Chloe Girl

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

2010-05-30T16:04:00.000-07:00

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

2010-04-12T11:02:00.000-07:00

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!!!!

2010-02-01T20:11:00.000-08:00

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!

2010-01-26T08:34:00.001-08:00

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!

2010-01-25T19:20:00.000-08:00

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!

2009-08-27T11:38:00.000-07:00

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!

2009-08-15T19:45:00.000-07:00

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!!!

2009-08-15T18:59:00.000-07:00

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!

Chloe is "1"... The Untold Story!

2009-05-19T08:10:00.000-07:00

Miss Chloe Girl turned one on April 13th. Try as I might I have not been able to blog about this amazing day! I find myself watching her and wondering what is wrong with me. Aren't you ecstatic with the progress she has made? Aren't you happy you made it through the winter months of illness after illness and things are beginning to look up with her health? Of course, the answer to both of those questions would be YES! So, what is my problem??? Unfortuntately, the answer to that question is not so forthcoming!

The morning of her birthday dawned much like any other morning. By the time we awoke from our moderately good night's sleep it was already well past the time of feeling that first labor pain that would bring this tiny miracle into our lives. The whirlwind trip to the hospital was over. The two pushes that would signify her arrival already completed. In fact, by the time we arose from our beds she had already been in our life for an hour. A very long hour of waiting and waiting to get my first up close and personal look at my new baby girl. The news of her red-hair, well to be honest, hair at all still shocking me as all of my other beautiful babies were born missing any such surprise. Hearing the whispering of the doctors, she isn't breathing as well as we like, she's a bit blue, her apgar's are low...also all things I had never heard at the birth of my other children.

Finally the pediatrician arrives. She examines our tiny baby girl. We knew she would be small, but I could never have imagined her weighing in at only 5lbs 11ozs and a mere 19" long. The pediatrician after a few short minutes declares her to be fine. The nurse bundles her up in a warm blanket and brings her to me. She is cold to the touch and upon retrospect I knew that this precious little bundle was not just fine. My heart just wouldn't allow me to believe it. I remember looking at her face and feeling like what are they missing. Her soft-spot is so large, extending way into her forehead. Her eyes, do they look different? All questions I knew were lingering in the back of my mind. I am assured by the medical professionals surrounding me that all was well and she was just a tiny baby. Nothing unusual when the mother is of advanced maternal age!

As the day progresses she goes into respiratory arrest and is taken from our loving arms and placed in a cold ambulance surrounded by strangers. Off to a NICU forty miles away, she goes. I know at that moment her dad and I both wondered, will we see her again.

Sadly, I look back now and think to myself...Here is this precious little girl surrounded by dozens of highly trained professionals that work strictly with newborns in extreme situations and not one of them came to us and said we think your daughter has medical issues that have yet to be diagnosed. If I as her mommy could see it why couldn't they? We would bring her home a few days later with the wonderful, but misleading news, that she was fine. Just a newborn condition that occurs with fast labors and small newborns. For many weeks later I would question. Why doesn't she eat like my other babies and why when I look in her face do I see a disabled child? I would often question a good friend of mine who has a son with down syndrome. Even after her seizures were diagnosed and the brain abnormality found no one could give me the answers to these questions.

Thankfully, God placed in our lives an amazing pediatrician. She put us on the road of figuring out her seizures. She placed us in touch with an amazing neurologist who did the rest. Our pediatrician would often look at Chloe and check the placement of her ears, examine the creases in her palms and the bottoms of her feet. I know she was looking, studying, trying to figure out what she was missing. Finally, knowing I am a straight shooter, she says we need to consult a geneticist. After being told the waiting list was months long she decided to order the tests for herself. In the process of getting those results Chloe took a turn for the worst and ended up right under the noses of the geneticists we fought so long to see.

