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.
I'm trying to be better about blogging more often. I love being able to type out thoughts and feelings and also update everyone on the girls and all their amazing progress.
Here in NC things are opening back up and life is starting to get back to normal. But unfortunately for us things are still pretty much like they were in quarantine. The only difference is that we go to therapy 2 days a week and tele-therapy two days instead of it all being tele-therapy. I am so glad to be back in the clinic with the girls. You don't realize how much work goes into providing therapies for your children every day. They seem to be pretty happy that they are back with their therapists as well. We are still super super careful at therapy and the girls don't come into contact with anyone other than their therapists and we bring a bag of our own toys to play with so we don't chance sharing germs from toys. We love everyone at the girls' therapy. The therapists and staff are all so wonderful and accommodating and we are so grateful for them and for moving things around so that the girls could get into the clinic two days a week and still be very safe.
Other than therapy the girls still don't really leave the house, and it is tough on me and on them. Yes, we take walks, and see my mom, and see Riley's mom. But other than that we don't do anything. I will literally put them in the car and just take a ride to get them out of the house. We don't go anywhere, we just drive around. It tough because in order to go grocery shopping or do anything the requires me to get out of the car, I have to get a babysitter for the girls. And our families are great, but there are times where I realize I don't have one ingredient for dinner, and I can't just run out to the store like I could before. Everything requires a plan now. And because of that I am with the girls pretty much 24/7. I usually try to run out for things once they are in bed, but now things are all closing early (everything around here seems to close by like 8:30) and by the time I get the girls down for bed I have to RUN through the store to get the things I need. And yes we do use Walmart grocery pick up, and all the curbside services we can. But getting out and doing the shopping for the house used to be one of my "me" times. It's just a bummer that things have changed so much and don't look like they are going back to normal any time soon. It's hard making decisions for the girls throughout all of this as well. We want them to be able to go into the world and be able to go to the park, and go to the library, but right now we just want to keep them safe and healthy.
While all this is going on we are also in the process of moving again. Hopefully this will be the last move for a while. We are sick of having to move every year or so and want to be able to "settle in" in our next place. We are planning on renting again and then in about a year or two think about buying a house. But I want to be able to stay in our next place until we are able to buy a house. So with Riley's broken arm the packing pretty much falls on me. So while I pack, Erin climbs in and out of the boxes and pulls things out that I put in, while Abby crawls around whining because she wants the packing tape that I won't let her have. It's a bit of a circus but I am getting things done. I just keep trying to get a few things done everyday, that way two weeks from now we aren't panicking that we have to be out. Please keep us in prayer as we look for a new place. We have to be out of our current rental by Aug. 1st and we are still trying to find a place to move into. Things in our area are not the cheapest and they go very quickly. We know that God has a place already picked out for us and we are just trusting him to lead us to that.
Riley is doing very well. Things with him have settled down finally after a very rough past almost year or so. He is happy and hopeful again and we are so grateful. It's a really tough thing to watch someone you love struggle with mental illness and have there be nothing you can do to help. It was a really tough dark place for us. But he has pulled himself up, gotten the help we both needed, and are moving forward. His arm is healing well. The surgery went well and he ended up getting 2 plates and 12 screws put in. Recovery from surgery wasn't the easiest but within a week he was feeling much better. He had an appoint last week and they put a hard cast on him that he will have for at least another month. They will check it at his next appointment if he is going to need to keep it on longer or not, and then what type of therapy he might need to get his arm back to its normal activities. He also started a new job yesterday! He was hired at T-mobile and is so excited to have a job that could turn into a career. He is in training for the next 3 weeks which is a lot of zoom meetings and classes, but he is doing them and doing well so far. We are so hopeful for this new opportunity! We are also so grateful for it because finances have been a struggle. It will be nice to have an income again other than just my tumbler business. But we are all so proud of him and how he works on himself every single day. He truly is an amazing dad and husband and we are lucky to have him!!!
The girls are doing phenomenal!! Erin has taken to walking so fast! She now walks over 10 feet most times that she walks. She is all over the house and loves her new found independence. Abby is doing things that Erin was doing right before quarantine started so her therapists are excited at the prospect of her walking hopefully within the next 8 months of so (maybe longer, but looking at her progress I wouldn't put it past her). We are now dealing with some behavioral issues with Erin that have been a struggle. She unfortunately has been getting very frustrated. We know this has to do with the fact that she can't communicate like she should. And unfortunately she takes this out a lot on Abby. She has been biting and pulling hair and pulling Abby over. We are working on ways of punishing that will be effective since it is hard to know what she understands. And trying to figure out how to best correct these behaviors. We are working closely with her therapists, a developmental psychologist, and possibly and behavioral therapist. We need to try and figure out how to help her communicate so that she doesn't have these sudden anger outbursts that seem to target whoever is closest to her at the moment. Abby takes it all like a champ and although she cries she still plays with her sister. There are times you can tell she gets nervous, but she still loves her sister and wants to be around her. Abby is definitely the more sensitive of the two of them. When Erin gets in trouble most times Abby cries. So we are trying to soften Erin and toughen Abby lol. They really do seem to balance each other.
We can't believe that their birthday is already this month. We are trying to figure out what we are going to do for them since we can't really have a party right now. We are thinking of maybe having a party some time after their birthday once things in the world calm down a little bit more. But one thing we are thinking of doing is re-doing their bedroom at our new place. It is time to graduate from cribs and baby themes, to big girl beds and play things. We are excited at the prospect of this for the girls but at the same time it makes me sad. We call them the babies so often and we are trying to stop since they are almost 4. It feels like just yesterday we were in the hospital holding two tiny little sweet babies who are now full blown toddlers who are turning into kids! It's so exciting to watch every milestone they hit. It is amazing how fast time has gone. Being in the hospital and dealing with separation almost feels like a dream. I remember longing for the day where they were separate people. And now them being attached feels like it was all a dream. We are so grateful for these two little girls and are so excited to celebrate another year of their miracle lives. We have been so blessed with them and can't wait to see all the new things they are going to keep doing and all the big things they are going to keep achieving!
