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A few weeks ago Beck was sick for 10 days.  He was really sick….moaning while he was sleeping sick.  We went through antibiotics, steroids, doctor visits, and 30 treatments about 40 minutes each for those 10 days.  It was grueling for all of us…and worrisome.  Our lives, and the things that we spend time on look way different then most people’s lives…and it’s never ending, and very unforgiving.  We plan our days around morning and evening treatments, but as a whole we’re pretty much in a routine with the boys.  Most days we don’t even think about what needs to be done, it’s just what we do.  But, everything changes when either of them get sick.  On top of the extra doctors appointments, meds, treatments, cleaning equipment, diaper rashes for Beck…there’s this worry.  Are they going to have to be admitted?  Will they recover quickly from this?  Is this causing lung damage?  What will their culture results be?  Is this Pseudomonas again?  It’s quite an emotional battle, because all of these things are possible.  I’m so thankful to know that God is in control of all these things, and He loves Asher and Beck even more than we do.

Asher needed to have some allergy testing done because he’s been having trouble breathing through his nose for quite awhile.  We wanted to figure out how we could help him, and whether or not he was struggling with sinus issues (super common in the cf community) or if he has allergies.  This whole experience was honestly quite awful.  The first jab that the nurse gave him shot him straight up off the table and asking if they were all going to feel like that.  He had 50 to go through, and after 20 he was beside himself, and a literal mess.  I’m thinking he’ll never forget this experience, and it was by far one of the worst experiences I’ve had to watch him go through.  He Voxed Jeremy after it was all over and said, “Daddy, they really hurted me.”

I wish that he wouldn’t have had to gone through this, but we did find out that he’s allergic to Ash, European Olive, and Privet trees.  We’re thankful that it’s seasonal, and hopeful to be able to provide him with some relief now.  We haven’t seen a ton of improvement with the meds and nasal spray so we’ll probably continue to tweak them, but at least we know part of the problem now.

One of my cf mommy friends was putting together an exhibit at her cf walk of 65 rose tiles painted by adults and children with Cystic Fibrosis.  It was bittersweet watching Asher work so hard on drawing and painting his rose.

I feel like I can relate so much with this momma and the story behind 65 Roses.  It’s a sweet one, and I thought I would share it here…

“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.  Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research.  Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call.  After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis.  With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless.  He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”

Punkie Bear Beck continues to be a sweet blessing.  We feel so privileged to be able to take care of him.  We pray often for his little body, as he has a few more struggles digestively then Asher does.  We tried introducing milk to him again about a month ago, but it was quite obvious that he is still allergic and his body was not happy.  We keep praying that he will be able to outgrow this allergy.  

We’re also having to do blood work with Beck about every 1-3 months to keep an eye on his elevated liver levels.  We’re praying for these levels to stay in the normal range.  Liver disease is common in people with cystic fibrosis, and can quickly cause a lot of damage.  If we’re able to catch this right away we can put him on a medicine that will help.  Beck has an awful time with the blood draws…obviously, who likes them…especially when you’re a baby and you don’t know what’s going on.  All of his blood draws at this point have been pretty traumatic because Beck’s veins are small, which makes them hard to find and usually involves a few different pokes to get enough blood.  Unfortunately, his head has been the most successful spot at this point.  He’s such a trooper.  I hope he knows one day that this is really helping him.

I still cannot believe this video.  He seems too little to be able to climb this ladder, and pretty fearless to launch himself over this slide!  He’s definitely been watching and learning all of these characteristics from his brother :).

Asher, Beck and I went on a little adventure to walk around the lake and have a picnic at Fountain Hills.  It was a beautiful brisk day, which totally warranted matching plaid shirts for the boys :).

These birds saw Asher coming a mile away, ha!  They sort of attacked him, and he sort of squealed like a girl and chucked full pieces of bread at them to make them stop advancing.  I totally get it, buddy, birds are shifty.  You can’t trust those things!

Beck, on the other hand, wanted to kiss and hold the ducks.  The ducks were actually smart enough to know anyone their own size did not have food, and they were probably mean, ha!

Asher, my boy, you are all speed.  You own it.

Is this not one of the cutest things about babies!!!  I just love watching him tackle a door frame or small step :).

It was probably one of our last really cool days before Summer hits, so we soaked up every moment we could.