The weekend before Christmas we got her diagnosis. Now, fast forward to her birthday. Her very first birthday. A day, at some points this winter, I didn't think we would reach. This day should bring so much happiness, so much joy, so much a feeling of accomplishment. She picked this day, of all wonderful days, to roll over not only once but six times. So, why do I wake up finding myself angry. Not just a tiny bit angry, but a whole lot of Angry! Angry at myself for not pushing for a diagnosis sooner. Angry at the doctors for not taking the time to see my child for what she really was, a child in need of intervention. How much time was wasted because they refused to see what was there? What could have been done to prevent so many of her illnesses this past winter? Angry that there are people under my own roof that refuse to open their hearts to this amazing little girl and a strong desire to throw them out on their ears. Anger, Anger, Anger...!

So you see my friends. How could I blog this on my special little girl's birthday? I couldn't. As much as I wanted to, as much as I wanted to scream at God and everyone around me all I could do was smile. Smile and hold it altogether for the rest of the family that was busy baking cakes and decorating them. Thinking of ways we could try to get her to eat her cake when all of her nutrition comes from a tube. Honestly, I couldn't wait for the day to come to an end.

At last, the day did end. It was at this point, when I laid down next to my beautiful little "1" year old that my anger began to die. I am not sure what caused it other than when she rolled over towards me, as she does every night, and put her hand on my face. I will forever find it amazing how this child comforts me more than I comfort her. Even now as she rolls from one end of the house to the other I swear she stops right in front of me, looks up with her toothy grin and says don't you know Mommy...everything will be as it was meant to be, and then continues on her merry way!

Home - Update!

2009-04-04T19:44:00.000-07:00

It's been a couple of weeks since Chloe girl was finally released from the hospital. I have been meaning to update, but it has been a whirlwind experience since the minute we got home. We were released from the hospital with Chloe still having a having white blood count and a high platelet count. We will begin the long process of determining what that is all about when she goes for a recheck on her MRSA on Wednesday, April 9.

It was great to leave the hospital, but coming home to Connor having the stomach flu made things shall we say, interesting. For the first night it was just dealing with him being sick. However, by the end of the next day not only was my nine year old, Christian, sicker than I had ever seen him, but I know I was sicker than I had ever been. Then as the night wore on, Don fell prey to this nasty virus leaving my wonderful eighteen year old daughter, Miranda running the show. Along with help from my fourteen year old, Benjamin, they managed to keep Christian and me alive with ibuprofen, Sierra Mist and Gatorade. On top of all of that they took care of Chloe as it took every ounce of energy Don had left over, as he wasn't as sick as I was, to try to handle a still very sick little Connor. By the following morning I was able to semi-function. Enough for the two helpers to head off to school and for two more to succumb to the virus. It would have been a miracle to expect Chloe not to get it so it was no big surprise that immediately after her morning feeding she also became sick.

For the next few days we struggled through trying to get the family back on our feet. Scouring the house multiple times trying to rid our home of the germs that threatened to kill us! I would just get to the point of being well and it would hit me again. I think that we are finally all on the mend and can take a deep breath. Well that was until last night....

Chloe has struggled with getting over diarrhea that comes along with this virus. At the suggestion of the pediatrician we have switched her over to lactose-free formula. It seemed to be helping until last night. Just prior to bedtime when hooking Chloe up for her night-time feeding we noticed that around her g-tube area it seemed slightly swollen and definitely red. Normally, it is a very nice light shade of pink and not at all unusual looking. So, this hit from out of the blue. I put some medicine on it, she wasn't running a fever and didn't otherwise look ill so I thought we could leave it until the morning to see what happens through the night.

Somewhere around 2:00 am she had the first of many bowel movements indicating her diarrhea had returned with a vengenance. Her button area continued to look red and swollen, still no fever but definitely something brewing. Upon waking this morning, we called to see if by chance her pediatrician was back from vacation. Of course she wasn't! The doctor on call for her was not a pediatrician and didn't feel qualified to handle Chloe so after much phone tag we were able to finally reach a pediatrician that works with our peds GI to give us some counsel. After speaking to her and having her look up Chloe's records she feels that it is something that will pass over for Chloe, but she has agreed to see Chloe tomorrow morning if her button doesn't appear to be normal or any other strange symptoms have occurred. As the day has progressed I do not believe the button looks any better so off to the doctor we will go tomorrow morning.

And here the post was interrupted....lol!

