shadyridr

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About shadyridr

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  1. Same as me, lots of uncontrollable sobbing. Justin sees us and says ugh you're giving me a head ache. I had a dream last night Riley was sick and when I woke up I realized she was gone. My heart actually hurts.
  2. The thing that breaks my heart the most is my Justin no longer is a big brother. He was so amazing yesterday. He finally got to visit her because we thought she was turning the corner. He knew she was very sick but I think he always assumed she would get better. When he first got there we went into another room and spoke to a social worker to prepare him. He wanted to see her but when we told him it's possible she could die he started hysterically crying. He kept asking over and over is she gonna die and we kept saying were not sure. We also told him it's possible she gets better. After he saw her I wanted to take him out of the hospital and do some normal kid stuff with him. Played some video games at the Ronald McDonald house, played pokemon go, and then we all went to shake shack. I was in a good mood because I truly believe Riley was turning the corner. Then we got a call while at shake shack to come back. The social workers stayed with Justin. They asked him if he wanted to see Riley and he said yes. He came in and we were holding her. He kissed her and then started crying and said he was scared so they took him again. They played video games with him. Then after she died he wanted to come back in. He wasn't scared anymore. He held her, he kissed her good bye, he took hand mold with her. He was so brave. No seven year old should go through that. He was such an amazing big brother in the 8 weeks that he was with her. I truly believe he would've gotten her to walk and talk. She didn't track with her eyes but for whatever reason whenever he talked she looked right at him. They had a bond like none other and that truly breaks my heart that he'll never get to be a big brother to her.
  3. I'm not a religious person but I really hope there's a heaven because I miss her so so much. How am I supposed to wait 20, 30, 40 years?
  4. She a mom with IP, has a daughter with IP including seizures, and she is the president of the ipif. She is now working with the scientific advisory board and Riley's doctor on updating the IP protocols to include testing for IP babies for PH with an echocardiogram at early age.
  5. Link included
  6. They said they've received some donations already and will put it towards this fund. Thank you
  7. Another thread mentioned starting another fund for Riley. Please don't. Your last one was more than generous. If you feel the desire to contribute to a donation in Riley's name, a crowdfund is being set up by the ipif. It will be in Riley's name and 100% of the funds will be donated to the pulmonary hypertension unit at the hospital where Riley was diagnosed and who worked so hard to save her life. Hopefully more research can lead to more screenings for PH in IP babies and save lives. Link attached https://www.gofundme.com/272n34ss
  8. Thanks Fred, I thought I did all I could but maybe I should've pushed for another echo after the first one was normal. I can't believe an echo can show a normal heart and then show severe hypertension 8 weeks later. I'm hoping the autopsy provides some answers and can save at the very least one baby. Her death can't be for nothing.
  9. Went back and forth to the hospital for 7 weeks while she was in NICU, took a ton of days off work to be at every doctor appointment, went to Early Intervention meeting and fought for her to get services, joined support groups on Facebook for pediatric stroke, ip, children with special needs, and pulmonary hypertension. Did tons of research on stroke, seizures, pulmonary hypertension, babies not gaining weight. And it was all for nothing. I can't believe she's gone. A week ago at this time was her appointment for pre surgical testing and I didn't think anything was wrong with her and now I'm planning her funeral. Life is not fair. The nurse for the eye care facility just called and left a message asking how the pre surgical testing went and to remember put the drops in her eyes. We had to cancel the christening party we had planned for her in October. She never had a party, I never bought her a gift, I barely took her out to do anything, we went to lego land the Monday before this all happened and cheesecake factory. It was like the only thing we ever did like a normal family. That was her great vacation. I posted pics on Facebook without a care in the world and now she's gone.
  10. We only took one picture with all four of us in it
  11. Ipif.org
  12. Please no more money for me. Unfortunately most of the money you donated to us for Riley has been unspent on Riley. A small chunk will be used for her medical bills, a large chunk has already been donated to ipif, and the rest I will use for something else in the future. I had life coverage on her. Please donate to ipif.org in Rileys name. Thanks all
  13. I'll never forget the support I got from these boards. Thank you all.
  14. Riley fought so hard but she couldn't do it anymore. RIP Riley. My warrior. I'm completely heart broken. Justin got to kiss her good bye.
  15. He's definitely got the yips but if he overcomes this adversity it'll probably make him a better kicker in the long run.