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.
I am so sorry that I haven't been able to update everyone lately. Life has been crazy. Between going to Philly, coming back, the girls getting sick again, and then moving its a constant whirlwind of activity. So here we go..the most recent update!!
Philly was, as always, wonderful. We ended up seeing our neurologist, plastic surgeon, neurosurgeon, general surgeon, nutritionist, and the feeding clinic. We also were able to attend the fetal reunion which was so nice!
The fetal reunion is held at CHOP every year for families who have had children in the Special delivery unit at CHOP and used the center for fetal diagnosis and treatment. It's an incredibly special day because everyone around you has gone through those gut wrenching emotions when you find out something is wrong with your unborn child. It's emotional to watch the slideshow they do every year, where you get to see all these amazing smiling faces. Perfect little miracles who all were helped by these amazing doctors and nurses and staff at CHOP. I got to meet people that I have only met on Facebook which is always fun. I got to hang out with two other families of conjoined twins and see how well they're all doing (one of which is in college to become a surgeon...just saying!!) It's those types of days that you need to have once in a while. A day filled with encouragement and hope. Where you can see "look they did it" and realize "my kids can do it too". We also got to see and hug some very special people who were around when I gave birth to the girls. The nurses who cared for me while I was on bedrest and in labor with the girls. The doctor who actually delivered the girls was also there. It really was so special to see them all and have them see how well the girls are doing!
We also were able to stay are the Philadelphia Ronald McDonald House. When I first started my stay at the PRMH I was an emotional wreck. I had just had a c-section, I wasn't able to be with my babies all the time, and I was trying to figure out how to be a mom. It was a place that I didn't want to have to be in. But after a little while I grew to absolutely love that place. It was truly my home. I made friends with staff and volunteers, and the other families I met while I was there are now friends that I will have for the rest of my life. One special thing that happened while I was staying there was that they broke ground for a new wing. They had plans to build an incredible 8 story building off of the main house that could house many more families who had children in the hospital. When it happened I remember thinking "wow won't it be so cool to be able to come back here when everything is done and have the girls with us to enjoy it". It was almost a dream. Well this past visit my dream came true. We were able to stay in the new and improved PRMH. And let me tell you, if you have ever donated the The Ronald McDonald house charities....THANK YOU! This building is incredible. Everything is state of the art and made so that you have the most comfortable stay you can have. Each room is more like a suite that almost feels like an apartment. And somehow even with all the space and new things it still feels like home. It is still one of the most welcoming places I have ever been. Where the smiles that greet you give you hope for your children. The staff and volunteers that work there are inspirations because I can tell you, parents of medically complex children are not always easy, we can be pretty darn tough to deal with sometimes. But they have always been so incredibly accommodating and do whatever they can in their power to get you what you need so that you can care for your child the best that you can. It really is the only other place like home!!!
We had lots of good news during this past trip. We saw our neurologist who was so happy with the recent gains the girls have made that he decided to start weaning the girls off their seizure medications!! The girls just this past week totally came off their topamax!!! Which for one is amazing because it was expensive every month, but for two has just made them so much brighter!!! If anyone has been on any type of seizure medication you can attest to the fact that most times when you start it, it makes you very drowsy and sleepy and you need to let your body get used to it to be able to function again. These little girls were basically snowed out cold from their seizure meds for a good week when they were first started on these medications. So now as we are coming off them it just seems like the light in them is so much brighter. Erin is on a new level. That little girl gets into EVERYTHING! She is also pulling up to standing now and because of that she is really into everything. And she is fast, like super speed when it comes to crawling. So she just seems to be blooming before our very eyes and I really think it is because of the weaning off of her seizure medications. This was the only one left for her so now that she is seizure medication free I feel like her little brain is free to make so many new connections and we are loving watching it happen! And Abby is also seeming so much brighter. Her cognitive skills seems to have changed over night. She has always been such a sweet and sassy little girl but she is also so sensitive now. She gets so happy and giggly and smily, but when someone is upset or tells her or Erin no she is so sad. It's so sweet to see her understanding these emotions when she didn't show them as much before. She also has been reaching to be picked up more and is scooting herself around and sitting up and exploring in her own little way and it's just such a miracle! Abby has one more seizure medication to be weaned off of but we will hopefully be doing that as soon as she has been off this one for a little bit. We need to give her body a little time to adjust before changing it up again. But weaning off medications has been such and answer to prayer. We didn't know if these medications were something that the girls were going to have to be on for the rest of there lives, but just two years after surgery and they are already barely on any medications anymore! God is good!!
We also got to see our different surgeons who were, as always, amazed to see all the progress these little girls are making. We love seeing them and being able to show off the girls to them. They were the ones that gave the girls are real chance at life. A chance beyond basically living in a bed because of the way they were conjoined. They didn't just save the girls lives, they saved their lifetimes and we are so so grateful to all they have done for our family. We talked about the future and what their plans are moving forward with the girls regarding reconstructive surgeries and things of that nature. We decided to wait a bit longer before anything is done. They're doing so well right now that they don't feel the need to work on anything at this moment in time. (which is a relief for this mama who is not ready for her babies to be back in the hospital for a while).
We saw our general surgeon and nutritionist as well. This was an important appointment because the girls have not been gaining weight as well as everyone would like. The have been getting sick so often that every time they gain any bit of weight they get sick and loose it. Being g-tube kids, they are a lot more apt to throwing up when they are sick, even if it is just a cold. Meaning they get a lot of fluid when they are sick but not many good calories, therefore having them loose weight. It's a constant battle to keep them healthy and keep weight on them. So we tweaked some things and are working hard on getting some weight on these monkeys who never stop moving. So please keep that in your prayers. Its a tough spot to be in because most people when their kids don't gain weight are worried about having to get a feeding tube, but we already have a feeding tube and can't seem to gain weight so its a little more serious in our case. So hopefully the girls start gaining lots of weight and stay healthy over the summer!
Then we had our feeding clinic evaluation. This appointment was a little different than the others in which I kinda felt like a failure. First off the girls weren't accepted to the program. We were told that they have the skills needed to eat and that it is because I am not working enough with them so they are not using those skills. That its more of a behavioral issue than anything else. This was a huge blow because it is the one thing that I struggle with when it comes to the girls. I worry a lot about their eating. And to hear those things (which are very contradictory to our therapists takes) was tough. But we take everything with a grain of salt and keep doing what we believe is best for our children. And that is all I will say about that. Needless to say it wasn't a great appointment.
