In the hospital

Maria had surgery yesterday. She came through it like a champ. Some pain....not a lot. She was rather annoyed when they wouldn't let her have "real food"....she even told a nurse McDonalds sounded really good. Yup, funny kiddo. She was allowed to eat some food yesterday and managed it really well. She has been a good patient....wanting to watch Disney shows and play with the toys I got her. I even found her a big mustache to play with. We are hoping we still might get discharged today....but I have a feeling that won't happen since it is almost 6pm.

 

 

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Adoption advice

When I started the adoption process I was told keep things small when the child comes home. Just stay at home, don't let others visit, don't take the child out into the community, etc....make the child's world small. When I knew Maria was my daughter and I would be bringing her home, I wasn't sure that would be the best for her. That advice seemed to make sense for young children who didn't understand what was happening...who's world was turned upside down. But I was bringing home an 11 year old who was on target cognitively.

I made the choice to have quiet days at home, but we also had days out and about experiencing life. We went to the store, we went shopping (even at the Justice store with in the first week she was home), we went to the zoo, visited family and friends. Maria knew who her mom was, she knew she was ok. She loved spending time out and seeing things. This and continued communication with people from her orphanage helped her transition to life at home. In the little over a year home Maria has only grieved the loss of the orphanage 3-5 days. She knows she is loved here, Stara Zagora and Switzerland. She knows one day we will go back to Bulgaria and spend time with her Bulgarian family from the orphanage.

This week I got an SOS from another adoptive mom. Her older kiddo was homesick...missing Bulgaria, missing other kids...very normal stuff. I suggested they try doing things together within the community. I knew it helped Maria and made some suggestions. Maria also got to help out by speaking to the other kiddo in Bulgarian.

The other thing I hear a lot about is food issues. Maria didn't eat a lot when she came home. She didn't like really spiced foods...although salsa was an exception. She also didn't like her food to be hot when she ate it. She preferred bland foods when she came home....I fairly certain that she ate a lot of pasta, eggs, rice and veggies at the orphanage. Those are still foods she enjoys. She really loved quiche...it was the first time she requested more to eat. Another thing we figured out quickly that she liked was cottage cheese and crescent hotdogs. She didn't and still doesn't like any carbonated drinks...so no soda for her.

I know that most people will give you their opinion on what you should or shouldn't do with a newly adopted child. At the end of the day you need to do what feels right for your child and your family. I pretty much broke all the standard adoption advice and couldn't be happier with the outcome. I allowed continued contact with people from the orphanage (going against what my coordinator told me to do) and Maria has maintained healthy relationships and her Bulgarian. We went out and did things that she would find interesting and new to her so that she wouldn't focus on missing Z or others....it ended up meaning that she got to experience a lot of new things and give her more confidence. So, in the end advice is just a suggestion...it is not right for every child or every family.

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Eyes

A little over a week ago Maria had surgery on her eyes. She had Strabismus, but a very mild case. Since it was mild, I did let Maria have a say on if we would go a head with surgery. She stated she no longer wanted to have a crossed eye. So, the surgery was scheduled....for three weeks she had prisms on her glasses to trick her brain into thinking she had already had the surgery. By doing this, it meant that if the eye was going to cross further it would do so before surgery and she would most likely not require a second surgery.

Day of the surgery came...she was nervous. She had her favorite pink penguin with her as she attempted to negotiate getting out of the surgery. Yup, Maria argued that not having surgery should be an option (completely unlike her). It was her fears talking. She was able to tell the anesthesiologist that she didn't want to be given the gas this time to make her sleep. Instead she got some yucky tasting medicine that made her loopy very quickly.

As you can see she wasn't very excited.

She came out of surgery like a trooper. Got to even have a Popsicle.

On the way home Maria was her goofy self....the way she is when it is just the two of us....the Maria others don't usually get to see. I ended up asking my mom, who was with us, if she had ever seen Maria this way. She said no, but she wants to see this Maria again.

After care has been fairly easy with he help of another adoptive mom, Lauren, who knows eye issues. She quickly gave me some tips and tricks for the eye drops that worked great. The ointment was just a pain, it is hard to get into the eye.

Today we had the first post surgery follow up appointment. It went well. Maria is healing quickly. She can start swimming next week and her eyes look amazing!

 

 

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Surprise

We got a special package from Europe today!

A magazine from our friend Manuela with an article about her. She had mentioned to me a while back that she had included a picture of Maria and Zack for the article. Then last month on our trip to Ohio she emailed a copy of the article and said she would try to get us a hard copy. Maria loved seeing her and Zack's picture in a magazine. Here is the picture that was included.

This picture was most likely taken in May or June of 2012....right before Maria came home. Getting to know Manuela over this year has been an amazing gift. She truly is a wonderful person who has a heart for helping kids.

 

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ZipZac

Last year when we were are SBAI picnic, my mom was quick to point out this little boy in a rather unique adaptive chair. The little boy was quickly and easily maneuvering all over the place. We later learned the story behind his amazing chair. The boy's name is Zac. He was born with SB and his parents feared he would be stuck in a wheelchair and be able to really explore his world. Zac's mom talked to her uncle who is an engineer and the idea behind the ZipZac was developed and made....it was so new and other parents wanted to know how they could get one for their child. If you want to see more about their story here is the website http://zipzac.com/

Well, at this year's picnic I saw ZipZac's mom again and talked to her....shared how I wished there was a way to get a ZipZac for Maria's orphanage/doma. Earlier this week I got a message from ZipZac's mom on Facebook. She had talked with her aunt and uncle about Maria and the orphanage. Her aunt and uncle have a small pink ZipZac ready to send over to the orphanage. There is also the possibility that they have other ZipZacs to donate. Needless to say I'm thrilled at their desire to help children, especially ones in Maria's first home. The ability to open a child's world, allow them to embrace and explore their environment is a priceless gift.

