Wow! Its been a year and a half since I posted anything! Sometimes its hard coming back here reading what my baby has endured, and looking back on the bad, but then sometimes I need to read this to realize how lucky we are today. Kaesyn has done so great. He started pre school January of 2010 and has come so far. Every tiny mile stone is a reminded of how blessed I am. He never seizes to amaze me. Everyday is a new day and Im so blessed to have that. With that said, he has been having issues and is needing surgery. His TBM and LM have been acting up and causing a lot of issues. By no means is it as bad as before, but with ever cough I begin to worry. His o2 saturations go down to the high 80's, and his cough is horrific. As we speak right now everything is good, but that doesnt mean it will be tomorrow. About every month we deal with these with around the clock breathing treatments and steroids. Hes also been dealing with chronic ear infections again, which leads us to surgery. We switched ENTs and she decided to do another set of tubes, take his adnoids out (FINALLY!) and do a bronchoscopy.We wanted to do this ASAP, but at our pre op appointment they did not feel safe doing so because of his wheezing, so we rescheduled the end of January in hopes he will be well enough at that point to pursue it. Im anxious to see how well this helps him and what the bronch says. Because he has been MRSA and his conditions he will be considered high risk and have a special pediatric high risk infectious disease and respiratory team with him. As far as his neurological problems, we are just watching it. Sometime in early 2013 he will have another MRI (we moved them to every year, instead of 6 months!) His last MRI and EEG had some abnormalities in which are concerning but there is nothing to be doen, and because he has progressed sooo much in speech, motor, and cognitive skills we have faith that we can maintain these issues and he will be alright. Looking back 3 years from today, I am so amazed at how far he has come. I am beyond blessed to have such an amazing son who happens to be my hero, as well as his sister who has stayed strong with us for so long. It would be so easy for her to break down, and resent him for everything she has missed out on through all of this, but she hasnt. Ive said it a million times, and Ill say it again, but this road has led me to some of the most inspiring, caring friends ever. Never in my life before this have I met people willing to help out in any way we needed it whether it be a shoulder to cry on, someone to take Gabby for appointments. With all good there comes the bad, the bad comments made, the assumptions people throw at me to my face and even worse behind my back. It is hard to deal with cruel people, but the people who truly care are the people who help me pick myself up again. Thank you so much and a special thanks to my Grandparents, for always being there, no matter what, for always trying to understand my situation. To Colleen Longhi for always reaching out and educating me on these conditions. Tanya Jorgenson for becoming one of my best friends that totally gets me, and for encouraging me to always do my best,and being my rock when I absolutely need someon. Stephanie Hueston for providing all of us with such an amazing support group at CWL,and being all of our rock no matter what difficult struggle she has endured. Karen Tanking for being the best respiratory therapist we could ever have been blessed with, and for always encouraging me to follow my dreams, and being an inspiration to pursue them. For always always reminding me Im not being over reactive and lending a hand to comfort me when Kaesyn is sick. And the nurses, staff and doctors at our local family clinic and pulmonology clinic at childrens mercy. I am so glad that we have a medical team that loves and cares about both of my children and I. I am so glad that they take me serious, even though it was such a struggle at first. I know that they will never stop fighting with me. I could not have chosen a better community to live in and medical staff to go through this with us. I have learned so much, and over came so much in the last 3 years. I have grown so much as a person, mother and friend on my own sons expense. Gabby and him both have been my biggest inspiration to fulfill my dreams and remind me every single day that the three of us will over come any obstacle thrown in our way. We over came this, and even though we still have obstacles to over come with this journey, I know the worse is over, and we are on the right track to go many great places and knowing I have all these great people to walk with me makes it so much better. Heres to another year of blessings, health, success and faith.

Catching up...

