HOME again, day 44 Upcoming Birthday!!!

We made it home, and although our traveling day turned into two days of travel- we were beyond blessed to be able to see grandparents, aunts , uncles and cousins! Wynter is happy to be home and we are talking daily about her upcoming 6th birthday on April 27th! I think we will do an "open house" type birthday- were people can come and go as they need to- but can come by, eat, celebrate Wynter  in person! She will love all the attention and company and I can think of no better way for her to celebrate her birthday, than with e everyone that loves her and has been thinking about her and praying for her this whole time. So....as I work out all the details, please come join us Saturday, April 27th from 6-? for some food, cake and celebrating Wynter and all that God has created her to be!!! See you all soon! :) And thanks for all the continued prayers and support!!!

DAY 40- Update from Philadelphia... post the unspeakable

Wynter and I had a very long 13 hour travel day yesterday, bit after going through a scary, bumpy storm, we made it to Philadelphia safely. Thank you all for the prayers. We met with Dr. Samdani, Wynter's neurosurgeon; the plastic surgeon; orthopedic surgeon; orthotics twice and had 2 sets of X-rays done.

Cervical spine: Wynter's internal hardware is stable- PRAISE GOD! Challenge: her neck needs to remain completely immobile for quite a long period of time still - to allow full healing to the bones and hardware. So, as you can see in the picture below, she is in a vest/ collar to stabilize that has been reinforced in the back to help keep her stable- if it doesnt work well enough- then we will have to order and get re-fitted for the one in the black and white photo (bottom R corner). So we appreciate the continued prayer for safe/ good/ complete healing to the fusion.
Head wounds/ screws: The surgeons were amazed at the great wound care that she had been receiving, and that coupled with the infection clearing up- he lightened her daily care regimen to those areas. YEA!!!! He wants to have weekly picture emails so that he can monitor her healing, and said that after her healing is compete- we can discuss plastic surgery at that time. The skull fractures from the screws being violently pulled out- will heal with time.
Head tilt/ eye and ear pain/ balance off: They are optimistic that these issues were caused by the infections and trauma, believing that they will subside with time, but requested that we monitor all these little issues to monitor as they would prefer to error on the side of caution.
Knee: The X-rays of Wynter's knee looked okay. At some point when she requires sedation for something, we will try to MRI her knee to check for any tears- and just monitor her in the meanwhile and see if the problem/ pain persists.
Additional X-rays: Praying that we will have an UNEVENTFUL 6 weeks until Xrays need to be repeated!
Again, Thank you all for ... EVERYTHING!!!

Day 34: NIGHTMARE!!!

 Tuesday April 10th: The respite care provider called to me- First words out of my mouth "Is Wynter okay"......pause...."NO" she responds....it would be 30 minutes before I realized the FULL extent of the horrific trauma that had taken place. I'll never know why, but Wynter was on a swing in our backyard...the swing broke- Wynter- in her halo and body cast- fell to the ground. Wynter never cries....she has broken a bone and gone through surgeries, and she NEVER cries for pain! But now, I could hear her screaming in the back round... By the time I saw her I saw it.... all of the screws that were in her skull holding her halo and body cast in place, had all been pulled from there placement, mangled and moved elsewhere on her head. Her neck, that was fused from her skull down to her C2 just 34 days ago- had been twisted and contorted in a very unnatural way and she was stuck there. She was still screaming- I grabbed the emergency key to pull the halo vest off- by the time I had it unscrewed- everything came off. I grabbed a cervical collar and put it on immediately.....There was blood and injuries all over her head. She lost bladder control- we were both soaked. The ambulance let me hold her in place on my lap to keep her immobilized, as they put me on the gurney and we raced down the highway. They couldn't get her sedate fast enough, she was still screaming...The hospitals here are not familiar with C0-C2 fusion.....they were at a loss and they had no X-rays to compare to despite me having the Neurosurgeon in Philly on the phone with me! At least she had pain meds now, so they left her in the cervical collar and sent her home after a lazy attempt at cleaning all her wounds. We were told to watch for neuralgic damage, that she had many probable fractures in her skull due to the screws all being violently ripped out of her head...and lots of medications......To wrap it up, THANK YOU for all the prayers. Right now we are keeping Wynter on heavy pain meds and valium....but she is still hurting badly. Wound care, has been impossible for us- too many areas to clean and pack and she fights back so hard and pulls out the areas we did as we try to work our way around her head to all of the holes- we need to try to get wound care coming out to the house to help, guess I ll be on the phone tomorrow. I cleaned and wrapped it for now. The fractures (from screws being ripped out violently) will heal on their own (just painful). Cervical collar helps keep her stable- although she has too much movement for being only 34 days post op! We still have a few small neuralgic concerns (like she couldn't walk when we got home- hospital dint even check), I am hopping and assuming it is just her equilibrium that is off as she seems to be improving.... and then there is the concern for infections. PRAISE God for his protection, as we know how much worse this could have ended up. S0....We fly back to Philadelphia this weekend and hope to have more answers on Monday. Thanks for your continue prayer.

