Formed By God: December 2014

Last Sunday Gracie and I traveled to Baltimore to meet with Dr. Standard. This was a scheduled post surgical follow up from her tendon transfer/plate removal surgery in June. Gracie, as usual, did great on the plane. We had a total of 3 flights, leaving the house at 5am, and not getting into the Hackerman-Patz House (HP House), until 7:30pm that night. We were exhuasted to say the least. I was trying to figure out what to do for dinner when I got a phone call from a friend in the area. She was kind enough to drop off food for Gracie and I, and we were able to eat a fresh meal as soon as we got there. It might seem like a small thing, but we had airport/airplane food all day, and we were wiped out. To not have to drive for take-out, be able to relax and settle in, and enjoy some good food was a HUGE blessing. Not to mention it saved us a bit on our strict budget.

Last Monday was Gracie's appointment. She was so excited to see Dr. Standard. When his PA came in, she again, said, "No, I want Dr. Standard." The PA laughed and said he would be in. Then distracted her very well and looked Gracie's leg over. As soon as Dr. Standard came in, Gracie literally jumped out of her chair and gave him a hug. This is such a testament to the kind of man, and doctor he is. With rare exceptions, Gracie only gets to see him when he is getting ready to do another surgery. The fact that she doesn't associate pain, but joy with this doctor fills my heart. I don't think I could handle it if she was terrified of him every time we came in. Anyway, as soon as he saw her foot and leg he told me she was going to need another 8-plate...sooner then later. Exactly what I had been thinking, but dissapointing to hear. I wanted so badly to be wrong. He also agreed that the screw in her foot (from the tendon transfer), was sitting up too high and could use being shaved down a bit to be more comfortable for her. He was thinking surgery in January. For us, that is complicated becuase we move over to the new Obamacare insurance mandate in January. We will still have private insurance, as we don't qualify for the cost share...but its under the new laws/rules. This means our visits are limited and our co-pay/deductible go up significantly. Seeing as how we have already met our deductible and max out of pocket this year, I asked if there was any way to do the surgery while we were there. (We do not have the resources to travel back out there again, rent another car, pay for more food, the HP House, etc....). He said he was completely booked the next day, and then remembered a note on his desk. Left to check it, and when he came back said there had just been a cancelation that morning, and he could squeeze her in. I was so happy and so heart broken at the same time. I can't describe the guilt I felt instantly for asking if we could do her surgery. I was telling him thank you, and saying, "I bet you are wondering what kind of mom asks for her child to have surgery." I explained the insurance issue thru tears. He was so wonderful to comfort me. He literally had at least 4 other patients to go see and he stopped to remind me that insurance will always be a part of her treatment plan. That its a necessary evil, and that I wasn't asking for anything he didn't already say we needed to do. I told you he was amazing right!?!?!?!?!

Gracie and I left to prepare for the next days surgery, and his office went to work getting approval from our insurance. As hard as it all was, God's hand was definitly there. From the last minute cancelation, to approval from insurance, to Miracle Flights changing our flight home, to our stay at the HP House being covered, and to extension of the rental car. We didn't have money for extra food, lodging and transportation, yet it all worked out. I also want to thank a couple of annonymous donors who deposited money into Gracie's medical fund. You blessed us more than you realize. It allowed me to get her a small pre-surgery treat (something we try to do every time), and covered the rental car and food. Gracie and I enjoyed a nice lunch and then I took her to the Disney Store Outlet (her first time in that store) for her treat. She was in heaven. Lots of ooohs and ahhhs. She finally settled on a stuffed Bullseye from Toy Story. Another blessing from God, it was 50% off and only $10. Its pretty rare to find something decently sized for $10 at the Disney Store. It was a total score, and Bullseye accompanied her into surgery the next day.

Pre-op went well, Gracie and I are kinda becoming pre-op camps. We have a system down and it was fun. The PA remembered that Gracie loved Frozen, and pulled up Let It Go on her iphone as we were wheeling into the OR. By the time I laid her on the bed and put the mask, (her microphone) over her face, she and all the OR nurses/techs were singing Let It Go together. It was just the sweetest thing. I hate leaving her in there, but couldn't ask for a better team to be in there with her. Surgery was about 3 hours, and went well. The plate went in the upper part of her tibia (at or below the bottom part of her knee). Dr. Standard decided once he got in there to drill the screw in her foot down a little more instead of shaving it down, just for more stability for the tendon. Gracie was hurting in recovery but they gave her some meds and that seemed to help. The biggest difference this time around has been how she reacted to the anesthesia and/or pain medication. She has been beyond challenging. I have had to physically restrain her from hitting, biting, scratching, kicking and head butting me. I have been called a jerk and poopy face more then I care to say. It has been hard. It's not my baby girl, I know that....but wow! I am going to have to remain flexible to keep up with how these procedures change as she gets older and feels/understands things differently.