-that we find a new place soon that is everything we need it to be
-that our finances work out so that we can do this move
-that the girls have a fantastic birthday
-that the girls stay healthy amidst all the health scares we are dealing with in the world right now
-that we will be able to find a new way of life while being able to provide the girls with a life outside of the house.
-that Riley's new job will be everything he hopes and can be something that he will be able to do long term
We love you all so much and are so grateful for your prayers and encouragement!
I didn't realize how long it has been since I have blogged. It's amazing how time flies but feel so slow at the same time.
We have been going through a lot as a family since I last blogged. COVID-19 has changed a lot as I am sure that it has done the same for each of you in so many different ways. We have been in quarantine as a family since right around Rileys birthday which was March 10th. We were battling sickness for the month leading up to everything shutting down so we have been home a little longer than most. Our quarantine doesn't look a whole lot different than what our normal life was. We have always been super careful with the girls because they seems to get sick very easily. But now with COVID-19 we haven't left home very much at all. The only places we have gone are my moms, and Riley's moms houses. Other than that we don't go anywhere. The girls receive all of their therapies via tele-health.
Tele-health is wonderful, and we are so grateful for patient therapists who I am sure cringe when I am trying to get the girls to do certain things. But tele-health is tough. It's a lot of time that I am not used to have to devote myself too. Yes, we would go to therapy a lot during the week. But we could go, and I would "check out". I would scroll facebook and be able to take some time to relax. But now those times I have to be 100% engaged and working. And the girls aren't the best for me when I am trying to get them to do things that they don't want to do. At least at therapy they do what their therapists are trying to do (Most of the time). But it's been a huge adjustment. Thankfully the girls are still progressing well and haven't regressed at all. And thankfully we are going to be starting to go back to the clinic once a week soon so that we can start trying to get a little normalcy back.
Another thing that happened with COVID-19 is that Riley again is not working. He had gotten a new job right before all of this happened. Between his work slowing down a ton, his step-dad passing away, and our family being sick he hadn't worked many days, so when everything slowed down he was basically let go. So he is back on the hunt for a job. So please pray that something comes up that he will be able to have as a career. Something that he enjoys and that he can have long term.
We can't wait for life to go back to normal. Having a child with special needs can be isolating. Not many people understand the daily struggles. And I feel like a lot of the time the friends we do have thing we are a lot of work. Because when we hang out with people a lot of times I need help on and off because the girls are just a lot of work. So now being stuck at home things are even more isolating. Which I know everyone is dealing with, but it has just been a lot on me mentally. I am just tired and want to feel normal again.
The girls have been handling quarantine fairly well. Besides therapy they stay pretty busy during the day. They play with their toys and get into everything. Erin is a climbing maniac and gets herself into some pickles. We have to constantly been watching her. She will climb on the couch and end up on the coffee tables. It's a lot. She is also testing her boundaries. We are thinking with the new developmental leap of walking that she is testing her independence and dominance. She has been biting and thinks it's funny to get yelled at. It's hard for everyone involved. She's bit Abby several times, she's bit me twice, and she attempts to try and bite others. It is not something I enjoy having to tell people when they go to work with my child to "watch out she bites". Her biting used to be more of a sensory thing, but now it happens when you take something away from her and she's mad, or when you're dancing with her and she gets over excited. Sometimes she crawls over to Abby and pulls her down and then bites her. So we have been talking to her therapists trying to decide the best way to correct this behavior since we aren't able to fully tell what she can understand when it comes to being reprimanded.
Abby is doing so good. She is crawling all over trying to keep up with Erin. She is working on pulling to stand. She also LOVES to sing. It is the absolute cutest thing ever. We say "abby do you want to sing" and we start singing her favorite song (let it go from frozen) and she starts singing with us. She doesn't sing words, but she definitely sings. She also sings in the car every time we go for a drive and she will yell if the music isn't on. It's so sweet to see her enjoy music, since that is something the Riley and I also really enjoy. When I was in high school I competed in voice competitions through our church called Fine Arts Festival and went to the national level with a solo. So to see my child love singing brings me so much joy.
The girls do get bored pretty easy now a days though and they get really whiny and cranky. They were used to going out every day of the week between therapy and appointments. So just being home is a lot for them. So anytime my mom or their Nonna comes over they get so happy to see a new face. It's interesting to see how all this affects them even though they don't really know what is going on.
On another note we are also having to move yet again. Our lease is almost up and we are not able to renew it due to the owners moving into this house. She we are trying to find something that we can stay in long term until we are able to buy a house. I have told Riley I don't want to move again after this till we are buying something. I moved once when I was a kid and that was it. So this whole moving every year or so is not my thing. So please pray that we find the right house at the right price in the right place. It's a lot of stress. We have a couple months, but we know that will go very fast.
And to end on a happy note the girls will celebrate being separated for 3 years on June 6th. We are so incredibly blessed by them. I know we have said it before, that despite all the struggle, we are so humbled by the fact that we have a front row seat to this incredible miracle. Everyday is a celebration of new skills and sweet smiles and giggles. We wouldn't trade our girls for anything, they make everything we go through worth it and we can't wait to keep watching them thrive and flourish!
We hope and pray that your families have been safe during this time. We know how crazy things are. We love all of you and are so grateful for you.
In life there are so many seasons. There are seasons of plenty, happiness, growth, prosperity, and then there are other seasons of need, worry, stress, and sadness. It's amazing how quickly the seasons in your life can change. And the length of them are always different. There are times that seen like they last forever, and other times they feel like they are changed overnight.
First off let me say that the girls have been doing so good. They are growing, gaining weight, and working so hard on all their skills. They love pre-school and therapy. We just started aquatic therapy back up for the next 8 weeks which they LOVE. Abby is crawling all over the place and starting to finally give Erin a run for her money. And Erin has learned how to crawl up stairs and is just one let go away from taking her first step. They really are amazing little girls!
