She can write her first letter!!! See the video here: http://www.youtube.com/watch?v=GnsIheB0UTA

First trip to the Coast

Wynter's first trip to the coast/ocean....she had a BLAST! She played in the sand, rode the boogie board, looked at jelly fish, collected shells...it was quiet an adventure! It was a great spontaneous get away! I love to have fun with my babies! They are growing up too fast!

CPAP for sleep apnea

Our next adventure: CPAP MASK....OH BOY! well... it took a while just to get her to put the mask to her face, can't imagine how long its going to take her to be okay wearing the mask, let alone hooking it up to a machine with air and noise...then learning to fall asleep with it, and lastly, sleeping all night. Looks like we may have some rough nights ahead of us...Because of the dangerous instability in her neck, and the fact that we are waiting to do spinal surgery- we can't take out her tonsils and adenoids until much later...so- THIS is the solution for sleep apnea. woohooo. prayers appreciated. THANKS

BUTTERFLY Shoes

Wynter has new butterfly shoes--> that is what she calls them anyways (because the have butterflies on them). She has worn 'Sure Steps' since she started weight baring (because we wanted to train/strengthen her muscles the right position as she learned to walk), but this is the first time that we have put her in anything like this/this big. The goal was to prevent her from locking her knees with each step/ increase quad strength/ improved gate...AND when she wears them- her gait IS totally different (she CANNOT hyperextend her knees), so we are trying to see how long she will have to wear them before her brain "reprograms" itself to this new gait pattern...she does like putting them on, but once they are on- she doesn't want to take them off :) Her brother even stated "hey- she walks like us now" - he is right :)

Broken toe- but still earned her next belt!

Wynter joined the "SPLITS CLUB" at tae-kwon-do! Everyone was amazed at how she was so young and could do the splits so effortlessly. She has done well in class, she even takes her lessons outside class--> she bows at door ways everywhere and says yes sir and yes ma'am. A few weeks ago she earned her orange belt, and she was very proud of herself...she definitely earned it to- considering during her belt promotion she BROKE HER TOE!!! - but still finished out the class! What a champ!

Well, I know that the blue bonnet season is over here in Texas, but I loved this carefree picture of Wynter and wanted to share it. For most of you, you probably don't know the meaning behind Wynter's name...so I thought I would share it with you....BE ENCOURAGED MY FRIENDS! Significance of the name “Wynter”: When we reach the Winter of our soul is when we most passionately reach out to God. Saint John of the cross who was imprisoned in complete darkness for 9 months as a result of his beliefs experienced the “winter of the soul” as a necessary part of the journey of finding himself totally dependent on God. He said… “This depth of darkness drives us forward to the love of God and his true character, we can only more deeply experience and contemplate the depths of Gods love once we have experienced this winter of our soul…” It has been in my darkest hours that I have touched the face of God, most deeply felt His presence, His peace, His love. I never want to forget that time, that “winter of my soul”. Wynter is a constant reminder of those moments. Romans 5:3-5 Suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because Gods love has been poured into our hearts through the holy spirit that has been given to us.

Wynter and I got 3 hours of sleep before our wake up call and trip in a cab to the hospital at 7am this morning. The staff was amazing! They were incredible with Wynter, very thorough all the way around, and we were not rushed at all, by anyone! They gave her a bag of goodies, including a baby doll whom she named "bailey". The good news is that, so far, there is no damage to her spinal cord! Praise God! But he said that due to the 8mm instability- she is at risk of paralyzation or worse from a fall or other neck/head injury. He also said that over time this in going to increase (get worse) and would probably start pressing on her spinal cord even though it hasn't gotten there yet. Unfortunately, this is not a black and white issue. Wynter has another factor that complicates this issue/surgery...Her IGF1 deficiency. This problem, makes her BONE AGE about half of her chronological age (meaning, she turns 5 on friday, but her bones are only about 2.5 yrs old). WHICH MEANS, that her bones are still soft and that would create complications when putting in screws, result of the surgery and things remaining in place while she healed. So, taking the bone age issue into consideration, and the fact that her spinal cord is not currently in jeopardy, he would like to wait as long as possible before having to do surgery to give her bones time to harden and mature to maximize a better longterm outcome and to minimize other complications. He is however also conceded about how active she is and so put her in a neck brace as you can see here in this picture. He wants to repeat the MRI in 6 months to check her spinal cord and go from there....but he said he really needs her BONE age to be 5 years old or as close to that as possible before we were to do surgery....(unless her spinal cord becomes more of a concern before then- then THAT will trump the bone age and we will proceed). ....So, here again, she never makes anything easy...she has to be one in a million! :) And She Is! We will have to monitor her closely and prevent her from getting hurt while her bones mature, and watch for neurological symptoms until we reach the "right point" to move forward. Thank you all for your prayers, we will continue to keep you all posted! PLEASE JOIN US TO CELEBRATE HER 5th BIRTHDAY! We will get together at the All abilities park in Round Rock (RABB PARK) ON MAY 5th at 10am! Send me your email address and I will add you to the invite! We would love to see you there!!! Thanks again for all your prayers!

