Breathing with the Tomerlins: 2010

Thursday, December 30, 2010

Follow Up Visit

This morning we had our follow up visit from last week were we lost half a pound and the first clinic after hearing the dreaded words of "he cultured psuedonomas..."
Overall, I would say might be our best visit so far in weight gain. We gained 1.2lbs in a week!!!! That is the most that he has ever gained in a week. The respiratory therapist said that if he keeps this up, we will be able to be fitted with a vest within the next 3 months!!! I am beyond excited.
Our Tobi arrived today while we were at clinic, so we will begin that tonight. Lisa, our NP, stated that is takes about an additional 30minutes or so just to do that one treatment. Seriously??? We did change his treatments from every four to only twice a day since we now know the cause of all of his wheezing and coughing. I would say 99% of it is gone. So I definitely won't argue with that change!
Our dietitian recommended that we start adding whole milk yogurt to his diet. Does anyone one have any recommendation with what brand has the highest calories???

Tuesday, December 28, 2010

Call from Clinic

Clinic called today and informed me that Bryce cultured pseudomonas. We will be changing from augmentin to cipro and adding tobi to our breathing treatments.

I don't know how I feel about this... I don't know how bad this is that he is culturing pseudomonas. The nurse said they would talk to me more about it in clinic on Thursday and that they just want to get him started on the new antibioitics as soon as possible.

I would love for someone to share there experience with pseudomonas and the treatments.

Wednesday, December 22, 2010

Yesterday, Not so fun Clinic Day

Here are some pictures from clinic yesterday.

I hate the anxiety that I start getting the night before we go to clinic. I am finding myself not able to sleep. I clock watch all night, counting down the hours until we go.
Yesterday visit was nothing like I thought it was going to be. I anticipated leaving there with an antibiotic because he was showing early signs of something growing in his lungs. You know, that wet cough with mucus coming up. The mucus at first was clear then the next day it was cloudy, then the following day it was yellow/greensih...
I had a feeling that he didn't gain much weight but it seemed that he was longer. Well I was totally wrong!!! He didn't gain any weight, he actually lost half a pound. He didn't grow in length either.
Now we are on a very strict regiment for meals. We are also increasing his night feed volume.
I have one week to get his weight up!
Back to the mucus, the clinic says he is one of the kids with the most mucus that they have seen. They give that credit to his severe allergies. Since he has so much mucus going on right now, we now have a perscription for pulmozyme twice a day. I hope this helps.
I would like give credit for his horrible allergies to the great Texas weather that can't make up it's mind if it is going to be hot, cold, wet or dry!!! Yesterday, it was 80 degrees!!! First day of winter and it was 80 degrees. Today is suppose to be in the high 70s. If the temperature stays this way, I should have a Christmas pool party!
On a fun note... Here are some pictures of the Bryce and one of Brianna.
This is Bryce's newest game to play.

He seriously gets so mad when you pull him back up. He LOVES being upside down.

I am pretty sure this is my favorite picture of the 2 of them together. I ran to the kitchen for something and when I came back they were like this.

Friday, December 3, 2010

Is it 4:30pm yet???

Shhhh.. Don't tell anyone but I am blogging at work today. It has been one of those crazy weeks. Finally, the rush is over.

For you who don't know, I am the Asst. Director of Human Resources for Flowers Baking Company. Those who are familiar with San Antonio, y'all know it as ButterKrust. Our corporate office is in Thomasville, GA. We are one of the fastest up and coming companies in the baking industry and etc....
It's our first open-enrollment for benefits since Obama has made all the changes in the Health Care Reform. The HCR really has not effected us but with trying to train my new assistant with her responsibilities and helping all the employees with benefit questions, my week has been NUTS!!! **Note I have 257 employees**

Ok so back with my original idea for this blog. I have a digital photo frame in my office that I catch myself staring at a lot of the time, so I thought it would be great to share some of the pictures with everyone!!!

My mom with Bryce. He is about a week old.

Bentley our Pug/Chihuahua mix. Our first baby!!

Gangster Brianna Paige...

Bri's first Halloween and me with dark hair. My dad hated it because I am natural blonde. LOL You always want what you don't have.

I think this is my all time favorite picture. This at my parents house. Not staged I promise, it is totally just a random pic. My mom holding Bryce Porter Tomerlin for the first time.

Bryce at Fourth of July.Bryce being goofy Bryce.
The dramatic Brianna blow drying her hair.

Bryce and I playing...

Bryce Porter Our First Hospital Stay
Budha Bri... I can't help but to smile on this one.
My wedding, yes Brianna was our Flower girl. Nathan and I were together for five years had Brianna and waited another year to get married.
My best friends wedding! Isn't she gorgeous??
On the plan to Las Vegas for our wedding!
Papa and her picking lemons from HER lemon tree.
Brianna and Bryce at the hospital.
Papa and Brianna fishing at our pond.
Bri and Papa
Bri and daddy playing poker.
Bri trying to clean the pool because obviously we don't know what we are doing.
Brianna at my best friend's wedding rehearsal.

Thursday, December 2, 2010

Sorry!!!

I haven't posted anything since November. I don't know if it is a good thing or a bad thing.

One reason I haven't blogged is because it seems that I don't have the time to do it. Trust me I am not COMPLAINING at all. With 2 healthy kids, I get to have fun mommy time with both of them.