The next day after speaking with the ped on call they decided that if her regular ped was due back the next day they would farm us off to her. We took Chloe in that day and sure enough she said yes...she has an infection! She cultured the junk coming off of the site and also her blood just to make sure the MRSA didn't return. To make a long story short yes...she did have staph in the button but thankfully not MRSA. After a round of antibiotics and creams and some good ol' TLC she is up and on the move again....

Stay tuned for her birthday update!

Yet another hospital saga...Part II

2009-03-16T19:25:00.000-07:00

Day whatever....

After receiving good results from the echocardiogram late yesterday evening we settled in for the evening, read some silly books about Muggins the Mouse and hit the hay. Monday morning started off in a hurry as daddy and Connor got here to lend support during Chloe's bone scan. Don knew I was close to having an emotional meltdown and arrived just in time to help me keep it together. They had tried for hours the day before to get an IV with no luck and the hours counting down to needing to inject the dye for the scan were quickly turning into minutes.

Finally one of the nurses that we had at our previous visit came in and was able to locate the sight and insert the IV just like that. The dye was injected and we waited the long three hours before the test started. Chloe and daddy cuddled and I got some much needed play time with my little Connor Boy. In all of this he has been a trouper. He was the center of attention until at 11 months of age his sister came into the world and has been doing her best to upstage him ever since! I am sure as night after night his daddy tucks him in somewhere in the back of his mind is where is mama???

In a side note, because of all the issues with Chloe it took awhile for us to realize that our little boy though physically and motor skills wise developed very quickly was exhibiting some signs of being special as well. Recently, he has been diagnosed with Sensory Perception Disorder and has started occupational therapy to help deal with his needs. As I run around after him in the halls of this hospital I am forced to realize that in the midst of all of her issues he has been left to struggle through his own. I can not help but wonder at times why me? Why so close together in age? How am I ever going to be able to love these two enough, work with them enough, grow with them enough to give them all that they deserve to have? Somewhere, somehow I have to dig down deep enough to find those answers and realize that at times things will be forgotten, but they will always know that they are loved.

At about 2:00 pm the peds intensivist comes in to pick up our precious little Chloe and take her for her scan. He assures us he will bring her back in an hour safe and sound. He was present when placing Chloe's g-tube and my confidence in him to deliver is high. Off to the family play room we go to spend some quality time with Connor. He had been eye balling a car to drive in there and a fish tank with Nemo swimming around in it that he needed to check out. We played, ate some lunch and Don and I found ourselves looking through a kids magazine, Highlights, in search of hidden pictures. Yes, we were bored!

I decide to go back to the room to see if she had arrived and sure enough she just got there. Still on the hospital gurney, still completely sedated. Daddy and Connor come around the corner shortly and we as a family start to wake our little one up. The nurse begins to worry as she is not coming out of the anesthesia as quickly as they figure. After a half hour or so, up bounce her eyelids and she looks at us as if what??? I was just resting. Big smile and all.

Long and short of it is that her bone scan came back normal. Now we know our little Chloe has no heart issues and no bone issues. That still doesn't give us any information on what is wrong with our peanut. One doctor suggests that maybe she just always runs a higher white blood count and platelet count. Our pediatrician disagrees in the assessment. So, yet again we sit in the hospital. Chloe sleeping nearby after a very long day. Me wishing I could finally sleep , thinking of my other kids. Especially the nine and ten year olds that are waiting for me to come home and finish the book we started reading together before their sister became ill.

Tomorrow we go back to the pediatric infectious disease doctor and now a hematologist. Again...just trying to take it one day at a time...

Yet another hospital Saga!

2009-03-12T17:29:00.001-07:00

Do you ever say things wishing you could go back and take the words back??? Well that would be me and I wish I could go back to March 2 and not say hmmm, with Chloe having this feeding tube I haven't had to call Dr Chao, our pediatrician, in awhile...hmmm, jinxed myself there...

