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
We are halfway home from Philly!!! We were up in Philly this past week for a bunch of follow up appointments. It's a long trip but it is always nice to see all the girls primary doctors and surgeons and be able to update them on progress and voice concerns. We were able to stay at the Ronald McDonald house which is amazing. We absolutely looooove the Philadelphia Ronald McDonald house and all that they do for our family. Every time we go to Philly they welcome us with open arms and do anything that they can to help our family. It really is like going to our home away from home. We even get to see other families that I had been there with when the girls were still in the hospital. Funny thing, when you make friends with other people who have children with special needs, you end up seeing them fairly often since you share the same doctors and use the same hospital. It's so fun to see other little ones who were so sick doing so well and running around and enjoying life. It was also really fun to see the girls interact with other kids at the Ronald McDonald house. We don't go many places where I can put the girls down and let them just explore (mostly because of germs, but RMH is kept very very clean since there are children with compromised immune systems staying there). Erin is so independent now that she is crawling and she would crawl right up to the other kids. And it was so fun to see other kids coming over to Abby to hand her a toy or say hi to her. It made my heart happy to see them be able to be typical little kids playing with new friends! Our first appointment was CT scans. The girls had to be sedated for these since they don't understand "stay still" yet. Both of them did wonderfully and came out of sedation great. We then had to wait a few days till we were able to see our surgeons to talk about what they saw. The next day we saw neurology. Mind you we have this specialist also at home in case of emergency, but our primary neurologist is in Philly. They were very impressed with how much progress the girls were making . So much so that they decided to get EEGs done. They suspected that the amount of seizures the girls have had were decreasing and wanted to check it out. So we got EEGs done and amazingly they didn't see any seizures!!! Granted they have some abnormal brain waves but that is to be expected, but the fact that they didn't see any seizure activity was HUGE! So we are going to start weaning them off of some seizure meds!!! God is good! We then were able to see our plastic surgeon to talk about the CT scans and future plans for reconstruction. The girls CT scans looked great. There really weren't any changes since their last ones in February. Erin's skull is actually trying to heal itself and has a little bit of bone regeneration going on which is really interesting and not expected. And Abbys ventricles look amazing. After surgery I was told that there was a 70% chance that Abby would need a shunt at some point in the near future, but she hasn't had any extra fluid build up and it really is something that can't explain which just proves what miracles these girls are. God just keeps proving himself through these girls over and over again!!!! We then were able to see our general surgeon and the girls dietician. Unfortunately both girls have lost a little bit of weight (most likely because they are moving more than they were before). Because of that we changed up their diet a little bit to add some more calories. I am blending 70% of their diet now so I am just adding some extra fats and adding a little more of their pre-blended food to up their calories and hopefully get them gaining some weight! Then today we got to check in with the girls' Rehab doctor. He was impressed with the new things that they are doing and how much has changed in the 6 months since we last saw him. We were worried about Erin showing some signs of being autistic but she has since then changed in the opposite direction and is much more engaged and looks in your eyes much more than she was. So as of right now he really isn't worried about that. Our biggest hurdle right now is getting the girls eating by mouth..... The girls right now get feeding/speech therapy 3xs a week. Abby has 3 feeding therapy sessions and Erin has 2 feeding therapy sessions and one speech session. They've made progress but as I have mentioned in other blog posts the progress is just incredibly slow. Slower than we would really like to see. Because of that we have been recommended to have the girls involved in CHOP's intensive feeding clinic. This would be intense feeding therapy. The girls would meet with a therapist would will work with them and their eat for 3 meals a day 5 days a week. Because of the intensity we would be staying in Philly again most likely for 4-6 weeks. This is something that I know would benefit the girls but makes my stomach hurt.... We have been home almost a year (Just a few days from now marks a year of being home) and I am just starting to have somewhat of a life outside of the girls and all their "complexities". I'm finally starting to make some friends and do things other than just taking the girls to therapy and dr. appointments. So the thought of having to stop doing all that and go back into the isolating world of living at the Ronald McDonald house without my husband doesn't really appeal to me, but I know it's something the girls really need. The only little snag about all this is trying to make sure that the girls would be able to get their other therapies (PT and OT). So more info to come on all that when I get it, but it looks like that will be something that happens in our near future. We are so thankful that everything went so well at these appointments. It was fun to see all of the girls doctors, nurses, specialists, and many other people. We also got a chance to see Riley's family for a little bit which was nice. And it is always fun to watch the girls with my mom. My mom comes with me and helps me when Riley needs to stay home and work. Without her I don't think I would be able to travel for these appointments like a do. We are very grateful for her! Thank you so much for all of your prayers and well wishes! They are definitely felt. We are so excited for the holidays coming up and all the fun that comes along with them! We pray that you and your families have wonderful holidays as well!!!
2 Comments
Maureen Wrightsman
11/13/2018 11:24:06 am
Heather You are so very right, there is so much power in prayer. God Bless you, Riley and your little girls.
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Isabella Lucas
11/10/2022 05:03:14 am
My ex-husband and I had always managed to stay friendly after our divorce in February 2017. But I always wanted to get back together with him, All it took was a visit to this spell casters website last December, because my dream was to start a new year with my husband, and live happily with him.. This spell caster requested a specific love spell for me and my husband, and I accepted it. And this powerful spell caster began to work his magic. And 48 hours after this spell caster worked for me, my husband called me back for us to be together again, and he was remorseful for all his wrong deeds. My spell is working because guess what: My “husband” is back and we are making preparations on how to go to court and withdraw our divorce papers ASAP. This is nothing short of a miracle. Thank you Dr Emu for your powerful spells. Words are not enough.
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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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