Tuesday, October 29, 2013

Did I Really See That?

Today Sophia saw her feeding specialist. Sophia doesn't want to eat anything that has to be chewed. Actually, the only thing she will eat is yogurt and she will drink PediaSure -- for the extra calories she needs. We work on trying to get a few tiny crumbs into her mouth but most of the time she will have nothing to do with that. She will turn her head and cry and fight you. Today her therapist was working on getting some crumbs into her mouth by putting them in applesauce and Sophia was doing ok. Then she decided to try to get her to actually take a small bite of the veggie stick she was using for crumbs. Sophia was not interested. She tried again and after some work she got Sophia to take a small bite -- and I mean small. She worked on getting Sophia to take another small bite and after some time had success. Then Sophia's therapist put the rest of the veggie stick on the tray and turned to get something else. I watched as Sophia took her hand and with very jerky movements tried to pick up the veggie stick off the tray. I didn't think she could get it but she did. Then I watched with amazement as Sophia actually picked up the veggie stick, and took it up to her mouth and actually took a small bite! This was amazing! Really amazing for her. She doesn't pick up small things and when she does pick something up she is very uncoordinated and usually ends up just tossing it or dropping it. The fact she picked it up and got it to her mouth was amazing enough, but for her to take a bite was unbelievable. If you have ever had a child with real feeding issues, I know you will understand. Sophia will not let anything into her mouth without a fight -- except yogurt and sometimes that is a struggle. We work so hard to get her to eat and she fights us so hard. For her to actually put something in her mouth is beyond amazing. Now, she only took two bites and then would have nothing to do with it and refused any more bites. But, she did it so I feel like that means she will do it again one day, and maybe actually eat something besides yogurt and drink PediaSure. I have an amazing feeding specialist! She has worked so hard with Sophia. 

Wednesday, October 23, 2013


Tuesday afternoon we were blessed with the birth of a new grandchild -- Joshua. He is our second grandchild and the first grandson. We are so blessed!

Monday, October 21, 2013

A Walk In The Woods

I have been telling the kids we will take a walk in the woods and enjoy the autumn days but just hadn't taken the time to do it. So, on Sunday we finally made it. It was early evening and a beautiful day for a walk. We live in the city, but have some really pretty woods just behind our house. It seems to actually have been an old farm or something -- it even has a small family cemetery on the property. Some of the grave markers actually predate the Civil War. There is also an old abandoned piece of farm machinery and an outbuilding. We enjoyed our walk very much and I'm glad I finally took the time to take some of the kids. 

Starting to get dusky in the woods so we head home.

Back home. I love to see the lights coming on in all the houses as evening comes. 

Thursday, October 17, 2013

Step UP For Down Syndrome 5K and Festival

On Saturday we went to the Down syndrome 5K and festival. Sarah, Caroline and Claire were all dancing with Miracles In Motion. This is Claire's first year of dance and her very first performance. They were all pretty excited. It turned out to be a rainy and messy day so I didn't really take many pictures like I wanted to. Most of the time my camera was hidden under a jacket to keep it dry, but I did pull it our for a few minutes and got some pictures of the kids dancing. 

Monday, October 14, 2013

Liebster Blog Award

My friend Erin at Life with the Loraines gave me the Liebster blog award! This was such a wonderful surprise and I really thank Erin for thinking of my blog when she passed on this award. I have to answer some questions that she asked -- which will be hard for me -- and then pass this award on to two other bloggers. So, I will try to answer all the questions -- here goes.
1.    What is your favorite post on your blog?  I think that my favorite post is "More Alike Than Not" because it describes how I feel about my girls with Down syndrome. They are just kids -- just like all my other kids and I think that is important to remember.

2.   Why do you blog? Well, I started blogging when we committed to Sophia (then called Allysen) and someone at Reece's Rainbow suggested we start a blog to help with fundraising. I continued blogging after both of our girls came home as a kind of journal of their first weeks and months here and just never stopped. 