That very night Chloe spiked a really high fever and started with a cough. I called Dr Chao the next morning. We both agreed she was probably just dealing with a virus as she had just seen her G.I. doctor the day before and he thought everything with the button and her overall health was good. So, we decided to wait it out. Off and on, that Tuesday and Wednesday she would run a fever and then the fever would go away. She didn't have any other symptoms. Again, I called the pediatrician and again we agreed most likely a virus.

Thursday morning we woke up, her fever was up and wouldn't you know it also my pediatrician's day off. Figures! However, I do have the world's greatest pediatrician so I placed a call to her cell knowing that she wouldn't get it until she was done helping out at her children's schools, but would call me back soon. She called me back at noon and said she would meet me over at the hospital right around the corner and we could find out what was going on. After a thorough exam the doctor was convinced she had an infection brewing but couldn't pin point it. As a precautionary measure she did a blood culture and other blood work, sent us home on an antibiotic and directions to call her if she got worse over the weekend. The doctor would be at a conference, but she would be in touch if we needed to be.

Friday morning, Chloe woke up, was perkier than she had been in days so obviously the antibiotic was working. My two boys and step-daughter went to their other parents' homes and we settled in for what we thought would be a more relaxing weekend with the two older kids and Connor (our 21 month old) and little Miss Chloe. About 7:00 pm I get a call from Dr Chao and I begin to explain that it seems Chloe is doing better. She said oh good, well I got a call from the lab and they said that Chloe has bacteria growing in her blood. I said ok, what's this mean. She said, well she needs to be admitted for IV antibiotics right away. I said ok...here we go again. We get everything together and head off to the hospital. On the way, the doctor calls, and said that the radiologist report finally came in and they see pneumonia. At that point, all you can think is what's next....If I only knew how prophetic those thoughts would become...

At the end of Saturday evening the doctor that was on call for my pediatrician came in and said well we have determined that the infection in her blood is staph and there is some concern it could be MRSA. Your doctor had already wondered if this could be the case and has started you on one of the best antibiotics for this, however it hasn't been working so she wants to change it to a different, stronger antibiotic. She will be in on Monday to see you and I will continue to follow-up with you throughout the weekend.

Sunday afternoon rolls around and her partner comes and says we have confirmed its MRSA. We are going to continue with last nights antibiotic and see where it goes from here. No offense to this doctor who is very good I was not feeling as confident as I would have had my own doctor came in and dealt with Chloe. Thankfully very shortly after I make that statement in comes Dr Chao. Upon evaluation there was concern for meningitis as well as staph and we started down the path of diagnosing that issue.

During the next week we struggled with feeding situations. She wasn't tolerating her feeds. She seemed to be having seizures. Each and every day seemed to bring on a new challenge. After conducting an upper GI we determined she has severe reflux and needed to be on medication for that. The concern really became is she aspirating. So many things to look at and so many decisions to make. We decided to get her healthy and try to look at each of these new developments on an out-patient basis as the hospital we were in was not staffed to handle getting these answers. Through-out all of this she continued to look better and better and we really thought she was working toward a Sunday release day.

To make a long story short...or attempt to... after six days of iv antibiotics the pediatric infectious disease doctor as well as a local pediatric intensivist recommended taking her off of the IV antibiotics, take a new cbc to check her white count and make preparations to go home. At this point Chloe looked healthy, was acting normally, and seemed to be back up and running. The lab techs came in and pretty painlessly took the blood tests, I gave Chloe her early morning feeding and thought ah...the pediatrician has clinic this morning so she said she wouldn't be in until after noon so I can take a little snooze while my Little Princess was fast asleep. Twenty minutes into my long winter's nap I feel a nudge on my shoulder. Hey Jeri, an ER nurse will be in soon to start a new IV because Dr Chao wants her back on IV antibiotics as her white count has seriously elevated since Thursday. My heart sank...all I could think of is what's next.

All to soon the what's next came. I get a call from the pediatrician. I have just spoken to Dr Benson, the intensivist, and he believes Chloe needs to have tests to see if this infection has decided to put up residence either on Chloe's heart valves or in her bones. I knew what this meant...our hospital doesn't have the capabilites to do that so another transfer was necessary.

