Chloe's "2" Yay!!!!!

I am happy to report that Chloe and the family made it through the months of February and March will little new to report. The only real issues we dealt with had to do with the fact that while Chloe had been improving during her body-supported gate training she seemed to later hit a wall. The little stinker doesn't seem to want to engage the left leg in the forward motion required to develop the proper stepping pattern. Both of our physical therapists are baffled and thought it might warrant a trip to the pediatric orthopedic doctor to determine if there was something physically wrong with her. Off to Dr Noonan we went. After some x-rays and a very thorough examination he determined that while she has a slight case of hip dysplasia on the left side it certainly isn't anything that would hinder her ability to use that leg. However, while we were there he did notice a slight curve in her spine that he had not noticed or showed up on the x-rays prior to this visit. While he gave her a clean bill of health to push her as hard as we feel comfortable to get her up on her feet he did feel the curve needs to be more carefully monitored so we will be seeing him again in January. Oh joy...just when you think you can formerly remove a doctor off your list he seems to hang around for awhile longer!

Because I do not believe in letting Chloe get stagnant in her development the PT's and I have come up with a plan that so far Chloe doesn't like at all, ha! Oh well, all I can think of is when she is on her feet and is able to see her world from that point of view she enjoys it so much. I feel like I would be failing her as her mother if I sat back and just let her go at her own pace. In everything else she has done she has pushed herself and her therapists have often said they feel as if she has done her own therapy...its not my plan to make her hate therapy, but when I know she can do something I am not going to sit back and let her get around to thinking about it! Now on to happy happy things!

If you have been following this blog you know that on her first birthday last year I couldn't blog about her birthday due to the extreme anger I was feeling over everything in life that had to do with this precious little girl! It took me until mid-May I believe last year. Well, it is June and I have yet to blog about Chloe's birthday. I am happy, happy, happy to report it simply has been out of sheer exhaustion that I have not reported on this most momentous of occasions. I should start by saying that April was an amazing month for us as a family as Chloe Girl was able to finally meet, face to face, another little girl with 1p36 Deletion Syndrome...YAY!!!! It was also the first time for me to meet a mom that has walked such a similar path in life since the birth of her precious little Kylee! I can not thank Karen enough for making time out of her extremely busy schedule to meet with us. There was an instant bond between all of us that nothing will break. Our other kids were able to see, wow, there are other kids out there that know what its like to have a special sibling, with the same disability. It was a positive wonderful experience for all of us and I really don't think any of us wanted to leave. I can only hope this will be the first of many more outings we can experience with not only this family, but others that are within a days drive. I am just thankful there is someone within a couple hours of us both to the north and the south...I know there are many of our families that do not have that luxury.

On the morning of April 13th I awoke to Chloe blowing raspberries and giggling at something that caught her attention. Still have not figured out what was so funny, but she did. Perhaps it was because she knew she showed all those doctors they didn't have a clue of what she would be capable of doing by her second birthday! Queen Chloe, as she has been deemed within the family, was showered with much attention that day. One thing is for sure, she is not just any old 2 year old around this house. Her siblings remember what it was like for her to be in the hospital more than out of it her first 18 months of life. For her to be home, healthy, happy and improving everyday has been a huge blessing to everyone. I wanted to invite the entire neighborhood, maybe town, all the doctors, nurses, therapists, etc that have ever worked with Chloe over for a huge celebration. Of course, I didn't do that. Why you might ask? Well, because I haven't got to the point in my life yet that I am willing to expose Chloe to everyone else's germs. Go ahead and laugh, but after you fight through illness upon illness, there just becomes a point where the over-protective side kicks in and you just want to make sure that nothing else can harm her. I realize that isn't realistic...but in most other cases I promise I deal in the reality of the now.