Where oh where do I start?
Good news first.
Kaesyn had a wonderful winter/spring. He got pretty sick, just one time. YAY! We were in Oklahoma when he got pretty sick, with his coughing episodes. But within a few weeks he was well again. Seems like the malacias maybe getting better! YAY for Kaesyn! He did decide to climb up on a chair, and it tipped over and broke his foot. Poor guy. He was in a boot for a few days, then we tried a cast for 2 weeks, now he is in a boot again. We see the Doctor 6/17, this Friday to see what will happen from there.
Now on to the more complicated issues. His ear infections just WILL NOT go away, we had some lasting 3 weeks to a month. Because of this we went to see an infectious disease doctor. He did fabulous at explaining everything to me, but Kaesyn was being a monster, and I really did not understand a lot of what he was saying. I had a nurse explain over the phone. Kaesyn has excessive mucus, and an extra pocket in his ears, to where that mucus sits, and collects bacteria and its constantly infected, it gets backed up, and drains out his ears, and into his throat, which obviously goes into his stomache. ID doctor said thats explains Kaesyns explosive, abnormally STINKY diapers, and thats also why when he gets an ear infection, and we treat it with antibiotics, it gets rid of the infection in the path, but not in this extra "pocket" Kaesyn has. Because his airway tissue is sensitive that also leads to breathing problems on top of the issues the malacia causes. He wants the tubes out of his ears, and he wants to test him for primary ciliary dyskenesia(a rare, ciliopathic, autosomal recessive genetic disorder that causes a defect in the action of the cilia lining the respiratory tract (lower and upper, sinuses, Eustachian tube, middle ear) and fallopian tube.)However, the ENT needs to do that, and she is not comfortable with putting Kaesyn to sleep. So plan is, next time another Doctor wants to put him to sleep for a procedure, she will come in and do her thing.
We went to see the GI doc, for follow up and to try to control Kaesyns "explosive abnormal stinky diaper" problem. He was a joke. I plan on NOT going back to him, EVER. He pretty much said that it was normal, theres nothing we can do ect ect. It is far from normal. So no answers there. Hopefully soon he will be cast/boot/diarreah free so he can go swimming!!!
Moving on to even more complicated things
In March he had an MRI. I was so scared. I broke down crying in the waiting room. It took forever for them to do the MRI. I knew something was wrong with him. With his eyesight/funny movements of his eyes, tremors, delays. The MRI was finished with, and we went back to see the neurosurgeon 2 weeks later. He tells me everything was fine. I was okay with that, I was glad, obviously. I just could not accept that answer, with everything going on, I KNEW something was wrong. I requested the report and seen things in there such as brain matter missing, enlarged ventricles, thinning of the something or another. WHAT? BRAIN MATTER MISSING?!? yeah, thats not normal, and sure in the hell is not right. I begged for a second opinion and went to 2 different doctors. Both told me their theory was at one point he had hydrocephalus, which enlarged the ventricles pushing the brain matter away. Okay, makes sense. But what does that mean for Kaesyn? No one could tell me. I made an appt with our neurologist. He was so wonderful. He sat down, looked over everything I had highlighted in the MRI report, and explained it all to me and showed it to me in the pictures. He said Kaesyn, infact has communicating hydrocephalus. He showed me his report where he diagnosed him a year ago. I have that report. He did. He sent us to the neurosurgeon,to get an opinion on a shunt and he disregarded the neurologists diagnosis, of course he was pretty upset about that. He said a year ago, and said again he does not think Kaesyn needs a shunt. Id have to agree at this point. Even though he has some issues from the hydrocephalus, he is improving, not getting worse. I hear that shunts can cause more problems then help, so hopefully he will never have to have one. The neurologist wants Kaesyn in intensive occupational and speech therapy and believes that he can live a full life, he maybe delayed but he will be able to eventually overcome everything everyone else can.
My emotions were so out of whack. When I went in Childrens Mercy today, I was not expecting to have a diganosis, but I was more scared walking out of there, again, with no answers, than getting a life changing answer, and honestly, I started to believe it was not hydrocephalus, and it was something minor causing his tremors and other problems. So I was shocked. I wanted to cry. Im not sure if it was because someone FINALLY listened to me, and believed me. I dont know if it was because we got an answer, or if it was because he does have hydro. Maybe all of the above. I am just so thankful, that I am blessed enough to see my baby laugh, play, learn, and interact with his big sister (that he just absolutely adores!!!) and I. I have met the most amazing people through out this WHOLE entire journey, and without them, I would not have gotten the answer I got today. If it was not for them fighting for the same thing, I would not have known to fight. I would have left alone believing "everything was normal" A LONG time ago. Thank God for them, and my mommy bear instincts.
It feels SOO great to have one of the biggest concerns answered. Although I am sure I will always hover him and be paranoid and have questions, we know how to help him, and AN ANSWER!!! <3<3<3

