Wynter's FIRST bike ride!!!

MANY THANKS to Variety, the entertainment industry, and all of you who purchase the Variety gold hearts in theaters!!  http://www.usvariety.org/goldhearts.html Wynter's is now able to dry her tears and get out there and ride her very own bike with her peers in our neighborhood!!! She is SO HAPPY as are we. THANK YOU.

Home from Philly- 5 month update:

Wynter saw Dr. Samdani this week, he did X rays and an exam. He said that it appears that all the hardware is still in position, but could not really see if there was any fusion of the CO yet. I guess that is why the full post op healing period is 24 months.... We are at # 5.

He gave her new notes for therapy, school and activity restrictions as well as discussed her plan of care for post op period 6 - 12 months.

All in all, it was a good visit. Her incisions and screw holes all looked very good. At this point her hip seems to cause her the most pain each day and it is also the biggest scar. 

We had some very hard flights coming home, took us 2 days...but God blessed us with a lady that offered to sponsor Wynter to take a dance class this year! What a blessing! Assuming all goes well,  we wont  return to Philly for 6 months!!! Thank you all for your continued prayers. The ongoing concern at this point still remains- a good strong healing, to keep Wynter safe from her very active self and that school will always have someone within arms reach of her! :S  On a fun note, here is a video clip of Zac performing at church- and Wynter trying to follow along- considering she didnt know the moves- she rocked it! (you can even hear her singing! "yeah! loves me") 

Special, well deserved ZAC time!

After all that Zac has courageously and graciously walked through the last 2 years, he deserved some much needed and overdue one on one mommy time. We went to Disney Land, and to So Cal for some surfing for the weekend. Followed up by seeing some great friends of mine  that I grew up with....Thank you Lord, for this special time together! 

Biter Sweet Goodbye

This letter has been long coming and I realize that it may take some of you by complete surprise. Our deepest desire is that we want our kids to grow up to know, love and serve the Lord with their whole hearts. We want them find their identity in Christ and allow Him to work through them.  I have learned a lot this year; a friend put it this way, “Letting go doesn't mean giving up, but rather accepting that there are things that cannot be."

Recently, Adam and I spent time signing forms in the presence of witnesses as we let go of some of our dreams for our family, but there was also some new hope... hope for the future. We are officially no longer Michael’s parents. He has been in respite care since January, and then was placed with his forever family in February of this year, a divine intervention with out a doubt. So now, after making everything final and having some time to heal, we are now ready to share this very hard and personal decision.

I don't think I need to go into many details about why we made this choice, as those of you close to us know some of what we had been facing and walking through with Michael, but in the end, it came down to what is best for him and for our other children. There are some of you reading this who can't - or won't – ever understand or accept our choices for our family, and that's ok. I realize that unless you've lived with a child with RAD (reactive attachment disorder) and other serious (medial or mental) issues and watched your whole family fall apart because of it, there's no way to truly grasp the pain and anguish we have all been through. Another RAD parent wisely explained her life this way: "From the outside looking in, you can never understand it... from the inside looking out, we will never be able to explain it."

Despite pouring our heart and soul into Michael, we realized several months ago that we could not be the one’s to help Michael the way he needed. It was heartbreaking for us. So this period of his being with them in respite care, gave us the opportunity to step back and see what was really happening to Michael and our whole family, which could not have been possible with Michael in our home and all of us in crisis mode.

All though this may come as a shock to some of you, this decision was not made in haste. All parties involved have put a lot of prayer and tears into figuring out what is best for Michael over the past year and where he needed to be to thrive, to have a hope and a future. We have had lots of conversations during this slow transition and have watched him struggle in so many different ways despite all of the prayer, help and medical treatments; finally, we believe he is stable and beginning to make some progress.  He is settled and happy, he even believes that he CHOSE this family for himself, and even reminds them often “Hey, I chose you” J Just know that we finally feel that Michael is in a place where he has all the many helps and supports in place that will give him the best opportunity at a healthy, functional future, which is all we have ever wanted for him.

I know many of you out there are saying, "You should have adapted to his needs, changed your lives so he could thrive in your home! You must be flexible and deal with everything he brings to the table! You askedfor this!" But we were bending to the point of breaking and our whole family was crumbling to pieces, Michael included. At some point we just had to say, "We cannot do this." That has been very humbling to me as a mother. I have always prided myself on being a good mother who would do anything for her kids no matter the cost, who would stop at nothing to get her kids what they truly needed… never perfect, because no one ever is, but flexible, patient, courageous, longsuffering and loving. Michael challenged all those virtues in me and about my parenting. But even in this decision, I believe I am being and doing those things for him.  I also learned that it's ok to ask for help, it's ok to admit when you're struggling. It’s okay to completely trust God and place my kids, which He entrusted to me, back into His hands. It's one of the hardest things I've ever had to do - to admit that this was no longer the right place for Michael.