Now since we have been home things have been crazy. Abby got sick and ended up in the ER for what turned out to be a sunburn that we didn't realize she got. (two random square shapes on her back that must have gotten sun while at the pool). She came down with a high fever and when we stripped her down we noticed what we thought was some weird rash or something. So we took her to urgent care (it was a weekend of course). Urgent care had no idea what was going on and because of her medical history sent us to the Emergency room. Only to be told the fever and marks on her back weren't related. So after much deliberation we figured it had to be a sunburn from being at the pool. Since then her fever went away a few days later, and her sunburn is now two little tan patches on her back. Needless to say we are way more careful with making sure that every inch of the girls has lotion when we are out in the sun. (we weren't used to two piece bathing suits....lesson learned)
Then after Abby got better we ran into a house near my parents that was up for rent. I really believe it was a God thing because it almost just fell into our laps. My sister noticed the sign, and her and my mom called. It just so happened the realtor was at the house and told them they could come over that afternoon. They called me and I reluctantly went because I didn't think there was a way that we could move. But I went and fell in love with the house. Hard wood floors in the living areas, fluffy carpet in the bedrooms, a beautiful kitchen, fenced in back yard, and 1600sq ft! I was blown away by how perfect it was. And did I mention it is also a ranch! While walking around my parents were talking with the realtor and talking about the girls and telling him a bit of our story. The girls just melted his heart and the next day I got the phone call that we were the family they wanted to rent the house out to. To put the cherry on top, the rent is cheaper than what we were paying month to month at our town home!!! I'm telling y'all, I was feeling so defeated when it came to moving. I didn't think it was every going to happen, but it did AND without tax returns (that's a whole other issue....ugh). God always has his timing for everything and this was a perfect example of that. So we just moved into our new home just a few days ago. And we are loving it. The girls get to use their gait trainers now and work on their walking (which they couldn't do in our town home). We have more space, and extra bedroom, and finally feel like we can breathe a bit since we aren't so cramped. And as I said earlier in this post...God is good!!!
We have also decided that we are going to have the girls start preschool in the fall! This won't take away any therapy time since they'll have two days a week that they won't have therapy (since they are aging out of early intervention). So it works out perfectly that on the days they don't have therapy they get to go to preschool for a couple hours. We really think that have that time spent with other children their age will help their speech. Their talking seems to have been on the back burner so we are praying that being around a bunch of other kids will help the start to talk. We are excited and nervous all at the same time. But the school is wonderful and so are the teachers and staff. Our IEP meeting went great and everyone was encouraging and kind and you could tell they really wanted to girls to be there and really thought it would be good for them.
Thank you all for the prayers and encouragement you always send our way! We couldn't do this journey without all those who truly support us. I was just thinking about it the other day that it is amazing how many wonderful strangers are out there. It is amazing how people who have never even met us can be so kind and encouraging. We are so blessed to have you all follow our family and watch our girls grow with us. They truly are a miracle that unfolds each and every day!!
By the way....can y'all believe the girls will be THREE this month!!!! When did that happen!?!?!?!?
I've always knew I wanted to be a mom. Even when I was a little girl my favorite thing to do was play with my dolls. But man I had no idea the amount of mental fortitude it would take actually being a mom.
The Friday before mothers day the girls were acting a little funny. Abby was cranky and clingy and I thought she might be getting sick. Then on Saturday they seemed to be pretty normal so we went about our Mother's Day plans on Sunday. Well towards the second half of the day they both became super cranky (Erin more than abby) and very clingy. By Sunday night Erin had a 103 fever and was completely miserable. Fast forward a week and a day and that brings us to today. Abby is stuffy and cranky and will get a slight fever every now and again. Erin on the other hand is very stuffy, runny, and has a nasty nasty cough. She also keeps running a decent fever every now and then, and you can tell when the fever comes back. Her eyes get dark rings around them, she gets really upset and tired, her nose starts running, and her cough gets pretty constant. It's been exhausting dealing with this for over a week now. We went to the doctor for a second time yesterday and ended up getting some chest X-rays for Erin just to be safe. Her cough has been the main worry for me. She doesn't sleep well and our nights are spent in steamy bathrooms or next to the nebulizer. So we thought the X-ray was a good idea. It came back clear which is good news, but not good news in that there isn't something to "treat". The doctor thinks that she has adenovirus which seems to be making the rounds right now. Adenovirus is a common viruses that infects the lining of your eyes, airways and lungs, intestines, urinary tract, and nervous system. They're common causes of fever, coughs, sore throats, diarrhea, and pink eye. Which makes a lot of sense since I was wondering why their eyes have been kind goopy, not pink eye goopy but more watery and crusty than usual. So unfortunately it is just a waiting game till everything gets better.
This is one of the worst things because you cannot do anything to help them except Tylenol and cuddles, and they're still miserable most of the time. Erin wants to be held almost 100% of the time. And it isn't just being held, it's like holding a restless worm that wants to burrow into you haha. She is a super snuggler and just wants to snuggle as hard as she can. I know it is so hard on them (especially Erin who seems to have it much worse) but the emotional exhaustion I feel is crazy. I have felt this way with other sicknesses they get but this has been the longest sickness they've had thus far, and the most sleepless. So besides just being tired, I'm just drained. But being a mom gives you super strength. The love you feel for your children seems to somehow propel you through any type of exhaustion you might feel. Don't get me wrong, yes we need breaks, yes we need time away from the kiddos, and need to make sure we are taking care of ourselves, but that mama love seems to give you strength to get through. There are moments where I feel like I'm falling apart and I just sit down, take a breath, and then get back to it.
Please please please pray for these little munchkins. They are exhausted and we just want them to be better and happy. We have missed almost two weeks of therapy because of this and we are so ready to get back to our normal routine and get some good sleep again. Also pray for Riley since he isn't feeling well. I wasn't feeling great for a few days but am basically back to normal, but Riley seems to have gotten this pretty nasty virus now as well.
In other news we are still trying to move. This is like the never ending saga. Still waiting on the tax returns which seem to like to never come. But hopefully we will get it within the next few weeks and be able to move to a place that has more space and and make it easier for the girls to use their equipment.
