  He will be admitted tomorrow, but the surgery is not actually until early Tuesday morning.  They want to fill his body full of fluids the night preceding the surgery, so that he will be ready to take on the surgery.

Beckett and I had an interesting conversation today--interesting for a 3-almost-4 year old anyways.  In some ways, it made me a little sad and in other ways, it made me thankful.  I was explaining to Beckett that we were going to go to the hospital and they would take his tonsils out.  To which he said, "like this, ahhhhh." I said, "That is right. That is where your tonsils are." I then continued to tell him that he would sleep with mommy at the hospital.  My little 3 year old said, "Oh, in my doctor bed?" I said yes. And he says, "Oh ok."

That was it. That was his little bitty self's thoughts on sleeping at the hospital.  "Oh ok." Thankful for his resilience, but a bit sad that he has to be so resilient.  Sad that he knows what a "doctor bed" is.  Sad that he continued on to ask if he would be able to sit up in the bed so he could color (his very favorite activity!).  But I am thankful. God is good.  God has given Beckett such an amazing strength for such a little boy.  God has removed his fear so that at least he doesn't feel scared going into this.  God has covered our Beckett.

One thing (among many things) that this chronic illness has done: It has taught our family what it means to be resilient.  I believe that our two little boys are two of the most resilient children. They have learned what matters and how to focus on that.  At a very young age, God has worked in them and through them to show HIS strength and love and power.

Please continuing praying for our family. It is always hard to have one in the hospital and to feel divided and pulled in several directions.  We are so thankful for your prayers as we stay at a new hospital, Beckett undergoes and recovers from surgery, and for our safety while we travel back and forth, and also for the safety and well-being of our big boy.  Beckett has nearly always extended his expected hospital admissions, and we are really hoping that this time, he recovers quickly! Primarily, he must drink (and his flush must work). They told us that if it comes down to it, they would put in an NG tube to go home.  But we are REALLY praying that he drinks!

Thanks for your prayers. We are thankful.  We know we serve a mighty God and continue to be amazed as we watch Him work in our lives and provide for our family.

Do not be anxious about ANYHING, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6

This is one of Brant's favorite verses...We are told to not be anxious about ANYTHING. It feels easy to reply to that, "yeah, well, my son is chronically ill, so I can't help but be anxious about that."  But that is not what God has commanded us to do. We are not to be anxious about ANYTHING.

So we give this all to God. In His name. AMEN.

Allergies?

I haven't posted a blog entry in a ridiculously long time. Here's the problem...I have thought several times about posting, but when I think of all the blogging I have to catch up on, I am not sure where to start.  So I don't.  So here is what I am going to do...I am just not even going to try to catch up. :)  I might eventually get to it, but for now, I am just going to update about our appointment today.

We made the trip to Dallas today to see the food allergist.  Food allergies had been ruled out years ago as the cause of his major GI troubles.  You see, as a baby & young toddler, he was on an "elemental diet." This is the absolute most sensitive diet one can be on.  This is the premium for kids with severe severe food allergies (along with other issues).  And as you know, despite being on this diet for 15 months, his stomach and growth problems did not go away.  Thus, we know that food is not the culprit of his inability to digest food. However, allergies could possibly be the cause of some of the other problems he has been having.

We went to the allergist to look for a cause of some rashes that he has been getting.  He also has fairly constant drainage, sinus & ear infections, and cough. His big brother has struggled a lot with allergies since he was a little guy, so it also makes sense that Beckett could have some kind of allergy involvement. So we finally got into the allergy clinic at Children's and made the 2.5 hour trip....actually today it took me 2.75- not sure what's up with that.

Little man got pricked and checked for indoor/outdoor allergies (dust mites, cockroaches, dogs, pollens, etc) as well as tomato and shellfish. 

And would you believe this?

The child from a family of allergic people is allergic.to.NOTHING.

You may be thinking, "That's good news!" And I get it, I do.  It does sound like good news, and it really is!  However, the doctor told us we can now assume that all of his runny nose, rashes, ear/sinus issues, upper respiratory infections that have lasted the last 3 months...none of this can be chalked up to allergies.  No need for daily Zyrtec for his drainage.  Nope.  It is all caused by virus/infection/illness.  Yikes.  The child has an illness almost constantly if that is the case. So now the question is why he is always sick?  I am sure this is going to help him get a lot of playdates. :)

It is also somewhat discouraging because there are times where we want to hope that if we take wheat or tomatoes or almonds or whatever, that his tummy would feel better. Maybe it wouldn't fix everything, but it could help a little?  But alas, this is still not the case.  It is a situation of a system not working rather than something upsetting the system.

We still have to be careful of what he eats because even though the food allergies are negative, there are simply some things that his system just cannot tolerate in typical quantities/form.  We only know this by watching his reaction, his tummy, and how his flush works.  This is a lot of trial and error.

I am SOOOOO thankful that I do not have to worry about severe, very sensitive food allergies with either of my kids.  I know this can be a huge and scary struggle.  I feel blessed to not have that burden, and my heart does go out to the families that do.  I was reminded in the clinic today how careful some families have to be.  Brant is allergic to peanuts, and we do carry an epipen for him, but his is only if he ingests it. He does not react to the powder or other people having peanuts, etc. And I am so thankful for that!

God is so good, and I am so grateful for a smooth trip there and back today. Thankful that the sun came out for our trip.  Thankful for no car troubles. Thankful that we ruled some things out, and this will help point us in the right direction.  He is so good. All of the time.

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!