3.  What is your favorite book and why?  Ok, so this may sound strange but my favorite book is The Pink Maple House by Christine Noble Govan. This is a children's book, but I have always loved the book. I read it to my children usually once a year in the fall and so far they have all loved it, too. 

4.    What is your favorite thing about each of your children? Well, since I have 20 children I am not even going to try to answer this question. I don't think anyone would want to read about that many different children and my favorite thing about each so I will just let this one go. 

5.     You have three wishes. What are they? 

·        I would wish that Bethany didn't have cystic fibrosis.

·     I wish I loved to home school -- I do it because Bill and I know it is the right thing for our family, but I definitely don't love doing it. I want to be one of those women that loves the planning and teaching and all the projects.

·        I wish I was more outgoing and that I was a more confident person. 

6.    What do you think is the best and the most challenging thing about adoption? One of the best things is seeing a child that had little hope for a future blossom, grow and learn what love and being part of a family really means. The challenge is that you never really know to what extent the child has been physically and emotionally damaged and you must be prepared for this. Sometimes this can be very difficult. 

7.  What do you like to do to relax?  Read a book or read a few of my favorite blogs.

8.  Something you are proud of...  I am proud of the way our older children have been loving and accepting and even excited over the adoptions of our special needs children. There is no hint of resentment among them. In fact, they express only love and acceptance. They take them swimming, out to lunch, to the movies, to the store with them and sometimes will just come over to watch a movie with them and have a snack -- the snack is really important to Sarah. Adopting so many children does take up a lot of our time, energy and money, but our older kids have never complained or been resentful -- quite the contrary. When we were adopting Caroline, our daughter Megan was 16 years old, and she insisted on getting a job to help with the adoption expenses. When we were adopting Sophia and Bella our daughters Katie and Abigail had the opportunity to travel to New York and play at Carnegie Hall with the American Youth Harp Ensemble. They had auditioned for this trip and were accepted. But, the cost of the trip was not really in our budget since we were saving everything we could to go get our girls. Both Katie and Abigail willing gave up the trip without a single complaint. Then our son, Michael, gave a Benefit Concert to help raise money for our adoption of Bella and Sophia. Meredith came over to our house daily to check on the kids while I was in Bulgaria (even with terrible morning sickness) and Emily went with me to meet her new sisters. They are all supportive of what we do and that means the world to me. 

9.  What is your family's favorite meal?  With so many kids this is a very hard question. I guess one meal that quite a few of my younger kids like is barbecue chicken, peas and mashed potatoes -- simple but most of the kids like it and it is hard to find something they all like.  

10. What is your favorite room in your house?  Some people may not consider this a room, but I am still going to choose it -- our front porch. I love my porch. Bill and I have coffee on it early in the morning before any kids are up and then when he goes to work the kids will sometimes eat breakfast out there. We read on the porch, sit and talk, visit with neighbors, the kids play games, we sit and watch the deer and we even have our little squirrel that comes up every single day and will sit at my feet until I feed him. When we built this house the one thing I knew we had to have was a porch and I think everyone in the family loves it. 

I now need to pass this award on to two more bloggers. I choose two that I started reading while in the process of adopting Bella and Sophia. Both were adopting from the same country and pretty much in the same time frame. They are Blessings Eternal and I Will Go Before You .

Here are the 10 questions for them.

1.   Why did you start blogging?
2.   What post on your blog is your favorite?
3.   How did you choose your blog's name?
4.   What are your hobbies?
5.   What made you decide to adopt a special needs child?
6.   What is your favorite book?
7.   Approximately how many blogs do you read each week?
8.   What is your favorite room in your home?
9.   What is your favorite season?
10. What is one of your favorite movies?

Thursday, October 10, 2013


I wanted to share something very quickly that happened on Tuesday that was pretty exciting for us -- especially me as I was the one that witnessed it. As most of you may remember, Sophia was very lethargic when we first met her and though she seemed more alert and active as the week went on, she has never really made us feel like she noticed us or paid any attention to what we were doing or saying --- we always said that she seemed to be in another world. 