We head to Philly in a little over a week for all of the girls follow up appointments. We are hoping again to stay at the Ronald McDonald house and be able to see some friends at CHOP. It's a long trip but its so worth it for the amount of care we get from them. Next time I write I should have some nice updated information about how well the girls are doing. We are excited since we haven't seen our CHOP doctors in 6 months!
We so appreciate each one of you who follows our journey! I love when I am out and about and I run into people who follow us on facebook and read the blog. I love hearing how the girls have inspired you. A lot of how well they are doing has to do with all of you. The well wishes, wishlist items, gofundme donations, and letters really help Riley and I be better parents. It encourages us to keep moving forward . It humbles us knowing how many good people are out there and lets us teach that to our girls as they grow. To grow up knowing you have people all around the globe in your corner will be incredible for them! You guys are seriously awesome and we can't thank you enough. You've been an answer to prayers. There have been days where I was sitting on the couch crying because a certain bill is hard to get paid, and then a go fund me comes in, or we are trying to figure out which diapers were the cheapest because we were running low, and we would receive a few pack the next day and some every month! I wish I could express how grateful we are to each one of you. Please know we deeply mean it when we say thank you. And especially thank you for the prayers......"where two or more are gathered".....and we have people all over the word gathered who pray for our family, and I truly believe it's made all the difference. We love you all!!!
Lots of things are happening here at the Delaney house. Life is always at a constant running pace. Somedays it feels like it's hard to keep up. One day things are one way, and the next day things are a different way. It kind of feels like a game of ping pong going back and forth. But that seems to be the way life is. A constant stream of ebbing and flowing....and moving with it.
Please say a prayer for us. I had mentioned a few blog posts ago that we were trying to get pre-approved for a mortgage. Well unfortunately we did not get approved. Times are tough and finances aren't what we would like the time to be and it looks like it is going to probably be another 2 years or so before we are able to actually purchase a house. Riley recently got a new job and is considered self employed which makes mortgages a little harder to get. So all that being said we are still thinking of moving. We are busting at the seams. Our living room is basically a play/therapy room with a couch in it. (don't get me wrong I am not complaining...I love that my living room is full of the girls' things) But we are just running out of space, and need non-carpeted flooring so that the girls can start using their gait trainers (walker type equipment) at home and not just at therapy. They don't have much space to themselves, let a lone being able to be outside. So it is time for a change. And it is scary trying to get everything to line up just right. Trying to get our tax returns back, end our current lease, and get into a new place all at the same time is tough. But God always provides and we are praying so hard that he continues to do so. His timing is always perfect and I have to remind myself of that.
In other news the girls had an appointment at the pediatricians office recently for a check up. They are doing so good. We are so grateful that they are healthy, happy, and moving forward. And I am not going to lie a did a little happy dance because they both finally gained weight!!!! Weight has been such an issue with these little girls. Since they started moving a lot more its been a struggle to get enough calories in them so that they started gaining. And praise the Lord they each have gained over a pound in the past month! I love that they are getting real, normal, healthy food instead of formula. We love our nutritionist and GI doctors. They have all been so supportive of me doing a blenderized diet for the girls. I hear so many stories of doctors who say no to blended diets. But is is so much better. They girls are totally off their reflux meds and are gaining weight!!! They like to beat the odds over and over again.
We are still waiting on formalities to see if we can get the girls a feeding evaluation for the feeding clinic at CHOP during our next visit. It is not easy living out of state from all of our major doctors. Everything is always a process and comes down to the last second. We are also still waiting to make our rehab appointment. But our trip to Philly is coming up so quickly! We have lots to talk about and show the doctors. Pray we once again get into the Ronald McDonald House. That make such a difference when we travel to Philly because we don't have to spend a small fortune on hotels for a little over a week. It's a long trip for the girls so have some place to stay that is comfortable and kid friendly is amazing.
In other news the girls have started the process of preschool evaluations. We still aren't sure if we are going to start them in preschool this fall or next, but either way they needed to get their evaluations done. We have had 4 out of 5 meetings so far and they have been wonderful. Everyone is so accommodating and so excited to have the girls start school with them. They've gone out of the way to make sure we are comfortable with everything and to make sure they know as much as they can about the girls and their abilities. We just aren't sure if we want to change everything up this year for them. Right now we have therapy 4 days a week and mainly in the mornings, and we are getting ready to add aquatic therapy to the list (yay!). I just don't know if I want to chance sacrificing some of their therapies since they are so crucial right now for them. Preschool would take most likely two morning a week away from therapy. I know the girls would get some services in school but I feel like while they are still this young maybe we should still take the next year and really focus on therapies still and then start preschool at 4. I don't know. Still running things over in our heads and trying to make the best decisions for our girls. They deserve the best and we will do our best to give that to them.
The other part of all these evaluations has hit me in a different way. Any other medical mamas (or daddys) feel free to leave a comment or message me if you also feel this way so I know I am not crazy. But I am realizing that I struggle to let myself hurt. I don't know if that statement really works but let me explain....
Before the girls were born we didn't know anything. We didn't know if they would make it through the pregnancy let alone make it through separation. It was always "we just want them to be here and to be healthy'. And now they are healthy and they are growing and advancing and doing things no one knew if they would ever do. But the thing I struggle with is I feel like I am not allowed to hurt for them. I am not allowed to feel sad and upset that they aren't developmentally appropriate. I am not allowed to be upset and frustrated that they have feeding tubes and don't eat much by mouth. I am not allowed to be exhausted from breaking up little fights between the two of them because abby can't defend herself against Erin stealing her toys. I'm not allowed to be physically worn down because I have to carry the girls everywhere. I feel like I am not allowed to be these things because they are here. They made it. They survived something that most don't survive. I don't know how this comes across to everyone and I hope it doesn't come across as "Oh poor heather", but Its so hard to always be positive. Always be thankful. Always look at the good and never the bad. It is so so hard.
