We have had a pretty quiet day today. Braden had school til 11 and then Speech Therapy. He is progressing and I couldn’t be prouder! After, we came home, we met his Feeding therapist for a session. We are going to bump this up to twice a week b/c of his aversion. He is eating some, but its been really hit and miss. He will get on a kick of a food he will eat and then just stops. I do think he does better at school with his eating b/c of the social aspect of it. His teachers keep me updated with what he is eating smile emoticon Love them! He ate String cheese at therapy today! That was a new one for him! He didn’t eat much and the first few bites were rough but he did well after. I got to snuggle with his therapists new baby boy! He is a doll! After Feeding therapy, Braden had an appointment with his massage therapist. He was NOT happy about that at all! He hates getting massages. His muscles are so tight though, it really does help him. Tonight, we headed to neena’s and pop pop’s house (my mom and dad) so he could try on his suit for my sister’s wedding. He was bawling telling us he looked ‘adiculous” (ridiculous) i couldn’t help but smirk. He looked like such a little man! Tomorrow, we are headed to either Bear Hollow or Hurricane Shoals to grill out and enjoy the day. It is suppose to be 75! Matt is off all weekend so the kids are happy to have daddy home! Thank you all for all the love and prayers! We love you all and we feel them! I haven’t heard about the results of his Holter Monitor yet, but that usually means all is well and the same as last year smile emoticon
Braden had a cardiology appointment today. Overall it went well. He hasn’t worn a holter monitor In a while, so he will be wearing one the next 24 hours. Then we went To physical therapy where Mrs. Peggy worked on his muscles. Tonight, We went to one of my best friends houses and had pizza and let the kids play. She use to live right behind us but they recently moved so we are about 15 minutes away. Maddie and B have been “boyfriend and girlfriend” for about 4 years lol! Their words, not ours! It’s so funny, it was a total coincidence that they match today!
Someone is feeling better! yay!!!
Carder had his pinewood derby today. Overall he placed 10th out of 26 cars. He showed good sportsmanship too. I am so proud.
He’s in good spirits but his GI tract is still a hot mess! The doctors keep telling us to just keep pushing pedialyte through his tube for hydration. He missed school all week. We are praying he can return on Monday. He is really missing his teachers and friends.
It’s been 5 years now since Braden’s gtube surgery. Strangely enough, I am glad he has it. His tube is the only thing keeping him out of the hospital. He has been fever free since Monday but his GI tract is a mess. He hasn’t ate but an apple and 5 crackers in 5 days. He is only getting pedialyte through his tube right now. Please pray things change soon or we may end up in the hospital.
I had more to post about our vacation and some other fun things, but unfortunately today, i have to ask for additional prayers. Braden is Ill. He woke last night vomiting past his fundo. Today, he is randomly dry heaving (seems to have subsided) and terrible diarrhea. We are hydrating via his feeding tube. Unfortunately, there is a fine line with hydration, dehydration and diuretics. If he gets any worse, we are headed to CHOA. We have spoke with pediatrician and cardio today. Keeping a close eye on our boy.
Tough day. The transplant doctor called today. He wasn’t as happy go lucky as he has been. Normally when I talk to him, I am at ease with the results of the cath. Not so much this time. With the changes in his cath, he instructed us to keep a very close eye on Braden for any symptoms. We do this already and document when things happen, but Braden is no longer as stable as he has been. Transplant could still be some time away, but its probably closer than we would like. I have prayed he could make it another 5 years, but now i have doubts. I hate this feeling so much! For those that have asked, he is not listed yet because he is able to function with the heart he was born with. As long as his body tolerates his own heart, they are reluctant to list him. A transplant is no cure. It is exchanging one set of problems for another. He is currently on 2 medications a day (4 doses a day) After transplant, he is looking at up to 14 or so meds per day. This takes a huge toll on kidneys. That could ultimately lead to kidney failure and needing a kidney transplant. We have lived in fear and worry of the unknown since i was pregnant with Braden. He took an extra long time for his heart to start beating, then at 18 weeks we found out about his Cystic Hygroma and were given a choice. We chose life. At 22 weeks, we got the confirmation of a heart defect but it was operable and he would live a normal life with periodic cardiology check ups. Well after his first surgery, its been one issue, after another, after another. I would not trade my life for anything. I love my son with all my heart. I just wish I could take the pain and fears away from him. Thank you all for continuing to pray for Braden and for us. It truly means the world to us. -Matt, Michelle, Carder and Braden
He is out of surgery and still a bit loopy. He was acting like a wild man so they gave him a little sedation. He has to lay flat for the next 3 hours. I will update more later. Transplant doc is out of the office today but in talking with the cath doc, he appears to be stable. There were some slight changes, but I don’t think it’s enough to cause worry.
Braden is doing well! No
News is always good news! Just a few pics of his week. He thinks it’s hilarious when he says “but first, let me take a selfie” so that is exactly what B and aunt Abby did! We took Abby and grandma window shopping at sugarloaf mills. I was so proud of B. He walked the entire mall! He went to bed at 7 that night Bc he was so tired, but he did it! It’s late, and I’m rambling! Don’t forget to pray for us this coming week. Braden’s heart cath is a week from tomorrow. I try not to worry, but it’s surgery…it’s hard not to stress. Braden will be sedated and intubated for it. Due to his Noonan Syndrome, he has sub-glottal stenosis and no real neck so it’s a blind intubation which scares me every time. The doctors tell me how rough it is to Intubate him but I have faith in God that he will always see him through!
Sorry for the lack of updates. We have had alot of stuff going on. Everyone is good And nothing will bring us down. 18 days til Bradens heart cath. Carder got Bronze honor roll for both semesters. We are so proud! Braden had fun cheering on our Buckeyes! His aunt Katie (my best friend from childhood) bought Carder the jersey He is wearing since Carder outgrew it. Braden had a check up with our awesome pediatrician Dr. Setia. He is in the 75%ile for weight! That a boy!! He sounds great so I am optimistic all will go well and heart cath results will be the same as last year we love y’all! Thanks so much for all your love and prayers!!