This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, October 29, 2013

What I want my children to know

Those of you that know me very well know that for the past 15 months, I have been taking care of my Grandmother during the day while my Mother is at work.  She is 91 yrs old and has end stage Parkinson's and Dementia/Alzheimer's.  Her health has declined significantly over the last year but we have seen a rapid increase in her declining health over the last 2-3 months.  I am struggling very much with her overall ailment and extreme physical, mental, and emotional pain and torment she has been in lately. In walking the journey we have with Lydon, Jonathan and I have had very real conversations about death and dying and what our wishes would be for ourselves as individuals and for any of our children should we ever be faced with that scenario. But seeing my Grandmother like this... Seeing my Mother struggle with her own physical and emotional pain in making decisions for my Grandmothers care has been so very difficult for me.  This has made me do some serious inflection and soul searching.  So this post today is mostly to my three beautiful babies but the rest of you who are interested can read along. It may not make a lot of sense to any of you but I hope someday it will to my children...

Hollie, Aidan and Lydon,

Momma wants to share with you some things that I hope you will hold dear and never forget.  I get really busy sometimes and often feel like I forget to tell you or teach you some very important things.  So if by chance you ever get the opportunity to read this, here is what I would like you to know. 
     First and foremost, please know that I love each of you so dearly and there is nothing that could ever replace or change that....Nothing!  I hope that you always know that you can come and talk to me and that even if you've made a mistake and  I don't agree with what you are doing or have done, that I will "be there" for you and do my best to support you in whatever way I can. And in speaking of careful not to judge others for what they have done.  Even if their mistake seems like something stupid or ignorant to you, remember that not everyone has walked the same path or had the same experiences you have.  Remember to be compassionate of other peoples situations and to be thankful for your own but never let that hold you back from working hard to do better.  When you do achieve "better" be careful not to think that makes you "better" than anyone else and that you are not above making a mistake. Remember that everyone has a story and that you can learn something from almost anybody you meet. The garbage man, the janitor at school, the Principal, the President....People are people. Regardless of race, age, education or achievement.  Some of life's greatest lessons cannot be taught...,.they are learned. Learned, from people just like you and me. So don't ever be afraid to share with somebody else something you have learned. When pursuing higher education, whatever route you decide, just please do something that you enjoy doing. Do something that makes you feel appreciated and something that at the end of the day makes you proud of who you are and what you've done. And know that if you do not feel appreciated or proud of what you are doing then you probably should look at other options.   Always be respectful... Hold on to tradition and those things from your past that are precious to you and have made you who you are but never be afraid to try something new.  Change is constant and it is the only thing that is guaranteed!  Stand up for what you believe in and stand strong. Sometimes you may be the only one standing but that may just mean that you are the leader of the pack. So stand strong and hold your head high!!  Stay close to your siblings...Family is forever!
     Hollie if you do indeed become the NICU nurse that you say you will (and I have no doubt that you can) don't be afraid to touch that new Mommys shoulder and reassure her that she can do this. Remind her that God picked her for this special baby. You smile and tell her and show her a thousand times that she can run this machine or that. Be careful not to get too confident and remember its ok to cry and remain sensitive to the reality of life and death.
     Aidan, my boy... Never never never lose your fun loving personality.  Remember that people are drawn to personalities such as yours and that comes with a big responsibility.  If your gonna be a leader, be a good one and lead people in the right direction. Show people that you can friends with anybody and that winning isn't everything.  Show them that its just as important to be a team player and sometimes you should let your most novice player be the star of your team. Aidan, pay attention and watch your Daddy for he can and will teach you how to be the husband that you should be someday... The kind that loves his wife with his whole heart,  puts her first and fiercely protects her. The kind that doesn't define his marriage by the traditional man or woman's roles but views it as a partnership and does what it takes to get it all done.
     Lydon, my angel baby... I want you to know that no matter how tired or weak you may feel somedays, you are so incredibly strong! I want you to know that I would take away every ache, pain, poke and prod that you've endured.  I hope that you never question the decisions that Daddy and I have made for you but if you do, please know that we have done our best with the knowledge that we've had.  Know that your adorable smile and zest for life exudes love and energy to all of those around you.  Never underestimate the power of that, Super Boy!  I know that there is probably tons that I can still teach you but truth be told, you've taught me more than you'll ever know. 
     Most importantly, my sweethearts, please find a time and a place that you dig your heels in deep and develop your own relationship with God. Something that is sacred and truly your own.... aside from us your parents.  I cant promise you a whole lot but I promise that there will be a time in your life when your friends and possibly even your family will disappoint you but your Faith will carry your through. 
     Finally, please know how much I appreciate each of you and these incredible life lessons that I have learned from raising you. I want for you to know and learn all of these things that I've written about but the irony is that it was you who taught me how to love unconditionally, how to squash my inclination to judge, how to listen and how to teach, and how to stand up for what I believe in. I know that you will do many many things in your lifetime that will make me so proud, but don't forget to pass these things along to your own children.

