Independent little man!

The new doctor that Kingston has finally been able to get into to see, has already made major improvements in Kingstons feeding issues.  It has only been 5 days but already he has been able to keep most of his feedings down.  That means he can start to gain weight, it's only ounces but it's the increase of weight that is exciting.  He finally hit 20 pounds 1.5 ounces.

I was able to go and play with Kingston last night.  He has his little games he likes to play with particular people.  For example, when grandpa holds him he rub's his hand on his cheek and then smiles, tucks his head into grandpa's neck and pats him on the back.  If grandpa is sitting with him on his lap, he leans all the way backwards and wants to be flipped off of grandpa's legs. He giggles and jumps to let grandpa know he wants to do it again.  Kingston gets himself in the position to play the game again.  He knows what to do to have fun.

The game with me, grandma, is that he has to feel my face then he puts one hand in my mouth and the other down my shirt.  I don't understand that one but oh well.  He giggles and puts his head on my shoulder and pats my back.  We are then ready to play.   He and I have a way of communicating together.  I know he probably plays it with anyone that will play with him but I think he knows when he is playing it with me.  I will make a noise and pat my hand over my mouth so that the tones change.  He has learned how to do that himself so he follows.  Kingston has be able to find his toys and push all of the buttons so that ALL of the music is playing at the same time.

Last night he had a few of the toys playing he then turned around, already standing, he must of heard my voice and he ran to me!  He took about 7 steps to find me! 

My heart melts.....  How can I not believe in miracles.

Feeding Kingston

While Kingston continues to improve in some areas, he struggles in others.  He was able to have his lip and nose repaired in May 2010.  The surgeon is fantastic.  The lip is barely noticeable now. Kingston's palate has been scheduled three different times and cancelled just days before due to the fact that he is "failing to thrive".  Kingston has been fed through a G-tube since he was about a month old.  His palate is so severe that he is unable to swallow anything, not even a drop of water.  He has had a fundelacation (spelling?) which is suppose to stop him from retching.  It has not helped, he has not be able to keep down most of his food daily.  Kingston has in home nursing care for 5 days a week, which helps give Terril a short break.  She is on the phone constantly with schedulers and nurses.  It has become a full-time job for her.  Terril has gone weeks on just a few hours of sleep a night and most of that has been quick naps in between Kingston's random sleep patterns.

Kingston has never passed a hearing test, yet lately he can hear us and he is starting to respond.  He has begun to say one syllable words like mama and "mo" meaning more. What wonderful miracles continue to amaze us on a daily basis.  We are truly blessed!

Meet Kingston Maddox Vanderkallen

October 19, 2008 our lives changed in a way we never thought would happen to our family.  The entire night before Kingstons birth was a battle from every force, it seemed that nothing was going right.  Kingston's mother had the most intense labor I have ever witnessed and yet the doctors wouldn't believe she was in labor at all.  After about 8 hours, we were able to have a doctor stop for just a few minutes and watch the intensity of what she was going through.  The doctor responded immediately and started to take action.  He never left her for the rest of the labor, something was terribly wrong.  The pain meds were given and more and more.  Quoting the doctor, "we've given her enough to put down a horse".  They finally agreed to get the anaesthesiologist involved, she was a feisty thing.  This doctor came in with barking out orders and nurses were jumping.  She turned to me and said, "I will get the pain in control soon for her, I promise."  The first time that night my heart had hope.  She gave her enough medicine to let her finally fall asleep for just a few minutes while they prepared for the emergency C-section that was going to take place.  For just a few minutes, I sat all alone in the rocking chair with my baby girl hanging onto life trying to give life, I needed comfort.  I started to pray almost out loud. I knew that whatever the Lord will was I would have to accept that, I have enough faith and knowledge in the plan of salvation that I knew there are worst things in life than death. When my father was saying his goodbyes to all of our family, he promised that he would always be near us. That iff we were living righteously he would do everything he possibly could on his side to let us know he was there.  Well, I needed to know he was there.  I said out loud, dad you promised!  It was that quick that a calmness wrapped around me and I knew that the Holy Ghost was surrounding me but I also knew that my father was in that very room, wrapping his love around both my daughter and around me.  It was during this moment that the feisty anaesthesiologist walked back into the room, she came to an immediate stop (almost as if there was a solid wall in front of her).  Our eyes locked and I know she knew she was experiencing a true moment of comfort.

I sat alone in the empty room waiting to hear anything about my daughter and my new grandson.  The announcement came across the entire hospital, "Code pink, Yonkers C-6"  I knew it was Kingston.  I watched as medical staff dropped everything and ran but I still was comforted. It seemed like forever before we the news came that our little man was here but was in intensive condition, there seems to be more to the problems than just a cleft palate and cleft lip that we were prepared for from early on.  We were told to prepare ourselves because his appearance was obvious that he wasn't normal.  I walked in to his small intensive care room with about 6 other medical team members there working on him and I was in love!  There in my midst was a gift from God.  I knew at that moment life would be changed forever for our family.  It was going to be hard!  It was going to be a lot of tears, no sleep, doctor appointments, no sleep and so many more issues that we could not ever comprehend.

It has been over 2 years since that date.  I'm not the one that always loses sleep, it's my daughter.  I'm not the one that goes to every appointment (sometimes up to 10 a week), it's my daughter.  I'm not the one that has the decisions of major importance that can influence Kingston life in one way or another, it's my daughter.  My daughter is amazing!  She didn't ask for this, she didn't pray for this, she never dreamed of this but this life is what has been given to her to care for and watch over.  Kingston was given to my daughter and our family as a gift! I can't imagine our life without him. 

His presence has changed our course in everything. 

Through this blog, my hope is to share the trails, the tears, the joys, the accomplishments and the love that comes from little Kingston Maddox Vanderkallen.