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.