For the Love of Cheerios...

Please don't let the sweet child be allergic to wheat!

Beckett absolutely loves his multi-grain Cheerios- they actually make up a large amount of his diet!  We are praying that doesn't all come to an end when we get the results to his first round of allergy testing! 

We had an appointment yesterday with little man's GI doctor.  For some reason, the appointments are always overwhelming, and they never really get any easier.  There is always a lot up in the air and many "wait and see's." There is just so much that we do not know, but we are definitely making progress!

Our doctor was very positive about Beckett's growth.  He gained a half a pound over the last 2 months, grew an inch, and has improved energy.  He said we are moving in the right direction!  He is up to the 3rd percentile for his height now-- slow and steady progress. We are optimistic that the enzymes are working to help his body better use his calories. We have increased the enzymes, so hopefully we will see more positive results as time goes on.  He definitely "looks better" according to everyone who sees him. :) The G-tube is still on the table if his growth doesn't continue at a good, catch-up pace.  He said that we now know that a feeding tube helps him, so if it is needed, we can move forward with a G-tube. We are going to give him more time and hope that he continues to grow well and pick up the pace a bit. 

Beckett is still having some interesting symptoms with his bowel movements, diaper rashes, and tummy issues.  This, in combination with the positive reaction from the enzymes, leads the doctor to believe Beckett has malabsorption issues.This baby needs so much food to grow! 

He also decided to go ahead and order some blood work to test for allergies.  As he got a closer look at Beckett's skin and listened to our struggles with his skin, he also referred B to allergy and immunology. He decided this was very necessary considering how very sensitive he is to bug bites, diapers, etc.  Ever since he was a newborn, if you held him or lay him on something or if his clothes rubbed against him, the place of contact would be very red for quite some time.  Doctors always noted it, but moved on. At the appointment, all up his back and neck was red during the appointment. Our doctor asked me about it, and I told him that is the result of laying him on the measuring table.  We have also had to completely stop using disposable diapers as they were literally burning his bum.  We have never used cloth diapers full time, so this is a new challenge.  We are having to invest more to build up enough cloth diapers to use all the time, including on wash day.  It takes a lot more diapers than you would expect! But his bottom is recovering. After consulting with dermatology, he was put on a steroid to try to help his bum heal.  This is definitely not your typical diaper rash.  I don't think "rash" really does it justice.  We actually made 4 trips to the doctor for this situation.  The doctors were amazed...that bad.

This is a picture of his swollen hand due to a reaction to something...Hopefully, the allergy testing will give us some answers. You can't quite tell how swollen his hand is if you don't know how small his hands are. But take it for me, it was big.  The nurse at the doctor's office noticed it from across the room, and asked what on earth he did to his hand...It was big and reddish, purple in color.

Genetics decided to jump in on the blood work, too!  They are checking for a couple of other things, including more detailed Cystic Fibrosis testing. We also re-checked his thyroid one more time! It took both arms to get enough blood for all the different tests, but Beckett is such a trooper.  He is one strong little man!

We should hear back about the allergies tomorrow.  This is just a blood test so it is not thought to be as reliable, but it was a good place to start.  I am a bit nervous to hear the results. To be honest, it would be absolutely shocking to the point of disbelief if he has no allergies.  Brant tested positive for allergies to dairy, wheat, soy, eggs, peanuts, and then some at age 2. So this is nothing new to us. I am just concerned that if Beckett is allergic to many of his staples, that we are really going to struggle to get all the calories in him that he needs to grow. After all the very scary testing we have been through over the last 1.5 years, I cannot believe I am this nervous about allergy testing!

I was updating a friend of mine, listing off the newest ideas and tests and hypothesis, and she said, "I never in a million years would have thought ya'll would still be trying to figure this all out...He's almost 2." I never thought we would be either.  Hopefully, we are getting closer to feeling better, growing well, and finding answers to help this precious little man.  Thanks for praying!

The boys playing peek-a-boo with each other!

 Beckett (and Brant) thought Brant was hilarious playing peek-a-boo using the trash can over his head. He is definitely a goofball who keeps us laughing.  He insisted I take a picture with the can on his head. Don't worry this trashcan is only used for papers and such in the office!

No Words Needed

Disney Days

A couple weeks ago, we enjoyed 3 wonderful days at Disney World with our big boy, Brant.  We are so thankful we were able to spend this time with him, and it was a wonderful and busy get-away.  This was actually our first vacation since our Honeymoon! We had a blast! I couldn't decide which pictures to share, so I will be posting a bit of a picture overload! But I really enjoy using this blog as a way of documenting our days, much like a virtual scrapebook. So here we go!

