Happy Easter

Hope that everyone is having a happy Easter with their family and friends. Celebrating the death and resurrection of our Lord. This year has been different for us. Last year we were at church celebrating, but this year with Maria recovering it is harder to get her places. So, we had a nice quiet morning at my parents' home. Talking about Jesus and the importance of today. She did get her Easter basket and had fun looking at what was in it.

We also had a follow up appointment on Friday with Neurosurgery and Plastics. She started off with a brain MRI, followed by chatting with her neurosurgeon. So far everything with her shunt looks good. The fluid has decreased some, but the main reason they wanted the shunt there was so that there wouldn't be extra pressure on her spine from extra spinal/brain fluid. Right now it is doing the job it is suppose to do and they are happy with how she is doing. In fact we don't have to see neurosurgery for 6 months! We talked a little more about the surgery and from what her neurosurgeon said about everyone in the hospital got to see her MRI and CT Scan of her spine. They also said people were in and out of her OR all day long asking what they were doing and getting a glimpse of how uniquely Maria's spine was created. Plastics was also happy with how Maria is doing. We will see them again at the end of May. I do love that we go to a learning hospital where so many different people have a chance to cross our path and learn from Maria.

Maria continues to do well. She is her normal happy self, unless homework is involved.

 

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Post surgery check ups

Maria has been out of the hospital over a week. She really is doing wonderfully from our perspective. She is happy and her normal self. Total teenager about some things and goofy silly about others. Caring for her right now is different....in some ways it is hard, but she complies even when I know she doesn't want to. There have been some concerns along the way. The first came Monday when part of her back was quite red, no fever or anything. My mom sent me photos of it and I sent them to her coordinator of care, Lindsay (she is awesome). Lindsay immediately emailed them to Ortho and Plastics and sent me an email telling me what she was doing. The Plastic surgeon was the first to call and wanted to jump ahead of any infection. Thanks to all the speedy work Maria has been on antibiotics and has gotten no infection! The next surprise came on Tuesday.

 

Notice anything? Well Maria has always had a difference in leg length. Before it was around 3/4 inch. Now it is closer to 4 inches! I was shocked....not prepared for it. Thankfully Ortho called me about 2 minutes after my mom pointed it out and I made sure they knew. From what they explained to me by straightening the spine the pelvis also got straightened and now the noticeable leg difference. Everyone seems to think it will be no issue....her right shoe will be built up more using a lift.

Friday came with our first round of post surgery check ups. We saw plastics first. They were thrilled with how things were looking, but also plan on seeing her next week too. We then had time to kill at the hospital. We ate lunch and headed down to Ortho. Met with our surgeon and a couple other Ortho surgeons made sure to stop in and say hi to us. Maria had X-rays done and everything looks great. We don't have to see Ortho for a month! My mom was so relieved....she has been so concerned about Maria's back and hurting her (which hasn't happened). Everyone continues to be amazed by Maria. Maria also got a special bear at her Ortho visit....one with it's own back brace. Yes, she got a big kick out of it.

Maria has been working hard on her school work and making a new friend. A friend that brings his own special kind of healing and she is loving the attention.

Did I mention he helps keep her legs warm? Well he does and she loves it. Maria also has gotten several gifts from friends. Balloons from New York, flowers from our friends in Chicago, and a fun box of goodies from Indianapolis friends. Maria discovered the Silly Putty and hasn't put it down since.

 

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The slow road to healing

This was another long week, although better without 29 hours of surgery to get through. It was a week of my mom learning how to care for Maria. She is going to stay at my parents house since is is more handicap accessible than my house. We were told Maria would be released on Thursday. We were ready to get out....then the Ortho decided he wanted Maria to have a back brace to ensure things heal well and no screws move out of place. This meant another day of waiting. Honestly, I wasn't happy....I was mad and frustrated. We all needed to get out of the hospital for good. But sometimes God has a bigger plan. It just happened that another adoptive family was at the hospital too, they had learned their child was going to have a similar surgery to the one Maria just went through. We were able to meet and chat a little. They saw Maria looking happy and healthy, although in the bed. It made the disappointment better. Maria also got to have some college students come by to cheer her up....one played a game with her and the other had drums and a guitar.

So Maria did get discharged in Friday. Now we are figuring out how to do things all over again. Maria cannot bare weight on her feet/legs at all for at least 6 weeks. She has to lay flat, on her side or can be elevated at a 60 degree angle. This isn't as much as one might think. We are having to use a Hoyer lift with her. There is little Maria can currently do for herself. It is hard, especially when we have focused so much on her independence. But I know this is temporary....she will regain her muscle strength through hard work and will gain back the independence that is temporarily lost. At the same time, she has little to no pain....actually only gets uncomfortable at times. She is working on catching up on homework, although she will be on home bound instruction for most likely the rest of the school year. So, we have a new reality....it isn't fun, but in the end Maria is worth it and we are ready to see her healed and independent again.

 

 

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