We are now a little over a week post surgery and Gracie is doing good. We are still having melt downs, but they are slowly getting to be less and less. This morning was her first day back at work with me. We were there for 2 hours, (go back later this afternoon), and she was wiped and sore when we got home. It'll take some time but she'll get back to normal soon. Unfortunately we will probably have another surgery shortly after that. :(

Please be praying for us. This is the first surgery that I have had to manage recovery and work, and its stressful and complicated. My boss/job is amazing, so they aren't making it stressful, its just hard to miss and hard to go when she's not exactly at 100%. Also be praying for Gracie's recovery. As soon as she is able we have a script for some intensive PT to help with her in-toeing, (the way her foot turns in and trips her). Dr. Standard said this is something that gets fixed during the first lengthening (cause by her bone being twisted the wrong direction), because its a pretty invasive sugrery. He likes to package them as much as possible. However, since her length is looking so good (YAY), her lengthening could be put off to possibly 3-4 years, instead of 1-2. Neither of us believe leaving her foot as it is for this long is a good idea. We discussed doing that surgery while we were there as well, but he would like to try PT first, and so would I. IF we can get PT to work, we can hold off on this surgery. IF it doesn't, it is likely she will have this surgery when her 8-plate comes out. (We have xrays every 3 months, but the thought is her plate will most likely need to be removed in late Spring or Summer). This surgery requires a 2-4 day stay in the hospital, and probably a week+ in Baltimore. It will consist of another osteotomy (cutting her tibia bone in half), and then manually twisting/turning it into the correct position. Please pray we can avoid this thru PT. If you could also be praying for me, I would appreciate it. The unexpected surgeries are much harder for me to handle emotionally. Typically I experience all my crazy emotions months to weeks before a surgery, and then I'm ready to go...ready to focus on Gracie. This surgery, although I wasn't surprised by the need for it, was unexpected. I was out there alone with Gracie, (while my amazing husband and in-laws held down the home front), and it has taken an emotional toll on me. I am exhausted, stressed, sad, and everything else. Its getting better, but I'm struggeling right now. I wish we didn't have to do any of this. I tried not to get my hopes up about this break in surgery we were supposed to be having, but I must have because I am devestated that we are at least looking at 1, if not 2-3 surgeries next year alone. Emotionally and financially I don't know how we are going to do this. But we have to. And we will. Lastly, please pray for our new insurance plan. I went down and spoke to Blue Cross on Monday. I told the lady there the most important thing I needed to verify was that I got Gracie on a plan which allowed us to travel out of state for her medical care. We did get her on a plan that is a PPO, and that Dr. Standard uses, however we were told that the big push right now thru the government and Obamacare is to not allow out of state treatment. Poor thing, I broke down right in her office. She was patient and just told me to make sure I work very closely with the doctors and the insurance company and push for what I need. Please pray that this is NEVER a problem for us. If it ever became an issue, our only real option would be a huge financial miracle where we could afford to pay cash for her care, or move to Maryland. Neither seems very realistic...so prayers are needed and appreciated. Especially as we are already looking at multiple surgeries next calendar year.

Todays verse is so personal for me right now. I am on a rollercoaster of emotions trying to come down from the last week, and stressing about the next year already. I know I can't do this without the Lord's strength. I'm so very grateful for His presence in my life, but I need to keep focused on continually seeking Him. Only His strength, only His presence will get us thru these trials. Thank you for being patient with my extra long prayer list today. Please let me know if I can be praying for you in any way. Praying for others is one way that really helps me to stay focused on Him, daily, and it would be my honor to pray for you.

I hope you all had a blessed Thanksgiving! We did!!! Between surgery, weather, and rescheduling the flight to come home on the busiest flying day of the year...we weren't sure we'd make it home to celebrate with family. It was such a blessing that we were able to get in the night before Thanksgiving! Definitly something to be thankful for!

A long day at the docs office, followed by the extremely hard choice of which toy to get at the store...wore her out. She choose Bullseye.

When you are in preop and your baby girl wants a crown. Playdough and crayons do the trick!

sleeping it off in recovery

had to have bulleye with her

glad to be back at the HP House where she could relax more

We usually stay a day post surgery in Baltimore. This time however, in order to make it home for Thanksgiving, we had to leave the day after surgery. she was wiped out and in a lot of pain. baby girl had to have my hand right on her face like this to fall asleep.