Day 1: Magical Kingdom

Brant woke up at 6 am in a panic! He jumped out of his bed and circled the room, saying, "What about Mickey Mouse? What about Mickey Mouse?" I think he thought we were going to miss him!

 This child loves carousels. It was the first thing we did there, and he loved it!  Notice the purple horse!

 And now the purple tea cup! We also rode in the Dumbo dressed in purple...It's an ongoing theme.  :)

 Brant absolutely loved the tea cups. So much so that we jumped off, and got in line and did it all over again. He probably would have been happy to do that all day long, but his mom couldn't handle it!

 He still reports driving a race car as one of his many favorite parts of our trip. (I am thinking there were no purple race cars!)

 Staring in awe as we rode through the classic, "It's a Small World" ride. 

 Doesn't he look cute?  This was a nice and relaxing break!

 This was his first time to see Mickey Mouse an friends! He really enjoyed them...from afar. :)

 I am thinking he was pretty tired of all the picture taking by this point.

 He was not thrilled about meeting Mickey and Minnie.  This didn't really come as a huge surprise to us! He started out just growling at Mickey and Minnie, so they decided to pretend "fight" back. We finally got him to take a picture as long as he was safe in daddy's arms!

What a special day!

My Lack of Posting!

I am sorry about my complete lack of posting lately! I had big plans of posting all kinds of fun pictures from our trip to Disney World last week, but unfortunately we had to send our desktop away to get repaired! So the picture will have to wait until I can figure something else out!

The hubs and I took Brant to see his beloved "Hot Dog," a.k.a.Mickey Mouse and spend some good quality time together. It was a special time and I think Brant really enjoyed having us to himself. We are so thankful we had this opportunity! We know it wasn't necessary to take Brant all the way to Disney World for quality time, but it really was a lot of fun for all of us. Some times quality time is a date night dinner with one of us or a trip to Target, but this time, we decided to go big...a once in a lifetime kind of trip. Well, maybe twice in a lifetime so Beckett can go to Disney World some day, too.

When we walked into the hotel with Mickey his arms, (Brant's first time in a hotel) he said in complete awe, "This is my dreams." In that moment, my heart just melted. AND now we know that all we need to do is take him to a hotel! Who needs the Magical Kingdom anyways...

I will be sure to post pictures of Brant growling at...or uh, meeting...Mickey Mouse and friends as soon as I can.

Busy Week

In the last 8 days, Beckett saw a doctor on 4 seperate occasions. That's a total of 4 waiting rooms with a toddler (and sometimes a preschooler)and 4 panic attacks (well, not really...but tears were shed) for my little guy. In addition to those 4 appointments, we also squeezed in a visit with the home health nurse, his ECI case manager, his developmental therapist, and his speech language pathologist. And finished the week off with a quick trip to the lab at the hospital downtown. And we somehow managed a parent-teacher conference at Brant's school, as well as baking and taking cupcakes to school to celebrate Brant's birthday--which isn't until the summer, but we wanted to get to celebrate at school! Whew! What a week!

Here's the big update: at the end of the week, the doctors decided to let Beckett try the next two weeks without his feeding tube. Yay! This all started when he realized that he could pull out his own NG tube! And the result of pulling out the tube for a congested toddler? Easier breathing! So he got that figured out, and I knew it was going to be hard to keep that sucker in! After some discussion, our pediatrician and GI decided to let Beckett try out the next couple weeks without the night time continuous feeds. I am so very thankful that his feeding tube was able to help him grow and give him some extra energy to learn new things.  Most people who have known him and see him now comment on how good he is looking.  But, we are hoping that now that his enzymes are well established (and seem to be helping greatly with his digestion!), he will be able to gain and maintain his weight without the tube. We are excited about this step! Putting him to bed seems so simple now.  I think I appreciate things that I never really thought to appreciate much before...like the idea of wearing footie zip-up jammies without having to cut a hole and figure out where the tube is going to come out.  Sometimes, it's just the little things, ya know?

And the slight downside of the week: his bad virus turned into an ear infection (even with those tubes!) and sinus infection. Sooo...back on antibiotics. No biggie really. Just wish that he could catch a break from all the little infections.  It tends to affect his tummy when he has to be on antibiotics.