One Year mark

Today marks so many things for us. One year ago we were in CMH in a hospital room, with Kaesyn hooked up to oxygen, IVs and so many other monitors. One year ago they took Kaesyn right out of my arms to perform a broncoscopy. I remember knowing this is what needed to be done, and the Doctors convinced me it really was not the big of a deal, hed be out of my site 30 minutes TOPS. I remember the anesthesiologt coming in, and give Kaesyn meds to make him a little out of it, so he would not be upset when I left. They walked me to "reunion corner" and gave me instructions to the waiting room. Kaesyn still cried, I walked away from my baby with tears filling my eyes but kept telling myself, in 30 minutes, we will be together, and have answers. I knew in 30 minutes, my life would change forever. Thirty Minutes from then, I would have answers to why the last 16 months my son would stop breathing, why he wouldnt eat, why his face and eyes were sunken in. I go down the elevator, with my brain racing with all the possiblities, while my heart wasnt sure what to feel. The elevator opens and I see this big room, with decorations, and a big huge tree with a face on it. WOW! It was a really cool room. A really cool room, full of parents like me waiting for thier children to come out of the Operating room. However, I felt different than them. Sitting there counting seconds til I got to see Kaesyn again, I finally figured it out. I was sitting there, all alone, in a corner. Pressing a button on my phone to check the time, trying to clear my head, trying to stay calm, but in all reality I wanted to break down, I wanted to fall to my knees and cry and have someone tell me it would be okay. 15 minutes had passed, I took a few breaths, said a prayer and asked God to please look after him, and please have our Doctor delliver good news. I remember calling my Grandma, she was in california with my Uncle Nick at the time that was passing away of ALS. She didnt answer, understandable, I call my mom, no answer, I call both of them over and over again. None.Nothing. I lost track of time and before I knew it 30 minutes had gone by, nothing. no word. none. I start getting shaky and I get up to pace the room. I go to the receptionist to make sure the OR hasnt called to give me a report. They heard nothing yet. I pace another 45 minutes, jumping everytime I heard the phone ring, and everytime they called another parent to update them. More time passed by, and I realize there is a whole new group of parents, everyone who was in there when I was there was gone, reunited with their children, here it has been 45 minutes PASSED the 30 it was supposed to be. Im getting very impatient obviously, I again check at the desk demanding answers, letting them know this procedure wasnt supposed to take more than 30 minutes. The apologize and insist there is nothing they can do, me taking a deep breath understand that and realize I need to calm down. I try to call someone again, nothing, no answers still. Finally at the 90 minute mark I see Dr. E coming down from the elevator, wow. I got no update, from the receptionist to update me, nothing. He walks into the waiting room, which is not how everyone else did this. He sat down next to me with papers, took a breath, and said lets go into the conference room. REALLY? The 20 steps to the conference room I dont even remember. I was so shooken up, 90 minutes for a 30 minute procedure, and he wasnt even following routine like all the other drs/families were. He even had 2 other nurses with him. He explains that Kaesyn had a very hard time, and he had severe floppy airways. Explained what this means, and a treatment plan. He gave me a hug, I thanked him and went up the elevator to reunion hall. I stood there looking around waiting for my son. They finally wheel him out of the recovery room, in a mini crib, he was propped up, hooked up to more IVs and the oxygen again, pretty sure he wasnt dependant on o2 when I was there. He had no worries in the world. I on the other hand broke down kissing him and hugging him. He looked so happy with a huge smile on his face, but his skin was even more grey, his eyes were more sunken in. And nasal canulas dont neccesarily look good on a baby. They were trying to get him a room in the PICU, but they decided he was doing well enough to stay in the room we were in, and so we didnt have to move all over again. We get to his room and hes still a little out of it from being asleep, they get all his monitors, IVs, o2 tubing organized and handed him to me. Thats whn this hit, looking in his eyes I knew things would be just fine, thats when I realized for sure that I can not doubt God, this was his plan, this is what he planned for US. Not caring about the reason, I knew to trust his plan and to let him guide us through this, knowing Id still have rough spots dealing with this emotionally. I remembering before this, begggging all these doctors to please tell me what was wrong with my baby, I swore once I had answers I would accept them, I will be okay with it, no matter what terms they were under. At this point, I couldnt, I could not be okay with the answers I just got. "He has floppy airway, there is nothing we can do, time is the only cure" So I was just told, that when my son stops breathing, its because his airways bc closed shut, and there is nothing I can do? When my baby goes into coughing mode and I cant get him to stop there is nothing I can do? My son has to sit through all this with NO HELP? Just my comfort?! I wasnt having it, that will NOT happen, we will do something about this, He will not suffer anymore. For weeks, all I heard was "atleast you have answers"" arent you happy it wasnt worse?" Yes I know why he does this, I know why hes sick now, but its pointless, there is NOTHING I can do to help him. No Im not happy with the answers, the answers I got was to basically sit back, and not being able to intervine when my son is SUFFERING. It took so long to be okay with this. Here we are a year later, and he is breathing fine. No stridor, no retractions, no o2 monitors have been used for awhile, no o2 has been used. Next Month marks 1 year since he has been hospitalized, and he gets his MRI on his head. If the MRI comes back clear, o2/monitor is going back to Apria. I can not believe one year ago we were where we were, and today Im sitting here with this crazy little boy who is so happy. His laugh, his smile, his eyes, everything about him is so amazing, and he is truly my hero for so many reasons. He brought me to a place in my life that I really know what being grateful meant. My whole life was put in a different perspective beause of him. At his own cost, I snapped into reality and learned what life meant, and you are not promised even 60 seconds from now. He has taught me faith, and he has gone through so many journeys in just a short 26 months of his life, and because of him I have made sooo many new lifetime friendships. I will take every lesson I have learned on this road to my grave. I now know how strong my family is, and I know the 3 of us can get through ANYTHING, as we got through this. And there is NOTHING in the world I would want anymore than knowing that.