Chloe has loved ladybugs since she was able to differentiate between them and other things in her little environment. Big sister Miranda spent a great part of the day making and decorating bunches of ladybug cupcakes just for her baby sister. Then on to ladybug wrapping paper that couldn't be found in a store as well as a matching card. The sweetest part of the process was having all the kids sign the card with heartfelt wishes for their little sister, hopes I will be able to share with her as she is older. Everything was low-key, relaxed and an overwhelming relief.

We went an entire winter with only one elective hospital stay and no emergencies. Over the past year she has learned to sit unassisted for as long as she likes, go from sitting to laying down to sitting to crawling any time she wants. Chloe has mastered the ability to be up on her knees and push a toy across the room. Many of these things the doctor, on December 19, 2008, told us she may never be able to do and if she did, don't look for it before her 4th or 5th birthday, she is doing simply for the sheer delight she gets out of exploring her world. Chloe has many hurdles yet to come. She is still non-verbal except for when she wants you to know she is there and would like to invite you into her world! She has yet to learn to stand for long periods of time and walking is still in the future for her.

We are exploring options for her to communicate, not saying we don't believe she will speak one day, but until that day why allow her to continue to be frustrated because she simply wishes to express a need in her life. She will be going to the CASC clinic at the Waisman center to see what options will best fit her for the time being. She will begin feeding therapy at Middleton Rehab in Middleton, WI by the end of the summer (insurance, don't get me started) where we will focus more and more on her ability to get back to enjoying all the candy, cookies and of course broccoli she can possibly eat...for herself! The joy she got out of getting the crumbs from her fully decimated cupcake was tremendous! Chloe will continue with all the amazing therapies she is receiving through our local Birth to Three (OT/PT/Special Instruction). How I will find all the hours in the day for all the different therapies and programs she needs to continue on her path toward being all that she can possibly be is yet to be determined. On top of all of this is her brother Connor's recent autism diagnosis and all the needs that have to be met for him as well, not to mention five perfectly typical children and their busy schedules! Throw in my health issues and its a recipe for pulling your hair out...however, I refuse to give up. I refuse to let Chloe or Connor fall along the wayside for any reason. I know so many of the families that read this are in similar positions with their children and somehow we all manage to make it from one day to the next. One of our therapists said that given everything we have going on in our family right now they couldn't believe we would choose to battle through and commit to the therapies we have committed to...then, on her last visit with Connor before he aged out of BTT, she looked at me and said Connor has gained so much through the last couple of months, how thankful you must be that you didn't quit when the already tough going, got tougher. Thankful doesn't even begin to touch how I feel when he says, "Love you Mommy" ...words that were not even within his understanding a few short months ago!

We have been blessed with these two precious special children. No matter the difficulties we have faced I can't wait to see what the next year brings for our little Queen! I look forward to finding the time, somehow, to start a blog for Connor. Through all of this he has been a trooper. Many days I look back and wonder where he would be at if Chloe had been healthy and I could have spent more time with him in the very beginning, addressing his needs. Most of those days I just tell myself its too late to speculate. All I can do is be present now and be as diligent as I can. In the end, Connor and Chloe will both be the amazing, loving children God meant for them to be. Regardless of my efforts and my failures!

Goodbye Tonsils & Adenoids

Christmas came and went with no health concerns. This was quite a relief as we knew that whether or not Chloe would be getting her tonsils and adenoids removed would depend on keeping her healthy. She was scheduled to see the new pediatric ENT that we found on January 6. From the very beginning of the appointment I knew Dr Heatley was a perfect fit for our family. She was straight forward, compassionate and very concerned that our concerns had not been addressed by our previous physician. Upon examination of Chloe she said that she didn't even need the results from the sleep study to see this child needed to have at the very least her tonsils removed. Due to many issues going on within our family, the size of her tonsils and the sleep study results she scheduled Chloe for a priority T & A.

