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 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!
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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!!! |
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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