Beckett has been feeling a bit under the weather lately, but he is such a trooper. He is so tough and I am so proud of him! He is learning new things and has started saying "mama" regularly. It is such a sweet word! I love it, and am so thankful. He slightly over generalizes and calls other women, "mama" but I am still thrilled! When we go to the grocery store, he waves his hand at everyone he sees. He is very friendly and outgoing. He tends to make everyone around him smile- even with a runny nose!

Thanks so much for checking on Beckett and for praying for him. We appreciate your prayers. He seems to be doing all-around really well these days, and we are so thankful for that!

~Kaylan

Happy Easter!

Brant took his egg hunting very seriously this year!He didn't want the egg; he just wanted up! I don't think he was very interested in the egg hunt.
Beckett got one!

Beckett just choosing to step over the egg. Who needs it anyways? Can you tell who got the most eggs?

Not easy getting them all to look and smile! The boys with their little cousin!

Handsome man!

Getting a picture of both of them together is very tricky!

Sweet Beckett!

We had a wonderful time celebrating Easter with family. The boys enjoyed multiple Easter egg hunts...Well, Brant loved hunting for eggs; Beckett really didn't see the point in it! He just tended to walk right by even the most obvious egg. Ha! We had yummy food and good fellowship. But really, we know that Easter is not about the bunnies, the plastic eggs, or the fancy new clothes. We enjoy having fun as a family and watching the kids' activities. We enjoy good visiting and yummy treats. But for us, as Christians, Easter is much bigger. It is to celebrate our risen King. I do not know how I would go through this life on this earth without the hope I have in Christ. Without my comfort in the cross. My comfort in knowing that Jesus suffered on the cross, felt on the sufferings of this earth, so that I could spend forever worshiping God in heaven. My hope in knowing that I have a Jesus as my Savior. My comfort in knowing I do not have to fight the battles of this earth alone. And my comfort knowing that the struggles on this earth are temporary, and that glory in Heaven is eternal.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9

Thank you God for sending your Son to die on the cross to save me so that I can spend eternity in heaven with you. Thank you for loving me. Thank you for the hope I can have in knowing Christ as my Savior. I am so thankful that this world is not my home.

I absolutely love this song and the message of it. Praise be to our God who is mighty to save.

Mighty to Save by Hillsong

My Saviour, He can move the mountains,

My God is Mighty to save,

He is Mighty to save.

Forever, Author of salvation,

He rose and conquered the grave,

Jesus conquered the grave.

Shine your light and let the whole world see,

We're singing for the glory of the risen King...Jesus

Health Update

Late yesterday afternoon, we had to take Beckett to the local ER for fever, lethargy, and heavy breathing. Even after 2 doses of medicine, his fever was 104.5 upon arrival to the hospital. A chest x-ray confirmed that he has bronchiolitis. We were released from the hospital late last night because we have the ability to keep him hydrated due to his NG feeding tube. (Another hidden blessing of the tube, I suppose.) We are able to put clear pedialyte through the feeding tube all night long with his pump. We also conveniently enough already have a nebulizer. So the doctor told us that if that became necessary, we could simply use the equipment and meds that we already have. We were free to go home. I was so thankful to put sweet Beckett to sleep in his own little bed, and I know he was happy to be there.

This morning we took him into the pediatrician for a follow up visit and to check his lungs. Thankfully, I was able to get Brant checked out too! (He is having a little trouble with his allergies, but he is well.) Beckett's lungs sounded coarse today, so they did a breathing treatment at the office. They also drew blood to check his white blood cell count.

Brant watched as they drew the blood and set up the nebulizer, and he looked a bit anxious. But then he got a strong, proud face, and said to the nurse, "you know, I am the big brother." It was a sweet moment for me as I got to see the love Brant has for "his baby--the best baby in the whole world."

The white blood cell count was actually very low, so it seems to be viral in nature as opposed to pneumonia. The pediatrician prescribed breathing treatments every 6 hours. We are just to watch him closely throughout the weekend, continue pumping pedialyte through him, and do the breathing treatments. They gave me things to watch for that would send us back to the hospital pronto.

It is amazing how quickly little children can get sick. All in a matter of a couple hours! Thanks for all the prayers last night. We really appreciate them. Please continue to pray for Beckett as he still has high fevers and does not feel well. We are praying that this doesn't become pneumonia, and that he is able to fight the virus off quickly. Please also pray that Brant does not become ill as well. Thank you so much for checking on us and for your prayers.

~Kaylan