Thursday, August 27, 2009

Surgery....And Exciting News!

Chloe girl is finally scheduled for her Nissen Fundoplication. We are set up and ready to go on September 9. We do not have the time of day for the surgery yet. Will not receive that until the day before the surgery.

We are scheduled to stay at the Ronald McDonald House the night before as we are sure she will need to be there bright and early. We will have to take her two year old brother along with so we don't want to make the early morning transistion any more traumatic than necessary. We are hoping that this surgery will really improve the quality of little Chloe's life. The struggles with her breathing are getting more pronounced. It is good to finally get going in the right direction...even if we are forced to see our child put through a painful procedure.

Dr Lund from the American Family Children's Hospital in Madison, Wisconsin will be performing the surgery. He has determined that it is in her best interests to do this surgery as an open surgery verses a laproscopic surgery. I have done a great deal of research on this and feel this is best for our little girl. I have peace about this decision, but I have to admit I am still concerned about the healing process and the pain she will endure.

On an incredibly positive note.....Chloe is starting to crawl on her own. She has been doing a commando crawl for awhile, but she is now getting on hands and knees and going for it. She can also go from a laying down position to an almost complete sitting position with no help. Chloe has started to sit for large periods of time with no assistance though she still does what we like to call the TIMBER approach to laying back down. There is no grace and beauty involved, but its all a part of her growing and changing and we couldn't be more tickled over watching her.

I remember watching each of my other children learning each of these stages of life and being so proud. I will never take for granted those moments or think of them as being any less miraculous than they were. I have to say though there is something about watching a child you were one day told might possibly never gain the ability to sit up, crawl, roll over or any of those basic developmental stages that just brings tears to your eyes and makes your heart swell with pride and unspeakable joy!

Saturday, August 15, 2009

My Hero!

On more than one occassion I have thought about sharing with all of you the one person that convinced me that I could love a handicapped disabled Child! His name is Kyle Edgar Dylan Wixson. I know quite a mouthful. I do not know what his parents were thinking!

Kyle came into my life at a period of time where I had very little or maybe no joy in my life. He is the youngest son of people who have come to be a second set of parents to me and an additional set of grandparents to my children. Pastor Clifton Wixson and his wife Judy, or Judith depending upon whom you ask came to the small town of Merrill, WI to help a church in the midst of a painful split. Not only was the church family that I had developed a close bond with falling apart, but so was my life in most areas. A marriage that I had struggled to stay in was further drowning in mistrust, lies and pain. In my personal life I was dealing with a past that I didn't feel like I could share with anyone.

I didn't want to like any of them. They came to take the place of people that were my friends, the former pastor and his wife and children had become a large part of my family's life. The pastor had dedicated my three children to the Lord and stood by us as a family during struggles that I was personally having even then.

Many times as I have thought about the Wixson family showing up I know that God was using this special little boy to prepare me for Chloe. I can not tell you how many times I said to myself I could never be a mom to a special needs child. Can't do it, don't have enough patience, I am an intellectual bigot and could never see myself with a child who couldn't recite his alphabet by two and read by four. God would never do that to me because He knows I can't do it. I am safe, He says He will not give you more than you can handle and I KNOW I can't handle that. I know that Mother Wixson, as I call her will read this and I know that she is laughing. Go ahead Mother....Even I can now laugh at that.

Now Kyle was not the first special child that I had encountered in my life. I have a niece with Downs Syndrome, but due to the distance between her family and mine I didn't have a lot of connection to her. With Kyle, there was no escaping him...ha! He made sure that within a matter of weeks he knew every person in that church. This seven year old boy was a gift to that church. He possessed more unconditional love and healing then any other person that had walked in the doors of that church before or since. I know I am not the only person that felt the affects of him in their lives.

After a long sleepless and painful battle with God I finally gave in and allowed this family into my life. Often times, in the midst of my bitter angry marriage I would escape to their home. Kyle was always there for a no questions asked hug. He and I would sit in the middle of the floor of their home and play. I loved the fact that his parents saddled him with one of the longest names in mankind and would often call him by his full name to which he began to call me Jeri Polacek and then he would giggle one of his infectious giggles that would make anyone laugh along with him. I taught him the importance of picking on his mother and licking her nose if she was getting too big for her britches.

Somewhere along the line the truth finally dawned on me. For as much as I thought I was teaching this little guy he was teaching me infinitely more. Kyle taught me the true meaning behind forgiveness, unconditional love and acceptance. I have often wondered if forgiveness should come so easy. I think over the course of the last year living with my own very special little girl that I have come to ask myself...why shouldn't it??? Now don't get me wrong, just because we forgive doesn't mean we necessarily put ourselves back into the path of pain, but I think it does mean we just let it go. With Kyle and now with Chloe I have learned that if you hurt them in anyway they don't hold on to the bitterness. It doesn't have the power to control and destroy with them, like we as "Normal" people allow it to with us. This is just one of the many things that Kyle has taught me. Even now, with him living half a country away whenever I speak to him on the phone he is still the same loving little boy...well young man now! After all, he did have one hot date to the prom a couple of years ago!!!