Doing the paperwork for these preschool evaluations was so tough. At checkups for the girls I don't have to fill out the developmental paperwork because our doctor is wonderful and knows it is just a sucker punch to have to circle no over and over again for what our children can do. But preschool evaluations are different. They need to know everything so that they can help facilitate the correct help the girls will need. But for the two hours that I sat and answered questions I cried. It is so hard to see your children different. When I am with them at home and at therapy everything is good. They are happy, they are healthy, and they are improving. But when you have to fill out questionnaires that are trying to figure out how old developmentally your child is it feels like the wind gets knocked out of you. We have a meeting at the end of the month to talk about where the girls are and what they need. And I am ready, I'm prepared, and I basically know already what's going to be said, but that doesn't make it easier. It doesn't make hearing that your almost three year old twins are maybe about a year old if not younger developmentally. And the worst part is we don't know if they will ever catch up. But again I have a hard time letting myself feel this way because they are here, and they're alive, and they're happy. It feels like my emotions are in this weird limbo.
Anyways we keep moving forward, one tough moment brings several great ones. And that is what I need to focus on. I need to remember that they are happy and they don't know any different. That they are here and living and breathing and bringing so much light to this world. Our lives have been flipped upside down and back again since we knew we were going to have conjoined twins, but we are so much better because of it!!!
Thank you to all of you who have donated to our go fund me and have sent items from the wishlist! It has been a huge blessing since things have been tough. Ya'll may not realize it but you're all answers to our prayers.
So it's official.....we have been home longer than we have been in the hospital!!! How amazing is that! Being in the hospital felt like forever, but since we have been home it feels like time is FLYING!! The girls are doing so well....
Abby has started to get herself into sitting on her own, and it also getting up on to all fours. She rocks back and forth and will be crawling before we know it. I can't wait to see her explore and see what she is interested in rather than what is just around her. Her little personality comes out more and more every day. When you pick her up in the morning she basically jumps while in your arms while shrieking with happiness! She is so so happy!
Erin is working so hard on standing. She is pulling up on everything and trying to get into standing. She will be in the middle of the floor on all fours and all of a sudden her little butt will be up in the air as she tries walking with her hands on the floor. It's amazing how determined this little girl is! I can't wait to see where she is a year from now. She is going to be running around me in circles!
So, what are the next steps in terms of their medical lives.....
This summer in June we are going to be traveling up to CHOP for a whole slew of follow ups yet again. We will see neurosurgery, plastic surgery, neurology, general surgery, our nutritionist, rehab, and possibly get a feeding evaluation for CHOP's feeding clinic. We will be super busy when we go up there. The girls most likely won't have any surgery for another year or so unless something new happens. I am glad that we still have time before that happens. I am not going to lie, I am not looking forward to it even though I know it is something that is necessary to keep their brains safe.
We are working hard to try and get into CHOP's feeding clinic. The girls are still fed through their g-tubes about 98% of the time. They are able to eat different things, the problem is they don't eat enough and they just aren't "great" at it. We have a friend who we met through the Ronald McDonald house whose son went to the feeding clinic and it worked wonders for him. So we are hoping and praying that we will be able to get into that. We are dealing with differing insurance rules from the clinic and the insurance company so please pray that things work out and that we are able to get things pulled together so that we can get the evaluation done when we go up in June. If the girls meet the criteria for the program we will schedule a time to start the clinic and will be headed up to Philly for 4-6 weeks. It won't be easy on us as a family since Riley will have to stay home and work, but if it benefits the girls we are more than willing to do it!
On another note there has been something on my heart lately that I wanted to write about...
I receive so many messages, comments, email, letters telling me what a wonderful mother I am. How they don't know if they would be able to do what I do, how I am so brave and strong for sticking up for our girls and walking this tough road with them. And I appreciate the words more than anyone will know. Those words build me up and encourage me. On the tough days those words remind me I can do this. But a lot of the people who send me these messages are mothers themselves. And I just want to remind those moms that they are amazing. Every mother, whether you have children who are grown and out of the house, and your only knew your baby while they were in your womb, you are amazing. You are strong and brave and would walk through fire for your child. You've endured hard days and even harder nights. You've been worried more times that you can count, and you've loved your child with more love than you ever knew possible. You are an amazing mom! Everyone's journey is different but raising children, is raising children. I hope that you all know how wonderful you all are! And you are even more amazing for wanting to encourage me on my journey with my children. I am forever grateful!!
In other news if you follow us on Facebook you will see that the girls are in People magazine this week. It's awesome to be able to share out journey with millions of people and hopefully encourage other families all around the county. So when you are on line at the grocery store pick up this weeks issue and have a nice read while you wait :)
a few prayer requests for our family...
- that we are able to get into the feeding clinic and have everything sorted out to get the evaluation done
-that we are able to get a room at the Ronald McDonald house
-that Riley and I will figure out a way to fix our cars....(finances are really tight at the moment)
-that being in People magazine will encourage families who are going through medical struggles with their kids
-for wisdom in some decisions Riley and I are making regarding some other things in our life
We are so grateful for each and every one of you who keeps up with our family. For those who send us notes, donate to our go fund me, and send the girls gifts. You are all so kind and wonderful. We are beyond humbled by it. It's amazing how many good people there are in the world. We wish we could hug each and every one of you!
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!!!!
It's amazing how fast we take being "healthy" for granted.
We have always been super careful when it comes to germs and the girls. While the girls were in the hospital they got several illnesses. The had a round about with RSV and ended up getting rhinovirus 3 times. Abby even ended up with some type of blood infection that made her septic. Almost every sickness would land them in the ICU for at least a week. Needless to say we have seen how easily the girls can head down hill when it comes to sickness, so we have always been super super careful. We have had a few little colds since being home but nothing like what we have going on now.
On Thanksgiving Erin started a little cough. I honestly wasn't sure if it was because we weaned off of one of her reflux medications and reflux was just bothering her, but then the next day I knew she was sick. Since Friday Erin has been battling high fevers, extreme stuffiness, and a horrible horrible cough (which I am imagining means her throat is not very happy) We went to urgent care on Saturday night, and then to the pediatrician on Monday which between the two of them resulted in a steroid (which isn't doing much) and the recommendation of doing some breathing treatments here and there (which also hasn't helped). I was hoping that Abby would make it without getting sick since she was fine the first few days, and then on Sunday night she started a little cough and I knew. When we got to the pediatrician on Monday she had a fever of 103 and was coughing, super stuffy, and wasn't able to tolerate anything in her belly, even Tylenol didn't want to stay down. But I finally get enough Tylenol in her to get her fever down which in turn helped her tummy but it didn't help the cough or stuffiness. So fast forward to today (Wednesday) Abby still has a fever when it is not being controlled with Tylenol/motrin and Erin is the same. On top of all that we (the doctors and myself and Riley) are worried about the girls and their breathing...
