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!
3 Comments
jennifer waters
11/30/2019 08:20:30 pm
Good to hear the appointments went well. As someone who has raised a developmentally delayed child, I know the feelings. Hugs
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ashlee walker
10/26/2020 04:29:51 pm
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11/10/2022 04:58:47 am
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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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