Love Always,


Monday, October 21, 2013

Happy Fall Ya'll

     Once again, it seems like it's been forever since I updated.  I keep thinking that after this event or the next that things will calm down this year but so far we've completed nearly 75% of this year and it hasnt happened yet! Needless to say, its but an extremely busy year!!  So much going on in the Paxton household.  We had an incredible summer.  Lots of fun and resting. Both of the big kids got to go enjoy several different things with their cousins. Lydon was able to go swim a couple of different times with the younger cousins too. He enjoyed a fun filled beach day at Moody Gardens with his "girlfriend".
     August rolled around and we got the big kids off to yet another school year.  Aidan is in second grade.  He has an "more seasoned" teacher this year who isnt as appreciative of Aidans full spirited personality but I am so proud of how well he has adjusted.  He is learning how to adapt to different personality types... A lifelong lesson that could benefit some adults I know. ;)  Hollie is a junior!  Oh my sweet girl...she has a load to carry this year.  She is working on the dual credit/dual degree program and it is TOUGH!!  So tough in fact that we can't seem to find time to pull her away long enough to get her drive time hours completed! Somehow, someway, she figures out how to get it all done and passes with flying colors.  She says she is going AWAY to college  (Sniff sniff! Guess shes had enough of these little boys at home.) and plans to become a NICU nurse. We will all miss her deeply but are so proud of her.  I guess this will take precedent for now but somehow we gotta get this girl driving ASAP!!
     In September, Lydon started a part-time Pre-K program.  We are so happy for this program and the people in charge who were willing to take a chance and let our beautiful boy particpate and be a part of something that he needed so desperately.  This program is two days a week for three hours in the afternoon.  Lydon has done amazingly well. He really likes his teacher.  He has made new friendships, learned to share and take turns, and raise his hand and ask a ton of questions!  He is doing almost as well physically as he has mentally and emotionally. Hes had some cold symptoms but only missed one day because of being too tired.   He is able to make it through the biggest part of his class without using his oxygen.  He usually gets tired about half-way through and/or about the time they start singing and dancing.  He crashes pretty early on school days and is pretty low key with energy and eating the next day as well.  We are not sure where this leaves us as far  as a Kindergarten schedule next year but we will just take it one day at a time.

     After months of fighting through all the red tape, we were finally able to get all of the supplements/medications that his mito doc had prescribed approved by our insurance. We were very optimistic about the potential increased energy and positive side effects from the new combination of meds.  BUT..., let us not forget this is Lydon Paxton we are talking about and our mystery boy is never dull and boring! After everything we went through to get this for him, we started it and sure enough it did seem like it was helping.  He was running around, eating and playing and seemed great until he fell asleep that night.  We gave it about a week but it become more than obviously clear that the new combination was acting like a diuretic and were it not for the Pedialyte he receives overnight for fluid balance, the medication would have been dehydrating him. So, we had to stop that but we were able to separate them out and keep the most beneficial ones on board without any negative side effects.  Wish he would've informed me that he preferred it that way before I fought tooth and nail with our insurance.  Guess he wants to keep me on my toes and keep my brain sharp!  I wouldnt have it any other way my sweet boy....You are worth it all!

P.S.  Through an awesome organization called I Run 4,,  Lydon has been matched with a runner who now dedicates all of her runs to him. We are so excited about this. Its exciting to know that Lydon is the inspiration for somebody to run hard and stay strong and raise awareness about Mitochondrial disease. So cool to see my baby's name on running shoes, especially when he isn't having the best day. He has the heart of a champion for sure and now he is inspiring somebody else's heart and "sole". ;)

Thursday, July 25, 2013

Food for thought

Surprise, Surprise! This is a post that isnt about sweet Lydon.  He has been holding his own for the moment. Thank goodness because we've had plenty of other "stressors" to tend to over the last week or so.  We are STILL working with doctors and insurance to get the new meds and treatments started. I will update when I have any new information but for now, here's whats been on my mind. 