I call Don up at home and gave him the news. As most dad's do he got quiet and in his way tried to process that his baby girl wasn't coming home the next day. As a family, we put a plan of action in order. I would go do a few errands that morning to prepare for the possible long stay at a hospital forty minutes away and spend time with Connor our twenty one month old as well. He would spend time doing daddy duty with his little sassy girl as he calls her. The stress was enormous as I had already been in the hospital for a week so the morning didn't run nearly as smoothly as we had so carefully planned it to. All in all we managed to get the objectives done and by 2:00 pm we were being transferred. Thankfully, I was able to go with her in the ambulance once again and the same two gentlemen that transported her the first time were there again. They remembered their little red-head girl and came proudly with a pink stuffed bird that the family is still trying to put into its correct bird kingdom classification!!! It became one of her best buddies immediately!

Now we are back at St Mary's after an uneventful transfer. Last night was check-in (sounds like I am staying at a hotel) and just getting the plan of action together. This morning at about 9:00 am the techs came to take the echocardiagram. We are currently, not so patiently, awaiting the results of that test. Tomorrow afternoon is the bone scan for which she will be sedated. Right now the doctors have opted to leave her on g-tube antibiotics to see if this infection will show itself. So far no signs of fever or other issues have become apparent.

Over and over in my life I have heard from not only my mom by birth but the other woman that I have come to look at as a mom...one day at a time. That is what I am trying to do. Just one day at a time...its hard to keep at bay that the one day at a time has ran into over a week for this one little virus we thought she had. Even harder to think that the one day at a time has ran into even longer when we look back at a year of such pain but such joy as well....

New Experiences

2009-02-28T13:35:00.000-08:00

Well it appears that since Chloe no longer has to be forced to drink from her bottle she has decided that she really doesn't mind other things in her mouth. For the longest time, her therapist and I...not to mention all family members have been trying to get Chloe to be receptive to having anything around her face and especially in her mouth. Seems she has decided that playing in her mouth with anything at this time is just fine with her...the precious little stinker!

Since Monday of this week she has consumed chocolate pudding, strawberry flavored applesauce, Pace Picante sauce (I know...strange), and apple juice. Of course, she still doesn't want a bottle near her mouth and if she does it is only to chew on the nipple for a couple minutes and then spit it out. She won't accept a spoon either, but will gladly lick it off your fingers and in the case of her daddy nibble on his finger along the way. She seems to think he is one of her favorite chew toys.

All in all I can say with great certainty that her absolute favorite thing of all to chew on as much as possible is a stuffed lion...Alex from Madagascar...that her big brother, Christian, got her during her last hospital stay! Good job Christian...you're the hero! Enjoy your twenty four hours of fame!

Life with Chloe!

2009-02-25T10:41:00.000-08:00

The past ten months have been in many respects a time of great joy and great trial! Having been blessed with a new child on the way, our already large blended family, was a bit apprehensive as to how this new addition would change our family. Little did we know that not only would she bring the basic everyday challenges that come with adding a new child, she would also bring the joys and stresses of a child with special needs.

From the time of her conception, which occurred after having my tubes tied, lol, until the morning of her birth I can say nothing followed "normal" guidelines of pregnancy. I had, prior to conceiving her, five normal pregnancies. Our life was already very full with six children from our first marriages and one little ball of fire that we could call all our own. It was somewhere around his seventh month of life that I looked at Don and said something isn't right. I have gained weight and I just feel funny. He was funny?...like funny how...I said funny like pregnant...which we of course had a good laugh afterwards. However, I couldn't let go of the feeling that despite having had my tubes tied after the birth of our son Connor I felt as if I was pregnant. So, at the beginning of December I decided to take a pregnancy test just so I could later on laugh and say gee you are paranoid!!! I am glad to say that day I did rule out paranoia and instead ruled in OH MY GOD...I am pregnant again! My first thought was how on earth will we tell the kids....

I finally found a doctor that was compatible with my insurance and made an appointment for the first week in January. By this time said paranoid weight gain had started to move and I knew that we had very little time before our next bundle of joy would appear on the scene. I went to a normal Obstetrician not thinking that there were any unusual issues. After completing an ultrasound to try to determine what this child's due date was we began to suspect that things were just not right. We found out immediately that we were expecting a baby girl which in and of itself was exciting as the girl's in the house were seriously out numbered.....five boys to two girls! I knew that would at least lessen the blow for the girls.