When the girls would get these kind of sicknesses in the hospital they would go downhill very quickly (respiratory wise). Sometimes in the course of just a few hours they would be struggling to breathe. So with this sickness we are being super careful. I am so grateful that I have a friend who lives close enough who has some of the same medical supplies for her daughter that we have for the girls. She was able to meet me and get me a few pulse ox stickies since we had only gotten 2 with our pulse-ox over a year ago. Yesterday morning I had texted her about how I was worried about Erin and needed some advice from another mom who deals with the same issues and she found out we needed these and made it happen that we got them that day (along with all of her daily responsibilities with her own medically complex child). It was a godsend and we are so grateful for her and her family!! Erin had been showing some signs of possibly respiratory distress and the only way to know for sure was to hook her up to the pulse ox. Once we got the stickies I hooked her up and she was lower than she normally is for her oxygen levels but not in an area where we needed to get help. So we have just been monitoring her (an Abby) hoping and praying that it doesn't come to that.
Having children that had been in the hospital for so long gave me the chance to see things. You see how fast things change, so see how bad a little cold can get. It's a constant fear that you always carry with you. I thought once the girls weren't "babies" I wouldn't be as worried but man this sickness gave me a pit in my stomach a few times so far. It's weird there are points where I would think "just admit them to the hospital so that they can be taken care of" but I have to remember that home is best and just because I am nervous doesn't mean they need to be there. I never want us to be in a place where they need to be in the hospital because of a sickness but there is a little part of me that wishes we were just so I wouldn't be worrying all the time. I never thought I would think those thoughts....wanting my child to be inpatient, while being in the hospital brings fear, for us it also brings a weird comfort in knowing that the people most qualified to help are right there. I have to get into the mindset that I can do this and that the girls will get through it.
Now on top of the girls having this sickness I have now started feeling under the weather (sore throat, over tired, stuffy, sneezy) and then this morning Riley woke up and was feeling it. So pray that this some how breaks and our family makes it through all this nasty and that we don't get it again. If Erin is still sick come Friday we will go back to the doctor to figure out what to do next.
On another note we had a lovely thanksgiving and hope that you all had one as well. We are now in full Christmas swing despite being sick. I can't wait to see the girls figure out how to open presents and play with some new toys. Lately their eyes light up when they get to play with something new. Before they didn't really notice if a toy was new or not, but now they definitely do and it is so fun to watch their little wheels turning. Erin is beyond curious about the Christmas tree and wants to be under it all the time. Abby LOVES Christmas lights. We decorated the outside of our house and you could see the wonder fill her little face (even though she's sick). I can't wait to do the drive through lights with them this year and see how much they enjoy it. Christmas has always been my favorite holiday. There is so much sparkle and warmth and family time that comes with the Christmas season and I love it. I love that this will be the girls second Christmas at home! We will be able to spend it not only with my family, but also with Riley's family since they are all able to come down for the holidays this year! It is going to be wonderful. We hope and pray that you are able to spend quality time with your friends and family this holiday season. We are trying to take a little step back from the hustle and bustle and enjoy being together and we pray you will too!
Thank you so much for all of your love and support!! We are beyond grateful!!!
We are halfway home from Philly!!! We were up in Philly this past week for a bunch of follow up appointments. It's a long trip but it is always nice to see all the girls primary doctors and surgeons and be able to update them on progress and voice concerns.
We were able to stay at the Ronald McDonald house which is amazing. We absolutely looooove the Philadelphia Ronald McDonald house and all that they do for our family. Every time we go to Philly they welcome us with open arms and do anything that they can to help our family. It really is like going to our home away from home. We even get to see other families that I had been there with when the girls were still in the hospital. Funny thing, when you make friends with other people who have children with special needs, you end up seeing them fairly often since you share the same doctors and use the same hospital. It's so fun to see other little ones who were so sick doing so well and running around and enjoying life. It was also really fun to see the girls interact with other kids at the Ronald McDonald house. We don't go many places where I can put the girls down and let them just explore (mostly because of germs, but RMH is kept very very clean since there are children with compromised immune systems staying there). Erin is so independent now that she is crawling and she would crawl right up to the other kids. And it was so fun to see other kids coming over to Abby to hand her a toy or say hi to her. It made my heart happy to see them be able to be typical little kids playing with new friends!
Our first appointment was CT scans. The girls had to be sedated for these since they don't understand "stay still" yet. Both of them did wonderfully and came out of sedation great. We then had to wait a few days till we were able to see our surgeons to talk about what they saw.
The next day we saw neurology. Mind you we have this specialist also at home in case of emergency, but our primary neurologist is in Philly. They were very impressed with how much progress the girls were making . So much so that they decided to get EEGs done. They suspected that the amount of seizures the girls have had were decreasing and wanted to check it out. So we got EEGs done and amazingly they didn't see any seizures!!! Granted they have some abnormal brain waves but that is to be expected, but the fact that they didn't see any seizure activity was HUGE! So we are going to start weaning them off of some seizure meds!!! God is good!
We then were able to see our plastic surgeon to talk about the CT scans and future plans for reconstruction. The girls CT scans looked great. There really weren't any changes since their last ones in February. Erin's skull is actually trying to heal itself and has a little bit of bone regeneration going on which is really interesting and not expected. And Abbys ventricles look amazing. After surgery I was told that there was a 70% chance that Abby would need a shunt at some point in the near future, but she hasn't had any extra fluid build up and it really is something that can't explain which just proves what miracles these girls are. God just keeps proving himself through these girls over and over again!!!!
We then were able to see our general surgeon and the girls dietician. Unfortunately both girls have lost a little bit of weight (most likely because they are moving more than they were before). Because of that we changed up their diet a little bit to add some more calories. I am blending 70% of their diet now so I am just adding some extra fats and adding a little more of their pre-blended food to up their calories and hopefully get them gaining some weight!
