Tuesday, December 6, 2016

Hello, It's Me..


"Hello, It's me, I was wondering if after all this time you'd like to read"

Let us do a brief recap followed by some important dates.

9.11 Shortness of breath
9.18 still runny nose
9.18 Bentley vet for urinary issues
9.19 Roanan Sleep appointment 11.4K 82cm
9.26 R coughy-funny smelling breath
9.27 R remains coughy
9.27 Started potty training
9.28 first time peeing in potty
9.28 R moody feeling not 100%
10.4 R loves saying poop and no
10.10 R loves being called and saying "Silly Goose"
10.11 Took R to pumpkin patch
10.14 Took R to Park
10.14 Learned to say Chase from paw patrol and can identify him on anything
10.15 high fever for 24 hours. No sleep
10.18 coughy did extra treatments. Went and explored pigeon forge
10.20 still doing extra treatments. coughy/snotty
10.24 tried grapes, enjoys them
10.26 still snotty, doing extra treatments. Threw up food, milk, and tons of mucus
10.28 loves singing Peppa Pig Bing Bong Song
11.10 First Aquarium Trip
11.13 First trip to the Knoxville zoo
11.14 Loves Blackberries and yells berries
11.16 First Ikea trip, mind blown!
11.20 When you punish R he looks at you points and yells no
11.22-12.6 Sleep issues falling asleep and awakening throughout the night
11.24 Thanksgiving, pink cheeks appeared
11.26 Runny nose
11.20 still sleep issues, still runny nose, learned to say Why
12.1 still runny nose, coughy, rattling chest, productive coughing during vest
12.3 still remain, still doing extra treatments, productive coughing again
12.5-6 runny nose and sleep issue remain. slight coughing?

Where to begin?

  • We had the sleep study and it was a little rough. So many wires, tubes, and tape. R was a true champ and I was so proud of him. He kept saying "Momma, all done, all done, pllleeassee" That was the hardest part. The staff there is amazing and worked very well with R and made it as simple as possible. Even with all the love and patience it still took a solid two weeks to recover from the experience.
  • The results of the study were fantastic. R did wonderful! He had the best results of any CF patient the clinic had ever had. The only minor concern was his O2 dropped below 87 a few times. We have concluded that his sleep issues are a result of stress/anxiety.

  • We took R to the aquarium and zoo before we entered hibernation. He enjoyed them both so much! He admired each fish and was amazed by the sharks. The scuba man in the water carried over to him a huge string ray and R got a one on one experience with the big man! Once they swam away R kept sticking his hand out saying, "again, again." His favorite part of the aquarium was probably the penguins. He loved to watch them and would laugh as they swam around him. Many of them came right up to the glass for him to get a good see. The zoo was wonderful also! The weather was great, it wasn't overly crowded, and the animals were in great moods. He loved all the animals and really took it all in. He loved the tiger and kept saying, "kitty kitty" and clicking it to come over and motioning it with his hand. It was so funny to watch him interact with the big kitty who was literally standing within 2 feet of us. R loved the alligators too. He kept saying they were dinosaurs and rawrrr at them. I was cracking up. He did not want to leave their little window. He was a champ the entire day! Oh I almost forgot his favorite part!!! THE BIRDS! He loved going in with birds and he hand fed them! The landed on a stick that he was holding and he loved it, I on the other hand was having an anxiety attack. (Birds are not my forte) What else?! He enjoyed brushing the goats and the sheep. He loved going and seeing all the animals. He is truly an animal lover.
  • On our two fun days you could tell that R really enjoyed the adventure but at the same time he was so out of his element. His smile wasn't as large as normal, his laughs weren't as frequents, and he really wasn't himself. He felt very uncomfortable around all the people and would have preferred to have been there alone. R spent most of the days rubbing his nose, his nervous habit, and leaning in close for hugs. The following days he was in recovery mode from the overwhelming experiences. His sleep wasn't well, lack of appetite, and he just wanted to be help. It's mindblowing to see how his little mind and body handles stress. God made us each so unique and gave us all different ways to heal and understand life. Thank you Lord for giving R the ability to overcome stressful situations. 

  • R enjoyed thanksgiving although he wasn't feeling 100%. I could tell by Thanksgiving that something was coming and unfortunately I was right. Since the Tuesday before Thanksgiving I could tell R was acting different, well his normal pre sick self really. His sleep was altered, he needed more cuddles, he didn't want to eat anything other than fruit, and his breath had a funny smell. Now on Dec. 6 he has still is under the weather and we have clinic tomorrow to see whats going on. His chest has been alittle rattly, open mouth breathing, coughy, and gallons of snot. 

  • R is doing so wonderful with potty training. He does really well at home and doesn't wear diapers all day. He will tell you when he has to pee and loves to flush it away. He has also pooped on the potty once and he was oh so proud. We did a happy dance, took photos, and then flushed it away, "bye, bye". I am so proud of him and his interest and success in potty training.

  • R literally talks all day. He sings and dances. He says so many words and knows so many things. He knows most of his body parts and can point them out on you or himself. R loves to receive love. He will pull you in for hugs and kisses. He loves to sit on the couch and cuddle under his blanky. He loves paw patrol, bubble guppies, and peppa pig. He loves riding his horsie, his car, shooting ball, playing with Bentley, and coloring. His favorite food is blackberries, french fries, and "dippy" (any kind of dipping sauce. Oh and COOKIES! He still loves dinosaurs and reading books. He will now read books alone in his chair. He is a brilliant mind I tell you!

  • R is doing great! Every day I am so amazed by him. I truly have the best child in the world he is my best friend and my little boy all in one. He is losing his baby face and actions daily - pretty soon I will officially have a toddler. Mind Blown. Time has flown and it seems like just yesterday his little cone head entered the world. But here we are almost two years later and happier than ever. 
I cannot thank the Lord enough for my child. Our bond is greater than most parents gets the opportunity to experience. I wish my child didn't have to battle CF but by him having CF our relationship is impeccable.

Thank you Lord for always giving us what we need....

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