Update

It has been a tough week.....so much was learned on Tuesday with neurosurgery. I'm waiting for Maria's orphanage to be told what is happening before announcing it to everyone here and on FB. It has been a lot to digest and some hard things to hear...but as Manuela said "Thank God, she is there!" Here in the US where she has the possibilities of the best imaging and some amazing surgeons to help us down the difficult road ahead.

With the difficulties there have been positives....Maria continues to have no symptoms other than the spinal fluid leaking out her back. That has even reduced since we have started doing a few things differently. Also today my smart girl told me that she tested out of the Reading Blitz program she was in. This is a program her school started this year to help kids with their reading fluency and accuracy while building up their phonemic awareness. She is one of three kids in her class to test out. Add in the fact that she is an English Language Learner (ELL) and that is pretty amazing. Now if I could just get her to see the point of actually studying for tests.....

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Waiting...

Thursday

On and off since December I have noticed some moisture/wetness on the back of Maria's shirts near her Spina Bifida scar. In the beginning I put topical ointment on it, figuring that she had some how rubbed against something and irritated it. The center of the scar would be pinker and then it would stop. Last month when it happened I attributed it to something she was doing in PE and even had the school nurse check it out. She agreed it looked like it had been irritated. We made sure she didn't do the specific stretch in PE against the wall as she had been doing. Then last night I noticed the wetness again. It didn't make sense and I knew I needed to get her doctor's opinion. We went to see her pediatrician today after school and work. I explained my concern...that it wasn't just irritated that it might be a spinal leak. He agreed we needed to figure out what was going on. As he quickly called ultrasound and radiology, I called the university and left a message for Maria's Spina Bifida doctor. Meanwhile Dr. Jay (we get to call him that since he went through grade school with my mom), decided to test the fluid using a glucos paper to see if there was sugar in the fluid. It took just a minute and the results were 100% clear....the fluid had sugar in it....it was spinal fluid. I'm not sure I can describe the fear I felt in that moment over the potential seriousness of this. We quickly talked and decided that it would be best for Neurosurgery at the university to do the MRI since we would be referred there once the results were in. Maria was upset that she wouldn't get a day off to just be with her grandparents and cousins, which had been the plan for tomorrow since she has no school. She is also concerned about possibly having to have a surgery....which I completely understand. Right now Dr. Jay thinks it is a small leak and she has no other symptoms. We won't know anything until tomorrow. I expect a phone call fairly early tomorrow to tell me what time they expect us at the specialty clinic.

Friday

We went up to neurosurgery today. Not a lot to tell other than Maria has a MRI scheduled for next week...we thought it would be today. So we wait. Thankfully Maria continues to have no other symptoms.

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Planning

Spring break is a little over a month away. Personally I cannot wait for spring! We are planning on going to Indianapolis for part of spring break. We want to meet up with some Bulgarian adoptive friends and check out a new city. We also are making arrangements to stop and the University of Illionis in Champagne. We are going to get to meet the wheelchair track coach there and hopefully a few of the athletes. Maria is super excited! We also will have our SB education day. Hopefully I will be putting my house on the market and selling it too.

When we were at the skiing event I spoke with our adaptive sports person and he is planning on Maria participating in the NJDC this July in Ames. This is going to mean getting her a racing chair and training this spring. We are pretty excited to see how she does. She has the right build for racing, it is just going to be putting in some sweat and work to get there.

Summer is also filling up quickly. Not only are we planning on the NJDC, but we have our second year Gotcha day and Spina Bifida camp. We debated some about if we should try the Bulgaria adoptive families reunion again....it ended up it is the same weekend as an adaptive sports camp that is nearby. I told Maria it was her choice which one we would do. She was rather unhappy that things were happening at the same time. She ended up asking which would be more fun and have more things she could do. Since I honestly didn't know, we ended up watching videos from the sports camp and looking at pictures from the reunion. It was pretty clear which one Maria was more interested in...so sports camp it will be. Plus it will be good since she knows many of the kids and counselors that go too. I know we will also have a few doctors appointments and the SBAI annual picnic too. Love spending time with other Spina Bifida families. I'm sure there will be many more things that we will do, it is already filling up quickly!