The doctor said to me that the head didn't seem to be in proportion to the body and that usually indicated some severe mental retardation issues or something that was causing the body to be starved while trying to maintain growth to the brain. We were sent to a high risk OB that ordered another ultrasound and felt there were possible issues with the kidneys as well as her being a very small child. His recommendation was to send me to University of Wisconsin-Madison's Hospital and have a Four D ultrasound done by an OB that does nothing but look at high risk pregnancies. Her determination was that all of my doctor's were paranoid...seems to be a common theme in this pregnancy...and that the due date just needed to be changed to a later date. Leaving her office that day I felt a great sense of relief. They did recommend because of my "advanced maternal age" that I have regular stress tests during the last couple of months of my pregnancy. This was completed in February and her new due date was now felt to be April 22, 2008.

Chloe Girl as we had at this point started calling her was proving to the whole world that she was not going to be listed as typical or normal in any way. She was breach at one doctor's appointment and engaged the next. I could literally feel her turn herself around inside of me. I would go in and see Dr Maenner and say she's breach again, so he would take his portable ultrasound machine and say yep...you are right. Finally when we felt we had her locked in the engaged position, sounds like a mechanical term, we set the date for induction as we felt she would not last until the 22nd. So April 15th would become her due date.

Sure it would....Saturday April 12 started out as an average ordinary day. As the day went on I began to feel strange. Chloe Girl wasn't moving as much as she used to and I just felt achy all over. I had never just gone into labor by myself, one of my children being three weeks overdue before induction, so I had no thoughts that I would go early on my own. I was scheduled for another stress test on Monday so I thought well maybe they will just decide to induce me then. As a precautionary thing I decided to pack my bag that day just in case. We tucked our, at that time, 11 month old Connor Boy in bed and hit the sack at our normal time of about 11 pm. At about 4 am Sunday April 13 I was yanked out of my sleep by an enormous contraction. I rolled over and said to Don I think I am in labor. He said, in his sleep, you can't be. Isn't it funny how hubby's become doctors in their sleep. Four minutes later...boom...another hard contraction. I laid there thinking ok that just can't be. Four minutes later a third one. By this time I am thinking great I am in labor, its the middle of the night, we have a sixteen year old and nine year old asleep in the other rooms...neither of which have any real experience with babies and an 11 month old with no one to go to. My seventeen year old daughter, with lots of baby experience was with her father. I was scheduled to be induced three days later when there would have been plenty of help around, lol!

So I wake Don out of his sleep, we throw stuff together for Connor, warn the sleeping kids of what is going on and off to the hospital we go. We get about five miles from home when out in the middle of nowhere a deer jumps in front of us and yep...we total the deer and our vehicle. We have to limp this vehicle home with my contractions three minutes apart and get another vehicle which wouldn't you know it was low on gas thanks to who we will not say at this time, lol!
I quickly call our OB to warn him we were on our way as he handles all his own patients and he tries to convince me as we are forty minutes from the hospital to pull over and have an ambulance come to pick me up. I don't know about most people but I can't see myself giving birth along side the road or in an ambulance. So, after stopping for gas with my contractions two minutes apart off we go again.

This whole ordeal started at approximately 4:20 am and ended in one push at 6:20 am at Divine Saviour Hospital in Portage, WI. Upon birth her apgar scores were originally very low and for an entire hour all I could do was sit across from her in the room and watch as they worked on her and tried to stabilize her. Meanwhile Daddy and little Connor who had the privilege of seeing his baby sister being born were trying to nap in the room we would be moved to. Eventually she was deemed ok enough to be given to me. So an hour after her birth I was able to finally see the red hair that her daddy and the doctors proclaimed to me that she had. I have to admit I was shocked as none of my kiddos had hair at birth and no one in our immediate family had red-hair. I remember thinking to myself what a beautiful little girl...she looked just like a porcelain doll. She was perfect.

