Saturday, April 8, 2017

April 8 2017

On Wednesday we went to clinic since r still wasn't improving from our visit on the 22 and the 28. He still had a cough, sleep issues, and was coughing up lots of yellow mucus. On the 28th he started cefdinir and the first 3 doses he showed signs of an allergic reaction but thankfully that has subsided. I contacted clinic on Monday to see what to do since R was still not his normal self and they made us an appointment in the pulmonary office on Wednesday. At that appointment R weighed 13k (due to him wearing shoes, holding George Pig, and Chase. So I don't believe it was accurate.) The doc. examined him and prescribed steroids,  predisone, to aid in him getting better. She looked over his nasal and chest xrays and briefly discussed that R showed signs of sinus diease and has 3mm thicking. At this time, we aren't overly concerned with the sinus issues but it was a good find so now we can monitor and be aware of the sinus diease.

Since our appointment on Wednesday, his cough has declined and his bloody nasal drainage has also. He still has clear snot and is coughing up mucus but is showing signs of improvement. Being on prednisone increases his appetite and can cause mood changes. So far R hasn't been drastically affected by these side effects but in the past that increased with time. We go back to clinic on Thursday the 13th to reevaluate.

CF is such a difficult diease to know how to treat. If a stranger were to see R they would think he was a totally normal 2 year old but only if they could see the battle raging within... The scars in his lungs, the thickening of his nasal passages, the issues with his pancreas, and the thick mucus covering everything only then would they understand the severity of cystic fibrosis. I'm so thankful that CF is an invisible diease and that R will live a normal life but it does make knowing how sick he is a challenge. Good thing the Lord can see inside and he can heal the damage that man cannot see. I trust in his plan, after all he is the great physician.

Thank you to Union for inviting us to your church to share our story and thank uou for supporting the foundation which will one day cure CF.

We have ordered more bracelets and ordered our shirts!

We will be sharing our testimony at Pine Grove this Sunday starting at 11.

Don't forget the spaghetti dinner on the 23rd at Brittontown Church around 12:00! We will also be sharing our journey there that morning and it is bring a friend day. So load up the car, come expecting God to move, and then enjoy a good meal!

I am so blessed to have my perfect child and for the many doors God is opening for us. I am truly amazed by his love for me.

Saturday, April 1, 2017

April 1 2017

Since we went to the doc on last Wednesday we started cefdinir 3.5ml for 21 days. R really hasn't gotten better nor has he gotten worse. He still has alot of mucus and drainage and we are continuing to do extra treatments. He cultured rhino virus and haemophilus influenzae so it will take a time to eradicate.  If he doesn't show progress by Monday we will recontact clinic and see how to proceed.

We got our blender and have been doing blend feeds for a few days. I feel so relieved to have removed the formula from his diet. We owe a huge thank you to everyone who made the blender possible for us. Thank
you.

The walk is approaching very quickly. We are finalizing t shirt orders and need the money by monday. If you have not registered for the walk please try to do so this weekend. The earlier you register the easier it is for the foundation to prepare for the big day.

Thank you to everyone who came out to New Lebanon and showed their support for our journey. We are so blessed to have each of you on our team.

Thank you for your love, prayers, and support. Everyday with CF is a battle and I am daily in awe of my warrior.

Monday, March 13, 2017

Update Time

The last blog I wrote was on Feb. 22 and this blog will pick right up from there. I love writing on here and rereading all the things I have written, but finding the time to do it can be a challenge. My goal is to write weekly and do two video vlogs a month but it seems like I never meet that goal... But I will continue to try!

R is doing great and right now he is asleep on my chest, this time change is throwing him for a loop. He literally says everything, he talks non stop and his words are usually clear enough for a stranger to understand. Some of my favorite things that he says is: Momma, hold me. I love you Momma,  I love you more, I love you most, Benny, Roanan did it, Roanans turn, When asked whose boy are you, he says Roanans mommas boy, Roanan heavy, and please. He is crazy smart and knows most colors, some letters, some numbers, and various shapes. He loves to learn and enjoys doing crafts and playing on his tablet. Right now he is really into Nemo and Finding Dory, everyday we watch them along with zootopia, he loves the rabbit. R and Bentley are best friends, he loves to love on bentley, read to him, do treatments with him, make him do tricks, and occasionally he beats bentley up I call it brotherly love. R is doing great at all things developmentally. He still isn't a big eater or drinker but since we got the gtube that is totally okay for now. He loves his tubie and is very good at giving himself his meds and feeds. I am so proud of him and the way he adjusts to everything. He is so happy and loves to be outside and be held. His listening skills are not the greatest and he can be very mean but everyone tells me that is because he is two, however, I do not do very well with him being ugly. He doesn't enjoy timeout and always apologizes afterwards and wants to be held. Overall, R is doing great and is your typical two year old with an advanced vocabulary. I am ever so proud to be his mom.

2.19 R first time playing tennis. He got his own racket and loved running all over the tennis court.

2.20 R had a special day and got to go take a class at the Little Gym in knoxville. He loved it and did great! His favorite part was the balls and the bubbles. He did not enjoy the balance beam or dangling from the bars


 2.22 R changed his endovive button out to an AMT Mini One Button. He did great and just cried for a second. It wasn't sore or anything. He was a real trooper and got to pick out stickers and see the puppies afterwards.



2.24 We got our first shipment of relizorb for his gtube feedings.

2.28 R went to the allergist. We explained how he would still rash up over his food allergies and it didn't take much quantity to cause it. We discussed his symptoms, new allergies, and gtube. At this time we are not going to reintroduce his allergy foods and we will go back in like 6 months or so and possibly do another allergy test and see where his blood levels are. Afterwards, we went and saw the puppies and R got his very own coffee. We also stopped at TJ Maxx where we got the call that at R's last clinic visit his culture just came back and he grew stap aeurus for the first time. We started Erythromycin 3x daily for 14 days. (So thankfully they have couches in there because I had an emotional breakdown...)

2.29 R had his first real food blend through the tubie
3.4 R learned how to successfully blow bubbles and loved every second of it.

3.6 R had his two year old check up with his PCP and his weight was up and he was almost in the 50th percentile. He weighed 12.93K They said he looked awesome and for the first time in his life he wasn't anemic! His CBC was perfect.


3.7 We received our Pari Vios neb system!!
3.10 Stopped Erythromycin

Night time meds




R&his best friend



Wednesday, February 22, 2017

R Turned 2, Zoo adventure

R turned 2 on the 12th and we celebrated with friends and family on the 11th at 11 at my parents church activity building. We had a pancake bar and had lots of fun! R got tons of fun gifts and the party was a total success. I cannot believe that he is already 2 years old!







On his actual birthday day we celebrated at an awesome zoo in sevierville. R loved all the animals and had the opportunity to feed zebra, horses, camels, alpacas, emu, pet deer and goats, and hug a kangaroo. It was seriously an awesome day! Words cannot put how much fun we had! I am so thankful that we stumbled across that little gem, we will definitely be returning to say the least!





Tuesday, February 14, 2017

T-Shirt Sales


Adult: SM-XL $15
Adult: 2X $17
Infant/Toddler/Youth: $10

Please email or text me.

rkb.rebellion@gmail.com

We will also be selling silicone bracelets starting the beginning of March.