Then today we got to check in with the girls' Rehab doctor. He was impressed with the new things that they are doing and how much has changed in the 6 months since we last saw him. We were worried about Erin showing some signs of being autistic but she has since then changed in the opposite direction and is much more engaged and looks in your eyes much more than she was. So as of right now he really isn't worried about that. Our biggest hurdle right now is getting the girls eating by mouth.....
The girls right now get feeding/speech therapy 3xs a week. Abby has 3 feeding therapy sessions and Erin has 2 feeding therapy sessions and one speech session. They've made progress but as I have mentioned in other blog posts the progress is just incredibly slow. Slower than we would really like to see. Because of that we have been recommended to have the girls involved in CHOP's intensive feeding clinic. This would be intense feeding therapy. The girls would meet with a therapist would will work with them and their eat for 3 meals a day 5 days a week. Because of the intensity we would be staying in Philly again most likely for 4-6 weeks. This is something that I know would benefit the girls but makes my stomach hurt....
We have been home almost a year (Just a few days from now marks a year of being home) and I am just starting to have somewhat of a life outside of the girls and all their "complexities". I'm finally starting to make some friends and do things other than just taking the girls to therapy and dr. appointments. So the thought of having to stop doing all that and go back into the isolating world of living at the Ronald McDonald house without my husband doesn't really appeal to me, but I know it's something the girls really need. The only little snag about all this is trying to make sure that the girls would be able to get their other therapies (PT and OT). So more info to come on all that when I get it, but it looks like that will be something that happens in our near future.
We are so thankful that everything went so well at these appointments. It was fun to see all of the girls doctors, nurses, specialists, and many other people. We also got a chance to see Riley's family for a little bit which was nice. And it is always fun to watch the girls with my mom. My mom comes with me and helps me when Riley needs to stay home and work. Without her I don't think I would be able to travel for these appointments like a do. We are very grateful for her!
Thank you so much for all of your prayers and well wishes! They are definitely felt. We are so excited for the holidays coming up and all the fun that comes along with them! We pray that you and your families have wonderful holidays as well!!!
This hurricane has been the talk of our town for the past week and a half (feels like longer). By Wednesday every thing was being bought out of the stores. Water bottles were gone, bread was disappearing, and low and behold all the eggs and milk seemed to be flying off the shelves. We all joke that everyone was going to have a French toast party, but in all reality everyone was preparing for the hurricane.
We live slightly north of Charlotte, in driving distance it is about a half hour (with no traffic). Charlotte is roughly 3-4 hrs from the coast depending on where on the coast you are going, so we knew we weren't going to get the worst of it. My sisters (Dana and Rachel who are also identical twin girls) go to college at the University of North Carolina in Wilmington. They were evacuated and all classes were cancelled until further notice since Monday. It's been tough for them to watch the town they've lived in for the past few years being torn apart by this storm. We are hoping and praying that their apartment and all their stuff is still safe and dry. They aren't sure when school will start back up and they are worried since it is their last semester before they graduate. One of them is student teaching, while the other is doing an internship. So we are praying that UNCW is able to get back up and running without having the school year all messed up.
Here where we live we are getting the worst of it as I type. It is super super rainy. There is more rain than NC has seen in a very very long time if ever and it is still coming down strong and is supposed to keep coming down strong for another couple of days. Luckily we are far enough from Lake Norman that we don't have to worry about the lake flooding and we are living in a high area. So the flood risk to our home is very very low thank the Lord. The thing everyone here is most worried about is the power. Luckily we still have power, but we can't say the same for most of the rest of our town. We are the only ones in our family who have power right now (the rest of my family lives within 5-45 min from us and none of them have power). So we are very lucky and blessed and know that God is watching out for us and our precious girls. As more rain comes and the ground gets even more wet the threat of down tree gets greater and greater so hopefully the power stays on, but if it doesn't we are well prepared.
The girls are doing well! We have been seeming to battle change of season colds, along with 2 year old molars (I hate those things). So some of the nights are long and feel like they are never ending, but then the morning comes and we try and start afresh. Erins crawling is becoming amazing. She goes everywhere and anywhere and we are working hard to babyproof everything in our house. The newest addition we have is a baby gate that she hates. We put it up in a place that she can't get to the kitchen or the stairs and there are days that she will just sit in front of the gate and whine. It's pretty cool to see her coming out of her shell and becoming little miss independent. She explores and loves finding things under the couch that didn't realize were lost. And little miss Abby is starting to sit up on her own. She is so close to being able to sit herself up on her own but when you put her in the sitting up position she can sit there for a few minutes. We are so proud of her and how far she has come. We are so excited to see how well these girls are thriving.
One thing we ask for prayer on is the girls eating. There are many days I start to feel very defeated. They're making tiny steps forward but not as many as I was expecting. Things haven't changed very much since we came home from the hospital almost a year ago. They both can take things by mouth, can can swallow but they just don't seem to be interested. A lot of times they gag or will reject everything altogether. We've tried so many different foods, textures, sweet savory, crunchy, puree, little pieces, puffs, melts, teething biscuits, and basically everything else you can think of and nothing seems to really get them interested. It's hard for me to not be able to change it, or see big progress. I get the same question all the time of "how long will they have the g-tube". My answer is always we don't know. I was hoping and praying that the girls would all of a sudden just "click" when it came to eating but they just don't want to. They also don't seem to talk much. They will babble and say mama and dada, but they don't know what they're saying and don't associate mama with me or dada with Riley. So I worry about that as well. It's so hard because there is no book to follow on this. I can't read "what to expect" for toddlers because my toddlers are different. I can't go by what a "typical" 2 year old is doing because the girls aren't expected to do that. It's just been hard for me lately.
Because of those things being hard for me coupled along with being with them in the hospital for the majority of the time by myself (with the help of my husband, mom, and other family members visiting) I've been having a hard time letting go. Since the girls have been home the only people that watch them are either Riley, my mom, or my mother-in-law. Other than that they are always with me. I'm so afraid to leave them (Even if just for a few minutes) with anyone else. And not only that but I am having a hard time letting anyone else have a say in anything to do with them, even my husband sometimes.
