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
I can not wait for March 22nd. On March 22nd the girls will have been home longer than they were in the hospital. That's a milestone I never knew if we could reach. So many days in the hospital filled with such stress and worry. To think that we have been able to enjoy the comfort of our own home with our family all together almost longer than we spent in the hospital is such an amazing thing!
I know it has been a while since I have blogged. Being a mom is weird. It's a never ending job that doesn't seem to leave much time to do things that you want to . By the time the girls go to bed in the evening I still usually have dinner to clean up and then pick up the mess left from the girls along with maybe folding a load of laundry. Then 2 hours after the girls go to bed I get their nightly feeds together along with a batch of medications to give them. Usually by the time that is given and the girls are back to sleep, because I'm not as ninja like as I would like I usually wake them up while doing those things, it takes a good 20 minutes or so to get them back to sleep after setting them up. So around 10pm is when I can sit down and do my thing....which is usually talking to my pillow. So to say that I don't get a chance to blog very often is fairly understandable. Anyways... The girls are doing great!! They are officially 2 and a half already which is crazy! They are still the happiest little girls I know. Abby is working on so many new skills. She is so close to being able to sit up on her own. She has done it a few times with a little help but I know one day I will find her sitting when I left her laying down and it will be amazing! I know that day is coming sooner rather than later! She is also doing amazing with her standing. When you stand her up in her AFOs you are able to let go of her for a few seconds and she will stand on her own....granted it's not long before she looses her balance, but still she is standing! She also is doing awesome on the tread mill. At therapy they have a tread mill that has a harness contraption attached to it and while Abby is in the harness she will take several steps on her own!! Its amazing to watch her little mind make the connections to begin the process of walking! Big things are coming for Abby and she is well on her way! Erin is making new strides left and right! Today she ate a little piece of a chicken nugget!!! WHAT! She isn't a fan of purees but we have started giving her soft solids and she seems to really like them! She tried a few pieces of a peanut butter sandwich yesterday and loved that as well! It gives me so much hope that she will be eating soon! Keep praying because this is a HUGE milestone. She also have starting trying to stand up on her own when leaning on things which is also huge and now she is trying to pull up to stand! It's funny with Erin, things that click and all of a sudden she is doing new things. It's so fun to watch! She is so interactive and funny. She makes me chuckle so many times during the day just because she does so many funny things. She is an amazing little girl! In other news last month our surgeons wrote an article that was published in the New England Journal of Medicine about the girls! It was really awesome to see! It spread the word about the girls again and it had brought another wave of encouragement our way which was so needed. Sometimes life just seems to bog you down. You know all the good things, and you remind yourself of the good things, but the monotony of everyday life can dig a rut. Being a special needs mom is a funny thing. Most of my friends are therapists, and the only places we really go are therapy, church, and my moms house. And right now we haven't been to church because of flu season and the girls have already been sick too many times this year and we want to prevent any more. So it can get pretty lonely sometimes when we are in our normal routine. We still struggle to do things that most children can do. We can go to the park, but all we can really do is the swings, and its a lot of work to get them both in the car, then the wagon set up, the girls in the wagon, and then out of the wagon into the swings only to swing for 10 minutes or so, only to have to do it all over again to get home. So we don't do it often. Story time is would be something we do but it conflicts with our therapy times. And play dates are tough since the girls don't really "play". I know we will get there but it is just taking longer than I guess I anticipated. Another thing we are starting to think about is what school is going to look like. The girls are aging out of their early intervention services this summer and we are starting the process of switching everything over to the school systems. It's totally uncharted water for me because first of all I have never had children before and second not a child with special needs. I have no idea what school will look like for the girls, and I am honestly scared to send them to a pre-k type of thing just because of their needs and their immune systems. I know the social interaction would be good for them, but man, that is a hard one for me. Especially with these stories going around of children that have special needs who are neglected when they are sent to school. The thought of that happening to the girls literally makes me sick to my stomach. So the whole process is just new and uncharted territory to us. So please keep us in your prayers as we start to navigate this whole thing. Homeschooling has always been a thought in my mind, but we really want to do what's best for the girls and that may mean sending them to school so that they can get all the services they need. Another new thing that is happening is that we are working on possibly buying a house soon! This has been something Riley and I have wanted to do for a long long time. Our townhome is great but we are very quickly out growing it. The girls have several pieces of large medical equipment, and closets and shelves full of medical supplies. We also have wall to wall carpet in our townhome which makes it really hard for the girls to use some of their equipment because its so hard to move on the carpet. Like trying to walk in the gait trainer is impossible where we live now because it is so hard to move on the carpet. I want them to be able to use these things when they're home, not just at therapy. So we have started the process and are on our way. Please pray that our tax return will be sufficient enough for a down payment. Our plan is to use that and we are praying that it is substantial enough to help us get the home we could really use. We would love a backyard for the girls to be able to one day run around with our dog and play in. It's amazing how many dreams can go into purchasing your first house. We are so excited and nervous at the same time. But we know God is leading our steps so we keep marching forward. On the medical front there isn't much to report. We made it through the flu...that was a tough one. But other than that we are staying healthy and happy. We don't have to travel to Philly till late spring early summer and are just enjoying this little lul as best we can. It's nice to have some normalcy happening. We so appreciate each and every one of you! We still receive messages and little care packages from people and it means the world to us to know that you are all still praying and walking in faith with us that our girls will keep growing and getting stronger and healthier. So many prayers have been answered my facebook messages from people offering diapers and encouragement. It really humbles us. We know God is going to be blessing all of you 10xs how you've all blessed us!!!!
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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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