Randomness

I have some random pictures of Ben that I thought I’d share. We had a great weekend, getting things together for our new house. We bought ceiling fans and are figuring out our moving schedule. By the end of the month, we’ll be in our new house!!

Yesterday evening, Ben decided to move his chair on top of the couch. He was watching Toy Story during his treatments and was so into it, that I let him finish.

Our little Prince on his chair :)

 

This morning, Ben watched me feed his fish Carl. After I was done he wanted to get up on the counter. He proceeded to “feed” Carl in his own way.

As you can see, he put the whole container of fish food into the water before I could stop him! At least his intentions were good.

  

He kept looking  at himself in the mirror and making faces or sticking out his tongue. We have a little ham on our hands!!

We are trying to get out and enjoy our beautiful weather (mid 80’s) but have so much to get done around the house. I’m really trying to go through things and get organized before we are ready to pack. It’s time to start taking things off the wall!

10-10-10

There is really nothing significant about the date, I just didn’t have a blog title so I thought I’d use it :)

Yesterday, Ryan and I attempted church for the first time. Just the three of us. We’ve been wanting to go for awhile but I am NOT comfortable leaving Ben in the nursery. We decided that we need to start working towards going to church in the future so I stayed with Ben in the nursery while Ryan went to service.

The evening service works best for us because we move slow in the mornings. It made for a fun family night as we picked up pizza afterward. Ben loved running and playing around the nursery school room. However, when one of the little girls let out a gnarly wet cough, I realized I do need to stay with Ben at least through flu-season or until I feel comfortable. I may not make it into service but it’s a step in the right direction.

When we got home, Ryan put Ben into the bath. I asked him to trim Ben’s hair around his ears when he got a chance. Little did I know that my husband would just dive into the task when Ben was in the bath. One of his most active times. This is what you get.

Chunks missing from the side of my son’s hair.

I may have to take Ben into the barber today, ha!

At least it was a fun opportunity for a photo shoot. Ben was running around in just a diaper, hyped up after his bath.

My little poser.

Growing up

Other CF mom’s said things (CF-wise) would get easier as Ben gets older and I can see that.

Ben can now take his vitamins (CF source) straight from the dropper versus me putting them in his milk. I no longer have to convince him to drink every last drop from his sippy cup to ensure he gets them all in.

He is starting to take his enzymes whole in a Starbucks straw. Starbucks straws are nice and big (McDonald’s is another great one!) and I can pop one it and he’ll suck it right up. However, it’s hard to get him to take 6 full strength sips of his drink. Yesterday he successfully took two enzymes at once but I am treading carefully. I don’t want to push him so we taking things slow.

He takes his Xopenex from his spacer like a pro. He hated it at first but now takes it easily. He takes a deep breathe when he senses the medicine. He even tries to push the inhaler down himself. However, he hasn’t quite mastered it!

We have never had a problem with Ben doing his vest. He even went up a vest size and received a brand spanking new jacket. Of course, we try to make it as fun as possible for him. We are always looking out for DVD’s or games we’d think he’d like. We want to make his treatment time as easy as possible. Sidenote: RespirTech now makes plugs to go into the tubes on the vest so it’s washable. If you have the RespirTech vest, call and request that they send you some!

The only thing he’s been having trouble with is his nebs. I’m not sure if it’s just doing a neb in general or inhaling the Hypertonic Saline. I’ve tried it myself and it makes your throat and nose itch. It tastes awful and I don’t blame him for hating it. Lately, I’ve had to sit next to him and hold the neb over his face. He often fights it with his whole body but we’ve tried to use positive reinforcement with him. I’ll sit with him and whisper in his ear how much I love him, how he’s my hero for all he goes through, how proud I am of him and how well he’s doing. Ryan and I make a huge deal when he’s done, giving him high fives and hugs. I’m going to try and give the HTS another couple weeks and if we’re still having problems, will talk to our clinic about the possibility of switching inhaled meds. 

Before we know it, Ben will be putting his vest on by himself!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have not started packing but am going through Ben’s clothes and toys, packing up his old clothes and putting away the baby toys. Ben is so lucky to be surrounded by so many people that love, adore and spoil him. The five, filled-to-the-brim, plastic storage bins prove it!

Wordless Wednesday

Ben’s first PFT

This has been one of the longest days ever! But the results were worth it.

Last night, we drove down to the Bay Area to stay with Ryan’s aunt and uncle. The drive to SF is long and I knew a sleep-deprived, food-deprived Ben would not be pleasant.

Amazingly enough, he wasn’t! We got up at 5 am and were in the car by 6. Ben was pretty easy in the car and we made it to UCSF with time to spare.

It was weird to be  back to the hospital were we spent two weeks. The same hall. The same smell. The same cozy coupes for Ben to play with.