It'll be a new year before we know it

Things have been crazy, and as I was going through my blog, I came across a few things I wanted to write about. We have 18 days left of this year, and pretty soon Ill be way overwhelmed with everything and I dont want to forget the last post of this year. Im not even sure where to begin. WOW! 2010 has flown by. As I was going through my old posts, I have realized how far it seems we have gone. It seems impossible that just a year ago we started this adventure with Kaesyn. WOW! ..just WOW!
I never thought Id have to walk this lonely road by myself. I would not have imagined anything being so hard in my life ever. We have met sooo many amazing people and each and everyone of them has inspired me. Each and every one of them has forever ever touched my heart and they will stay there until the day I die.
I know I have said it time and time again, how hard this has been, how crazy I sometimes feel, and how my heart breaks to watch my baby boy at only 2 go through so much. Blood draws, IVs, hours and hours of neb treatments, countless numbers of prescriptions, hospitalizations, oxygen masks, surgeries, special vaccinations.. It seems impossible, it doesnt seem real that such a gorgeous active little 2 year old boy has been through it, no one would ever guess it and Im thankful for that much. He has taught me so much in his 2 years of life.
I have so many emotions, and Im thankful that by reading my blog I can see such a difference in the way things were, for the better. He is doing SOO SOO awesome, however I have doubt that it stays that way. I hope it does, more than anything.
I have ran across so many people that say that they understand, I never get that. Unless you have been there, you can not understand, you DONT WANT to understand how this is. EVER! I have been told it could be worse. It could be worse, yes, and dont get me wrong Im thankful that its not worse. But it is what it is, its still horrible for him to go through, it still crumbles my heart into little itty bitty pieces watching everything that he has to go through. It sucks sucks sucks to not have answers, it sucks to not know what is wrong with your baby, it sucks to have more than one "pending" diagnosis. It sucks wondering whats next. So yes any situation can be worse, and I hope it never gets worse, but we deal with what we are going through now, and no matter what Kaesyn goes through in the future I will always look back with my heart split into two with everything he had to go through. Im not even sure how to explain the feeling I get when someone tells me it can be worse. It makes me angry. Regardless how much worse it can be he still deals with more than any two yesr old should go through. Even now. I cant even tell you what hes been through this past two weeks and hes doing the best hes ever done!
I cant let this take over our life, I have to let him live a normal life, I can not keep him in a bubble, I cant do it. He deserves to be as normal as possible. I can not be mad at the situation. I have learned that I have to be blessed for everything, I have to find positive in every negative thing that we may come across. I never thought it was possible, but I have found more positive in my life now than I ever ever have before. It makes me proud of who I am and who I have become. It makes me proud of both my children. I am sure I have said how proud of Gabby that I Am, shes so great, she handles it so well. Im sure its harder on her than what I know, but she has been so amazing through all of it. She has missed out on so much because Kaesyn had an appt and since theres only one of me she had to miss out. She is okay with that, and that makes me proud. This year has brought me so much closer to my children, friends, my family and most importantly the Lord, he has gotten me through this, he has made me able to see that light at the end of the tunnel. When we would spend a week in the hospital, and I was drained physically and emotionally he got me through that, and because he got me through it I was able to get the kids through it. Its been a hard year, but I Am thankful for everyone we have in our life. This is to 2011 and may it be a brighter road for all of us.

