Thursday, May 17, 2012

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!

Tuesday, May 8, 2012

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!

Saturday, May 5, 2012

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.