I've been very transparent on this blog about my struggles, hopes, sorrows, and joys when it comes to the journey with the girls. There are many seasons. Some people don't think I should be so transparent but I have been told several times lately, that if you aren't honest no one can help.
Things have been very tough lately.
When Riley and I found out we were expecting conjoined twins it turned our world upside down. We knew in that moment that things were never going to be the way we envisioned them. We never thought that we would have to spend a year and a half apart. Dealing with some of the most difficult moments of our lives while being over 700 miles apart. The stress, anxiety, depression, and much more has followed us through this.
(I have talked to Riley before blogging this) We both have struggled in different ways with all of this. Riley a little more than me. I have different outlets (this being one), I have the girls therapists and doctors always looking out for me making sure that I am doing alright. Riley doesn't have that. He has struggled in silence for a long time. He has finally decided enough is enough and it is time to work on things.
But working on things comes with a cost. To get to the point where you are ready to work on things, means that things weren't good. Things were bad, and got to the point where Riley couldn't work because of his mental health issues and his workplace wasn't a good place for him to be with these issues. So right now Riley has been out of work for a few weeks, and before that he was barely working, which means our finances are beyond tight. Luckily we have a wonderful family who have been bending over backwards trying to help us the best they can. Because of this financial strain we are also in a bit of a bind when it comes to vehicles. My van is wayyyy overdue on inspection because of the check engine light. And between my dad, and two mechanics, and $1500 we are hoping that it is fixed and I should be able to to have it back tomorrow. But it hasn't been working since before Christmas so we have been borrowing my moms minivan. Rileys car had died back in the early fall. We had planned on getting him a new car, but as finances were tanking and things were getting worse, we never got the chance. So I was dropping Riley off and picking him up from work (which is a half hour away). So things have been tough but that doesn't mean good can come out of it...
Because of all the struggle and hard times, Riley is getting the help he needs. He is doing better, and he is dealing with a lot of the things that have been holding him back. So many times I have heard that statistics about parents with special needs children getting divorced. We are very proud to say that is not in the cards for us. It's a lot of work, but we are making it work. We help each other and encourage each other through these incredibly hard times. We also are pretty sure that Riley has a new job opportunity that will be really good for him. Doing something he enjoys doing and that he will make a decent income with. We are still waiting on some logistics to make sure he can get the job, but it is almost a definite.
I feel like a lot of times dads get left in the shadows when things happen with the kids. It's not of their doing it is just that a lot of focus goes to mom and the kids because the mom is the one with the kids 24/7 but that doesn't mean the dad isn't struggling. Not being able to be with your child for therapy, doctors, and trips to doctors (aka traveling to Philly for important appointments) can really take a toll. And being the dad is soooo important. I have learned a lot in the past few months about how Riley has seen things and how the struggles of special needs parenting has affected him. It's scary what can happen if you aren't paying attention. But Riley (and myself) is getting professional help now and it's definitely helping. It's been a lot to deal with and some days are better than others, but we know God is working.
Another good thing that has come out of this is me starting my little side hustle. I have started making custom tumblers. It is something I really enjoy and has helped financially even if it is just a little right now. I will post a link within the pictures at the end of the post to check out some of my work. And if you are interested please feel free to send me a message. I'd love to make you a tumbler! They are fully customizable, and I can do a lot of different things with it. If you can think it, I will find a way to make it! We named it ENTWINED DELANEY DESIGNS in honor of the girls.
All in all things could be worse, there is always someone who has it worse than you. But things could definitely be better. I know we are always asking for prayers, but this time we really need some specific ones.
So I am going to end this blog with some specific prayer requests in lieu of being transparent....
- We need our finances to get figured out. We are not sure how God's going to do it but we know he will. It's such a scary place to be in.
-We need Riley to have a good job. We are praying and claiming that this job opportunity that has presented itself will pan out and that it will happen sooner rather than later.
-We need transportation. With my car being illegal at the moment and not having the money to get it fully on the road we are in a tough spot. With this new job for Riley we need a way to get him there. And even when my car is fixed and on the road, we don't have the ability to have him take the car to work because the girls have so much therapy and appointments that we literally have something going on every day for them and we don't want to have to change that because of not having a vehicle.
-We need things to work out for the girls to get a medical stroller. Unfortunately with the stress lately I haven't been on my A game, and I backed over the girls' wagon and bent the one wheel pretty badly. Riley was able to bend it back enough that it is still usable, but not 100%. And not only that but the girls are getting taller and now can kick each other even when they are buckled in. It's hard because they fit, but they don't understand. Same with the strollers, they fit, but they don't understand to not try and reach the wheels, or to keep their feet up. So we are working hard to figure out a solution.
-We need health in our house. Last night Erin came down with a nasty fever that has been with her ever since. She is ok when the Motrin is well in her system, but as soon as it wears, she is miserable again.
-For Riley that he will able to keep getting better. That he will see how important and and loved he is.
It has been a whirlwind since we came back from Philly. We got home a little less than a week before thanksgiving and now we are in full blown Christmas mode. But I am finally able to write about the trip to Philly.
Our first few days we had developmental appointments, which I wrote about in the previous post. We have thought and processed the diagnosis of Intellectually disabled and are taking it with a grain of salt. There aren't many doctors who take care of separated craniopagus twins. And even the ones that do know how different each and every case is. There is no one to compare them to. So we are just going to keep doing what we are doing. We are helping the girls shoot for the stars and loving them along the way. We are so proud of them and wouldn't change who they are. It was a diagnosis that kind of hit us out of left field but that seems to be the way things go with the girls.