All these specialists and diagnosis are driving me insane.

So we have more specialists and a few more diagnosis I cant even count either of them on one of my hands, and I always get confused.

specialists include:
Pulmonologist
ENT
GI dr
neurologist
Neurosurgeon
Dermatologist
infectious disease
cardiologist
ophthalmology

Did I get them all?I always miss one or two. Once we have Kaesyns MRI in March we will be able to scratch off the neurosurgeon/neurologist. Thats a big step! I pray with every fiber of my being we will be able to do so!!! We will also be able to scratch out the cardi also in another few months if the Dr doesnt feel the need to see us anymore! WHEW!

A current list of official diagnosises
Laryngomalacia
Tracheomalacia
Bronchomalacia
Asthma
GERD

A list of "pending" diagnosis/concerns
His antibodies are very low
We can not get his iron up for ANYTHING
They want to check the celia in his nose
spot on his brain

Sooo much for such a little man. He does so awesome though.
This week we have ENT/infectious disease appt. Hopefully we hear good news!!! Update will come later!

My beautiful daughter

So I know this blog is mainly about our journey with all of Kaesyns health conditions. But I decided to throw in something new for a change. I have found all the changes my daughter is going through lately, and I have so many mixed emotions that I really need to let out.
When I found out I was going to raise Gabby on my own, and it was just the two of us almost 8 years ago, it scared me. I got over the fear REALLY quick, as I knew we were a team and we would conquer the world together. Just Gabby and myself. The first year I became a mother was the best year ever. I remember looking at her for the first time and never ever felt so much love ever. Because I had an emergency csection, I did not get to see her for long. In recovery I got to hold her and I did not care that I had just been cut open. I remember kissing her a million times and telling her I love her, and her big eyes just stared right back. I had a thousand images go through my head with a period of 5 seconds of what my life meant now, and all the amazing stuff her and I would endure together. I had never knew what loving someone this much meant, I never knew what being loved that much meant. (Even though now as a mom, my mom felt the same way Im sure). Although I Felt robbed of the all natural birth plan I had I didnt care, my beautiful daughter who was now the heart outside of my body was safely placed in my arms and not one thing was wrong about her. Within two weeks of falling in love like I never though I would, I had to leave her to go to high school. Ohhh high school. I hated leaving her to go to school with a bunch of kids who had no idea what life was about or partying it up every weekend. I would have to sometimes go to school with spit up on my shirt, in my hair, or pee on my pants. I did not care, that was a reminder of what I got to go home to and I did not care for one second. When Gabby was 11 months old, I decided it was time to move into our apt. I am sure I had never felt more proud of myself. We had gotten that far by ourselves. It really was just her and I now, just her and I. She became my best friend my everything. Those were the best days of my life. Working a full time job and having to take her to daycare was the hardest thing I had to do, but I did it. FOR HER. Hearing people making comments on how I could do things different, or the things I did that they didnt agree with never bothered me. I had an awesome daughter, and I knew for sure the our family, made up of just two of us, was amazing. I was a young mom, I was a first time mom, I had to learn a lot in a little bit of time. Of course we have overcome many many obstacles in the almost 7 years she has been mine. But those were my favorite years. When we moved to Kansas when she turned 3, I slid off track. I turned 21 as a single mom and I was going through a major break up and trying to find myself. Its no excuse, but partying and my friends seemed to have taken the best of me for a few months. Which is how Kaesyn is here, I dont take that back, he is the other heart I have on the outside of my body. He is just as amazing, and we have a special bond Gabby and I dont, but Gabby and I have a special bond that Kaesyn and I dont. I never in a million years thought we would be here. She is almost 7, and such an amazing beautiful young lady. She is growing up so fast, I think back to that first moment we stared into eachothes eyes and fast forward to know and I can not help but wonder how the hell we got here. We were never supposed to disagree. I was never supposed to send her to her room, I was never supposed to beg and plead for her to just help me with something around the house, we were supposed to be a team, we were supposed to best friends that laughed and played and take over the world together. Now she acts as if she hates me. She blames everything on me. We are poor, and its my fault she said. This morning, she got up, and I told her that the basement light was out and I didnt know how I was going to change it. Together we figured out a way, she held the candles so I could see and I quickly changed the light bulbs and we quickly ran back up the stairs and high fived eachother. We were a team and a great team. Thats how imagined out whole life. I always wonder where I went wrong, and inside I know that she blames me for a reason, but I have also tried. Is it so hard to see that I tried doing my best. I know that no matter what happens now, we will get through it. I know that she is an amazing little girl, and I love her enough to get through this and to do what I have to do to help her with whatever it is that has lead us to where we are. Its just so hard knowing we no longer have the bond we once had, and it breaks me apart. I am not sure if I have ever hurt so badly.