Flying to Philly

Okay, we are on the plane to Philly for another neurosurgeon appointment in the morning. We land around midnight, then take a cab to the hotel, check in at the hotel, get alittle sleep before catching another cab to get to the hospital by 7 am....Wynter did okay on the first flight (other than a pee pee accident AS we were boarding). She does keep telling me that her ears hurt...and now she keeps acting like she wants to throw up.....I'm praying we can avoid that! thank you all for your continued prayers....also praying they have my stroller when we land.

Wynter had her MRI. Unfortunately the Neurosurgeon here changed his "order" at the last minute and removed the flexion/ extension images, he is just to unfamiliar with this issue and didn't feel comfortable extending her neck....I wanted to say "DUH, thats why we need those images" But I didn't let me flesh get the better of me, (THANK YOU LORD)....I tried to get him to change it, but no real success. So, I will take the XRAY and the MRI and little miss Wytner to Philadelphia on Monday to see Dr. Samdani and will return with a GAME PLAN on Wednesday. Thank you all for your continued prayers. I will continue to post here to keep you all in the loop!

OKAY! First hurdle, CHECK. She bypassed the 4 day application wait. I just got a phone call, SHE IS IN! We got into Shriners Children's hospital in Philadelphia! They will cover the medical part of it all, WE JUST NEED TO FIGURE OUT AIR FAIR AND WHERE TO STAY ECT. They want to see her ASAP, SO WE NEED TICKETS AND MONEY TO STAY in Philly fly in on a monday, fly home late tuesday or wednesday morning for the EVEAL. and fit for a cervical solar....they we wait to see when surgery will be. I CAN TELL SHE WILL BE IN GOOD HANDS THERE, and THIS IS WHERE SHE NEEDS TO BE!!!GOD, please bring in the finances now!

Well, this is the beginning of our scariest journey yet with our sweet Wynter. We found out last week that she has a very dangerous instability between her skull and her c1 called AOD. They pediatric neurosurgeon at Dell's Children's hospital said that a fall or wrong extension of her neck could paralyze her or worse. A car accident could be fatal. We have to get a MRI to be able to develop a surgical plan, but the MRI itself poses the same risks. She will also need a sleep study down before this unusual surgery. So please be praying for her on Monday the 16th. The only 2 cases that I have heard of like this were both performed in Philadelphia. There are about 1000 plus details that have to be worked out...so we covet your prayers and support as we figure all of this out. I will keep you all posted the best I can via this blog as I get new information. Right now, we are trying to get all the testing done and figure out where we will be going for surgery and how to find the help we need during that month....and then the 6 months following while she will be in a halo with 8 pins in her head attached to a body cast that will not be removable- all to give the fusion the best possible chance of success. .... I will keep you posted. Thanks for your prayers.

Christmas 2011

Well, I am join to have to get a lot better at this blogging thing. We finally made it up to Illinois to see our family. We had a great time. Wynter and Zach loved the snow, and Michael tolerated it. But we really enjoyed getting to spend time with my family. Its been about three years since we have gotten to see them. This picture is me, Wynter, and my sweet italian grandmother who I love dearly! We miss you already!