After that appointment we had a few free days where I was able to see my best friend. It was so nice to take the girls to the aquarium (thanks the the Ronald McDonald House) and enjoy time with an amazing friend. We all miss "aunt" Jill and can't wait to see her again. But it did my heart good to be able to see her and have a fun day. My mom and I also took the girls to the Academy of natural sciences one day (again thanks to the Ronald McDonald House). It was nice to have those few days.
During those few days the girls ended up getting colds which made things with their impending CT scans a little tricky. We were originally going to get them done with just sedation and not need to have them go under anesthesia, but with their coughs and runny noses, they decided they'd rather them go under anesthesia to be on the safe side. But asked if we could come by and have them evaluated in person to be sure. When they were evaluated they gave me the option to give them a little bit of "giggle juice" and see if we could get the CT scans that way without all of the crazy of Anesthesia. I agreed and amazingly we got it done. Erin was great for hers, but Abby on the other hand needed a double dose and had to be swaddled and have a dvd player in front of her to get her to stay still for the 10 seconds it takes to get the scan done, BUT we got it done!!! Thank the Lord because I didn't want to have to go through it all again the next day but have to have them get anesthesia.
We also saw the girls neurologist who was very pleased with the girls progress. They are both fully off of all seizure medications!!! And neither one has had any indications of seizures since coming off. The only thing that has happened is that they have become brighter and reached some new milestones. We are hoping and praying it continues that way. The plan is to get the girls an EEG done in about six months at our next follow up just to make sure there is really no seizure activity going on. And then the next time they have to undergo anesthesia get an MRI done to see how things have been healing and get a good picture of what is really going on in their cute little heads.
We then went and saw the girls General surgeon who put their G-tubes in and helped a lot with the girls' reflux. We also see the girls nutritionist at that appointment. I was worried about this appointment because at the last one the girls hadn't gained any weight. So obviously I would be nervous about the girls gaining weight at this list as well. But we have been working very hard annnnnnnnnd Erin gain an entire kilo in 6 months (2.2lbs!) and Abby also gained weight (but not as much as Erin although that's fine because she has been heavier than Erin for a while now). They said for the first time the girls are almost on the exact same spot on the growth chart!! We were thrilled and they told me to not change a thing and keep doing what we have been doing. They also were encouraged to hear that Erin has been eating. We are getting ready to start keeping track of what she is eating during the day to see how many calories she is starting to take in. We aren't able to ease up on the blenderized feeds but that is what we are working towards! Abby is also very interested in food and likes to munch on things, but she doesn't seem to actually eat very much. She is getting there and will be catching up to Erin in no time.
And last but most definitely not least we saw the girls' plastic and neurosurgeons. They both were so excited to see the girls. We see them at the same appointment. We finally have plans for the girls reconstructive surgery. It will most likely take place around May of 2021, but we will be up there in March till surgery because the girls will each need a skin expander placed. This will allow the skin to stretch (again) but this time it will be to help fix their hairlines and get rid of all the bald spots that they have. This was a decision we made because we know when the girls are 15 they will be have we had all that fixed for them and not having to worry about it then. So altogether we are looking at being in Philly for around 4 months. Most of that time will be outpatient since they don't need to be inpatient to get the expanders filled. But we don't want to go home with skin expanders in fear of something happening and being too far away. So we will be at the Ronald McDonald house (fingers crossed). We are going to see if we can work out having the girls get therapy while we are up there as well as to not regress in all the progress we have made. That will most likely be a battle with insurance but we are going to work hard to get it!
So all in all our Philly trip went well. Unfortunately the girls came home with colds and rashes. But the colds have now gone and we are just dealing with the rash on their bellies ( which I have started to get now go figure) so pray that it all goes away. We will most likely all be headed to the doctors on Monday.
We are also in full holiday mode. We are ready to do all the fun light events, bake cookies, and sing Christmas music all day long. If you think of it say a little prayer for me. The holidays are always a little bitter sweet for me. Mind you I know you all know but I love my girls and wouldn't change a thing about them. But it's hard shopping for the same age toys that we have been shopping for, for the past 3 years. I can't wait for the year that they start to understand Santa and Christmas and all the joy that comes with it, but this year isn't that year. They love the lights and know everyone is happy, but I know they don't understand it. Christmas is my absolute favorite holiday and I have dreamed of having my own kids run out of their bedrooms Christmas morning and tear into their presents. Hopefully next year we are closer to that. But its bitter sweet knowing that if they were typical they would really be understanding Christmas and Santa this year. We will still enjoy the holidays and all the joy and love that comes with it. And we will pray and hope that each year the girls understand a little more.
We are so grateful for each and every one of you who prays for us and encourages us. It means the world to us! And a big thank you to those who send us wishlist items. They are helping a lot with Christmas for the girls. It takes a lot of pressure off us financially that you all help as much as you do. We are very blessed and humbled by it!
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.
I can't believe we are already into November. Where does the time go! Before we know it we will be through Thanksgiving and onto Christmas (which is my favorite holiday).
We are all doing well here in the Delaney house. The girls keep growing. They finally seem to be gaining weight at least a little bit. I am hoping that it keeps that trend since it's been such a battle. Abby crawled for the first time a couple weeks ago. Just a couple strides but even so we count it as her first crawl. She's been doing it fairly often and we only hope she gets better and better at it! She has also been pulling up to her tall knees and trying to grab things off the ottoman which is a new skill as well! Erin is still walking along all the furniture and her play yard. She actually walked pretty far in her gait trainer the other day at therapy. The furthest she has ever gone in the gait trainer without help! We were all pretty excited. She for some reason is taking a little while to figure out how the gait trainer works. It's hard because we know she can do it because she walks along all the furniture all the time. But we know she will eventually get it and be cruising in no time. *edit* So I wrote all this, this morning and this afternoon at therapy Erin took off!! She walked all over the therapy building, up and down hallways, through the waiting room, and did laps in the gym! Everyone was so excited and almost in tears! I will be posting a video soon!!!