Bryce has been out of the hospital going on his 3rd month. (knock on wood) Clinic has changed a lot of his medicines around and what a difference!
Our new medicine schedule:
Acid Reflux - Zantace 2x day and Prevacid 1x day

Allergies - Singular 1x day at night and Allegra 2x day

Breathing Treatments - Xopenex 2x day (we may use every four hours if needed) Pulmozyme 1x day at night with CPT for 10 mins per side Flovent through a spacer 2x day

Enzymes - Zenpep 3capsules per meals during the day. 2x at the start of the
night feed. 1capsule in the middle of the night feed and at the end.

Vitamins - Vitamax 1x day

Allegra has made the biggest difference in the world.

Now all the fun stuff that has been going on. Brianna turned 3 on November 10th. She had a great day and party. At her party, she had a moon bounce and a hay ride. All of her friends came. She actually played with everyone. I don't mean that Bri is antisocial, it's just that when her and Zoey (her bff) are together, no one else exist.

We went to a pumpkin patch. Bri had a blast. She had Blue from Blue's Clue painted on her face. She painted a pumpkin, we went through a maze. Nana and Papa bought her a pumpkin to carve. Well for Bryce, he just slept the whole time.

Bryce celebrated his half birthday on November 19th. I can't believe he is already six months. In a way, it has been a long six months. Learning about CF and learning how to manage two kids. I feel as though now I got the hang of it. I can promise you that I have learned more the past 6 six months than I have my whole 26 yrs of life.

I will post some pictures this weekend from the month of November.

Take Care Everyone!!!

Saturday, November 6, 2010

I know I know...

I know I haven't updated in awhile. My life is finally slowing down so I am going to do a blog tomorrow that will update everyone on how everything is going and what we have been up to with Brianna and Bryce....

Wednesday, October 27, 2010

Long Time No Blog

I have been super busy. Not complaining because it has been nothing but fun stuff. Not my usual busy, trying to work and be at the hospital.
Since the last blog, we have been to 2 birthday parties and a pumpkin patch. As well as planning a birthday party for Brianna. I can't believe she is going to be 3. She is growing up so fast.
Bryce is doing just grand!!! I actually rescheduled his appointment for this week to next week. The doctor called me to ask me a few things and stated that they all were so surprised that I did that. I never reschedule and I usually talk to someone from the clinic everyday. (I am that mom that ask a million and one questions and always questions the docs why are they going that route and not this one.)They just laugh and answer the questions. They tell me that I do the most research than any other parent. But I am telling you, he is a totally different baby since we left the hospital last.
Well here a some pictures from the last 2 weeks.

Bet you can't guess who is Brianna's best friend???

Wednesday, October 20, 2010

Go Super Fast but not Super Duper Fast....

It's amazing what a 2yr old says, well almost 3 next month.
I think it might of been Monday morning. We were driving to daycare Bri says "Mom drive super fast but not super duper fast because the copers (cops) will get you." Where does she get this from??? I have no clue. I wish at times I could have a video camera recording her 24/7. She says the funniest things.
This morning, she walks into the kitchen and says "Mom my cups are everywhere! I have one in the living room, one in your bathroom, one in your room, one in my bedroom and 7 in my drawer." I said "Well, how do you know where you have all of your cups at." She replied, " While I was waiting on you, I went around the house and counted." Yes, she did say, "while I was waiting on you." I said, "Bri, then why didn't you pick them up and put them in the sink." She said, "I was to busy counting."

Monday, October 18, 2010

So far so good....

After coming home this last hospital stay, things seem to be going great. Thank God!!! There seems to be some kind of relief or something. It is like I have finally got the hang of this. I don't know if I am become more familiar with Bryce as a baby and more comfortable with CF. So lets just pray that Bryce stays in this good of health.

The funniest thing just happened. Brianna is giving Nathan and I trouble about going to bed. She is always in bed by 8pm and usually asleep by 8:30pm. As I was typing, I heard little pitter patter coming down the stairs. I yelled, "Brianna Paige, I know that is not you coming down the stairs." Then all you heard was her march back upstairs pretending it wasn't her. She is a nut. She says the funniest things and knows it.

Bryce has made a total 180 since getting the g-tube. He seems to be catching up on all his motor skills. We are giving him a lot of tummy, I don't think he likes it but I see his improvement.

Monday, October 11, 2010

President Obama Signs Clinical Trials Act Into Law – CF Foundation

Saturday, October 9, 2010

Second Home

We are back in our second home... Bryce has pneumonia. He is doing great, we have only been here for a little over 24 hrs and he is already getting his CPTs reduce from every 3 hours to every 4 hours. He seems to feel better and looks better.

They think we should be out around the end of next week. Keep your fingers crossed!

Wednesday, October 6, 2010

Our First Great Strides

I must admit that our first year of doing Great Strides was a success.... We won 1st in the most participants for one team, 2nd for raising the most money, and one of my participants won the 5k! I can promise you that it was not me.

I hope to double the participation and fundraising next year. So in other words, if you were not able to participate this year, mark your calender for the first weekend in October for 2011 event. If you were able to donate, then find one other person to donate with you next year.

Here are some pictures.

We are missing people in our team picture.