A day after her examination I received a call and the date was set. January 21 would be the magical day for just one more step in Chloe's progress toward being as healthy as possible. The days proceeding her surgery we kept her home as much as possible and kept her away from anyone that even showed the slightest hint of illness. The morning of January 21 arrived and off to American Family Childrens' Hospital we went. Her surgery was scheduled for 3 pm, but uncharacteristic to how most hospitals run Chloe was actually able to go into surgery at 2 pm. Her surgery went off without a hitch and before I knew it she was in recovery. Dr Heatley came in to give me an update on the procedure. She was amazed at just how large her tonsils and adenoids were. Normally she likes to remove the adenoids first and then the tonsils. She had to remove one tonsil to get back to the adenoids. Upon getting into the region of the adenoids, she determined that Chloe had possibly the largest adenoids she had ever seen creating about a ninety percent blockage. She was very sure that this procedure would improve the quality of Chloe's sleep and life tremendously.

Because Chloe has a seizure disorder they wanted to keep her in the hospital to make sure that she was not going to have any difficulties with uncontrolled seizures. She slept the entire evening and all through the night. When she woke up the next morning she was having some issues with pain control and we were a bit worried she would be stuck there an extra night having to deal with pain management. After trying a couple of different medicines Chloe settled in and seemed to be very comfortable around noon that day and we felt comfortable being discharged. Over the next few days we managed her pain and rapidly saw Chloe become sassy little Chloe all over again. This surgery did not at all hinder her from being active and to continue with therapy as scheduled.

I have to add that the change was almost immediate. Her snoring stopped within days. Normally, Chloe would need at least 10 hours of sleep a night. She would easily sleep for 12 hours a night, if her brother would let her. Within a week she was sleeping 8 hours a night and woke up energetic and ready to go. She would take at least two naps if not three a day prior to the surgery. Now she takes one 2 hour nap a day and requires far less down time. Of course, this does mean mom has to have way more energy to deal with the new and improved Chloe. Time to buy better vitamins!

Thus ends the month of January. Now onto much more exciting things for Chloe...

November and December!!!!

October was a super busy month...with surgery rechecks, orthotics and Chloe's first Halloween...the past year she was very ill so there was no celebration going on at the time. I did forget one rather large event in the month of October...Chloe won the H1N1 lottery and won quite a case of the flu...

I can not say how thankful I am that she had the g-tube and the nissen had been performed...this made the distribution of the proper medication to her so much easier! She started running a high fever, we knew our daughter Claire had been exposed and had what we then thought to be cold symptoms, so out of cautious parenting for a child that tends to take the smallest illness and make them life threatening off to the pediatrician we went. Dr Chao did think it warranted putting her on Tamiflu, the anti-viral they use to treat H1N1, as a precaution as we awaited the test results. Not even 24 hours after giving her the first dose you would have never known she had been ill. Her fever broke, she was up and crawling around and back to her normal sassy self. Sure enough, three days later, the pediatrician calls and informs us the test came back positive. So glad we took her in and so glad our pediatrician isn't afraid to use a good dose of common sense when called for and not always wait for those test results.

Now back to November....finally an illness free month, therapy went smoothly, and Thanksgiving went off without a hitch! Its actually quite nice not to have to report a crisis...so having said that we will move on to December!

December:

Once again an "illness" free month. Chloe did experience some issues with her needing to have the medication she takes for her seizures adjusted. She woke up from a nap one day and while sitting up she went as stiff as a board and started jerking all over. When I picked her up she remained rigid and continued to jerk violently. She rarely does suffer from seizures, but I have to say they never get easier to witness! After speaking to her neurologist and doing a follow-up EEG it was determined that her weight gain was responsible for the seizure. She had not had an adjustment on her Keppra in months and had gained almost five pounds. The EEG recorded no new seizure activity so we all felt comfortable with the increase of the medication. There have been no more seizures since then. We feel very blessed that her seizures are, at least for now, very manageable.