In other news we leave for Philly on Saturday. My mom is coming with me to help out since Riley will be home working. We are always excited to see everyone and show everyone how the girls are doing, but we don't look forward to the long drive. As the girls get older the drive gets a little harder each time. And recently Erin has been getting antsy in the car if we are in it longer than an hour or so. So I am a little nervous but hopefully she hangs in there. We will be bringing lots of toys and movies to keep her occupied.
As always please say a prayer that we get into the Ronald McDonald house. We have gotten in every time thus far but there is always a chance that they are full. If they are full I am not sure what we will do since hotels in the area are more expensive than we can afford. It's always nerve wracking waiting to hear if they have a room for so we just keep praying they do!
Also if you could say a prayer for our car situations. We aren't going to be taking our car to Philly this time. My mom has graciously offered to take hers. My car as of recently has cost a crazy amount of money to get fixed, and it still has the check engine light on. We didn't know that the car would have all of these issues and that the restricted title would cause us lots of hassles when it came to recall type stuff that we have now had to pay out of pocket when the company was supposed to cover the costs. My dad has been working tirelessly on my car (thank the Lord because it's been in the shop 4 times and cost a ton of money) but it still has some issues. So since my car is past inspection, and not able to be inspected before we leave, we aren't taking it. We also are down to one care. Riley no longer has a car since his died and was going to be too much to fix for its age. So we are trying to figure out what to do to get him a car since we weren't planning on getting any new cars for a while. It's pretty much a disaster at the moment so please pray that things smooth out and we are able to get all the issues with my car fixed, and are able to get another vehicle somehow.
In a totally new topic, I've been thinking a lot about self care. It is something I see a lot of articles about as i scroll through my special needs parents face book pages. They all say that if you don't practice self care that you won't be able to keep caring for your children because you will burn out. I can see this point of view, I really can, but from my point of view sometimes self care is just really hard. By the end of the day I don't want to go for a walk, or read a book. I was to binge watch Netflix and eat snacks and fall asleep. But recently I have been realizing that I need to fix some things.
I have never been the skinnies girl. Even as a teenager I struggled with my weight. It's just always been an issue. When I was pregnant with the girls I actually lost 12lbs in my first trimester because I was eating healthy. I was really healthy throughout my pregnancy and after I had the girls I weighed less than I did when I first got pregnant. Then enter stress eating. While the girls were in the hospital the one thing that made me feel happy and relaxed was eating. Especially at the Ronald McDonald house. They always had delicious comfort food, and lots of snacks and desserts, that combined with eating greasy food from the hospital cafeteria every day I gained a lot of weight. Unfortunately those habits followed me home and I am paying the price for it. I weigh more than I have ever weighed in my entire life and I hate it.
So after talking with my husband and some other family members I decided to do something for myself. I joined weight watchers. It has been so hard, but I finally feel like I am doing something for myself. This is something I have control over. I don't have to eat when I'm stressed, or happy. I can take those emotions for what they are and move on. I realized I haven't really done much for myself since the girls came. Life has been about making sure they had an advocate in the hospital, making sure they're getting everything they need at home, and making sure they are happy and healthy. It's been a huge priority. Thats basically our life, making sure the girls' are good. But now that they are doing well and we are on a good path, it is time to do something for myself. In the past two weeks I have lost just shy of 10lbs! It's not much but it is a huge deal for me since I haven't done anything but gain since the girls were born. This is something that will not only benefit me, but my whole family. I realized how tired I always was and how burnt out I was feeling. And even though this is hard it is so rewarding. I want you to know that you can do it too. Whatever it is that you have been wanting to do for yourself do it. You won't regret it!
Sometimes what we need is parents is to focus on ourselves once in a while and it gives you a renewed self. It's hard having children with specials needs. It takes up your entire life. You can't live like a typical family and the days can get really dark and hard if you aren't careful. So take a few minutes, I know you're tired, I still am tired, but i promise you'll be happier.
We love you all so much and are so grateful for your encouragement and love! We love the Delaney twins family! It's such an encouragement to see comments, and receive cards, and messages. We wouldn't be able to do this on our own! They say it takes a village, but we have a village that spans the world!!!
It's finally beginning to look like fall here in the south. The heat is still here, unfortunately, but the leaves are starting to fall and the days are getting shorter. It's amazing to think that in about 2 months we will have been home for 2 years. It's amazing how much has changed and how much is still changing and has yet to change.
Grief is a funny thing...I always used to think that people only experienced grief when they lost someone. (very naive I know). It wasn't until Riley and I had the girls that I learned what grief really is.
I was very lucky growing up and never really had to experience real grief. Granted I lost my one grandfather at a young age, but was too young to really understand grief. Now I experience waves of grief just as anyone who has lost someone important to them. It's these waves that seem to wash over you.
Don't get me wrong here, loosing someone is very different than having children with medical complexities, and I don't want to make it seem like these two are similar because they aren't. But the way grief works is the same.
Ever since we found out about the girls Riley and I have had to grieve. We grieve the life that we had dreamed about when we got married. Most young couples dream of having a family when they get married. They can envision their kids running around the back yard, splashing in the tub, and opening presents Christmas morning. You have this whole life built up in your head of what life could be. But with Riley and I our dreams changed. They changed in an instant. The second we saw the girls on the ultrasound monitor with both knew that the life we were living was going to be very different than the life that we had envisioned.
So why am I bringing this up. Why when the girls are 3 years old am I bringing this up. Well today my mom had offered to watch the girls for the day so that we could have a little break since Erin has been having some issues with puking at night and we haven't been sleeping well. So I dropped them off with her and went out for a little while by myself since I don't get to do that very often. It was so nice to go from store to store and not have to lug everything and everyone in and out of the car over and over again. I went to party city to get some things for my sisters bridal shower that was coming up. I was having a nice time and my spirits were up and I was just enjoying a little freedom from mom-hood for the afternoon. While I was waiting in line, there was a woman who was checking out and she had her daughter with her. She was bopping around, asking questions, and trying to get her mom candy. I smiled as I watched her little happy self enjoying life. The mom was talking with the cashier as she was being checked out when she was asked how old her daughter was. She then asked her daughter "how old are you" to which she replied "3".