Being the parent of a medically fragile child is a strange thing. You develop such strength and perseverance that you don't realize that you are also scared and tired. Since I made so many decisions for the girls when I was in Philly (from when to change a diaper all the way up to life saving measures)I've had a hard time letting anyone else have a say. Even if that means deciding whether or not to for-go a nap, or how to handle them girls when they have a temper tantrum, or when to call the pediatrician. I'm not able to be away from them for more than a few hours at a time. And I feel like I'm failing my husband because of it. I'm being very transparent because I feel like there must be others out there that feel the same way as me and are just as afraid to say it as I am. I feel like I worry about the girls so much and it takes up so much of my brain and time that my husband doesn't get the attention from me he not only needs but deserves. And it all stems back to this need of not being able to let go. When you watch your child clinging to life and you are needing to be strong for them and make decisions that affect every aspect of their life you feel like they need you that much even when they are well and happy and thriving. You know in reality they don't but there is a part of you that feel like if you leave too long something will happen, Abby will aspirate because of random reflux that leads to a vomit and no one saw the early signs that I can see, or Erin will have some weird freak out moment and no one will be able to soothe her so she cries till she vomits which may induce a seizure like its done before. It's a constant fear that things will go wrong because someone other than you made a decision for you. And when you've made all the decisions on what you thought was best for your child's health its incredibly difficult to let anyone else have that power because what if they're wrong and you were right.
My husband and I started doing a devotional called the battlefield of the mind and I am praying that the Lord will help release these fears from me. That He will give me a peace and a calm that only he can give when it comes to the girls. I'm praying that he helps me to let my husband have more of a say from things as little as nap time all the way up to the big things. I am praying that I am able to shift my focus not "away" from the girls but onto the things that used to make me happy like spending time with my husband and going out and having fun. It's tough being a mom these days let alone a special needs mom. So hopefully God will keep working on me because He knows I need it!!
We love you all and are so grateful for the wish list items that we have received and the go fund me donations. Life has been pretty tough on us and we are just waiting for a break in the clouds so to speak. We didn't expect it to be this hard because since my husband loosing his job and getting a pretty decent pay cut when starting his new job its been a struggle, but we know God provides! He was seen us through this far and I know He won't stop now! So thank you all again for being our answers to prayer!
I've thought a lot about what I wanted to post about for the girls' second birthday. About how proud of them we are and how amazing they're doing. But I think I want to talk about how grateful we are....
I read a post on facebook about being a medical mom and the struggles you face. And it hit home so hard. There are days where for just a few minutes you feel almost "normal". Feeling like you can take your kids out to story time and grocery shopping like any other mom could. And sometimes that feeling sticks around for a few days, until one of your kids needs to be vented during your grocery shopping because they are coughing and wrenching from the feed they are for some reason not tolerating. For those 2 minutes of crazy (they aren't quiet when they're wretchy) you feel like everyone is staring at you. Wondering what is wrong with your child, why is there a tube coming out from their clothing, why you have a giant syringe in your hand, should someone call 911 because that child is turning all sorts of colors. Thats when you remember you aren't normal. You're not just a mom, you're a medical mom. One who is terrified when a fever pops up because the last fever she had landed her in the PICU with sepsis and they couldn't figure out what was wrong for days. Even when that fever could just be something normal like teething or a small virus. It's a life where every day you walk the line between mother and nurse, caretaker and snuggler. It's a line that you so badly want to stay on just one side of it but are pushed to the other more often than not.
But for the girls second birthday (can you believe it is a week from today!!) I am choosing to be grateful. I am so grateful that I am able to be pushed over that line, that I get to worry about every little thing, that I get to worry about all the silly things other people think. I am so grateful for all the things I hate about being a medical mom. I am grateful because if I wasn't a medical mom I wouldn't be a mom at all. Our girls had barely any chance. The chances of conceiving them are 1 in 2.5 million, their chances of being born alive and well were even less. Then add in the chances of being separated and their chance of any type of survival (let alone thriving) was somewhere around the 5% range of that 1 in 2.5million. Crazy right! Our girls are complete and total miracles.
I rewatched the video that CHOP put together of the girls. Sometimes I watch that video and can't believe all that we as a family have been through. Then other times I watch it and I can feel every single emotion I felt when we were filming. I can remember the conversations had, the electric anticipation waiting for news on separation day, the twisting of my gut when I heard what Abby had been through. I can feel it like I am right back there. When I watched that video tonight all I could think and feel was the immense gratitude we feel for all those that we part of Abby and Erin's care. From Dr. Heuer and Dr. Taylor, all the way to the amazing people who cleaned our room everyday. We made friends everywhere in that hospital. Even the smiling face asking how the girls were every day when I went down to the cafeteria to get my lunch. Each and every person loved our girls like they were part of their family. When something went wrong with the girls you could see the fear in their eyes just as much as you could have seen it in mine because they sincerely loved them. And now being home everyone who works with these girls still loves them! From those who were with me during my pregnancy, their incredible therapists, all the way to the women in the WIC office. It's incredible the amount of love that is poured out on these girls. I sincerely believe that the girls do as well as they do because of how much love surrounds them.
We are so grateful to have had these past two years with these little ladies. There have been ups and downs, back and forths, sideways and every other way you can think of. This past year had some incredibly difficult moments but all 4 of us have moved forward, grown, learned, loved, and thrived through it. I am thrilled to see what this next year holds for us, and at the same time terrified. I know there are surgeries that need to happen and important doctor appointments that need to be had, and that makes me feel like screaming inside, but we are blessed beyond measure, and our God is a God of miracles. I know He has great plans for these incredible girls.
So we will do as we have done for the past 2 years, we WILL move forward, we WILL grow, we WILL learn, we WILL love, and we WILL thrive.
Ya'll this video has over 4 million views! WHAT! That's insane! We pray it gives others hope.
A lot of times people don't understand what goes into the day when you have children who have "medical complexities" whatever that may look like. There is a lot of joy, but also a lot of sweat and tears. So what does our normal day look like....
