Valentine's Week

Happy Late Valentine's to all of our family and friends!

As usual, Nathan and I celebrated Valentine's day before the actual day to beat the crowds. Saturday Nathan and I went to the San Antonio Rodeo and saw Keith Urban, which now I am a huge fan of. During the concert, I received a message from my mom of this...

I guess the vest puts everyone to sleep! Bahaha...

Then on actual Valentine's day, Bryce went to daycare for the day. I been debating on letting him go there once or twice a week just so he can have interaction with other children his age. I have some good friends that work there, so I was getting updates on him about every 30 minutes to an hour.

By the looks of it, he had a BLAST!!

Of course, I did get a cute picture of Brianna to share as well.

I hope everyone had a fabulous week too!

Kalydeco

It's been a week of an emotional roller coaster....  For those who don't know already, the FDA approved the Kalydeco which is the first drug to treat the underlying cause of Cystic Fibrosis. January 31, 2012 will be engraved into my brain as much as June 10, 2010(date of diagnosis).

This amazing drug will give Bryce the best chance at a "normal" life next to an actual cure. Bryce will continue to do his daily treatment regiment for the time being . There is a great chance that he may do less treatments a day and maybe cut back on some medicines. I pray for a day that he will just have to take the blue pill just twice a day, but realistically I know he will probably always have some kind of breathing treatment and vest time.

I am not complaining though! Since this drug treats the actual underlying cause of Cystic Fibrosis, his body shouldn't suffer any more damage from this awful disease.

The one draw back that this drug does have is it is only for about 4% of the Cystic Fibrosis community. That's only 1,200 that will be able to benefit from this drug. Luckily, Bryce falls into this 4% population. This drug only helps with the individuals that have the G551D gene. Bryce has this gene mutation as well as the DF508.

The drug is approved for individuals for the ages 6 yrs of age and older. Bryce obviously does not qualify for this yet, but he will be a clinical trial for the ages of 2-5yrs at his clinic here in San Antonio. We are so excited for this. We will find out more information at our clinic on Feb. 23...

You would think with this exciting news, I would be beyond happy and not worried about anything. But that is not the case. The price tag on this drug is $249,000. Yep, that's right! I guess Nathan and I will be needing to find second jobs.... Hopefully, by the time it is actually prescribed to Bryce, everything will be worked out with insurance and we can pay our normal copay for it.

It's a small world...

I have been following Run Sick Boy Run since I found it after I googled Cystic Fibrosis the days following Bryce's diagnosis. I love the raw honesty that he and Mandi bring to the table. I also have been extremely interested in the journey they took to bring Mckenna into the world.

For most of you who don't know, Cystic Fibrosis doesn't only affect the lungs but many other organs. It affects the pancreas, liver, gallbladder, intestines, and reproductive organs.

Since learning all of this, it has brought a lot of sleepless nights. Thinking... What age do I tell him that there is a good chance that he cannot have children the "traditional" way? Do I tell him when he is out of high school so he doesn't become the Lady's Man or do I wait until he is serious about a girl? Should it be earlier than high school when I tell? Do I tell him or do I let him find out himself? Should I be the one who tells him or should Nathan tell? Will he find that one person that is ok with this? Crazy right !?! We are many years away from this, but this bothers me almost as much as the life expectancy.

Well not long after I started following Mandi and Ronnie, they announced that they were going try to have a child by IVF. I found this to be so interesting because even though Bryce may not be able to have a child the "traditional" way, there is chance for him to still have a biological child if he goes this route.

So let's skip forward to the birth of Mckenna. I believe it was the day after she arrived, I was looking at all the pictures that Ronnie had posted on his facebook page. While I was doing this, my mom walked through the door on the phone with work, as usual. If you are ever around my mom, 9 out of 10 times she will be on the phone, at least once, with work.

When she was finished with the conversation, she asked what was I doing, So I started showing her the pictures and telling her about the journey that it took to get McKenna into the world. Well as the conversation went on and my mom took over the iPad, she some how came across to Ronnie's name.

She said, "Where is he from?"

 I said, "I don't know, somewhere in Arizona."

She said "Oh, I now a Ron Sharpe. That's who I was talking to when I walked in."

I looked at her and said "Really? When I joined cysticlife Ronnie mentioned that his dad lives in San Antonio. I don't know his name though."

So as soon as my mom said that, I messaged Ronnie asking if his dad was associated with the VA Hospital here in San Antonio. Guess what !?! It is Ronnie's dad. How crazy is that!! My mom speaks with him often.

I am just amazed how small this world is!

Hello, Anyone There???

Hi!! We are still here but been crazy busy as everyone else has been. I am thinking I am going to try to catch everyone up on the kids in this one post. Nope, I am not going to write a novel but do it by pictures and a few short stories...

Here we go...

 August

This is how Bryce thinks he needs to do treatments now. 

September

From April 13, 2011 to Sept. 18, 2011 Bryce was hooked up to a machine that was literally beating the crap out of him. :(

We went to the Jungle Book play. The kids were supposed to dress up in the jungle theme but Bryce refused to wear his costume. Brianna was a cave women.

Brianna made me a Rocket (Little Einsteins) cake out of play dough for an early birthday present. She said it's my favorite show.

October

 90 degrees in October equals a day in the sprinklers!!

 This is the first word Brianna wrote on her own at home.  

 I gave Granny B a bottle of wine for her birthday. She says she has never drank before but if I was the mother of 5 kids, I would definitely be hitting the bottle.

