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!

DAY 5- HARD NIGHT- - GOOD surprise!

Last night was a very hard night. Wynter did not fall asleep until midnight and then I heard her move around 2 am- and she said ouch (WHICH she has NOT said this WHOLE time!) I got up to check her - to realize that her IV line in her foot had infiltrated- basically it blew up her foot and leg- it was hard, huge, and about to bust open- I called for the nurse and began to cut off and remove the IV- Wynter was in SO much pain! I sat up- holding her leg elevated- with ice, heat, and gentle massage until 8 am.   BROKE my heart for her- she was in more pain from this than anything that has been done so far- she couldnt stand touch- it is a huge setback. We got her off all IV lines, all monitors and as the day progressed, she finished her fluids, antibiotics, and everyone decided that I was well versed in how to care for all her needs and that Wynter would do better- by getting out of the hospital early and back to a more regular routine- less stress on her body. SO- they adjusted her walker, wheelchair, and carseat buckles....filled lots of medications, scheduled returns physical therapy visits and Dr. checkups- and sent us on our way. We will stay very close for the next week to ten days, before we will be able to return home. But as you can see in the last picture- Wynter is glad to BREAK OUT!  Thank you Shriners Children's Hospital, local Austin Shriners, and ALL OF YOU for all your thoughts/ prayers/ and support in so many ways! You are all a blessing to us in life changing ways! God bless you all. 

DAY 4: WHO IS THIS KID?

Monday, day 4: Wynter had a good night despite O2 dropping a few times.  Our morning started around 5:30 and the wonderful world renown neurosurgeon Dr. Samdani :) who performed Wynter's surgery came in around 8am. He said he could not possibly be more pleased with how everything looked and said that she was really doing very well. He wasnt here this weekend- but upon his arrival today-gave the staff approval to follow my lead and let her get back to a normal routine, off stuff as she tolerated, and get her up and moving! He is truly a very gifted surgeon and the most passionate Dr I have ever met, re his patients INDIVIDUAL needs! Wynter was weaned off morphine today and is on Oxycotton now. She is drinking and peeing well (although we are still subbing with IV fluids) - she is taking oral meds, still on zofran ( an anti nausea med) but we have not had a BM today- praying for one tomorrow! She had an exciting day because dad and zac arrived to see her- she was SO happy to see them both- hugged and hugged them, wanted their full attention for hours! She gave zac such a big hug- he felt the pain of the screws! He is being very sweet- but I can tell he is struggling a bit- he doesnt like seeing her like this. She wore some clothes, played with toys, AND RODE A BIKE!!!! The freedom concept bike is the bike that I have desperately been wanting for her- and you will know why as you watch the posted video! The physical therapist saw her today, got her the right walker, and the right wheelchair- both good things. Tomorrow they are going to help us figure out the car seat buckles. Dr. Samdani also said that her bone quality was excellent, and maybe she wont have to wear the halo for the full three months- he will let us know when we leave- what his potential plans are for a removal return date. Thank you all for your prayers- hopefully things will become a little less exciting as she improves. The plan is to be in the hospital till the end of the week- then close by for another week then to be home on the 22nd. Love and Blessings to you all!

DAY 3: walker walk and a smile!