Maria and I talked about the ZipZac going to the doma and what she and her friend Zack would have done of they had been able to have ZipZacs of their own. Maria said that Zack would have grabbed onto the back of her chair and made her pull him. Maria said he use to do that with their wheelchairs at the doma. I love the little stories Maria shares with me.

 

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Yesterday

Yesterday we were on our way to the annual SBAI (Spina Bifida Association of Iowa) picnic. After picking up some cookies to take with us, Maria started her normal routine of asking me questions (not that she talks much to anyone else). The conversation went like this:

Maria: "Mom, wishes come true?"

Me: "Sometimes."

Maria: "Wishes come true in movies and tv?"

Me: "Sometimes. Why?"

Maria: "I use to wish for a mom and dad. Then I got you, mom."

Me: "I wished and prayed for an amazing daughter and got you."

It was a pretty amazing moment for me....I wanted to cry tears of joy for Maria sharing such a special wish with me.

After this we headed to Raccoon River Park in the Des Moines area for the picnic. The picnic has grown a lot since last year. Around 160 people attended. There were individuals with SB of all ages 50+ to babies. The park is awesome...it has a great shelter near the bathrooms (which are easily accessible for those who use wheelchairs) there is a nice open grassy area next to the shelter....there is an easy transition from the concrete to the grass and the grassy area is flat and is very even. Maria said it was very easy to walk on compared to another recent park we were in.

Maria had fun with a spunky little 6 year old who thought it would be fun to play freeze tag....her dad and I looked at each other and both of us were wondering how that was going to work. They ended up having fun though. She even decided she needed to eat lunch with us. After lunch and a short parent and adults with SB meeting there was a group picture of everyone with SB there...it is quite the group. After the picture Maria was talking with an older woman who offered to show Maria her adaptive car hand controls. While Maria did this I got to chat with lots of different moms. Everyone is always shocked to hear that Maria's SB is at the T12 level and walking. A spinal injury or SB at the T12 level should mean that the person has no feeling below their belly button. Most likely Maria's SB is not complete on both sides of her body...which explains why she can walk.

After Maria got back from looking at the car she was able to play some games. I got to chat with the lady who showed her the car. She was so sweet and said that she use to walk and that they took breaks from walking when Maria needed to. One of the main issues with people with SB walking is that their legs get tired easily. When their legs are tired they are more likely to fall. Falling for them is also different...at Maria's age fall can increase the chances of breaking a bone, blowing out a knee joint or hip displacement....none of which we want for Maria. She usually does really well with walking and not falling, but wet and uneven surfaces increase the likelihood that this will happen. She has also been known to fall if she is bumped into...this happened a couple times at school this year. Maria was having so much fun and giggling so hard I was sure she was going to fall down as a result...thankfully she didn't.

It was a great day and time for both of us. I know I really needed to be around people who understand the unique challenges of parenting a child with SB. I also need to figure out if we are going to have a Walk n' Roll for Spina Bifida team this year. The goal is to raise money to help families with with Spina Bifida needs, provide education and provide opportunities for people with SB (such as camp).

 

 

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Things we are uncomfortable with

Before I even dive into this post I want to say Maria knows that I'm writing this. She gave her approval and has nothing to be ashamed about. Yes, this is personal, but it is also to help others adopting children with disorders such as Spina Bifida understand some of the challenges.

Ok....so, there are certain topics most people are uncomfortable with. Which is rather silly, because EVERYONE pees and poops. If you are one of these people who is uncomfortable with this topic, please do us both a favor and stop reading now.

Spina Bifida is a neurological disorder....meaning that there are issues with the nerves that go from the spine into Maria's legs. Many times nerves get tethered or look like a big knot. Most people with SB have continence issues....this means that they usually do not have control or have limited control over when they urinate or defecate. I knew this was a possibility prior to meeting Maria and high hopes that one day she would be able to have control over her bodily functions. The lack of continence was confirmed when I visited Maria in Bulgaria.

So, wanting to be informed I started talking with other parents who have children with SB....I needed to know what did they do to help their child gain control in this area...what supplies did they use....what issues were there. I also talked with Maria's doctors here about what they recommended. I decided that I needed to wait until Maria had a good handle on English and understood so that she too could have a say in what would happen to her body.

The first step was her urologist. He recommend the use of catheters with a medication to assist the bladder in expanding. We have started this and it has been very successful. Other SB friends helped connect us with the right products that are appropriate for a preteen/teen girl. Some families choose not to go this route for their own personal reasons. Maria and I made the choice because we knew it meant that she would be healthier in the long run.

The next step was making a choice regarding the bowels. A little over a week ago we met on a surgical consult about a procedure for this. We were both familiar with this since we know a young adult with SB that has had it. Towards the end of July Maria will go in for this surgery....basically she will have a port (looking somewhat like a G-tube, just lower) on her lower abdomen. Once this is place and she is healed, she will be able to inject a saline solution into it each night and flush out her bowel...which will take around an hour. Ok, I know this sounds rather gross....embarrassing for a child her age....but it isn't. For the first time she will have complete control over this area and be able to gain even more independence. Having this control is a big deal! It will be a huge blessing. Something she is excited for!

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