Some of my favorite photos of my beautiful baby girl

MRSA & Kaesyn

Its been a bit since I have update. I will leave an update and then go onto some things I feel the need to say right now.
I had mentioned Kaesyns ears in the last blog. The Friday we went to our old ENT in Topeka because our Ped. ENT at CMH had no openings. We got there and Dr.F just didnt know what to do, he had no idea what to say or do. He was soo appologetic and kept letting me know he was so sorry. He got us squeezed in to our ENT in KC Monday. So Monday we went, we got the coulture back and it came back as MRSA. I had no idea how serious MRSA was and how it affects people for a long time. However with the right meds we were able to get a handle on things and get rid of it. We went back for our check up today and she said everything looks just the way its supposed to! WHEWWW!

So it has been a year since Kaesyn tested negative for Cystic Fibrosis. It has been nearly a year since we started this adventure and we are no where almost finished. Within this year I have gone through a parents worse nightmare. I have been able to learn that literally EVERY BREATH COUNTS. I have met people I never would have met. I have bonded with people in a way I never thought was possible. I have learned that Doctors are by no means perfect, and they do and will mess I up. I have come to terms with letting things play out the way they will play out. I have no power in changing things. I love my life a lot more now and I know my purpose. I have seen my baby boy stop breathing. I have seen him change colors. I have seen him at his worse. Not something I can say I ever wanted to see, but because I have I appreciate soo much more.
Lately I keep thinking back to an ER trip. I did not realize until recently that they were serious, they were worried about Kaesyn. They whipped his o2 on before they ever took his pulse ox. They ended up letting us go, promising if it got worse wed come back. We obviously ended back up there. At the time, it was another ER trip for us, I had no clue that I probably could have gotten away with calling an ambulance. I know that I was not freaked out as much because it was not very "less than normal" for him. He always struggled to breath. He always had dark sunken in rings under his eyes. I am so proud of my son. He has come so far. Here he is almost 2 and has made such a huge improvement. We no longer take his pulse ox every night. He hasnt had his o2 in over a month. We have graduated from neb treatments to inhalors, however that will change as soon as he starts to breath any different. I have noticed he seems a little winded today but we will see what morning brings us and hopefully itll be a few doses of his flovent and atrovent inhaler before the neb meds!! Kaesyns bday is coming so fast. I can not believe my baby boy will be 2 soon. He is getting ready for potty training and everything way too fast. Hes my superhero and Im sooo proud to be his mommy!!