So as the day progressed, Wynter kept throwing up-she was still dosed pretty heavy on meds but the PT did come in and bring her a walker (still don't have the chair we need though) which you see her trying out in these pics. She didnt want to use it at first- she kept taking her hands off- but she cant even sit or stand with out help, so its a lot of back work for me- especially since she weights about 55 lbs in this thing- and as of now is mostly dead weight with wires and tubes.  He lung Xray today showed that her lungs were too wet, so they gave her a medication that pulls fluid off the lungs- DOWNSIDE is that it makes you pee an ocean every 5 minutes- meaning, we had to change bed sheets, her, hip dressing etc. a few times, plus get her up to go potty on the potty almost every ten minutes for several hours there. The suppository did get things flowing on the back end of things- so there is an interesting praise report :) By 8pm- they said Wynter could leave the IUC and go down to the PACU floor!! yeah! The heart monitors came off, and one IV went bad:( SO she is down to the cervical drain in her head, 2 IV's, O2 monitor, and O2 mask. YEAH! PROGRESS! When we got downstairs, they finally "caved" and took my word for it that she cant keep water down on an acidic/ bile full stomach and that she needed something to absorb all that so she COULD keep something down, That Wynter wont eat or drink if she doesnt "feel" like she can...  So - I waited till they started her zofran drip (anti nausea) and gave her very small bites of pretzels, then they offered her ice cream (which she wanted- she did NOT want the fluids they offered her earlier)- then an hour later she was still asking- so they gave me permission to give her pretzels, so I gave her a few more- than a second ice cream- SHE WAS A DIFFERENT kid!!! She looked great, started smiling, was awake- waked with her walker to the playroom and back- and wanted a dress on- THEN she even looked at herself in the mirror without fear! THANK YOU ALL FOR YOUR PRAYERS!!! Pray for a calm stomach and calm night and that the worst is over!!! 

"go away mom"....beginning of day 3:

"Go away mom".... Wynter decided to pull her tinker bell covers over her head and tell me to go away  ( I don't blame her- as three of us had to wake her and hold her down to draw blood first thing this morning).  She has now pooped out what little was in there- and continues to pee well on the potty!!!! THANK you all for your prayers. Today they are going to wean down the morphine and valium a little   and try to start give her oral meds (Oxy and tylenol) and sips of water. She is still very itchy and sick to her stomach though. Physical therapy is supposed to come up today and maybe we can go for a walk in the wheelchair.  If all goes well today- MAYBE by late tonight we will be back to her 5th floor room and out of ICU. We shall see. Pray that she can hold things down, and that her bowl sounds return as that is still a big concern here. THANK YOU ALL!!!

Day 2:

Wynter was trying to sit up in the above video- so day to watch. Today they took her catheter out and she has peed in the potty and in her diaper. They still wont give her anything to eat or drink- because she hasnt pooped- when she tries to push- she throws up- I told them it is NOT bc she had ice chips- but bc she is pushing so hard to go to make a BM and that she needs a suppository since she cant have her miralax/ or drink/ and still hasn't been able to move! PT was supposed to  come today- but I guess it got lost in translations somewhere with it being the weekend-  I am repositioning her and I did get to hold her twice- and she really seemed to enjoy getting off  her back.  Keep praying for a BM, and no more throwing up- so they will let the child get up ans start moving and balancing- which is what she needs- to give them what they want! Praying for an uneventful night- she is still on oxygen, as the medications drop her O2 too low (too sedated).

Overnight first overnight:

Wynter was on her back most of the night, on heavy sedation- but her heart rate and respiratory & 02 levels kept dropping- so we were up most of the night just trying to keep her stable. I got about 2 hours of sleep. By early this am she was thrashing around a lot- we finally got her temporarily comfortable on her stomach- as seen here. Her meds bring down her O2, so we are playing a balancing game. They just took out her catheter, but she is starting to itch her face off- I think the morphine is making her very itchy.  They are not hearing any bowl sounds- so they want her to have ice chips- which she wont eat! Her mouth is cracked and bleeding and she hates all the cords- she tried to sit up- but this thing is so heavy that she falls right over- but doesn't want to lay back- so thats where we are.  

OUT of surgery and stable: DAY ONE

DAY ONE: THANK you all for your prayers and words today- it was a long day for sure! God gave Wynter a sweet gift of snow this morning before going down to pre-op. She did great through all the "talk"- then screamed as we put her under around 7:30am here. It took them a while longer than anticipated to really begin, because they had a hard time getting all her IV's/ CATH/ Arterial line in ( bruised all up and down both arms and legs), and had some trouble getting the halo and screws right- She has 6 screws in her head- but seven holes- one had to be repositioned. It was 10:30 before all that was done and they were ready to open her up. Dr. Samdani said her bones looked great and things couldn't have gone better despite, her vital tanking once and she did need blood. No complications!  She still has a breathing tube in (needs O2) a drain in her cervical spine- still draining a lot of blood, a cath to monitor output and many other IV lines and wires..... Thankfully she should stay under most of tonight- tomorrow will be a lot harder- trying to manage pain. She is on an antibiotic, sedative, heavy pain meds and more....her vitals are up and down, but there is a great staff here and they are doing a great job! Praying tonight is uneventful and that tomorrow as she starts to wake- we can help her manage the pain! Pray for her skin- she is getting real dry and bleeding- especially around her mouth and face. THANKS- GOODNIGHT!  