We waited patiently (and at times impatiently!) for the team to be ready.  When they finally called us in, we were taken to a small room where Ben was weighed and the machine calibrated. We discussed all that was going to happen especially with Ben’s sedation.

He was first given some antihistamine to help make him sleepy, which he sucked down easily. Then came the dreaded chloral hydrate. I’ve heard that all other kids have hated it and it can be a messy fight to get down. NOT Ben!! He sucked down the entire dropper in 10 seconds. Dr. N said he had never seen a child take the CH so well. Way to go Ben!!

Then came the waiting…. It took about 20 mins for Ben to go fully under. Luckily, since he was fussy, hungry and wanted to get the heck out of there, they put Thomas on the computer. I could tell the medicine was working because he got heavier and heavier in my arms.

I then lifted him into the machine, making sure his neck was propped up to open his airways.

The blue velcro thingy (these are technical terms people) was the jacket that would squeeze him. The mask above him came down over his face.

Silly putty type stuff (once again, technical term :) ) was put around his face to ensure an airtight fit on the mask.

A test run was performed and then we started. We started with closing the chamber to perform part of the test. This only took a few minutes.

(If you hadn’t noticed, Ben is almost too big for the chamber. Looks like we’ll have to wait til he’s 3 1/2 or 4, when he can do them unsedated, to do his PFT’s again. We don’t think he’ll be able to fit into the chamber next year. Once again, I’m really glad we finally got this scheduled.)

Air was forced into his lungs, seeing how much he could hold. The test was run a couple times to ensure accurate numbers. Then the jacket was put on him to force air out of his lungs.

Our Respiratory therapist was right next to him, ready to rip everything off his face if he woke up. Dr. N stood next to the chamber, at the computer, informing me with what was going on.

The whole thing was pretty easy and pretty quick.

Now time for the results.

Ben’s FEV 0.5  was 126% (forced expiratory volume)

FEV 1 111%

Total lung volume is 113%  

All of these numbers are ABOVE AVERAGE!! That means our little CFer is doing great! We are so excited to have such great results. Our team was just as excited as we are. We’ll just continue to do treatments like we are and pray that Ben continues to do well.

I have a lot more to update on but I’m EXHAUSTED  and I have a crazy “drunk like” little man on my hands.

Thank you to all who kept us in your prayers and thank you to my mom who tackled this adventure with me!

Clarification

It needs to be said. People get excited when I say I have new, exciting things coming up. I stopped using “a surprise” because it got people worked up.

I am not pregnant.

Ryan and I are in escrow on a house. We'll start our move the 20th.

I’m sorry to disappoint people :)

PFT’s tomorrow at 8 am. I’ll update ASAP.

This ‘n’ that

To be honest we haven’t been doing too much lately. Last weekend we spent time with Ryan’s family at their cabin in beautiful Lake Tahoe. We have some new and exciting things coming up but nothing I’m ready to share yet.

So, I thought I’d give you a bit of an update on the Little Man…

~ He points and gets excited at just about every car or truck we pass. He runs around, pointing out the wheels.

~ He now says, “mama”, “dada”, “what’s that?”, “fan”, “that”, “hi”, “tractor” (Ryan swears he heard him say this!)

~ He loves to look through the newspaper until he finds the car ads. He does a little dance then starts pointing at each one saying, “what’s that?” it’s followed by… “Ultima. Nissan. Jeep Wrangler….” you get the picture :)

~ He uses a fork to eat but we can barely get him to sit down. We usually get most of his dinner in his mouth by a “drive by eating”. Do other parent’s experience this?

~ Any time music comes on, he starts dancing. It usually involves, teetering back and forth.

~ He gets upset and runs to the nearest person when Thomas the train crashes. He has such a tender little heart.

~ He weights 30 lbs and is 38 inches.

~ He loves to play chase with his friends especially during Gymboree. He gets so excited when they come near him that he puts his hands over his eyes, trying to hide.

~ Sometimes he laughs when he farts. Such a boy!!

~ We could sit and watch a construction site for hours.

~ When he gets really excited he sticks his tongue out and does a little dance.

~ He knows what sound most animals make.

~ He knows where his nose, ears and mouth are. He can also point out yours!

~ When one of us leaves, he runs around the house looking for us saying, “mama?” or “dada?”.

~ He can sniff out a Thomas product anywhere!

~ Every once in awhile he’ll grab the remote and point it at the television trying to turn it on.

~ He’s extremely good at dumping his puzzles out and getting better at putting them together!

~ He LOVES to wrestle on our bed with his dad. There are no wimps here!!

My personal fav….

~ He’ll pick out a book and run over to me, pointing to everything asking, “what’s that?”

~ He loves to eat fresh, whole fruit.

Both of Ben’s grandpa’s work in produce. I’m sure they love this about him!