Streams in the Desert: Maria update

So the last few weeks we have been busy. A big part has been getting use the the new braces. Maria was doing great....not overly fond of the stairs, but adapting well. Over the weekend we went to Chicago for my honorary niece's 10th birthday. Her one request was that Maria be at her birthday....couldn't deny either of them that. So, we embarked on a fun no schedule weekend.....BIG mistake! I really found out how much Maria needs to maintain a schedule and ensure that she gets 9-10 hours of sleep a night. Needless to say she has been grumpy this week.

Ok, so the weekend was actually a lot of fun. 8 girls were there (including the birthday girl) on Friday night. They decorated masks (the theme was masquerade) and they got fun tulle skirts to wear around. After pizza, cake, ice cream, candy and two movies they finally went to sleep.....yeah, I'm pretty sure it was after midnight....and they were up by 7am. Saturday after the girls left my other friend came over and we went to Avenue BG (Bulgarian restaurant) for lunch. Maria was VERY excited to get her favorite soup tarator. We then went to the Bulgarian market where we found banana juice and banitisa (both were things Maria wanted). We also got lots of other Bulgarian treats. Ok, so I have to say that I find this rather funny....when we were in Bulgaria people didn't realize that Maria spoke Bulgarian unless I told them. Same thing happened at Ave BG and the market. The market was rather funny....I was trying to get Maria to choose a treat to take to her class for her birthday next month. I finally asked one of the workers what they would suggest...explaining that Maria is from Stara Zagora Bulgaria and we wanted a Bulgarian treat for her birthday. They were surprised and asked if she spoke Bulgarian...Maria said yes of course, but wouldn't talk to them in Bulgarian (kids! I swear she has not lost any of her Bulgarian....just rather shy around people she doesn't know well). Anyway, the worker I was talking to and another worker are also from Stara Zagora. They were so nice and helped me find a yummy treat for Maria's birthday. They even gave us a few Bulgarian calendars so that we know when all the Bulgarian holidays are and Maria can write special things on it. They also told Maria in Bulgarian and English to tell me when she wants to come back. Still find it funny that people automatically assume that she is my biological child and speaks English....at the same time I'm honored that they see our bond and the similarities between us. After the market we went back to my friend's home where we were staying....it was raining so, we were unsure what we should do. We ended up having a fire outside where the kids got to roast marshmallows and make s'mores. It was lots of fun.

The fun ended as we headed home. Maria was extra whiny and grumpy. Ok, she was really tired! Monday she went to school fine and then I got a call...Maria was refusing to go up stairs...it was a didn't want to it was a couldn't do. She was so tired that she did not have the energy or strength to use her new brace to go up the stairs at school. It was bad enough the school didn't want her attempting to go up the bus steps, so I had to get her. From the moment we walked out the doors, she started to cry and cried over half way home. Yup, one tired girl! So, she went to bed early that night and I took her the next day to her 2 week follow up on her new braces. I was prepared to request that they put a lock back on the KAFO....it made me sad to give up on the current brace, but I felt Maria needed the lock. Saw the ortho....he told us he saw Maria on the news for the Walk n Roll for Spina Bifida and then took us back to the room. I was able to explain what had been going on and he said that he saw that she wasn't as stable on the new KAFO and needs the lock....I was so relieved....really thought I was going to have to fight that one. So, the new brace will be ready in 2 weeks! Yup, she is getting a remake. Right now she is back in her old KAFO with the lock....if she needs it for stability then she needs it.
Ok, so now for pics