DAY 33: Another infected pin

Thank you all for your love for Wynter and questions as to how she is doing. We have had an uneventful week- which we were thankful for. The kids got to build a bird feeder at home depot, go egg hunting, and take blue bonnet pictures....Last night I noticed that one of her screws in the back was now starting to look infected. I spoke to Dr. Samdani, and he said to start the antibiotics again, and if they dont work- we will be flying back to Philadelphia, back to the hospital very soon.  Despite all the cleaning and screw care- this is the nature of the beast, and the challenge when wearing a halo.

Please continue to pray for healing, and for her safety- she is an energizer bunny with no fear- so she is trying to do WAY more than she is allowed to- and it is impossible to always have eyes on her.  As you see in this picture, she wants to go go go and get away from us as fast as she can.....

DAY 20 UPDATE-

Thank you all for your continued prayers. We arrived home Thursday night and were greeted by Home Depot and a renovated house complete with welcome sign, balloons and flowers.  Friday morning we were in the Dr. office after a call from Wynter's Neurosurgeon in Philly ( Dr. Samdani) stating that the antibiotics and protocol was not working and the infected pin/ screw needed to come out ASAP. So we met with Dr. George (pediatric neurosurgeon here in Austin) and he booked an OR for that next morning. Saturday we went back in to the hospital and had the screw removed, the hole cleaned and PRAISE GOD no screw was added anywhere due to the halo being very stable. The  wound is large enough to fit your finger in and we can see her skull.... Right now we are doing wound care twice a day, which is very painful for her.....And we will have to be meeting with a plastic surgeon at some point.  PLEASE continue to pray for no more infections and that THIS AREA will HEAL quickly and completely! Wynter remains on her medications  but is in good spirits and is as hard as ever to keep up with.

DAY 11: INFECTED PIN

We had a good weekend, Wynter is slowly getting the hang of this balancing 10 pounds on your head thing. :) She had PT again today- as you can se it takes 2 adults to chase/ keep up with her :) I WAS SO PROUD AND AMAZED this morning- while waiting to see the doctor, Wynter drew a picture of Zac and herself- adding her halo and long hair- WITH OUT any verbal cues- she did it TOTALLY spontaneously!!!! WOW!!! I love this kid! She is so smart!
Unfortunately, by saturday one of her pins started to look red, and by Sunday it was a icky mess. We bought a medical scrub to wash her head and hair in, plus a saline rinse to try to keep infection away- but we had to go back to the hospital today to start her on 10 ml of antibiotics, 4 times a day for the next 7 days.  We know that the risk of infection and a fall are the TWO big things we have to battle against for the next 8 weeks...but please be praying with us that this clears up and that she does not have any future problems with it. It is painful and dangerous. Thank you!!! AS long as this clears up and does not get worse- we will be free to fly back home at the end of the week! YEAH!!! Dad and Zac left very early this morning, and caught some snow on their way out :) We are supposed to get a snow storm tonight- which I know Wynter will love- praying its gone before our flight.

DAY 7&8- Taking it easy & having a little fun

Wynter continues to steadily do well, with small ups and downs each day. The 3" incision on her hip where they tool the bone graft from tends to be pretty painful, and requires us to change her position every 2 hours. Her body cast also tends to rub and aggravate that area as well. She is still on Oxycodone every 5 hours around the clock.  We do physical therapy to help her continue to learn how to balance daily activities. She is still in her wheelchair a lot, and when she walks- she uses a walker with a very "hands on" approach :) The name of the game for the next 6 months is NO FALLS.  The swelling is almost completely gone in her foot/leg- praise God- that was the scariest part of this whole thing (and obviously most painful for her). Poor girl. Honestly, she is so strong, so brave, and an amazing trooper! I couldn't be more proud of her- she teaches us all so much!  Trying to keep her mind off the pain and motivated to get up and around, we have taken her to the New Jersey Aquarium, and the Philadelphia National Constitution center.....very neat experiences and she has loved it! Such a blessing to be able to have some things to distract and reward  her with.  We have yet another appointment on Monday for physical therapy and to see the Dr. So we should have another update then.  Thank you all for your continued prayers and support! Enjoy the pics!