SURGERY UPDATE!

Dr. Samdani just came to speak with me about Wynter- he said it took them longer to get her started with all the intubating/ IV lines/ artery lines/ cath lines etc...and positioned with the halo- but that her bones looked good- they did put a little deeper screws in- but said that her neurologic function in her arms and legs look good so far. She did need blood, that they needed about 30 minutes to get her stable and then I could go down to her- I will post more as we go.  They have to wake her- hear her scream and see what her function (movement) is then she will be on heavy pain meds and valium to manage- but they have to wake her first... they said about 3 days in the ICU.....and we will see where we go from there....Ill write more and pics later! THANK YOU ALL FOR PRAYERS!!!

WYNTER says "SNOW BALL"!

Wynter, although not named for the season, LOVES the snow- I think it came just for her this morning! SHE was SO SO HAPPY to go play in it and get a snow ball- Thank you Lord for that little gift for her. IT is snowing VERY hard now- she is missing it- it is supposed to be gone long before she would be able to get out in it again. PLEASE PRAY NOW_ AS SHEIN IN SURGEY- FOR COMPLETE PROTECTION over her spinal cord/ nerves/ eyesight/ EVERY PART OF HER and for a perfect outcome! THANK YOU ALL!

Wynter got to see the snow before going back- IT MADE HER DAY!

Wynter  was SO happy to see and play in the snow for one minute before they took her back- PLEASE PRAY protection over her spinal cord/ nerves/ eyesight/ every part of her! GOD BLESS

PRE OP CHECK IN-

So, today we got all checked into the hospital- they let her play for about 2 hours, then went over all her medical history and medications. It took three of us to hold her down to get the IV in, only to find out an hour later we had to draw more blood from the other arm. After dinner they had me bathe her in a special antibacterial scrub, then gave her a strong laxative to clean her out. I braided her hair for the shave and the surgery. At about ten, they hooked her up to the IV fluid to keep her hydrated- as she cannot have anything else to eat or drink now- for who knows how long. They will come in and out all night- they will take us down tomorrow at 630 our time (530 texas time) to prep. for the OR. Then, we will all be praying for 8-9 hours as she will be in Gods hands, and the hands of the surgeons. I will post again, late tomorrow night. THANK YOU ALL FOR YOUR PRAYERS FOR HER TOMORROW!!!! 

Finally arrived: what a story!

Today has been an adventure to say the least- but God is providing every step of the way. We left at 3 am this morning and got to chicago fine- only to find out that our flight to Philadelphia had been canceled- they put us on several other flights to Philly- all those were then canceled. So God sent angels to help me run the airport back and forth- finally getting on a plane to Newark! The had to hold the plane for 20 minutes while they found our bag that we had checked :( Embarrassing, but thankful that the Lord had his hand on it. WE arrived in Newark- and tried to figure out how to get to Philly from there- the older couple said they would pay the $250+ taxi ride into Philly- WHAT a GOD sent- Then to top it off- one of Wynter's carry on bag was left in the taxi- the same family brought it back to the hotel just now. What a LONG day- but thank you all for your prayers. God is watching out for us! Ill try to post after Wynter's bed time each night to recap the day! Goodnight, and a big thank you and God bless to the Muller family!

Packing for Philly

Thank you to everyone who helped make the benefit tuesday night a HUGE success. Thank you Stephanie, Laurie, New Church, Home Depot, Mattress Firm, Discount tire, Midas, All things kids, and everyone who volunteered, and gave to the silent auction, Fire dept. pipes and drums....and so many more!  You are all amazing. Wynter and our family are so blessed by all your support for her and us during this time. 

I will post her progress here so you all can keep up with how she is doing. Thank you all for your prayers- we take off before the sun comes up on Wednesday!