December also brought the dreaded sleep study. We had been waiting for this forever it seemed. The Nissen was performed in September, but it took until December to finally get the sleep study scheduled. For any of you that have had sleep studies done on your children you can sympathize when I say....NEVER EVER EVER again PLEASE! It took almost four hours to get her hooked up and get her to leave the electrodes and monitors alone. The nasal monitors were the worst and of course the most important. Eventually, she wore down and we were able to get everything in its place. Sure enough, the study showed she stopped breathing at least six times an hour. It was determined that she would be referred to an ENT for consultation to have her tonsils and adenoids removed.

Christmas came and went as we waited for a call back from an ENT's office about getting her in for a consultation. We decided that we would seek the advice of a different ENT then we had originally been seeing for Chloe. Its not that he was a bad doctor, unfortunately I did not find him proactive and too narrow-minded in his practice to be a good fit for our family. At first glance, all the nurses were convinced we couldn't get in any sooner than January 25th for the consultation...that was not good for me. After what seemed like a hundred calls I finally found someone trustworthy to see her sooner.

Overall a very good month for our family....I can completely handle more and more like it!

October Orthotics and More!

The month of October was once again a busy month for Miss Chloe. Originally we had thought she would be waiting to be fitted for orthotics and gait trainers until after she had plenty of time to heal from her surgery. It seems Chloe never ceases to amaze us and was acting as if she had not been through anything less than a week after arriving home! So....off to the rehabilitation clinic we go for a SureStep Orthotic fitting.

Fitting Chloe for orthotics is much like tying down a wildcat and trimming their nails. She hates and I don't use that word that often getting her feet touched. The idea of holding them still to measure them for special shoes goes above and beyond the level of torture she wishes to endure. It took two of us to hold her while the technician measured her feet. After taking a deep breath and calming down she was able to sit on my lap and look to see what kind of shoes she wanted. They come in all patterns and colors. I have to admit I was a bit overwhelmed what I should pick. She had at that time just started getting into books and turning pages so she thought it was a great deal of fun to look at the book. I had given up on picking a pattern when she kept grumbling at me and taking the book away. The technician noticed, before me her always attentive mother (ha) could that she seemed to be drawn to a particular pattern over and over. It is the ladybug pattern. One of Chloe's all time favorite toys is this spinning toy filled with ladybugs. I thought perhaps it was only because of the noise. Apparently, over time now, we have realized that she loves ladybugs in books, her toys and on her orthotics! I have called her many things since birth and one of them has been buggie so I guess it only fits!
After two weeks wait her orthotics arrived and began the process of breaking her into them. We could tell the difference almost immediately. She began to tolerate more tactile exposure to her feet and lo and behold she actually began to bare weight on her feet. Most days she no longer fights to have them on. Every once in a great while she wakes up with a tude and then all bets are off.

Nissen Fundoplication update:
Since the placement of Chloe's original g-tube in February of 2009 Chloe has slowly started to make important gains. Before she had this placed she was unable to lift her head up for very long and the idea of rolling over wasn't even a thought in our minds. Even through pneumonia after pneumonia, MRSA infections, other types of infections and normal illnesses brought home by her siblings from the germ infested schools, she was beginning to show her true nature. Its amazing how much having good nutrition has improved the quality of her life and our lives as her family. I didn't think we would ever have it any better than we did at that point in time. Even though we struggled with illnesses she was rolling over, beginning an army type crawl and was a non-stop ball of activity. I couldn't have been more wrong!

When Chloe had the Open Nissen Fundoplication surgery to deal with her constant reflux and the pneumonias that seemed to follow, her whole life changed. Prior to this Chloe had been stuck in a feeding chair for an hour per each feeding. This occurred four times a day. So four precious hours of Chloe's day were wasted, in a sense, due to being stuck in this position. Other than using hand manipulatives and such we really couldn't do much with her. After her surgery her feeding takes approximately fifteen minutes four times a day. An entire three hours has been added to her development and growth period. I feel this has greatly improved her ability to become an extremely different person.