When I first had to face this possibility of disruption, I was appalled.  How could someone adopt a child, put all their love and energy into this child who has most likely already been abandoned over and over, and then throw it all away? But with experiencecomes understanding and as I looked deeper into the hearts and lives of these families who have walked this path before us, I came to see that this was a decision made out of amazing love, pain, prayer and tears. Even though it's a hard thing, they knew in their hearts it was the right thing for that child. I learned to check my judgment at the door and remember that I don't know the whole story, just as you don't know ours. 

There is a part of me that will always wonder if we could have made it work... if we would have tried just a little harder, prayed longer each day, seen his needs earlier, asked for help just a little sooner, had more money to get him all the help he needed, or done things differently from the beginning, would our path have changed? Would Michael have ever learned to be ok here and accept love from us? I don't know. What I do know is that we were all, every one of us, suffering. For everyone's good, this step had to be made. This new family has loved on us, prayed with us, encouraged us and we are at peace with our decision. There is no judgmental comment, no ugly remark that you can make, that I have not already thought myself over and over again these last several months. 

Despite everything, I know that we did some great things for Michael - we saved his life, we rescued him from where he was, where he had a horrible past, and no future; We got him off all the incorrect medications that were masking who he was and what he desperately needed. We discovered some major medical needs, and God used us as a loving, caring vessel to get Michael to his forever family. They are a wonderful Christian family who already has children with similar special needs and are parenting them effectively and are having better success than any state or federally run treatment facility. They have an amazing church family that supports their fulltime ministry as well.

Needless to say, this has been a very difficult and emotional time for our entire family. We are very fortunate to have family and friends, who have stuck by us, listened to my heart, cried when I cried and encouraged us as we got closer to the end of our journey with Michael. These friends are ones who have not only told us that it is ok to let go, but also understood why we could not continue. For that, we are very thankful. Just remember that until you have walked in the shoes of a family dealing with RAD and /or other serious issues, there is no way to truly understand.

In the Bible it clearly states that we are to care for the widows and orphans. We followed God's call to rescue Michael and now we have followed His call to let him go. Some people believe holding on and hanging in there are signs of great strength. However, there are times when it takes much more strength to know when to let go and then do it. Sometimes letting go is an act of far greater power than defending or hanging on.We believe without a doubt that we have done our very best in caring for Michael and providing for his every need. While I may talk about RAD or other diagnoses from time to time, it will be for educational purposes only, I will not continue to defend our decision as we know we are doing the very best for Michael and our entire family. We sincerely appreciate comments, thoughts and prayers of SUPPORT.

We are very thankful for Michael’s new family who has been an amazing support, encourager, and prayed for us over these last several months as they've begun their own journey of ups and downs with Michael. We are grateful for the friendship we have developed with them. So, in order to respect their privacy and continue to respect Michael’s privacy, we will not be posting updates unless we have permission from the new family.  I don't know all the answers as to why God has taken us down this path or why our story with him had to end this way, but we hope that we can use it for His glory. We know that this is only the beginning of Michael’s journey and we are excited to see all that he accomplishes in this next chapter of his life.

DAY 92: NEWS from the surgeon!

DAY 92:

I just spoke with Wynter's neurosurgeon, Dr. Samdani about Wynter's 12 week X-rays. He reports that the hardware looks like everything is still in place and that there is starting to be some good bone healing around the screws. He also said that he would like her to stay in the body cervical collar for another month, and then we can graduate down to just the neck cervical collar. She will then wear that collar until September 8th ( 6 months post op) and then we can slowly wean her out of it as her neck muscles strengthen. Because her neck muscles has been stabilized for so long, They will be like a newborn again, very weak and unstable. So we will have to be strengthening every day. So all in all- VERY GOOD NEWS! His only suggestion was to try and avoid her "tripping over the bathroom stool-doing a foot over head cartwheel- landing on her head in the tub" move as much as possible LOL . (That daredevil move was during a midnight independent trip to the potty....I heard a noise and turned on the light in time to see what I just described). Ugh, this kid!!!
Wynter and I will have to fly back up to Philadelphia in August for  Dr. Samdani to repeat X-rays and reevaluate her before school starts. She will, unfortunately, have to start school with the collar on, so we will need some very specific notes for that Im sure.  :(
The only other news, is that on Tuesday of this week, Wynter woke up at 4:30 am and was acting very strange, and as I took her to the bathroom I noticed that she looked "grey" and her lips were blue (she sleeps with a CPAP, so that didnt make sense).  Her whole body shook with every exhale, and the only thing she said was "tummy ouch". We went to the E.R and after a traumatic morning of being held down and having needles stuck in her all over, CT scans etc....All we could find was that her white blood cell count was 20,000- which is very high for ANYONE!  While there, she developed a 103 fever that did not decrease with medication, but then resolved on its own at 2pm. She has had NO symptoms of ANYTHING being wrong since 2pm that day. VERY STRANGE. Next week we will follow up with more lab work to re-check her white blood cell count and go from there.
Thank you all again for your prayers and support. We are hoping for a fun, restful and uneventful summer!!! So, if we don't post for a while, know that no news is good news!!!

