Dominic's journey

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!! 

Just a few details of the past two days…      Thursday...     After we were discharged on Wednesday evening we headed over across the street to our hotel. Dominic fell asleep soon after we got there and slept all night except for waking up when we needed to give him pain meds. It was amazing what a good nights sleep did for him and us! He woke up so happy and full of energy. He spent quite a few time playing on the bed and figuring out how to crawl and manuever around again. It felt like God gave us a little touch of love when we looked out our hotel window and a vibrant double rainbow filled the sky! He’s given us so many confirmations along the way and that’s special. We made a quick trip to Aldi in the forenoon and than anxiously waited until 3:30 when Tony and Judith were due to arrive with our girls, Zoey & Hazel. And what a happy reunion it was! Dominic giggled and was overjoyed to see his sisters.   By 4:00 we headed over to our Airbnb which ...

  Wow! This is a miracle! To be released the day after surgery is not very common but he has done so well and many people have prayed.  We were released from the hospital at 6:30 pm and moved down to our room in the hotel here on hospital campus so we are still close-by. We now have our own space and no nurses to disturb our “currently” sleeping little man. He also slept fairly well last night but a hospital room is never a very comfy place to sleep.  This is some of the things he did today. His pain has been fairly manageable with Tylenol and Oxycodone on a regular schedule. The pic in the wagon gives you an idea of how a little guy looks when he’s doped on pain pills. But he also has moments of being pretty happy and playful.  Also many moments like these! (And the lolipop was sugar-free) These are the best pics I have currently of the frame. This is the bottom ring and there is one more that goes around his leg right below his knee. The frame will be on for about ...

6:20 this morning  Last words with Dr Standard before surgery Mama got suited up so she could go back with him to OR. But only till he was asleep!                    Headed to OR!   This will get any mom or dad right down in your gut! Waking up was a bit of a struggle but when he did he was soooo thirsty! 😍   I am writing this from the reclining chair of our room in the children’s section of the hospital. Currently Dominic is sleeping so I will attempt to explain a bit of what was done during surgery. One bone incision was made at the top of the bone curve in his tibia. This is to allow the bone to move and straighten as the external fixator is adjusted daily. The fixator (or frame) consists of steel pins that run through his bone at the top and bottom of his tibia and also through his ankle. They also made a cut between his tibia and unstable ankle and inserted a bone wedge or graft to turn his ankle in to a straigh...

    It’s January 2nd and we are on our way back to Baltimore. Surgery in dec also was canceled due to RSV outbreaks and the hospital being full.. soo here we go nearly 3 months later! No covid test or pre-op appointment is needed this time so we will arrive at the hospital hotel this evening and be in the hospital at 6:00 tomorrow morning to get checked in for surgery. Please pray that Dominic would stay healthy and that surgery can continue as planned.        Thanks. Justin