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
wellSo as you all know we have been in Philly for about the past week. We have had a few appointments so far and have moved a few things around. We still have to see our neurologist, general surgeon, nutritionist, plastic surgeon, neurosurgeon, and ophthalmologist. We also have to get CT scans done. Please say a prayer that the insurance goes through for the CT scans. We have been battling them for the CT scans for some reason. We pushed the appointment back as far as we could to give it more time to try and go through. So we are crossing our fingers and toes and praying that we are able to get it done. We have that appointment on Tuesday. Im actually really excited to see how things have been healing. We haven't had a CT scan done in about a year now. As far as the appointments we have had so far things have been going ok. We saw a rehab doctor for follow up and he was happy with how the girls are doing. He has no real concerns right now, just to keep doing what we are doing. We also had some appointments that are part of a neonatal follow up program. Those appointments are to look at overall development to make sure we are getting all the services we need. After seeing a medical doctor, a physical therapist, and a developmental psychologist the girls received a new diagnosis. We unfortunately haven't had one of these appointments in about 18 months. Which actually turned out to be a good thing because it would really be able to show how much they have developed since then. And after talking with the psychologist I came to find out they haven't developed much. They have made advances mostly in gross motor skills, then fine motor skills, and as far as speech they haven't really changed much. Being a parent you always tend to look at the best in your child. You give them the benefit of the doubt. So in the day to day we celebrate the tiniest of milestone. Every new skill we take pictures and tell all the family and it is a big celebration. What I hadn't realized is that besides crawling and pulling to stand not much has changed. The girls are still developing but it is taking a lot longer than we were hoping. Our hope was that by the age of 5 they would have mostly caught up. Maybe that was a lofty goal but it was something we thought might be achievable. We always knew that things could be different, but the girls just seem so "normal" to us in so many ways that we never really let ourselves think that they wouldn't. But after this appointment we have a new diagnosis for the girls. They are now considered to be intellectually disabled. "Intellectual disability (ID), once called mental retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. People with intellectual disabilities can and do learn new skills, but they learn them more slowly. " This is one that hit us hard. We were told that the girls most likely will never actually catch up. And that we will most likely be caring for them well into their adult lives. They're taking years to do things that takes "typical kids" only a month or so. So the thought of the future is a scary thing and we really don't know what it is going to look like. We have also always wanted to have more kids but now I wonder if we would be able to handle it. We are still so hopeful. So hopeful that the girls will eventually catch up and that they will keep learning and developing, but we got a hefty dose of reality. It's one thing when they are little like this, but they are already heavy carrying everywhere, we struggle with the correct equipment to get them around it, and we miss out on a lot of things because it is harder to go and do things than it is to stay home. The thought that this could be the rest of our lives is terrifying. So please pray for us as we process this information. We still want to talk to our other doctors and get their opinions on the matter as well according to what their brains look like at the moment. We've just always had a lot of hope for how far the girls could go, and not that we don't have hope anymore, we just are trying to process the thought of what we were hoping for not coming true. We know God has a plan and always has had a plan throughout all of this. And we cling to that with every part of our being, but it's so hard when everything in you wants to just run (not that we ever would, it's just that fight or flight thing, and I'm feeling a little tired of fighting. I can't speak for Riley but I am pretty sure he is right there with me). We love our girls more than we ever thought possible and just want them to have the best life and experience all the good things life has to offer. So please just pray for us moving forward and processing this. We also need to go through and see what this diagnosis does as far as services the girls can receive and everything that comes along with it. We've been told there is nothing "more" that we should be doing regarding the girls therapies and schooling which is also tough to think there is nothing I can do to help them more. But we are just going to keep moving forward, keep celebrating the small things, and just take it one step at a time into the unknown. We love you all so much and are so grateful for all the prayers, gifts, and words of encouragement. There are tough days like this where your encouragement helps push us through.
13 Comments
11/17/2019 09:30:21 am
Honey, of course they are slower than other kids. Look at everything they've been through and all they're now fighting to overcome. I hate labels like this because they crush your hopes and dreams. They will get where they need to be, even if it takes longer, and that's okay. Don't give up on the dream that they will both be independent and productive adults. You're giving them every opportunity and all the help that's available. Progress will come. I'm sorry you're having to cope with this crushing news, but it's not written in stone, and if this is a realistic assessment, it's hard to imagine where you'll find the strength, but you have done so much you didn't ever believe you could do, and you'll keep doing it for your precious girls. Hang in there, Mom and Dad. You have a great support system and the power of prayer going for you.
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ashlee walker
10/26/2020 04:30:28 pm
LOVE SPELL TO BRING BACK EX LOVER AND RESTORE BROKEN RELATIONSHIPS
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Cathy
11/17/2019 11:40:05 am
I know your hearts are breaking built please don’t lose hope. I’m a pediatric home health nurse and know that children are an endless source of surprise in terms of development. I wish I could share about the little person I care for and how they are defying the prognosis beyond anyone’s expectations. I’m sure changing your focus from gross motor to intellectual development will bring the progress. Lordy, there only so many hours in a day. In the end, their happiness is all that matters. Blessings to you.
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Kathy
11/17/2019 11:40:47 am
This is such an honest post I have an adult daughter 22 next month and I still remember all the emotions once I got a diagnosis yes it’s been tough isolating challenging but you come through it my daughter has achieved so much and I’m so proud to be her mum my life took a different direction which I embraced I put career plans on hold and volunteered around my daughters needs I never thought I would have any more children but hey I’ve been blessed with a girl 5 and a wild boy 3 while my oldest is 24 take it a day at a time go with the flow and enjoy the ride I’ve also just qualified as a nurse something close to my heart as I feel I can relate to parents and carers on a realistic level with true feelings and compassion I wish you Riley and the girls all the best for the future as your journy continues x
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Melody
11/17/2019 12:06:02 pm
I have three daughters. Our youngest is also diagnosed with intellectual disability. But she is the happiest child. She is 9 and runs around with her sisters. She learns much slower than children and is emotionally younger than her 9 years but she is happy. Like your beautiful girls, she takes things at her own pace, but believe me their spirit runs just as strong if not stronger than other kids. That’s just an intellectual diagnosis and what you are reading is just the worst cases. From one mom to another, do not let this new diagnosis cloud your hopes and dreams for the girls. As long as they keep progressing, they will be ok. They are happy and are loved. That is clear from all your posts. Good luck to you.
