Formed By God: April 2013

I love the verse for tonight's blog post. Our church did a footprint of Gracie on Easter Sunday, and this was the verse that went along with her print, replacing the appropriate spots with her name. It couldn't be more perfect for her right now....she IS happy, and she DOES fall, a lot right now too. But I truly believe that God DOES have a grip on her hand. I feel like He is pretty much the glue that is holding us all together right now. I was hoping to post sooner, and really keep everyone updated, (and the posts maybe a little shorter, LOL), but its just been too hard. By the end of the night when I get a chance to post, I'm really wiped out. The energy that it takes to keep calm when things go crazy, and hold it together is really taking a toll on me. So, instead of blogging I veg out.

We were very blessed to come home earlier then expected from Baltimore, and got home about 2 weeks ago. Coming home was kind of a roller coaster, as we went into the docs office with some concerns (possible pin infection, Gracie was very upset and hurting, and a strange popping noise that her fixator was making when we made the turns). The infection was being handled, but they took xrays to double check what was going on with the fixator. Turns out that the arrow that showed us the direction to make the turns had been placed incorrectly and we were making turns in the wrong direction. Essentially we were pushing her bone together instead of slowly pulling it apart. This was the reason for her pain. Dr. Standard and the PA both agreed that the popping was occurring when the tension was too tight and the fixator was pulling back. The bad news is she was in a lot of pain. These turns are done slowly, with 4 small turns a day. The pull back did the equivalent of about 20 turns at one time. The good news is that God's protection was covering her even when we didn't know we had something to pray for. The bone was pulled apart at the point they were actually wanting it at....we got to stop doing any turns, and that allowed us to come home. Over a week earlier then anticipated and just in time for Easter!!! I have to say that I really love these doctors/PA's and staff! This was a mistake, but everything turned out fine. Also, when I took Gracie in, she was not acting like she was at the house. Kind of like taking a car to the mechanic. She wasn't miserable, and seemed just fine, so I really appreciate that they listened to my concerns as a mother and double checked her leg.

We all have been doing good considering, and have been SOOOO happy to be home. I felt glad to be back immediately, but it wasn't until Sunday, when we walked into church and FINALLY were doing something that was a normal part of our routine, that I felt like we were really home. That being said, things have taken a step back this last week. Gracie had mastered re-learning to walk, and up until about 4 days ago was getting around pretty good. We noticed the infection on her leg had never completely gone away, and had gotten worse. The docs in Baltimore wanted us to start another round of antibiotics after only being off the other for one day. The set back with the infection progressed and by Wednesday night she was in serious pain. She was refusing to crawl or walk. She could barely stand. We had almost completely weaned her from her pain meds, and had to restart everything...in doses close to when we were released from the hospital. She hasn't been sleeping good, and it just got worse. When you picked her up she just cried in pain. I got ahold of Dr. Standard on one of his web chats, sent him about 10 pictures because it really looked like the infection was getting worse, not better. He agreed after just looking at 1, and they changed the medication Friday. The thought is that Gracie has MRSA. We saw her pediatrician to have the sites cultured and verify that the new antibiotics will actually work on the infection. They also decided to give her a shot to "jump start" the antibiotics. Good in theory, but Gracie had a reaction to it, and her good leg swelled to the size of a tennis ball at the injection site and got red. Yesterday was a big day of observations. We are just now 24 hours in to the meds, and Gracie has started walking again, so I think they are at least helping. The redness has not gone away and her pin/wire sites are still seeping, so....not really sure. The injection site is looking better though, so that's good. If her infection is not remarkably better by tomorrow, we may be headed to Phx Childrens ER for IV antibiotics.

The same day that Gracie's infection started getting worse, I spent half my day at DES trying to get our family some financial assistance since Robert is now the only person working. Turns out we don't qualify for anything. I was shocked...I can't imagine how a family of 4 is supposed to make it on a teacher's salary. It just amazes me. Plus they refused to take into account any of Gracie's medical bills or situation because of the way its being billed. I walked out of there crying and came home to Gracie in horrible pain. By the end of the night, I was in my bedroom breaking down. The stress of losing my grandma, losing my job, and Gracie regressing was just too much. I still have not gotten a chance to really grieve losing my grandmother and it was just a very hard night. This new, aggressive infection has just added to our stress levels. I was prepared for this journey to be a struggle at times, but I was honestly, not at all prepared for infection after infection and to be dealing with doctors from the other end of the country. It is so hard trying to work with them from here. They do an amazing job...but not being able to be right there, make an appointment and see them in person, is hard. It's a challenge I was not prepared for. I'm really grateful that they do so much to make it as easy as possible for familys' to return home....I just wish it was an easier time for us right now.

Last night, Robert and I decided that we needed a night out. We really didn't care if we went bankrupt for going out...we needed to be husband and wife and not caregivers. So, we went and ate dinner and made a rule (got the idea from some good friends of ours), that there would be no talking about the kids, Gracie's medical condition, or money. I was honestly a little scared that we wouldn't have anything to talk about....lol....BUT, we had an amazing time!!!!! We ended up skipping the movie, (we'll wait till its at Redbox), but we had so much fun.

Today, Gracie still has her infection, but she is walking again and is starting to feel better. I'm hoping tomorrow is a miraculous improvement and we don't end up in ER, and that this coming week gets easier. My body is feeling the weight of everything going on this last couple months, and I just need a break from this part of our journey. Even in the middle of everything, I have been so blessed by cards/texts/prayers from our family/friends and church family. I know that we are not alone in this, and that really helps. I also believe that God has His grip on all of our hands....and feel like He is building a sermon in me from this. Hahahaha. Seriously though, there is a strong testimony building in our family and I can't wait to see what God does with all of this.

Please be praying for the infection to stop spreading...to go away and NOT come back. We also would ask for prayers for God's direction, provision, peace and healing in our family, and for us to keep our focus on God, and not our circumstances. He has been so faithful in everything He's done for us so far, we need to make sure we remember that He is in control!!!

(Look at our fundraiser tab for information on an upcoming 4/29 fundraiser for Gracie...more info on facebook group too)!

Here are some pictures of our time back home, and a video of Gracie dancing before the infection got worse. This girl shakes her booty any time music comes on!