In that moment my heart sunk and my throat tightened and I could feel tears welling up in my eyes. I had to remind myself where I was and that people were going to think I was a little crazy for randomly getting sad in party city. But I realized what typical 3 looks like. It's a mini teenage basically. Speaking full sentences, listening, understanding, potty trained, basically a kid. 3 seems to be the end of toddlerhood. In the back of my head I know this. I know what 3 looks like. But for some reason it hit me funny as I watched this happy little girl. I know our girls are happy. I know they aren't a typical 3 year old, but they don't know any different. They just know what they know and live life the way they see it. But Riley and myself live a little differently. We live with knowing what could have been. Knowing what the girls are missing out on, even what we are missing out on. The girls are always progressing, but it's slow. Developmentally they aren't even 1 year olds yet, even though they are in 2t clothes and 3 years old.
All this come back to the fact that grief if a funny thing. Some days I don't even think about the fact that the girls are different. I don't think about the things we are missing out on or the things that are different for our family. I don't think about the struggles we face as a family from being away from each other so long and all the financial stresses we are under from having a few years struggle. But then there are days when the grief comes back. Where I wonder what life would have looked like if the girls hadn't been conjoined. What if they had been born like typical twins. Our babies would be kids right now. It's a tough pill to swallow.
After a little while the grief of this afternoon wore off. Riley and I went out for dinner to have a little date since we haven't done that in a little while. We were able to go to a nice restaurant and be just the two of us for a little bit. And then we got a phone call from my mom that Erin was sick and throwing up and acting really lethargic. Instantly medical mom turned back on and we got the check quickly and left. It wasn't till I put her to bed and sat down in the quiet living room that the grief I had felt earlier in the day came screaming back. If Erin was "typical" throwing up and acting lethargic wouldn't be a cause for alarm. But since she has a g-tube and can possibly have seizures etc it causes alarms to go off in my head. She's also been acting a little funny the past few days which just has me on high alert as well. Nothing I can really pinpoint, but a mama just knows these things. If all these "other" things weren't at play the night may have gone a little differently (at no fault of my parents either, Erin needed to go home). But even so it's that grief that seems to creep in when you least expect it.
I know all my other medical mom friends feel it too. It seems to crush you when you least expect it. Like getting the wind knocked out of you and you can't breathe. There is a part of you that wishes you could run away from it all. Run away from the doctor appointments, the therapy appointments, the always trying to get them to gain weight, the anxiety, the worry, the am I doing everything I can for them. You just wish that sometimes your life was "typical". That your kids were "typical". And the weirdest thing about this type of grief is that you wouldn't change it. You wouldn't change your child for anything. The milestones mean so much more, the smiles mean so much more, even the middle of the night snuggles mean more. It's the repetitive cycle that just seems to happen over and over and over again. It's hard to not feel guilty when you feel this grief either because you never want your child to think you wanted them to be anyone other than who they are. It's just that you seem to grieve for your child and for the things that they don't understand or realize.
So all this to say, today was one of those knock the wind out of you kind of days for me. The funny thing is that no one knows it either. And again I know my medical mom friends are the same way. We feel this incredible grief, but don't show it. We put on our brave face and push through because our kids are worth it, the grief is worth it. We push forward and know tomorrow is another day with new triumphs to be had.
Also please know how grateful we are to those who have sent wishlist items and donated to our gofund me. Words cannot describe how grateful we are for those things. They brighten our day and take some of the stress off. The amount of love and prayers that you all show us is incredible. We are so so grateful.
I am so sorry that I haven't been able to update everyone lately. Life has been crazy. Between going to Philly, coming back, the girls getting sick again, and then moving its a constant whirlwind of activity. So here we go..the most recent update!!
Philly was, as always, wonderful. We ended up seeing our neurologist, plastic surgeon, neurosurgeon, general surgeon, nutritionist, and the feeding clinic. We also were able to attend the fetal reunion which was so nice!
The fetal reunion is held at CHOP every year for families who have had children in the Special delivery unit at CHOP and used the center for fetal diagnosis and treatment. It's an incredibly special day because everyone around you has gone through those gut wrenching emotions when you find out something is wrong with your unborn child. It's emotional to watch the slideshow they do every year, where you get to see all these amazing smiling faces. Perfect little miracles who all were helped by these amazing doctors and nurses and staff at CHOP. I got to meet people that I have only met on Facebook which is always fun. I got to hang out with two other families of conjoined twins and see how well they're all doing (one of which is in college to become a surgeon...just saying!!) It's those types of days that you need to have once in a while. A day filled with encouragement and hope. Where you can see "look they did it" and realize "my kids can do it too". We also got to see and hug some very special people who were around when I gave birth to the girls. The nurses who cared for me while I was on bedrest and in labor with the girls. The doctor who actually delivered the girls was also there. It really was so special to see them all and have them see how well the girls are doing!
We also were able to stay are the Philadelphia Ronald McDonald House. When I first started my stay at the PRMH I was an emotional wreck. I had just had a c-section, I wasn't able to be with my babies all the time, and I was trying to figure out how to be a mom. It was a place that I didn't want to have to be in. But after a little while I grew to absolutely love that place. It was truly my home. I made friends with staff and volunteers, and the other families I met while I was there are now friends that I will have for the rest of my life. One special thing that happened while I was staying there was that they broke ground for a new wing. They had plans to build an incredible 8 story building off of the main house that could house many more families who had children in the hospital. When it happened I remember thinking "wow won't it be so cool to be able to come back here when everything is done and have the girls with us to enjoy it". It was almost a dream. Well this past visit my dream came true. We were able to stay in the new and improved PRMH. And let me tell you, if you have ever donated the The Ronald McDonald house charities....THANK YOU! This building is incredible. Everything is state of the art and made so that you have the most comfortable stay you can have. Each room is more like a suite that almost feels like an apartment. And somehow even with all the space and new things it still feels like home. It is still one of the most welcoming places I have ever been. Where the smiles that greet you give you hope for your children. The staff and volunteers that work there are inspirations because I can tell you, parents of medically complex children are not always easy, we can be pretty darn tough to deal with sometimes. But they have always been so incredibly accommodating and do whatever they can in their power to get you what you need so that you can care for your child the best that you can. It really is the only other place like home!!!
