29/11/2023
Home sweet pineapple, we made it!!! 🏡🍍
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28/11/2023
Current Status:
Well, fixing our car wasn’t an option today. The transmission exploded and had metal shards in the fluid. We have no idea what happened, the mileage isn’t even really that high. That ultimately left us and our car stranded. I spent our day making arrangements for our car and ourselves to get back home in New York. I managed to get our car towed (AAA covered 200 miles thankfully). I also secured last minute train tickets back to Albany-with an hour and a half layover in NYC. Ultimately it’s been a day, I’m just thankful we didn’t keep driving our car-the mechanic said he was surprised we made it there safely.
28/11/2023
When it rains it pours. While heading out this morning our cars transmission started acting up. We went until our check engine light came on which was only about 45 minutes into the drive home. We found an auto repair shop that was closest to us and they were able to get us in. Now we wait to see what’s going on with our car. We just want to safely make it home! 😭
28/11/2023
Today has been overwhelming. We are coming back to Washington DC in about a month. Rohans buttons just aren’t working as they should therefore his flush isn’t happening. They gave us two options today and ultimately we went with the button that doesn’t have a balloon. However, this button can only be changed in a radiology lab (medical setting). This button typically lasts a year, which can be replaced when he has to be back for his yearly appointments. The down side is he will need to be sedated for it. I’m hopeful that this will solve everything for our dude.
Homeward bound tomorrow!
26/11/2023
Some know while others don’t. We’re back down in Washington DC (made it safe and sound with 5 minutes to spare before the check in at the Ronald McDonald House closed). Traffic was awful especially on the Jersey turnpike. Rohans in person annual X-ray and appointment is on Monday. I’m not going to lie, this year has been rough on him. His mini ace buttons balloon hasn’t held up like it should so his (what needs to be nightly) flush hasn’t been going so smoothly. It feels like he has went through many many buttons this year. Insurance doesn’t really pay for his button-the one Albany Med got approved ended up having a different tip adapter than what hooks up to his gravity feeding bag. He also went through all the stoppers he had in case his button failed. So needless to say, it’s been a rough year. But I’m more than ready to finally be here and hopefully come up with a solution for everything my boy has been dealing with. Tomorrow, we’re going to have some fun. 🤩 Monday is the appointments. 👨⚕️ 🩻 Tuesday is when we come home. 🏡
15/12/2022
On this Washington D.C. adventure we stopped at the American Dream Mall for lunch! While the boys ate Taco Bell, they were pretty pumped to check out Mr.Beast Burger-Rohan really wanted to try the fries. 🍟 Mr.Beast is one of Rohans favorite YouTubers, so checking this out was a must. I always try to incorporate something fun on these D.C. trips as Rohan has been through a lot-it gives him happy memories to go with them! Now we are on the Jersey Turnpike, making our way to the Ronald McDonald house! Rohan has 2 appointments tomorrow, then we’ll come home Saturday. Hopefully we’ll avoid the storm that’s coming!
31/08/2022
I just realized I never updated here, but Winter is home as of yesterday!! We are all so happy to be home together! 💜
26/08/2022
Its been a few days, Winter is still in the hospital. I went home to be with Rohan, Zion and Spring the night before last and came back to be with Winter last night. They now have her on an asthma plan and she is on low flow oxygen. All steps in the right direction! She is exhausted which is to be expected. Thank you all for checking on our peanut and keeping her in your thoughts and prayers! ❤
24/08/2022
Winter is in a room on the pediatric floor! She has perked up a little bit, but her oxygen has remained the same. It has been a long exhausting day and we are ready for bed. Hopefully tomorrow we'll start to see some improvements! 🙏
23/08/2022
UPDATE ON WINTER...
So her oxygen levels weren't where they wanted them to be. She was maintaining 92-94 while on oxygen. Her breathing was also very fast and she was just super uncomfortable. The respiratory nurse decided to up her oxygen again in hopes it will let her breathing rest. She does keep getting fevers, which they are also treating. She is still clear from the PICU for now, hopefully she won't need it. Winter is admitted to the hospital, but currently still waiting for a room on the pediatric floor. Unfortunately there has been no beds available upstairs so the pediatric team has to come down to the E.R. to see her. It has been a whirlwind of a day, and we're all exhausted. Our Peanut is one tough cookie, that's for sure!
Side note: This clock will be the epiphany of us 🤦
23/08/2022
We have smiles today!! We are still currently waiting for the respiratory nurse to come in and check on Winter, but she snacked on some Cheerios and drank some apple juice so we'll take it! The plan is to try to wean her off of oxygen and see how she tolerates it. They told us last night if she needed anymore oxygen then she was on already, she would of been in the PICU. Luckily, she didn't need anymore. Thank you all for your thoughts and prayers, we appreciate them more than you know! 💕🙏
23/08/2022
Please keep our Peanut in your thoughts and prayers! We are currently in the ambulance on our way to Albany Med because she has pneumonia, her oxygen won't stay above 90 without the mask on. I will keep everyone updated as the updates come. Thank you.
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