Usually we are up between 7:30 and 8 am, and this is after waiting up till midnight to put up the girls' last feed, and then usually up at least 2-3 times during the night since Abby likes to wake up screaming for reasons we can't figure out (teeth, dreams, waking herself up by peeing, we have no clue). Anyways so after around 5 hours of sleep I am up and running. I usually try to let Riley sleep a little since he works at night and is up later than I am most nights. Our morning consists of Turing off the girls' feeds at 7:30, then depending on the day they will maybe sleep a little longer or just yell until I get them out of bed. A lot of morning when I go in at 7:30 I will find that either they pulled their feeding tube apart and there is formula all over the bed, or they peed through their diaper, or pooped through their diaper. I would say at least 3-4 days a week require a sheet change for some random reason. I will get them out of bed, change two diapers, change them into their day clothes, head up and down the stairs twice to bring them to the living room. Usually around this time Riley is awake and will keep the girls occupied while I draw up 11 medications (and Riley will do this too some morning when he is home). The girls will get their respective medications and then I move on to making formula for the day (I want so badly to be doing blended feeds I just have to figure out how to get it into the schedule). I make up two different batches of formula because of course the girls are on different formulas. Once there is a new formula I fill their feed bags, change the settings on the feed pump, grab new icepacks, and pack their feeds up for the day. By 9-9:30 the girls both have to start their first feeds. Now you would think...oh not too bad you hook them up and they eat and you can get stuff done.....wrong....since the girls are more mobile (rolling, sitting up, almost crawling) they get SO TANGLED to the point where every 5-10 minutes someone is yelling because they can't move their legs because they are twisted up. Either that or because they play with the tubing they have gotten the extension pulled out, or pulled the tube out of the extension and are soaked with formula which then requires another outfit change and diaper change. Which a lot of times is pretty frustrating because I love to have them match or coordinate and to have to change an outfit before 10am is so frustrating. Then depending on the day of the week we either have to be at therapy or have therapy come to the house. To go to therapy it requires new diapers, shoes, hair done, diaper bag packed, toy bag packed, food for speech packed, both feed bags packed, both girls brought out to the car, everything packed in the car, and getting out of the door on time without something happening or going wrong. We then head to therapy for anywhere from an hour and a half to three hours. And this a lot of times all happens before 1pm. And usually at some point in the morning the puppy has to be brought out 3 times, and usually destroys one of her toys which requires vacuuming so the girls don't choke on a piece of fluff or plastic. After therapy is nap and then whatever errands need to be run or doctor appointments that have been scheduled. Thankfully Friday-sunday the girls don't have therapy and we are able to "relax" but those are the days that Riley works basically 12 hour shifts and is gone right after the girls are awake till well after they're in bed. And right now his car is broken, and so are his glasses (he can't drive because he can't see) so I have been getting him to work and hoping someone can bring him home because I can't wake the girls up to go pick him him.
Needless to say our days are insanely busy and there is usually something going on that likes to make the days longer and harder (sick babies, broken cars, broken glasses, waiting for medical supplies to be delivered, specific phone calls that need to be made). But there really is a lot of joy. Therapy for the girls is serious hard work that usually involves a few tears, but it is amazing to see their progress. To see them trying to do things that we didn't know if they would ever be able to do. Both girls are working on standing (assisted of course) but Erin has started holding her balance fairly well and just need someone to stabilize her and she can stand for a little over a minute! Abby can stand with help for a few minutes as well. It is so amazing to watch their skills unfold. With so much uncertainty its so comforting to see them doing things. We recently went to visit CHOP for some appointments, one of which was the girls developmental appointment.
I always struggle when it comes to developmental stuff because I know how behind the girls are. I know that the girls don't know any different and they are happy where they are but it hurts my mama heart knowing they can't do what others their age can. And to have it confirmed to me and talking about just makes my stomach feel like it is in knots. We found out at this appointment that the girls developmental level is around that of an 8 month old. Which is decent considering they were separated a little over a year ago and had to start over from that point. They also are a little ahead in some areas and a little behind in others when it comes to that 8 month mark. They also think Erin may have some precursors of autism but cannot test for it until her developmental age is old enough. I know that the girls are happy and don't know any different but my heart sunk at that appointment. On the ride home that day I shed a few tears. I knew they were behind but to hear them tell me that they think my almost 2 year old girls are acting like 8 month olds. I know they've been through so much and they really are doing well, but during this journey of having children with special needs its a roller coaster of triumph and grief. Somedays are full of triumph and excitement and goals met, while other days are full of helplessness and grief of the life that could have been. It's an exhausting ride of emotions that never seems to end. But the amount of joy is also so amazing. Seeing the smiles, hearing the giggles, and rejoicing in the milestones that others may take for granted is so special. Everything means so much more because it is so much more.
Since the last time I blogged I have been working my Thirty-One business and I really love it! (There is a huge sale going on right now if anyone is interested!!! go to mythirtyone.com/heatherdelaney1 and shop the jump into July party) I love the products and I really enjoying meeting new friends, and interacting with other people during the days where I don't get much interaction. They paychecks are also helpful since we have really been struggling since Riley lost his job. We just can't seem to catch up. Thank God for the girls SSI because if it wasn't for that we wouldn't be able to stay in our townhome. Riley has a new job but it was a bit of a paycut, plus we had a trip to Philly so Riley has missed work and is not making as much as he was before and so it has really thrown things off. Between the bills, the girls medications, and not having health insurance ourselves anymore every month just seems to get more expensive. And on top of everything our tax returns got lost in the mail so we are still waiting on those which we filed months ago , go figure. It's hard because right before Riley lost his job we were finally "stable" and could get everything paid for and not have to worry. It's amazing how quickly things change.
On another note the girls turn 2 this month!!! I can't believe it!! There was a time where we didn't know if they would ever celebrate their first birthday let alone their 2nd. They really are such sweet little girls. I wish each one of you could get the chance to hug and meet these little girls. Erin is such a little snuggle bug who is so persistent and independent where as Abby is a little spit fire who is always full of giggles and smiles and loves to play. They are so unique and so special and wonderful all wrapped into a little package. I can't wait to watch them grow into little girls who enjoy life to its fullest. We can't wait to celebrate this milestone for them. Birthdays have such a special meaning when you didn't know if they'd be there for it!
We still are so grateful for all of your prayers and well wishes. This life is not easy but because of your prayers and encouragement we are able to walk it with joy despite any circumstances we endure. We will have more appointments for the girls come the fall and will be finding out more information regarding reconstruction (they still have no bone of the top of their skulls) and upkeep of the girls meds and feeds. Our lives have been heavily impacted by each and every one of you, we are so grateful for you.
My 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!