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Skiing 2

Skiing

Maria and I took off work and school today to go to an adaptive skiing event in our state. We got to see several friends today too. The event was put on by Adaptive Sports Iowa with the help of Adaptive Adventures out of Wisconsin. It was so much fun!

Since Maria has a good sense of balance and core strength (it has really improved since she came home) she was placed in a mono ski (meaning she was balancing over one ski verses two). She spent most of her time working with the head of Adaptive Adventures, LT on the bunny hill. LT was impressed with Maria's listening and how quickly she caught on to the things being told to her. She also saw Maria's perfectionism and cautiousness. We ended the even with Maria making two runs down one of the bigger hills with the head of our group in the state. She did amazing and had so much fun!

 

 

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Love

So many times I feel like we use the word love to causally.....we love things, food, places, events, animals, people. It seems to be a word that easily comes out of our mouths without much thought or consideration. Love has never been a word Maria has used causally. She has understood the importance the word holds, probably a lot more than I do in many ways. Maria tells me frequently that she loves me and "I will love you forever, mom." Sweet and precious words from my 13 year old. In the 19 months that we have been together she has also learned that love also means being real.....she may not like something I say or do and yes, I'm even called mean mom at times. But through those moments we continue to build our relationship and family. Those moments tell me that Maria feels safe and comfortable to share her true feelings with me. She is honest about her likes and dislikes (although she tries her best not to hurt anyone's feelings). I'm so blessed to have such a loving kid. Today she was leaning on me at my parents' home. Content and happy just to hug me.

She is also growing in other ways. She is becoming more playful with our cats. Before Maria would always be afraid that they might hurt her. The has learned the way to tell if they are upset or playful. Recently she has started using her bare or sock covered foot to play with Libby when Libby is resting on her wheelchair. She has also started to express her feelings for our cats, by telling them she loves them when they choose to come or be with her. It might seem silly, but I really saw this as a step in expressing her feelings more. Funny enough the cats also show her their love in their own way....Libby insists on curling up on her wheelchair on days she takes a break from her braces and also every morning Libby is in the bathroom sink hanging out while Maria gets ready for the school day. Pippin sleeps on Maria's rug or wheelchair and will even tolerate being moved from room to room on it. Bogart will visit Maria in the bathroom to rub against her leg or will wait on her desk and then promptly move to her desk chair preventing her from sitting down just so she has to pet him. Even my parents' pets show Maria love in their own way. Animals are so therapeutic for kids....Maria loves having our pets.

 

 

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Mish Mash

Well, the other week on Facebook a friend who was in Bulgaria posted a picture of her dinner wanting to know the name of it. It was moussaka, a potato, tomato and meat dish. I showed Maria the picture and she has been asking for it ever since. We are planning on trying to make it some time soon. Since it takes a little longer to make, we decided to try making a different dish tonight. We made Mish Mash....and it kinda looks the way the name makes it sound. Maria was thrilled to have it tonight and even had seconds (which is how you know you have a hit with her). It is also a very simple Bulgarian recipe to try.

Mish Mash

1 red pepper (chopped into small pieces)

1larger or 2 small tomatoes ( chopped into smaller pieces)

1/3 cup feta cheese

4 eggs

Place some oil in a frying pan and place the peppers in it to begin cooking. I waiting a few minutes and added the tomatoes which you are suppose to let cook until all the water from them is gone. Next you sprinkle the cheese over the peppers and tomatoes. Then you quickly pour the 4 eggs over top (the directions said not to pre scramble the eggs). I stirred this over a medium heat until the egg was cooked. Like I said very simple recipe and very yummy.

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