Our Journey with Conjoined Twins
Abby & Erin
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28
Romans 8:28
COVID has once again changed our plans this year.
This year has been such a rollercoaster when it comes to COVID. From quarantine and tele-health to now wearing masks and always having to social distance. One of the many things that changed because of COVID is also our Philly trips. We usually head up to Philly every 6 months or so. This year we had missed out regular six month appointments that were back in June. We didn't want to travel and go into a city, let alone a hospital and chance the girls getting sick because of it. Since they have been healthy and progressing we weren't very worried about missing it. (side not we had a dr appointment today and the girls' health is great! They have gained plenty of weight in the last year and have progressed nicely in new milestones. Erin is walking very well and working on walking up stairs, and Abby is taking steps with a walker! everyone is very happy!) But now that we are coming up on a year we have made the decision that we need to go. We have been talking about the girls having reconstructive surgery in the next coming months and so to be sure that they are ready we decided we need to see their doctors and surgeons in person. So we have our dates planned for the week before thanksgiving. My mom and I will be traveling up to Philly while Riley stays home and works. We usually go up and stay at the Ronald Mcdonald House when we have several days of appointments. Because of COVID they have some new policies. One if which is that if you are staying under a certain amount of nights they are not allowing you to stay. While we fully understand that they are trying to limit foot traffic and protect those who are dealing with difficult health issues it puts us in a bit of a tough spot. This was something I didn't think would happen. But as of right now we are not going to be able to stay at the Ronald McDonald House unless their policies change in the next couple weeks. We weren't planning on having this huge expense happen. Especially right before the holidays. Usually when we stay at the Ronald McDonald House we receive free lodging, free food, and a shuttle to and from the hospital so we don't have to pay for parking. Now we are looking at having to pay for 5 nights at hotels, paying for all the food, and paying for parking. If we didn't have to go we wouldn't but the girls deserve to have the best care especially when it comes to planning and talking about upcoming surgeries. On top of the things I have listed I also blend the girls feeds which will be a bit tougher when staying in a hotel. I am going to have to try and travel with most of the things that we blend on a normal basis since we won't have a kitchen like we did at the Ronald McDonald House. We will have much less space, and will have to have the girls sleeping basically right next to us...which is tough when they are in bed quite a few hours earlier than my mom and I are. The whole thing is just more of a hassle. It's frustrating when you have a child(ren) with special needs and their medical needs cost you more than you anticipate. It's not like it is something you can "budget" for. Everything in me wishes I could have a 5 day vacation with my family rather than spending all that money to go to Doctor visits (not that we have a vacation planned, but we could have). This also will eat up our Christmas budget. Life is not the easiest living paycheck to paycheck, but we make it work and when we can save a little here and there to try and "prepare" for things we know are going to cost we do. But life is crazy and COVID likes to throw us curveball after curveball. Pray for us and we try and figure out how we are going to swing this. Even with discounts from the hotels we are still looking at at least $100 per night and thats not including food, parking, or gas. We are so grateful that the girls' insurance covers out of state doctors visits.....we just wish things like this could get covered. We so appreciate all of the prayers and support we receive from our Delaney Twins Family. We wouldn't have been able to do a lot of what we have done without you all. It brings me to tears when I think of all the kindness and love that our family has been shown. We will keep y'all updated on how everything goes in Philly and what our plans look like. We hope you all had a fun and safe halloween and we hop and pray that you have a wonderful thanksgiving. Even when things are tough we know we have so incredibly much to be thankful for!!!
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AuthorMy name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. We are trusting that God is going to work all this out for his good! Archives
March 2021
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