As the day went on her breathing became labored. I brought it to the attention of the nurse and the pediatrician decided she was in need of oxygen. Back to the nursery and under an oxygen hood she went. As the evening and next morning went on she did not improve and the decision was then made for her to be moved to Meriter Hospital NICU in Madison. I know there are many parents who have had to watch their child loaded up in an ambulance and taken away and I know that you are well acquainted with that sinking feeling that you get when they close the doors and in the pit of your stomach you wonder if you will see them again. Our little 5lb 11 oz girl, with her brilliant red-hair was put in the care of strangers.

Thankfully the pediatrician that was her primary doctor at Meriter came down in the ambulance and rode with her. We were very thankful for that as we were able to meet him later upon arriving at the hospital and he gave us a great deal of assurance as to what her situation was and that they would get her on the road to recovery as quickly as possible. After all the testing they completed at the hospital they determined she suffered from something that some smaller newborns get called TTN...Transient Tachypnea of the Newborn. After forty eight hours she was much better and on the third day of NICU we were released to go home. For all intents and purposes we felt we had a tiny but perfectly "normal" little girl and life was slowly returning to normal.

The month of May and most of the month of June were perfectly normal. She was a finicky eater and could only seem to handle a small amount of food out of preemie bottles but she was growing and looked as healthy as can be. On June 20th, after spending a day of shopping for our older kids, getting them ready for summer time activities, we came home and settled in for some relaxation. After removing Chloe from her car seat and feeding her she had what I now know to be a seizure. I had never seen a seizure before so I wasn't quite sure that was what it was so I called my pediatrician and she assured me it was probably nothing. The next day was a Saturday and later in the day she once again had one of these "episodes." Then again in the middle of the night, early Sunday morning. I called the pediatrician and she said oh its probably nothing bring her in tomorrow. By this time I knew this was not just nothing and I wanted answers. I called around and found the name of a different pediatrician. I called immediately Monday morning when her office opened and she fit us in. After explaining to her what was going on she called a pediatric neurologist and they started the ball rolling with diagnosing what these "probably nothing episodes" were. I have to say that we were blessed beyond measure that day when we found Dr Andrea Chao. She has been there repeatedly for us as we have struggled to determine who this little girl we were given is and the many challenges she faces.

On June 25th she went in for a sedated MRI. She did very well with the tests. Later that day we went for an EEG. All of these tests were then submitted to Dr Mary Katherine Dominski. We saw her two days later in her office. She at that time told us that Chloe had a condition called partial Agenesis of the Corpus Callosum. This condition explained her seizures, her developmental delays, and her feeding issues. Having been knocked for a loop by this diagnosis we at least had an explanation for her seizures and could come up with a plan of action for our little peanut. She was placed on Keppra for her seizures and those were quickly put under control.

Chloe was enrolled in the Birth to Three program. She received speech/feeding therapy as well as OT/PT. Things seemed to be progressing. I can not say enough about how wonderful our Birth to Three program is. I know Chloe would not be where she is today had it not been for the excellent services they have provided for our family. Not just through her therapy, but their support of our family as well.

In my research of this condition I came to realize that these kids were rarely ever just diagnosed with ACC. They almost always had a myriad of other syndromes. In the process of determining what else might be plaguing our little girl she stopped growing and then eventually the first week in December she stopped eating. We were scheduled to see a geneticist in January to figure out what her issues could be. This issue of not eating brought the geneticist into our life much sooner. When we were at American Family Children's Hospital in Madison, WI she was seen by a variety of specialists to try to determine what her overall health picture was. The geneticist originally felt that she exhibited signs of Prader Willi Syndrome. That was a very scary diagnosis for us. He would not put his complete weight in this diagnosis until he had the tests results. Thankfully they ruled out PWS very quickly.