Shortly after the surgery Chloe went to a full crawl...no more dragging this girl's belly. She had been able to sit for short periods of time on her own and sort of go from sitting to laying down back to sitting unassisted before the surgery. Now she was sitting for as long as she pleased, going from any position she wanted basically unhindered by the lack of muscle control needed to perform so many "normal" actions we take for granted in a typically developing seventeen month old child! This became increasingly apparent to us when our PT came to our home after having not seen her for six weeks while she was on maternity leave. She walked in the door saw all that Chloe was doing and said, "Well I guess I will be re-evaluating her goals as she is currently doing everything I figured we would need to start working on!" Music to this mama's ears!

For months I tried to get Chloe's GI to listen to me regarding how much her inability to eat due to her reflux was holding her back. For months I researched and talked to people not only in our 1p36 Deletion Syndrome support group but others who had children requiring this type of surgery. For months I was shot down by my doctor as saying this was an unnecessary procedure. Finally, finally, finally....I got one doctor to listen to me and to my pediatrician regarding our concerns for the condition of Chloe's lungs, her overall health and how much having this constant reflux was holding her back from even making noises. How would you like to have acid sitting continuously in your throat? I dare say none of us would be as happy and as productive as we could be if we lived under those constant circumstances. Some people might say this was an unnecessary procedure with risks that didn't need to be taken. My answer to them is, I am her mother and I will do whatever it takes to help her be productive, happy and lead the best quality of life she can possibly have. I went into this procedure sold on its benefits and came out of the process wishing I had changed doctors sooner. I will be forever grateful to the GI that placed Chloe's original button under emergency conditions. He saved her life. However, I refuse to just stop at what is necessary to keep Chloe alive and always, always, always push to do what will give her a life!

Wow...that sounds a tad bit soapboxey, oh well....I have never been accused of being a quiet person!
Our Little Red Riding Hood...Halloween 2009!

Where to start....September!

I believe the last time we all met Chloe was going in for her Nissen Fundoplication...so many months ago! So many months ago! I have decided to add a month a day until I get caught up to the wondrous month of February so as not to burden you with so much to read!

September 14th was the big day for Chloe's Nissen to be performed. As in typical hospital fashion we arrived at 10 as requested and her surgery was delayed by three hours. Finally she went in and a very long four hours later, Dr Gregory Lund, Chief of Pediatric Surgery at UW-Hospital, came to tell us that eveything went great. No complications and she was headed to recovery. That surgery is rather common place in the world of our 1p36 kiddos, but nonetheless a daunting procedure when you think of all the possible complications that could take place! In typical Chloe fashion, she decided to take as long as possible to wake up after surgery. She loved all the extra attention...trust me on this one!

For the first few days she just laid there. The pain medication and the pain itself kept her very sedate. My normally active little girl was definitely showing that she was not pleased with all she had been put through. I can recall sitting on my chair, reading a book, when out of the corner of my eye I see a little red head pop up and look at me. Its as if something in her turned on and she was ready to roll! It didn't take her long to realize that while sitting up might not be such a horrible thing getting on her knees to try to crawl was perhaps not such a good idea. That having been said, it didn't take her long to get her sassiness and energy back.

What was supposed to be a three or four day ordeal turned into a nine day/eight night stay in our local four star hotel...American Family Children's Hospital! While she was recoverying physically quite quickly in the area of feeding things were not progressing so well. She couldn't seem to tolerate her feedings and was in constant pain whenever we tried. After many many attempts at many many different techniques we finally found a method that worked. I can say we had the most understanding and amazing nurses that made our stay as easy as possible. However, some of the surgical residents were not quite so impressive...at one point Daddy decided he had watched them torture Chloe enough and instructed them to go back to school because they weren't trying anything "new" on his little girl! That of course won him Daddy of the Year Award with the nurses....oh how they long to tell doctors what only the parents are allowed to and usually don't!

Through all the struggles we went through to get Chloe back on track I must say that single surgery has changed our little girls life forever! The strides she has made since that autumn day are remarkable....

More to come....



More to come....

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!

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.