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Shelley
11/17/2019 01:45:26 pm
Keep doing what you are doing and please don’t let labels define them or scare you....Only OUR DEAR LORD knows.....lots of love and PRAYERS and ANGELS for you, Riley and Abby and Erin. 👼🏼🙏🏼👼🏼🙏🏼👼🏼 (I have been following these sweeties and they amaze me)
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Dawn Kirk
11/17/2019 02:31:26 pm
From the get go it was a miracle that these girls survived...and it was pretty certain that they are affected mentally....their brains experienced major trauma. That being said, they are happy, thriving girls...and that is because of you, Riley, and all your family and friends who are able to help you...they are very loved girls! And those of us who can’t physically help are praying like crazy for all of you!❤️ Try not to fret about the future and just enjoy what each day brings....I’m betting there are more miracles in store for them.🙏🏻🙏🏻🙏🏻🙏🏻 Just take pride and find peace in that you are doing everything you can for these sweethearts. You’re great parents! It’s ok to be afraid and worried about what may come, just don’t let it take over...have your cry or scream at the wind...but them breathe..... Hoping the rest of appointments are positive! ❤️❤️❤️❤️
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Andrea S
11/17/2019 06:33:46 pm
The feelings you discuss in your post very much resonate with me. I have a 12-year old daughter with intellectual disability and other severe disabilities. I remember getting one diagnosis after another when she was little, and feeling like my hopes were crushed. I remember balancing guilt in wondering if I was lowering my expectations too much, and sadness at what I feared my daughter’s and my future would be. You have to go through the stages of grief with this new diagnosis. For me, it took longer than I would have liked. Once I accepted things and adjusted my hopes (I never give up on hope — I just hope for different things than I once did), I felt much better. I try to take one day at a time and enjoy my daughter. I remind myself that she finds joy in her life. Although she gets excited about different things than I do (same song 20 times in a row), she is still loving her life, learning, and experiencing new things. It does continue to be difficult — I know just what you mean about hauling her around and staying home because it is easier — but it is good. My daughter has a twin and three other older sisters, and while our lives are all different than those of other families, it is good. We are happy, and she is happy. I’m sorry for what you are going through and for what you will go through, but - coming from someone who has lived it (with only one, though...) - there is also a lot of happiness ahead. Hang in there!
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Ginny S.
11/18/2019 12:33:28 pm
I have been following your FB posts and blog after seeing your girls mentioned on Erin Herrin's FB page when she asked for prayers for the original separation surgery. As a retired nurse, I had a lot of interest in the case. You and Riley are great parents and have done so much to help the girls, I have so very much respect for you both! I had a "medically fragile" child as well, her situation is quite different from yours, but I've been in similar if not identical "shoes." My daughter had Reyes syndrome at 13 months old following Chicken Pox. It left her with neurological damage. However, she graduated from high school (not with a great gpa) and then at 35, received a bachelor's degree with a major in foreign languages. As for me, in 2nd, 5th, and 7th grades, we were given "intelligence" tests in the public school system, and my mother was told I was "trainable" and would probably be able to be a cake decorator in a bakery, or work in a factory! Not to brag, but I got my RN license at 27, and went on to finish grad school. Never let labels given at to your daughters at an early age be cause to give up on their abilities to learn!
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11/20/2019 08:47:47 am
I am so amazed at how well the twins are doing.. They are miracle , beautiful girls in my eyes!!! I know how you feel about the DD diagnosis, it does hit hard!! We got that news when my Nancy was 2 1/2 , when she had an MRI, and also got diagnosed with Microcephaly, and brain damage to certain parts of her brain, including the part with speech. So she is non verbal... And blind since birth.... Life can be so challenging with our special challenged and health issued children. Yet, the amazing gift they give us to our lives is just something that is hard to explain to some people.. Those small milestones, even if a small one every 5 yrs. is so so amazing to us!!! We take nothing for granted. It is a grace that our children have given us, which is beautiful... My daughter is 38, lives at home with us, for as long as we are in good health to care for her and kiss her good night evry night and tuck her in... And say good morning evry morning... And she flaps her hands in joy! Which is her sign for "happy"!!! And that is what it is all about.....
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Patty Brier
11/23/2019 06:57:08 am
I like several before me have an adult son with cognitive delays. He too has far exceeded every expectation. I wish there was a way that I could take your pain away. I remember how dark those days were. I hope you can find encouragement from those of us who have walked this road. I know when I was going through it one mom with an adult son came to me and assured me that it really does turn out okay. We take a different road than we planned but it’s no less rewarding. I know you hear over and over again to take one day at a time but now more than ever before those words ring true. My son was the first to do and use so many of the technologies that are available now simply because it’s changing so fast. Things that seem like obstacles now may not be an issue at all by the time your girls need them. Celebrate every achievement just as you have been doing! They work so hard for those! I’m praying you find comfort and encouragement through this time! It really will be okay!
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ashlee walker
10/26/2020 04:30:48 pm
LOVE SPELL TO BRING BACK EX LOVER AND RESTORE BROKEN RELATIONSHIPS
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Isabella Lucas
11/10/2022 04:58:58 am
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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
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