We went home after she started eating again and anxiously awaited the results. December 19th I received a call from Dr Rice's associate stating they had the results of Chloe's tests. The FISH test had revealed that she had a genetic deletion in her first chromosome. This also happened to be the worst snow storm we had up to this point in the year so she suggested we meet on Monday for the formal results. Anyone that knows me knows that I was not going to wait that long. After discussing the situation with Dr Greg Rice from the Waisman Center he agreed to meet with me that afternoon. He sat us down and proceeded to tell us that she had what was called 1p36 Deletion Syndrome and began to explain what it was. I can honestly say it was like I was there listening to the situation but time had stopped and all I could think of was the day she was born and all the hopes and dreams I had for my little red-haired girl, vanishing.

Since December 19, 2008 life has changed drastically. I have since found the most amazing group of people that not only can sympathize with me, but have also walked the same path that I have. When I need a shoulder to cry on they are there...if only through the computer, lol. I have to say that I never thought I would go on a site like Facebook, but have come to realize that my daily connections with the other 1p Mom's is crucial to maintaining sanity.

In the past couple of weeks we have had to make a very tough decision as a family for our little Chloe Girl. After catching a respiratory illness on February 6th and battling through it over a very long weekend we decided to admit her into our local hospital. At this time she once again stopped eating and due to not eating along with the illness her weight dropped from an already very small 14 pounds to 11 pounds. We had been struggling with whether or not to have a g-tube placed. It became apparent to us that she needed this more than ever. She could not take fluids of any kind to include her medicine. So on February 12 we transferred, once again, our precious little cargo to a different hospital by ambulance. Thankfully, this time I was able to ride along side her the whole way.

Chloe had started experiencing some strange head movements so upon arrival at St Mary's hospital in Madison not only did they place an NG tube for feeding they also attached her to a 72 hour video EEG to see if they could find a cause for these movements neurologically. Of course, she had none of the strange movements again until after they removed it on the third day...what can I say she is a handful! She quickly started gaining weight with NG feedings and we managed to have only one incident of her pulling the tube out. Friday February 13 Dr Yaffe, the gastroenterologist, came to see us and said that it was his plan of action to have the tube placed on Tuesday. We discussed in length the pros and cons and having seen her dip so dangerously low in weight we knew we needed to do something to help her receive the proper nutrition she had to that point not been getting.

We spent an uneventful weekend at St Marys. Her weight continue to go up with the NG feedings. Her virus continued to subside and she no longer needed any type of assistance with breathing. Sunday morning Feb 15th Dr Yaffe informed us that he wanted to do the upper GI as we had been moved up to Monday and they needed to check her out before placing the button. She sailed through that with no issues and again the rest of our Sunday was uneventful.

Monday morning Feb 16 the nurse came in at 8:00 am and said its time to go Mom. I was allowed to carry her to the PICU on the floor and hold her as they readied all their needed equipment. Dr Yaffe, Dr Go, the pediatric surgeon and Dr Benson entered the room. Dr Benson, the pediatric intensivist, administered the anesthesia with me right there holding her hand and rubbing her head and off to sleepy land she went. They suggested I go get a cup of coffee and relax and they would let me know when she was done. I went to the patient/mom kitchenette and found that there was no coffee, brewed a pot quickly and got a cup of coffee. I started back to the PICU to find them all coming out saying she's all done you can go on in.

I walked in and saw my poor little peanut still completely passed out from the anesthesia. Her new little button in place and her hair still sticking straight up from the EEG leads they had yet to remove from her head. She was so tiny and looked so vulnerable, but at the same time there was tremendous peace knowing that we could now give her what she needed. The proper nutrition to ensure better growth and a higher chance for development.

For a long time I saw the placement of the button as failure. Now having been home for a week and seeing how much improvement has already taken place I can say that the only failure was in not doing it sooner. She now weighs more than she ever had before. Seeing how much better her skin tone is and she isn't struggling to just get enough food in her to survive has been a blessing beyond my wildest imagination. One wise mom said to me, as I made the comment that there is something inherent about being able to feed your child that makes you feel as if you failed to have to resort to these measures, my dear you are feeding her in a way that it takes a stronger special mom to be able to do. I don't know if I see myself as stronger or more special than any of these other moms but I do know I see myself as wiser than I was. Its amazing at how much she teaches me everyday about being a mom.

Please stay tuned for more updates on the Life and Times of Chloe Girl...