 This is a picture that her and my aunt Joyce sent me!!! Crazy people. Aunt Joyce went and bought apple juice that matched the wine color. All I can say is that they have way to much time on there hands. Oh Granny, if you see this, Aunt Joyce posted the picture not me. Bahaha she would be so mad if she knew this was on Facebook and my blog. I don't even know if she knows what a blog is. :)

November

 Birthday ice cream at Texas Roadhouse...

 Brianna and her ribs!!! She loves them.

 Brianna's birthday party at Morgan's Wonderland... 

Happy Thanksgiving...

Brianna and Aunt Joyce getting ready for Thanksgiving Lunch.

Brianna and Bryce were the designated clean up crew.

 Brianna and her home made fishing pole because she broke her pink one.

December

 Bentley waiting for Santa to come and bring him something.

 This is Lola Darling, you must say Darling with a southern accent. If you don't, Brianna will inform you that her name is Darrrling. She is my mom's dog that Santa brought to her. She had to stay with us for a couple of days while my parents were out of town.

 Lola on her first jeep ride on the jeep that Santa brought.

 Bryce would not leave the tree alone!

 Santa came!

3 out of 4

So in the Tomerlin household this week, 3 out of the 4 of us are sick... Both kids and I are sick! I don't know where it originated but it's awful!

Last Thursday, I went to a walk in clinic because I just felt crummy and had a cough and sore throat. I left there with the diagnosis of upper respiratory infection, strep throat, and DOUBLE ear infection. Great!!! So that night, I locked myself up in my room and Nathan did all of the kids stuff. Then Friday, my mom took both kids for the night so I could sleep in on Saturday. Nathan started a new job so he works every other weekend and this happened to be one that he worked.

I sure did take advantage of that. On Friday, I slept from 8:00pm to 11:00am! It felt amazing but I was worthless that whole day. 

Since I was diagnosis with an upper respiratory infection, I decided that while Bryce was awake during the day, he would be getting treatments every 4 hours. You just never KNOW with CF... I felt bad for him, but I knew it would be for the best.

Saturday
We really didn't do anything because I was still not feeling that good.

Sunday
Bryce woke up with nasty eyes. Still his normal goofy self but his eye kept getting worse and worse through out the day.

Monday
Bryce seemed to be the same, junkie eye but still himself.

Tuesday
Both eyes were nasty, he was cranky, didn't really want to do anything but lay on me. So I knew there was something going on.

Wednesday
Clinic, Bryce had a horrible double ear infection and strep throat. Lungs sounded great! He had no wheezing or coughing. Sinuses didn't look too hot so they went ahead and gave him a steroid for his sinuses and antibiotics for his ear infection and strep throat.

Thursday
Brianna wakes herself up from coughing and she can't catch her breathe. Now it's in the middle of the night and I am giving her a breathing treatment.

Friday (Today)
I go back to the doctor because my cough is a 1,000 times worse and I feel as though I am about to cough up my lungs.  I received 2 shots, a stronger antibiotic and a cough syrup with codeine in it.

Hopefully, all of this will work and we will be back to the Healthy Tomerlin Family.

Here are some pictures of Bryce at clinic and some of him at work with me waiting on Nana to pick him up.

 Waiting to be called back to clinic....

 He kept running down the halls at work to see what my assistant was doing.

 For some reason he kept touching the walls in my office. I don't know if it's because they were textured or what but he would run beside them and crack up laughing.

 Playing on scale that we use for the biggest loser competition.

Finally, staying in once place so i could actually get some work done!

Labs... Worse on him or me???

    Thursday July 28, Bryce had to get 2 different labs. The doctors need to know how Bryce is aspirating into his lungs.
    Our first lab of the day was x-rays of his upper GI to see if he was refluxing and to verify that his nissen wrap was still intact. It appears that he is not refluxing within 5 minutes of eating/drinking but his wrap looks a little loose. It is still intact but the doc said it doesn't seem as tight as it should be.     
    This was the worse one of the day! They strapped him down. One strap goes across his head, another one around his chest, and the last one around his legs. He screamed and yelled for the first few minutes.
    It's awful seeing your child this way and knowing that he is scared. I just wanted to unstrap him and hold him.

 Drinking the barium so that they are able to see if he is refluxing. He chugged it because he was so hungry from not receiving his night feeds or breakfast that morning.

 He finally went to sleep after getting something in his stomach.

He fought so hard, his toes came out of his shoes.....

   This is after the upper GI test. He is playing with his dietitian Brittany while we wait for his swallow study test. Brittany went with us because she can't believe that Bryce is swallowing his enzymes at this young of an age. He began swallowing them at 13 months. His enzymes are about the size of tylenol capsules.
 Most kids don't start trying to swallow pills until they are 3.

 A swallow study is when they take x-rays while he is chewing and swallowing his food. Bryce swallows his food good but doesn't chew his food enough. We will now be seeing a speech pathologist to help him learn how to chew his food correctly.

We did impress Brittany, the speech pathologist and the radiologist with his pill swallowing skills that they went and found a couple other doctors to show them.

In other words, Bryce is a rock star in swalloing pills.

OOOO, nice machine!

Not to excited about everything being coated in barium and having the chalky taste.

Finally over and he gets the rest of his string cheese without barium.

The small things in life! ;)

Wordless Wed.... Somewhat!!!

This is Bryce at his clinic appointment back on July 5th.... He thinks he is Mr. Cool Guy!!! 

This might be one of my favorite pictures of him.