DAY 83: GOOD NEWS and upcoming X-rays-

I havent posted in a while, because right now, no news is good news. Friday the 31st will be exactly 12 weeks since the day of surgery and we will be having X-rays to check on the plate and screw placement as well as to see how much bone growth there has been and any healing that has taken place.  Since she has not been in the halo (which kept her perfectly immobile), the prayer and concern has been for a tight healing (despite the movement she has in this current collar/ body cast).   After the X-rays, we will get a game plan from the surgeon on what recovery from here looks like, and an idea of the time table. I was originally told to expect her to be in a cervical collar of some kind until about 6 months post op, which puts us out of a collar just in time for school to start the middle of August.

On a great, praise God, so excited note: Wynter's scholarship application for her freedom concepts bike was approved!!!! They measured her today, and asked her favorite color, which as you can see from this picture is yellow these days....hopefully she will have the bike in a few weeks. (It is the bike that she was riding in the previous post, built just for her!). These bikes are specially priced at $4200....so this is a HUGE answer to prayer! I wish you could see how happy it makes her to be able to ride a bike!

I will post again, after I have spoken with the neurosurgeon and share the "game plan" for the next step in her recovery! Thank you again for all the prayers and support for our precious baby girl and our family!

DAY 48: A force to be reckoned with...

Wynter, you are a force to be reckoned with. This was today at therapy and is the ONLY bike around that she can ride. She has been trying to ride a bike for 2 years...look at the pride, confidence and independence it gives her.

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!

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! 

One week till the benefit for Wynter!

One week till the benefit dinner, which has turned into so much more than a dinner- live music, silent auction- bake sale- so much more.

WOW. Time is flying by. Thank you to all who are contributing of their valuable time and are being so generous in the material items needed for Wynter and this event. Blessings to you all. 

Wynter and I catch a plane at 6am on March 6th!!! I think that is when all the crazy busyness calms that the emotional reality of what Wynter is about to go through, and what the following 3 months will look like, will truly sink in. Thank you all for your prayers! We will keep this blog updated for all of you who are wanting to keep up with how things are going. 

God Bless,

Wynter, and her family.  

Surgery needs:

We fly in a month!!! WHAT WILL THE NEEDS BE? 

PRAYER:  Prayer to cover the doctors and hospital staff; for her safety; for safety in travel; that surgery will be a success; for her pain management; for the rest of her medical system that will be affected like her bladder and GI track; for her comfort; for the physical, mental and emotional state of her and all of us; for the Lord to meet the physical and financial needs listed below:

PERSONAL CARE: Wynter will require ALL of her daily personal care to be done FOR her:

-       Care and cleaning of the 8 pins at least twice a day (this will require at least 2 people)

-       Body cast care; Feeding (needs things cut small and fed TO her); Toileting; Sponge bathing

-       Hair cleaning (with out getting the cast wet);  Skin care under the cast;  Constant monitoring while she plays and manipulates through her day to ensure she doesn’t fall; Someone to help with housecleaning/ errands/ transportation when we return;  Other unknowns yet

SPECIAL ITEMS:

-       All of her clothes will have to be 2-3 sizes too big, then strategically cut and manipulated to fix up and around the 4 metal bars;  She will need a very special car seat to accommodate the halo; Wheelchair or stroller to accommodate the halo;  Sterile medical supplies for halo, body cast and wounds;  Other unknowns yet

FINANCIAL:

-       Airfare for Mom and Wynter to get to and from Philadelphia several times, fist for surgery and then for post ops over the next 2 years.

-       Gas, hotel, meals for Dad and brother to travel to Philadelphia for surgery.

-       Funds for hotel (7-10 days)/ meals/ maintenance while in Philadelphia for 3 weeks.

-       Funds to pay the mortgage an electric bills since I will be unable to work for those 3 weeks.

-       Funds for the special medical supplies, clothes, DME equipment needed. A TOTAL OF ABNOUT $6000 for the initial surgery, and $1500 for each additional post op visit. 

-     

Surgery updates & Wynter’s progress: http://outsidethatbox.blogspot.com

WEBSITE: www.outsidethatbox.org   (PAY PAL ACCOUNT ON WEBPAGE)

Contact information:  Adam & Tiffany Young

705 Gardenvilla Circle, Georgetown, TX. 78628   (512) 924-9680   tiffany_pa@hotmail.com