Dominic's journey

 Good evening to all! We've been fairly silent the last few days but I will try my best to give a accurate picture of what's been happening. It's been one of the most stretching times of my life, but God has given me so many blessings in the midst of it all!  Dominic's cast was put on last week on Friday, 5 days ago. He adapted well in the beginning but after a day or so he started having some real muscle spasms especially at night. He would wake up screaming and throwing his leg around and clearly in pain. We normally gave him oxycodone and that would usually help with the spasms and he'd be able to sleep good after that. It will tear up a mama heart to watch your child go thru that.  Monday took us to Shriners to pick up his KAFO (knee-ankle-foot orthotic) for his left leg. We have about 3.5 hours to Shriners in Greeneville, SC and on the way down there he dozed off and woke up minutes later in spams again. We gave him oxy a few times that day but it never seemed ...

This morning found us at the hospital bright and early at 6 am. Registration and pre-op exams went smoothly and by 8 am Dominic was being wheeled back for the surgery to remove the fixator and Dr Standard also wanted to check on his big toe on the right foot to possibly straighten it during surgery. He ended up not doing anything to it because he was afraid it would hinder the movement that Dominic has with his toe and will need for walking.  Justin went back to the OR with Dominic and I was told he fought the mask a bit when they were trying to put him to sleep. It didn't take real long and he was out!  About an hour and 20 minutes later we were called back to the PACU unit and Dominic was out of surgery but hadn't woken up yet. We waited another 45 minutes until he woke up. This time they tried to make so he wakes up slowly since it had not gone so well the last time. When he had the surgery to put on his fixator he woke up crying and could hardly be consoled. It had taken u...

 Hello to all!  It's been a while since we updated on here. Weeks flew by as we learned to deal with Dominic's fixator and how to properly care for him. It was not without it's trials but mostly we could continue on normally with life. He had two rounds of pin site infections and he took alot of care over that time. The last few weeks he's been really confident with his leg and it took alot for it to hurt him. He took tumbles off the bed and couch recently and just wanted to do it again! We all learned to fear his fixator, especially his sisters, when Dominic got in his crazy moods of throwing that thing around and crawling all over us.  On February 24 we took xrays on Dominics leg and were so excited to hear these words from Dr Standard- "It is time for removal." They scheduled us for March 10 and that seemed far away at the time but here we are!  This evening we had the privilege to meet up with sweet little Phillip and his family. Phillip had the same surge...

This morning took us to Shriners in Greeneville, SC. We have about a 3.5 hour drive so compared to driving to Baltimore it’s a breeze! Our main reason for going was to see if we could get an accommodative prosthetic for Dominic’s left leg. We met with Dr. Westberry and he got us set up for that. As of now plans are to get him up and walking with a prosthetic where the knee can be in a locked or unlocked position. It will basically be a prosthetic leg that his left foot and leg will slip into. That will help to determine whether his knee is stable enough to do a below the knee amputation or if it needs to be done above the knee.   After we met with the doctor we headed over to the prosthetics department. They made a mold for Dominic’s left leg while we were there but it’ll be 6 weeks before his prosthesis is ready. We are hoping that in about 6 months we can do the amputation and then go with a regular prosthetic after that. We feel good about this plan and are so excited about se...

 Just a quick update on our trip to Baltimore today… We had been turning Dominic’s fixator three times a day to straighten his leg bone and periodically sent pictures to Dr Standard. He told us to come today instead of waiting a week as had been planned earlier because it looked like we were done turning. We did one turn yesterday and then were told to wait until X-rays today and see if it’s straightened out completely.  Our hopes were pretty high that we could be done turning but not so! We have another week to go. Since Dominic had a rough week and very restless nights we asked them how we can do another week of that! Dr Standard suggested we do two turns a day this week and one turn a day next week. We are hopeful this will make a big difference in Dominic’s discomfort he was having! Dominic did get a pin site infection last week as well and I’m sure that also factored into him not feeling well.  We have an appointment at Shriners in two weeks from today and while we a...

 It's delightful to be able to write this in the comfort of our own home. We had wonderful accommodations while we were in Baltimore but there is nothing like home. I asked my girls today which house they like better (out of the three they've been at in the last week) and there was no hesitation to say, 'our house'!! Once today Hazel blurted out ''I'm excited!'' so I asked her what the excitement was all about and here she was excited to be at home. I think maybe she heard her mom making similar exclamations yesterday. :) I know it was just a week but somehow it felt like we were gone a very long time.  We had Dominics appointment at the clinic yesterday at 9:30 but we didn't leave there until 12:30. Lots of waiting but that's all part of it. We were able to talk with his Dr again which was great. He is so helpful in giving advice on what he would recommend we do for Dominics other leg. We do have an appointment at Shriners at the end of the ...

Grandpa and Grandma came this morning. It’s been great having people come to visit.  Dominic was able to have his first bath today since surgery. We took out all the gauze and sponges and were able to really see how these pins and things look in his leg. View the next couple of pictures at your own risk😬 On the picture below you can see the vertical hinged rods in the front and the rod at the back of his leg. The one in the back has a nut that gets turned to do the straightening. Once the turning is finished the rods in the front will be straight.  The incision on his foot was where they removed the small toe. The one on his leg was to work on his ankle.  Very possibly we can go home tomorrow!!