After she arrived in the states, and we saw a neurologist, we realized that her problems were much greater than we originally thought. She has had a massive stroke and basically half of the left side of her brain is missing. According to the neurologist, there is no way to tell how much she can learn or communicate -- if at all. So, Sophia is kind of in a little world of her own, it seems. She hardly ever makes eye contact or joins in with any of the kids when they are laughing or playing. She usually just sits and stares out into space. The kids still play with her and if they bounce her up and down she will laugh and seems to enjoy it. But, she never really engages much with us. 

Well, Tuesday she had OT and when we got home I sat her in the floor and talked to her a little. She actually seemed to listen -- just a sense I had. She made brief eye contact with me and watched what I was doing. So, I hid my face with my hands and wondered if she would pay any attention -- she usually doesn't even look when I do this. She briefly looked and then looked away. I hid my face again, and then as soon as she looked at me I uncovered my face and said, " peek-a-boo!" She seemed to smile so I did it again. She burst out laughing! I thought maybe it wasn't related to what I was doing as she will sometimes just laugh for no reason as she sits on the floor. I did it again and she laughed hysterically! Then she started watching me and actually getting playful. It was amazing to me, as she almost never pays attention when I play with her -- unless it is rough housing. It is almost like she woke up and joined in with me. I can't tell you what it felt like to all of a sudden feel like she was there with me paying attention and enjoying our activity together. She came out of her own little world and joined into ours for probably 30 - 45 minutes. She laughed and played and was a participant for once. It didn't last that long, but how wonderful that time was. 

After a few minutes, I realized this was real and we were playing together, so I ran and got my camera -- I just had to document this day. This girl played -- really played!

Monday, October 7, 2013

566.7 Hours

Last spring Bethany received The Vest in the mail. This pink vest saves us a lot of time when it comes to PT for Bethany as she has to have PT three times a day every single day of the year. We use to do it all by hand, and it takes quite a while to do this, but her pink vest now does the majority of her therapy. I just happened to look today as I was turning on her vest and realized that she has done 566.7 hours in the past 17 months. That is a lot of hours for a kid to sit -- and that does not include the 6 nebulizer treatments that she gets everyday right before her vest. So she actually has sat through a lot more than 566.7 hours for her therapies. Cystic fibrosis is very time consuming. Every single day Bethany gets 3 albuterol nebulizer treatments, 2 hypersal nebulizer treatments, one pulmozyme nebulizer treatment, 2 Qvar inhaler treatments, three times on her vest, one mile of running, and takes approximately 25 -30 pills. This is what she does if she is not sick and doing well. When she is sick some of these treatments increase. The amazing thing to me is that she seems to take it all in stride and almost never complains. I can only remember one time that she seemed to be in a pensive mood and told me she wished that God had not made her a CF kid. That was so sad for me. But other than that one time, Bethany is so full of joy and energy that you would never know that she has anything wrong with her. 

We have really enjoyed these past few days. The weather has been beautiful -- some days cool and then some very warm. The leaves have started to change color a little and we love to sit on the porch in the mornings and eat breakfast. This morning it was raining a little and a few leaves were falling from the trees as the wind blew and it was just a perfect morning on our front porch. Even Sarah commented to me on how pretty it was. 

This little guy comes up on the porch every morning to get something to eat from us -- usually peanuts or cheez its. 

Just a few random pictures of the past week or so -- not much going on. 

Bella is definitely attaching. She wants me to be with her every single minute. When I feed Sophia her bottle, Bella actually cries and tries to pull her off my lap. When I leave the room she runs after me and if I go out the door she stands there and cries as I leave. As soon as I come into a room where she is, she runs and grabs me and wants to be held. This girl just can't seem to get enough of me holding her -- and boy is she jealous. She wants to be number one all the time. This is kind of funny as I was worried that she didn't seem to want to have anything to do with me when she first arrived in the states. Not so anymore. She is growing and is learning to play and is doing so well. She is rather amazing to us.