We had lots of good news during this past trip. We saw our neurologist who was so happy with the recent gains the girls have made that he decided to start weaning the girls off their seizure medications!! The girls just this past week totally came off their topamax!!! Which for one is amazing because it was expensive every month, but for two has just made them so much brighter!!! If anyone has been on any type of seizure medication you can attest to the fact that most times when you start it, it makes you very drowsy and sleepy and you need to let your body get used to it to be able to function again. These little girls were basically snowed out cold from their seizure meds for a good week when they were first started on these medications. So now as we are coming off them it just seems like the light in them is so much brighter. Erin is on a new level. That little girl gets into EVERYTHING! She is also pulling up to standing now and because of that she is really into everything. And she is fast, like super speed when it comes to crawling. So she just seems to be blooming before our very eyes and I really think it is because of the weaning off of her seizure medications. This was the only one left for her so now that she is seizure medication free I feel like her little brain is free to make so many new connections and we are loving watching it happen! And Abby is also seeming so much brighter. Her cognitive skills seems to have changed over night. She has always been such a sweet and sassy little girl but she is also so sensitive now. She gets so happy and giggly and smily, but when someone is upset or tells her or Erin no she is so sad. It's so sweet to see her understanding these emotions when she didn't show them as much before. She also has been reaching to be picked up more and is scooting herself around and sitting up and exploring in her own little way and it's just such a miracle! Abby has one more seizure medication to be weaned off of but we will hopefully be doing that as soon as she has been off this one for a little bit. We need to give her body a little time to adjust before changing it up again. But weaning off medications has been such and answer to prayer. We didn't know if these medications were something that the girls were going to have to be on for the rest of there lives, but just two years after surgery and they are already barely on any medications anymore! God is good!!
We also got to see our different surgeons who were, as always, amazed to see all the progress these little girls are making. We love seeing them and being able to show off the girls to them. They were the ones that gave the girls are real chance at life. A chance beyond basically living in a bed because of the way they were conjoined. They didn't just save the girls lives, they saved their lifetimes and we are so so grateful to all they have done for our family. We talked about the future and what their plans are moving forward with the girls regarding reconstructive surgeries and things of that nature. We decided to wait a bit longer before anything is done. They're doing so well right now that they don't feel the need to work on anything at this moment in time. (which is a relief for this mama who is not ready for her babies to be back in the hospital for a while).
We saw our general surgeon and nutritionist as well. This was an important appointment because the girls have not been gaining weight as well as everyone would like. The have been getting sick so often that every time they gain any bit of weight they get sick and loose it. Being g-tube kids, they are a lot more apt to throwing up when they are sick, even if it is just a cold. Meaning they get a lot of fluid when they are sick but not many good calories, therefore having them loose weight. It's a constant battle to keep them healthy and keep weight on them. So we tweaked some things and are working hard on getting some weight on these monkeys who never stop moving. So please keep that in your prayers. Its a tough spot to be in because most people when their kids don't gain weight are worried about having to get a feeding tube, but we already have a feeding tube and can't seem to gain weight so its a little more serious in our case. So hopefully the girls start gaining lots of weight and stay healthy over the summer!
Then we had our feeding clinic evaluation. This appointment was a little different than the others in which I kinda felt like a failure. First off the girls weren't accepted to the program. We were told that they have the skills needed to eat and that it is because I am not working enough with them so they are not using those skills. That its more of a behavioral issue than anything else. This was a huge blow because it is the one thing that I struggle with when it comes to the girls. I worry a lot about their eating. And to hear those things (which are very contradictory to our therapists takes) was tough. But we take everything with a grain of salt and keep doing what we believe is best for our children. And that is all I will say about that. Needless to say it wasn't a great appointment.
Now since we have been home things have been crazy. Abby got sick and ended up in the ER for what turned out to be a sunburn that we didn't realize she got. (two random square shapes on her back that must have gotten sun while at the pool). She came down with a high fever and when we stripped her down we noticed what we thought was some weird rash or something. So we took her to urgent care (it was a weekend of course). Urgent care had no idea what was going on and because of her medical history sent us to the Emergency room. Only to be told the fever and marks on her back weren't related. So after much deliberation we figured it had to be a sunburn from being at the pool. Since then her fever went away a few days later, and her sunburn is now two little tan patches on her back. Needless to say we are way more careful with making sure that every inch of the girls has lotion when we are out in the sun. (we weren't used to two piece bathing suits....lesson learned)
Then after Abby got better we ran into a house near my parents that was up for rent. I really believe it was a God thing because it almost just fell into our laps. My sister noticed the sign, and her and my mom called. It just so happened the realtor was at the house and told them they could come over that afternoon. They called me and I reluctantly went because I didn't think there was a way that we could move. But I went and fell in love with the house. Hard wood floors in the living areas, fluffy carpet in the bedrooms, a beautiful kitchen, fenced in back yard, and 1600sq ft! I was blown away by how perfect it was. And did I mention it is also a ranch! While walking around my parents were talking with the realtor and talking about the girls and telling him a bit of our story. The girls just melted his heart and the next day I got the phone call that we were the family they wanted to rent the house out to. To put the cherry on top, the rent is cheaper than what we were paying month to month at our town home!!! I'm telling y'all, I was feeling so defeated when it came to moving. I didn't think it was every going to happen, but it did AND without tax returns (that's a whole other issue....ugh). God always has his timing for everything and this was a perfect example of that. So we just moved into our new home just a few days ago. And we are loving it. The girls get to use their gait trainers now and work on their walking (which they couldn't do in our town home). We have more space, and extra bedroom, and finally feel like we can breathe a bit since we aren't so cramped. And as I said earlier in this post...God is good!!!
