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
Wow, I didn't realize how long it has been since I last wrote a blog post. I have been doing a lot of updating through just normal facebook posts. But I figured it was time to get the blog back up and running!!! It is crazy to think that in 2.5 short months the girls will be turning 6! I don't know where the time has gone. It feels like just yesterday they were itty bitty babies and I was longing for them to be separate and home. If only I could have looked ahead and seen where we are now there would have been much less worrying. The girls are doing really well as of late. Erin has healed great from her most recent surgery. She is finally off all of her antibiotics, we were on them for a very long six weeks. She is happier than she has been in a while and it is so wonderful to see!! I had posted earlier today about Erin walking funny and needing to see the doctor because of it. We went and saw her pediatrician today and she isn't very concerned. There are several things it could be, but for this moment in time since she isn't in any pain and there aren't any other "symptoms" that we can see, we are just going to keep a close eye on her. If she is is doing the same or worse by monday/tuesday we will most likely take her to get an x-ray just to be safe. It is possible since she falls often that she could have what they call a "toddler fracture" where they just crack something. So that will be the first step if she doesn't seem to get better. If we end up getting an x-ray and it comes back with nothing we would then have to think that it may be something neurological....which I don't even want to think about that, that is a whole other can of worms that would have to be opened. But at this moment we are thinking she had a little growth spurt that has made her feel funny and have to regain her footing. I know a lot of people have commented that maybe it is an injury from the trampoline. But Erin won't even walk on our trampoline, and she hasn't learned how to jump on her own yet, so it is very unlikely that it is an injury due to the trampoline I promise we are super careful, and only once in a while Riley or I will go on with them. Most of the time it is Abby hopping around on her knees, and Erin crawling around playing with the balls. We also had her ears checked and they were fine. So it is just a matter of waiting and watching. But she doesn't seem to be in any pain, she is just a little limpy and unsteady at the moment. Abby has been doing fantastic! Just in the past few weeks she learned how to walk in her walker all by herself. She gets set up in her walker and she just takes off. She is still learning how to steer and how to get down from her walker, but as far as walking goes, she is doing amazing. One of these days she will realize she can do it all on her own and just start walking! She is also super engaging lately. She loves to play with you, be held by you, be read to, etc. Where as Erin is more likely to be off playing with her toys. Abby loves to be social and spend time with people, she is 100% our social butterfly. Some new things that are happening/in the works. We have decided to get the girls back into school this coming year. We aren't 100% sure what that will look like yet as we haven't had any IEP meetings or anything of that nature. But we have spoken with the principal of the school and they have it in the back of their minds for this coming year that the girls will be in school. We are excited and nervous, but we know that it will be so good for the girls socially to be around other kids. They will be able to work on communication with their teachers 24/7 and hopefully it will just broaden their horizons and give them a whole new wonderful world to explore. We also have new beds coming for the girls. I know a while back I had posted about beds that we had modified for the girls. They have been wonderful but it is getting harder and harder to get Abby into her bed since she is getting bigger and heavier. So we were able to get special beds through insurance that will not only keep the girls safe, but they are 100% able to travel with us while is AMAZING! They come with a memory foam mattress, and an air mattress. This way when we go to philly or on any trips we will be able to fold up the structure of their beds (kind of like a tent) and put them in a rolling suit case (comes with it) and it can get put right in the car! We are very excited for these beds and they should be able to to be delivered sometime in the next week or so! I would love some advice on a certain subject as things with the girls are changing and they are becoming more independent. We went to to playground the other day with one of our therapists to do a special make-up session at the park. While we were there I was watching Erin while our therapist had Abby. Abby wanted to go down the slide so I said sure let me catch her. I walked 5 feet to the bottom of the slide, caught abby, stood her up, and turned to check on Erin and she was gone. There was a level of panic that set in that I haven't felt before. It isn't like a typical child at the park when they run off and play, because you can always call them to come to you, they may not listen but most times they will at least respond. Well with the girls, since they are non-verbal, they don't come when I call when we are out like that. They don't yell or respond back to me. So when she went missing I couldn't call her. I just had to look. Luckily we found her, but in those 30 seconds it took abby to slide down the slide, Erin ran to the other side of the playground and was sitting in a little corner. All this being said I would love ideas on how to keep track of the girls when we are out. God forbid this situation ever were to happen again. Right now I can't take the girls to the playground by myself as it is, and even when I have another person it's hard. My best Idea has been to get apple air tags, and put them on their ankles. This way if i don't see them I can track them. I have never had an air tag, so if you have one I'd love it if you could tell me how well they work...this is something I have never had to think of before and now it's at the forefront of my mind. As the girls get older, some things get easier and other things get harder. Yes, they learn new skills, and gain new independence but at the same time they are still so different than other children. Since we have been home from Philly I have made it a point to try and make friends, and do things, and go out with the girls. And man let me tell you, it is hard. We go on playdates with other families which is so fun, but also filled with anxiety and guilt. All the kids are playing and having fun, but the girls like to eat the grass, and don't actually play with the toys, and wander off, and don't understand. It is just a lot to try and "socialize" while at the same time trying to make it so that the girls have fun, stay safe, and don't make anyone "too" uncomfortable. I know I shouldn't worry about that, but I do. The girls don't understand personal space especially when it comes to other kids. They love to pull on tutu dresses and eat shoes (idk they're odd lol) they think hair bows are beautiful but don't understand to not pull them. And it is hard for me to be on top of them all the time. There are moments where I look around and see other moms enjoying themselves, sipping coffee and chatting while their kids run and play together making sweet memories. There is such a longing to be able to do that, but I have come to the realization that is just not how my mom life is going to be. And I have to be ok with that. The Lord gave these incredibly special little girls to me because He thought I would be the best mom for them, I just wish sometimes my journey of being a mom didn't involve so much sacrifice. I always wanted to take my kids to story time at the library, the fun workshops at lowes, the fun kids events at church, the easter egg hunts, the birthday parties, but our lives are just different. Yes, we CAN do all those things, but they aren't 100% enjoyable. They are hard, and filled with anxiety, guilt, frustration, and jealousy. We are only human, I am not perfect, and I may put a smile on and do my best to give my girls the best time when we are brave and do things, but man am I feeling all the emotions on the inside. We love our girls and wouldn't change them for anything they are absolutely amazing. We just have some tough days, and I am sure that any other special needs parent, or regular parent can relate. Being a parent is a tough job, but there is nothing else like it out there. We are so lucky to have our miracles, and be able to feel those feelings because there are some parents who never got the change to feel all those things. So even though it is tough we are so incredibly grateful!!!
