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

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