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
It's taken me a minute to process a lot of what is going to be happening in the next coming months. Change is always so scary even when it is something you knew was going to be coming.
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COVID has once again changed our plans this year.
This year has been such a rollercoaster when it comes to COVID. From quarantine and tele-health to now wearing masks and always having to social distance. One of the many things that changed because of COVID is also our Philly trips. We usually head up to Philly every 6 months or so. This year we had missed out regular six month appointments that were back in June. We didn't want to travel and go into a city, let alone a hospital and chance the girls getting sick because of it. Since they have been healthy and progressing we weren't very worried about missing it. (side not we had a dr appointment today and the girls' health is great! They have gained plenty of weight in the last year and have progressed nicely in new milestones. Erin is walking very well and working on walking up stairs, and Abby is taking steps with a walker! everyone is very happy!) But now that we are coming up on a year we have made the decision that we need to go. We have been talking about the girls having reconstructive surgery in the next coming months and so to be sure that they are ready we decided we need to see their doctors and surgeons in person. So we have our dates planned for the week before thanksgiving. My mom and I will be traveling up to Philly while Riley stays home and works. We usually go up and stay at the Ronald Mcdonald House when we have several days of appointments. Because of COVID they have some new policies. One if which is that if you are staying under a certain amount of nights they are not allowing you to stay. While we fully understand that they are trying to limit foot traffic and protect those who are dealing with difficult health issues it puts us in a bit of a tough spot. This was something I didn't think would happen. But as of right now we are not going to be able to stay at the Ronald McDonald House unless their policies change in the next couple weeks. We weren't planning on having this huge expense happen. Especially right before the holidays. Usually when we stay at the Ronald McDonald House we receive free lodging, free food, and a shuttle to and from the hospital so we don't have to pay for parking. Now we are looking at having to pay for 5 nights at hotels, paying for all the food, and paying for parking. If we didn't have to go we wouldn't but the girls deserve to have the best care especially when it comes to planning and talking about upcoming surgeries. On top of the things I have listed I also blend the girls feeds which will be a bit tougher when staying in a hotel. I am going to have to try and travel with most of the things that we blend on a normal basis since we won't have a kitchen like we did at the Ronald McDonald House. We will have much less space, and will have to have the girls sleeping basically right next to us...which is tough when they are in bed quite a few hours earlier than my mom and I are. The whole thing is just more of a hassle. It's frustrating when you have a child(ren) with special needs and their medical needs cost you more than you anticipate. It's not like it is something you can "budget" for. Everything in me wishes I could have a 5 day vacation with my family rather than spending all that money to go to Doctor visits (not that we have a vacation planned, but we could have). This also will eat up our Christmas budget. Life is not the easiest living paycheck to paycheck, but we make it work and when we can save a little here and there to try and "prepare" for things we know are going to cost we do. But life is crazy and COVID likes to throw us curveball after curveball. Pray for us and we try and figure out how we are going to swing this. Even with discounts from the hotels we are still looking at at least $100 per night and thats not including food, parking, or gas. We are so grateful that the girls' insurance covers out of state doctors visits.....we just wish things like this could get covered. We so appreciate all of the prayers and support we receive from our Delaney Twins Family. We wouldn't have been able to do a lot of what we have done without you all. It brings me to tears when I think of all the kindness and love that our family has been shown. We will keep y'all updated on how everything goes in Philly and what our plans look like. We hope you all had a fun and safe halloween and we hop and pray that you have a wonderful thanksgiving. Even when things are tough we know we have so incredibly much to be thankful for!!! ,I can't believe we are already in October! It is crazy how fast time flies!! And with COVID even though the days are long it feels like the year is flying by.