I don't remember what the turning point was, but I clearly recall sitting on the living room floor with Kyle and thinking to myself, I could do this. I could love a special needs child. Don't I already. Still the thought of having my very own child with down's syndrome or something like it is much different than loving one that you can give back at the end of the day.

Many years have passed from those days. Kyle is all grown up now. He shaves, sings in the shower, and has gone to the prom. You will find him like any other young man his age with a set of head phones hooked up to his head with his favorite tunes playing on his IPOD. He talks about football season from the end of March Madness until the first kick off of preseason through to the last second of the super bowl. You can find him watching a copy of the previous years draft when he can't seem to find anything else football to entertain him. An avid Buffalo Bills fan he doesn't hold me personally responsible for my beloved Cowboys beating his team two years in a row in the Super Bowl. Not so sure his family feels the same though! He is a never ending source of joy for his parents and siblings.


Rarely a day goes by that I don't think about this amazing young man and his gift of love.

Updates, updates, updates!!!

Seems like forever since I have shared with anyone what is new with my little peanut. After what seemed to be an uneventful beginning to our summer things are starting to take on a mind of their own and off and running again we are with little Miss Chloe.

At the end of May, Chloe had her surgically placed g-tube removed and replaced with a mini-one. At first all was going well and there didn't seem to be any issues with it. A few weeks after it was placed I hooked Chloe up for her final feeding of the night and the button didn't seem to want to accept this feeding....Hmmm, I thought what is happening now. After getting the runaround from her pediatric g.i. doctor's after call service I decided to just call my pediatrician. She along with a surgeon she found that was on call at our local hospital met me at the emergency room to find out what was going on. He thought, well possibly the balloon is faulty and something is stopping the button from working properly. We had an extra one there...he removed the one and out gushed all of this stuff. He looked at Dr Chao, Chloe's pediatrician and said, "When was her last feeding?" I told him at 4:00 pm and at this current time it was 9:30. They both agreed that her stomach should be empty.

They checked to make sure there were no bowel obstructions or other issues and suggested we look at a stomach emptying test....To make a long story short that was mid July and here it is mid August and we are finally getting into a surgeon to see about finally doing something to help Chloe. Through all of this Chloe has started to vomit and clearly is aspirating into her lungs. She had a pulmonologist appointment on Tuesday August 12. He agreed that she is definitely aspirating and has referred us to a surgeion for evaluation for a nissen fundoplication. This is not an uncommon procedure for 1p36 kiddos or for special needs children in general. The thought of her undergoing yet another procedure does make me nervous, but not nearly as nervous as Don and I have been when she vomits and turns blue and stiff from not being able to breathe. She is currently on another course of antibiotics for aspiration pneumonia...her fourth so far this year. We have to believe that this is the best option for our peanut and have great hopes this will help relieve so many of her issues. We still have to address the stomach emptying issues, but one thing at a time.

Also, during the course of this pulmonology appointment Chloe fell asleep and started to snore. He asked me a few questions one of which was, does she sweat at night? I have asked numerous doctors this question with no answers given. I said yes, she does. Dr Rock, the pulmonologist, looked at me and explained that after she heals from the nissen that she needs a sleep study for obstructive sleep apnea. Finally, I feel as if we are getting some answers!

The week started out productively and continued to become even more productive. On Thursday the 14th we took Chloe to see Dr Macleish, a rehabilitation physician. After observing her for more than an hour and asking lots of questions and re-reading all the information the other physicians had provided to her she shared with us that she felt that Chloe was progressing very nicely. We had quite a few questions regarding possible equipment Chloe would need. She felt that Chloe is ready for a front facing car seat with no special bells and whistles just a good supportive car seat with room to grow. She also felt that a standing frame would be a very frustrating scenario for Chloe due to the amount of moving she loves to do. After her nissen, the sleep study and a swallow study she finally wants to have performed on Chloe she would like to see Chloe back in three months to fit her for a gait trainer. At that time she believes Chloe will need to be fitted for a special shoe that will help her gain the stability she is needing in her ankles. Part of her lack of desire to put pressure on her feet is due to the fact her ankles turn slightly inward. Dr Macleish felt she was going to have enough things to keep her busy over the next few months and it was best to let her heal before starting her on a new path. She did assure me that what our current therapists and we as a family were doing for her is awesome and we should keep up the great work. Nice to know that all of that work has paid off.

So, for now, we are just trying to get to Tuesday when we can finally do something about all of her G.I. issues. There is nothing scarier than watching your baby struggle for air.

Sorry this update was so long and it has been such a long time. The summer has been super busy with all of our other children and just trying to maintain sanity through all of our ongoing battles and joys of raising a special child!