Our Week

Sweet B has been junky since Wednesday evening. He ran a fever Wednesday night into Thursday but has been fever free since. I think he is finally on the mend. I felt so bad, he missed story book day at school. He has a jake and the neverland pirates book he just loves and a costume to match. We have just stayed in the past few days letting him recover. I ordered him some washable face masks to wear to the grocery store since that typically where all the germs seem to be. I attached a few pictures from our week. Snuggles with mommy, his Halloween costume arrived and we went to the book fair on Monday. He enjoys his books! Thank you all for the love and prayers.

 


He’s growing up so fast!

Braden has had a great past few days. He is LOVING school and has recently started riding the bus in the mornings. He thinks its the coolest thing ever. I don’t mind much either since it gets me out of sitting in car rider line in the morning. The line is seriously CRAZY. Braden’s cardiologist appointment is coming up at Pediatric Cardiology Services. I always get so nervous before these appointments. Many have asked why Braden is not yet listed for transplant if he is so bad. While his condition is critical and he is considered end-stage, he remains stable. As long as he is stable, they do not want to list him. With a transplant, it does not bring a magic cure. He will be on meds life long that can damage his kidneys. Transplants only last on average 10-15 years so the longer they can wait, the better it is for Braden. If y’all have seen him, he is nothing like what his chart says he should be.

Braden started Physical Therapy last week and loves it. While he doesn’t need standard Physical Therapy every week, he does need muscle therapy. He doesn’t enjoy his massages, but its definitely helping his extremely tight muscles. His new therapist Peggy at Milestone Pediatric Therapy Services Inc is great!


5k for CHD Awareness

Yesterday, In Matt’s hometown they had a 5k to raise money and bring awareness to congenital heart defects. I am so proud of my family and friends for running/walking/supporting him by being there in his name since we could not attend. Braden was one of many children/adults honored. We are blessed!

Fun Day

B had a fun day! We went out to the football field for the Jamboree to raise money for our JHS cheerleaders. He bounced, slid, hand painting and for some Swirlee’s Frozen Yogurt. He still won’t let anyone paint his face. He is hypersensitive when it comes to anything near his face and mouth. He had his favorite pizza from Little Caesars too!

 


Our Day

Our day today!! Braden with 2 of his favorites! Mrs. Amber and Mr. Heath! Love them!! They are so sweet to Braden! He isn’t just another fair goer, atleast it doesn’t seem like it his gastric issues continue but he is hydrated via his Tubie and eating like a champ. Today was a better day so hopefully tomorrow is even better. We are going to the zoo tomorrow with a few of my best friends and their kiddos. I am in a mommy group of 10 women from across the US and one in Canada! 4 of us are meeting up for a day of fun Braden is so excited!

 


Update

I forgot to update. B is still coughing quite a bit but his fever seems to be gone now. He has a pretty nasty ear infection that is draining causing all the coughing. With some antibiotics , he should start feeling better soon  thank you for the love and prayers. So glad it wasn’t anything serious! I watched him So close last night.


Braden starts PT

Tomorrow is Miracle Treat Day at our local DQ Jefferson Dairy Queen / Orange Julius. We will be there 12:00-1:30 with Tripp Halstead Updates and back in the evening to co-judge the blizzard eating contest. Stop by and say hello and support CMN! Here is our family photo from last year at the event!! B is doing ok. Still has a terrible cough from drainage but he does seem to be improving. School is going great and he met his new physical therapist today. There are some concerns so we will be following up with his orthopedic specialist to obtain more x-rays.

Photo: Tomorrow is Miracle Treat Day at our local DQ  Jefferson Dairy Queen / Orange Julius. We will be there 12:00-1:30 with Tripp Halstead Updates and back in the evening to co-judge the blizzard eating contest. Stop by and say hello and support CMN! Here is our family photo from last year at the event!! B is doing ok. Still has a terrible cough from drainage but he does seem to be improving. School is going great and he met his new physical therapist today. There are some concerns so we will be following up with his orthopedic specialist to obtain more x-rays.