We were able to move in the beginning of August and we love our new home. It is a little bigger than our last home and it lighter and brighter as well. Also a huge plus is that the girls have their own play room which makes it so much easier to keep the rest of the house. The commute for Riley to get to work is a little longer than he really wanted but it isn't bad. He is getting used to his new job and is doing well. We have had a couple COVID scares since we moved. We all had gotten sick and all had to get tested to make sure it was just a cold. But because tests take a while Riley was out of work for almost two weeks. His first test came back inconclusive....such a pain. But they were all negative. And then we found out that the girls had been exposed to someone with COVID last week and we had to get them tested yet again and wait for the results. Thank the Lord they were negative yet again, but needless to say they are not fans of being tested.....I'm not sure anyone is, it's not fun. The girls are doing well. They are progressing slowly but surely. Erin is getting a good hang on walking. She is a little unsure of different textured floor but after about 5-10 min of playing on and touching the floor she is usually up and running. She walked barefoot in the grass for the first time the other day which was fun to see. Abby is also doing great. She is crawling and trying to pull herself up to stand. She is learning to crawl up short heights and becoming more independent every day. I try to take them to the park every so often now that they are more mobile and they seem to like it and especially since the weather is finally cool enough that you aren't sweating standing in one spot. It's just a lot harder than I anticipated. I took them to the park the other day to try and tire them out before my mom came over to watch them so Riley and I could go out to dinner for our anniversary (5 years woohoo!). It was the first time I have taken them to the park by myself in a long time. The last time I took them Abby wasn't crawling yet and stayed in the stroller and Erin was just learning to crawl so she didn't do much. Now it's a whole different ball game. They go in opposite directions constantly. Which wouldn't be so bad if they understood when I told them not to touch that or to come back etc. It was a lot of being pulled in different directions, and the girls aren't light anymore. Lifting them up back and forth was exhausting. And all they wanted to do was go off of the "play" surface and go eat the grass or wood chips. They also seemed to be really interested in the other kids that were playing there. Erin followed them literally everywhere. But kids don't understand and can be a little mean when they know no one is really listening to them. And granted I understand, they are just kids and don't know better, but every time that Erin came close to them they would say "oh no the baby is here again, hurry we need to leave". It's tough because first off, Erin just wants to play. She likes other kids and wants to be around them, and second, she isn't a baby....she is the same age as these other kids. I think that is what hurts my heart. I know the girls don't understand but My heart hurts knowing that the world doesn't understand them like I wish they could. They aren't "typical" and most likely never will be. I know I have said this before but it one thing to live in a little bubble at home, going through the day to day activities. Everything is "normal" and if I didn't go anywhere their diagnosis wouldn't smack me in the face like is does in these instances. So at one point to help Erin try to climb a few things and give her a little attention I put Abby in the wagon and was helping Erin, and since I am not used to Abby trying to stand up I didn't buckle her (please no mom shaming....I felt awful as it was) and she fell out of the wagon. Granted it was the squishy rubber ground and it didn't hurt her, but she was scared and she screamed her little head off. So not only was I getting looks the whole time because I have "big kids" who are like babies, but I then have one screaming. So after about 40 minutes I gave up, put them in the car, and cried most of the way home. I wasn't crying because of "oh woe is me" but I was crying because I want so badly for the girls to be able to have those fun kid experiences like playing at the playground, and for us it is just a really hard task. I want other kids to accept them and play with them, and meet them at their level, rather than running away from them and calling them babies. (again I know they are kids and they don't understand, but that doesn't make it any easier). Yes, we celebrate even the smallest milestone, and we encourage and love these girls more than anything, but that doesn't mean life isn't hard. Now that the girls are getting older they get frustrated more since they aren't able to talk yet. Erin has a lot of meltdowns. She screams and flails and scratches and bites. Her and Abby are separated 24/7 unless someone is able to sit with them and dedicate all their attention because Erin can hurt Abby. All they want to do is play but since they can't "communicate" there is a lot of frustration that comes in the play. It worries me because I can handle Erin now at 30lbs. I can pick her up and move her, or can hold her back if she's trying to bite or scratch. But if things don't get better I don't know if I will be able to do that as she grows. It's one of my worst fears, to not be able to handle my children. It's different when they are little and act like babies, but as they get older and still act like babies it gets harder. It is something I wasn't anticipating. Don't get me wrong I still have an incredible amount of hope for the girls. Hope that they will walk, talk, eat, and catch up to their peers and have friends. But that doesn't change what the reality is right now, and that is that they are stuck in a body that can't communicate and it makes them (especially Erin) very angry sometimes, and there is not much that I can do to help. We have wonderful therapists who work with the girls 3 out of 5 week days. And then on the other two days my mom and I are working on doing "school" with them since they aren't in pre-k this year because of COVID. But it isn't like I have a child with autism where there is a ton of resources and people to talk to and bounce ideas off of. No one knows how the girls' brains work and what their limitations are going to be. They aren't able to point at pictures and learn sign language (we try and try). We hope and pray eventually things will change but right now it's exhausting and stressful. We try to take them to do fun things and it ends up turning into a chore that is just hard and they don't seem to care. Keep us in your prayers as we navigate these days. We have so much love and hope for these girls and we pray over them all the time the the Lord would make those little brain pathways connect. Pray as we try and figure out the right tools to help them learn and grow and communicate. We don't want them to be frustrated all the time. Pray for us as we are getting ready to plan our next trip to Philly. We skipped on of our normal 6 month follow ups because of COVID but we are getting ready to hopefully have a trip before Christmas to discuss possible surgery in the spring (just typing that makes my stomach hurt, that will be a whole other blog post). We have very much gotten used to being home and living life outside the hospital and the thought of going back and being there for a few months gives me anxiety like you have no idea. We love you all so much and all of your encouragement! Thank you so much to all those who expressed love to us in regards to the girls' story video being taken down on Youtube. It is in part because of all those kind words that they put the video back up. We love that the girls story is able to give others hope and give someone something wholesome and hopeful to watch when there is so much negativity out there. Yes, sometimes the days are hard, but our girls are still living breathing miracles that we are so incredibly grateful for each and every day!! 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! Prayer requests: -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.
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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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