We have also decided that we are going to have the girls start preschool in the fall! This won't take away any therapy time since they'll have two days a week that they won't have therapy (since they are aging out of early intervention). So it works out perfectly that on the days they don't have therapy they get to go to preschool for a couple hours. We really think that have that time spent with other children their age will help their speech. Their talking seems to have been on the back burner so we are praying that being around a bunch of other kids will help the start to talk. We are excited and nervous all at the same time. But the school is wonderful and so are the teachers and staff. Our IEP meeting went great and everyone was encouraging and kind and you could tell they really wanted to girls to be there and really thought it would be good for them.
Thank you all for the prayers and encouragement you always send our way! We couldn't do this journey without all those who truly support us. I was just thinking about it the other day that it is amazing how many wonderful strangers are out there. It is amazing how people who have never even met us can be so kind and encouraging. We are so blessed to have you all follow our family and watch our girls grow with us. They truly are a miracle that unfolds each and every day!!
By the way....can y'all believe the girls will be THREE this month!!!! When did that happen!?!?!?!?
I've always knew I wanted to be a mom. Even when I was a little girl my favorite thing to do was play with my dolls. But man I had no idea the amount of mental fortitude it would take actually being a mom.
The Friday before mothers day the girls were acting a little funny. Abby was cranky and clingy and I thought she might be getting sick. Then on Saturday they seemed to be pretty normal so we went about our Mother's Day plans on Sunday. Well towards the second half of the day they both became super cranky (Erin more than abby) and very clingy. By Sunday night Erin had a 103 fever and was completely miserable. Fast forward a week and a day and that brings us to today. Abby is stuffy and cranky and will get a slight fever every now and again. Erin on the other hand is very stuffy, runny, and has a nasty nasty cough. She also keeps running a decent fever every now and then, and you can tell when the fever comes back. Her eyes get dark rings around them, she gets really upset and tired, her nose starts running, and her cough gets pretty constant. It's been exhausting dealing with this for over a week now. We went to the doctor for a second time yesterday and ended up getting some chest X-rays for Erin just to be safe. Her cough has been the main worry for me. She doesn't sleep well and our nights are spent in steamy bathrooms or next to the nebulizer. So we thought the X-ray was a good idea. It came back clear which is good news, but not good news in that there isn't something to "treat". The doctor thinks that she has adenovirus which seems to be making the rounds right now. Adenovirus is a common viruses that infects the lining of your eyes, airways and lungs, intestines, urinary tract, and nervous system. They're common causes of fever, coughs, sore throats, diarrhea, and pink eye. Which makes a lot of sense since I was wondering why their eyes have been kind goopy, not pink eye goopy but more watery and crusty than usual. So unfortunately it is just a waiting game till everything gets better.
This is one of the worst things because you cannot do anything to help them except Tylenol and cuddles, and they're still miserable most of the time. Erin wants to be held almost 100% of the time. And it isn't just being held, it's like holding a restless worm that wants to burrow into you haha. She is a super snuggler and just wants to snuggle as hard as she can. I know it is so hard on them (especially Erin who seems to have it much worse) but the emotional exhaustion I feel is crazy. I have felt this way with other sicknesses they get but this has been the longest sickness they've had thus far, and the most sleepless. So besides just being tired, I'm just drained. But being a mom gives you super strength. The love you feel for your children seems to somehow propel you through any type of exhaustion you might feel. Don't get me wrong, yes we need breaks, yes we need time away from the kiddos, and need to make sure we are taking care of ourselves, but that mama love seems to give you strength to get through. There are moments where I feel like I'm falling apart and I just sit down, take a breath, and then get back to it.
Please please please pray for these little munchkins. They are exhausted and we just want them to be better and happy. We have missed almost two weeks of therapy because of this and we are so ready to get back to our normal routine and get some good sleep again. Also pray for Riley since he isn't feeling well. I wasn't feeling great for a few days but am basically back to normal, but Riley seems to have gotten this pretty nasty virus now as well.
In other news we are still trying to move. This is like the never ending saga. Still waiting on the tax returns which seem to like to never come. But hopefully we will get it within the next few weeks and be able to move to a place that has more space and and make it easier for the girls to use their equipment.
We head to Philly in a little over a week for all of the girls follow up appointments. We are hoping again to stay at the Ronald McDonald house and be able to see some friends at CHOP. It's a long trip but its so worth it for the amount of care we get from them. Next time I write I should have some nice updated information about how well the girls are doing. We are excited since we haven't seen our CHOP doctors in 6 months!
We so appreciate each one of you who follows our journey! I love when I am out and about and I run into people who follow us on facebook and read the blog. I love hearing how the girls have inspired you. A lot of how well they are doing has to do with all of you. The well wishes, wishlist items, gofundme donations, and letters really help Riley and I be better parents. It encourages us to keep moving forward . It humbles us knowing how many good people are out there and lets us teach that to our girls as they grow. To grow up knowing you have people all around the globe in your corner will be incredible for them! You guys are seriously awesome and we can't thank you enough. You've been an answer to prayers. There have been days where I was sitting on the couch crying because a certain bill is hard to get paid, and then a go fund me comes in, or we are trying to figure out which diapers were the cheapest because we were running low, and we would receive a few pack the next day and some every month! I wish I could express how grateful we are to each one of you. Please know we deeply mean it when we say thank you. And especially thank you for the prayers......"where two or more are gathered".....and we have people all over the word gathered who pray for our family, and I truly believe it's made all the difference. We love you all!!!
My 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!