10 Comments
Mary Shoemaker
4/29/2022 05:25:52 pm
You and the girls are doing great.remember how far you have come, and know that means you ( and the girls) are just where you are is where you need to be. I just thought of one of mine who was walking just fine,and all of a sudden she started stumbling. After many tests it was discovered she had a iron deficiency. Might be something to check out.
Reply
Heather Delaney
4/29/2022 05:48:11 pm
We are actually dealing with Iron stuff! That’s great to know! Thank you!!
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Vera Peter
3/11/2024 07:26:26 pm
i want to share my amazing experience with Dr Jumba my husband was cheating on me and when i found out we had a fight which lead to him filling for a divorce i cried and fell sick when i was searching about love quotes online i saw people talking about him and his great work whose case was similar to mine they left his contact info i contacted him and he told me not to worry that after 24hrs he will cancel the divorce and be back to me after i did everything he asked me to do to my greatest surprise the next day evening it was my husband, he knelt down begging me to accept him back,thank you once again Dr Jumba you are indeed a blessing to me he can also help you contact
Reply
Joanne Allan
5/3/2022 12:45:55 am
Is there any groups you could join for families who have children with additional needs near you? Such a great thing to join,you can talk about your worries and get support with the girls while you chat to the other parents?
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Kat
5/22/2022 11:34:14 pm
Hi,
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Quine Johnson
11/8/2022 07:23:04 pm
May I just say God bless you and those beautiful girls. I have a 5 yr old daughter Jurnee that was born at 24 weeks. She has been diagnosed with cerebral palsy and autism. She is nonverbal. She did walk with a kaye Walker for a time and is now walking independently with AFO braces as she is a toe walker. Although Jurnee is developmentally delayed she does meet milestones in her on time. In fact at one month shy of her 6th birthday sometimes I feel like we are doing the terrible two phase again and again. So much newfound energy and so very much to explore. You are great and your girls are amazing. I have joined some social media groups that really help with this journey our special kiddos are taking us on. I too understand the feelings of guilt, anxiety, and such but I'm learning to just get out there and Live! It's good for myself and my Jurnee and by educating the masses we are going to make the world a better place.
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Liat M.
6/27/2023 09:28:08 pm
Have you ever thought about adopting a child or having another? I know it may seem overwhelming but it may help ground you. If you register with opwdd they should provide ten hours of respite care. Girl you aren’t alone. Kids with significant challenges make us angels and better humans. It really is for a reason. You absolutely need help. It’s too much on you alone. You do need to have them in a good school if anything for respite. If they are fragile the school should send someone to the home. They can possibly go part time. You’re a phenomenal mom and human
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Elizabeth Kelly
6/28/2023 05:22:58 pm
You are very fortunate to have such beautiful little girls and they are very fortunate to have you as parents. You are doing a wonderful job! Thank you for sharing your story.
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11/19/2023 10:53:19 pm
If you want to give birth to a twin baby, there are actually some methods that encourage a female to ovulate, such as artificial insemination or IVF. We have compiled for you in our news what you need to know.. https://turkeymedicals.com
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Vera Peter
3/11/2024 07:26:44 pm
i want to share my amazing experience with Dr Jumba my husband was cheating on me and when i found out we had a fight which lead to him filling for a divorce i cried and fell sick when i was searching about love quotes online i saw people talking about him and his great work whose case was similar to mine they left his contact info i contacted him and he told me not to worry that after 24hrs he will cancel the divorce and be back to me after i did everything he asked me to do to my greatest surprise the next day evening it was my husband, he knelt down begging me to accept him back,thank you once again Dr Jumba you are indeed a blessing to me he can also help you contact
Reply
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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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