I’ve been thinking the last several days about diet, wt. loss, etc.    I’m an average All American female with three kiddos.  I’ve never been “obese” but I’ve always struggled with my weight and been “thicker” than I should’ve been.  It wasn’t until I was in my 30s and had my middle child that I had more control of my weight and even still it’s been a struggle.  I, as many of you, have often wondered why does it seem so difficult to eat right and exercise.  This past week, my Dad who has for most of his life been pretty fit and healthy was diagnosed with near complete heart failure and ended up needing an emergency quadruple bypass surgery.  So, this is the realization that I’ve come to.  For most of us, including myself,  I think that  our wt loss goals tend to stem from a pretty simple and somewhat superficial viewpoint.  Most of us want to look good and feel good about ourselves, right? But what if our goals grew from something deeper and more meaningful than that?  What if it was a life or death matter?  What if you were told that if you didn’t lose 25, 50, or even 100 lbs. that your heart would fail and you would imminently die? What if your ability to continue working and caring for yourself or your young children depended upon that 25 lb weight loss? If that was your reality don’t you think it would be easier for you to choose apples with peanut butter and a glass of water for your afternoon snack over the large fry and Dr. Pepper?  The truth is that IS reality for all of us.  I’m nobody special but I have been a nurse for over 15 years.  I have a full understanding of the anatomy of the heart and heart disease in general.   This past week, all of that knowledge and experience became something very real and very personal.  My perspective has changed…. I’m not gonna lie, I still want to look good in my clothes and feel good about myself  but my goal is more about being “heart healthy” and less about “losing weight”.  It may not literally be a life or death issue at this moment but for me, my long term health and quality of life has become the real “heart of the matter" in my lifes journey of being the best happy and healthy Mom I can possibly be for my three beautiful babies!

Saturday, June 29, 2013

A "simple" explanation of Mito

I found this on a blog from the UMDF and thought it made a lot of sense for those that haven't really understood Lydons disease.

What Is Mitochondrial Disease and How Do You Explain it?

I often get asked for a simple definition.  Okay so here it is; mitochondrial disease occurs when the body cannot produce enough energy to sustain life. Of course this is sort of like saying the earthquake that caused the domino disasters in Japan is the result of an acorn that fell off an oak tree in San Diego.
Mitochondrial Disease is like:
  • Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
  • Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
  • Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses.
  • That dream you have where you are trying to run away from danger but you just can’t move? Yep, that’s mitochondrial disease.
  • The way you feel after running a 50 yard dash compared to the way you feel after running a 50 yard dash with a 50 pound knapsack on your back.
  • The way you feel after working an 18 hour day or 18 days without a day off. Well, if you had a mitochondrial disease you’d probably feel that way after breakfast.
  • Buying a perfectly good Volkswagen Beetle with a 110 horsepower engine.  It’s a great looking car and it runs terrific.  Now take out a ring, gum up the valves, add some sugar to the gas tank and put in an old head gasket.  The car still looks great but now it will only generate about 50 horsepower.  That will get the Volkswagen around the flat streets of Kansas on a spring day, but now load it up with 3 of your hefty friends, or more if they’ll fit, with a trunk full of luggage and take it to the hills of Western Pennsylvania on a 90’ day.  It won’t make it!  But it still looks great!

Are you getting the idea? And by the way, all these examples are fixable; mitochondrial disease isn’t.

     Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

     Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

     I hope this makes it easier to understand why Lydon "looks so great" and still needs to wear oxygen , receive fluids every night, struggle with vomiting and stomach pain and needs so many meds on a daily basis. He deals with most of the symptoms listed above. Thank goodness he currently does not have all of them!  

Tuesday, June 18, 2013

Reality Check

     During the last few weeks of being home from our trip, Lydon has continued to be tired and irritable which in turn makes me quite tired and irritable and admittedly (despite my best efforts) not in the best mood! I have been feeling down or a little sorry for myself if you will because no matter how hard I try to get all of my chores done and get to bed early, it just doesn't seem to happen. I have been SO tired lately.  Every night before I kiss Lydon goodnight, I push several syringes full of meds through his G tube and connect him to a feeding tube for fluids, a pulse ox, and oxygen. Face it, night after night, this is tiresome. As a Mom, this is very upsetting to realize that this is what is required to keep Lydon hydrated and oxygenated and hopefully rested night after night. I am not complaining about having to do these things, I just wish they weren't necessary.
     Today, Aidan my 7 yr old. wanted to go to work with me while I sit with my Grandmother.  I felt somewhat honored that he had the option to stay home with our beloved sitter and play outside all day with his friends but he wanted to be with me! ;)  We hung out and laughed together and talked but after a while he retreated to the play room. My Grandmother was dozing, so I had the very rare occasion to watch something of my choosing.  I came across a show on ID that was about a lady who had been wrongfully imprisoned.  I figured it would be a "feel good, happy ending" so that's what I chose to watch. It turns out that this lady was a victim of awful spousal abuse.  She was repeatedly raped and beaten. One day she had finally had enough and in self defense took a gun and shot and killed her husband. A jealous "friend" who also happened to be an FBI informant reported that she had plotted this for the life insurance money. Based upon his testimony, she was convicted to life in prison. After almost 20 years in prison, her case was reopened. Despite there being evidence that A.) She was the victim of severe abuse, B.) the FBI informant had perjured himself on the stand C.)  Evidence that her husband had also raped their daughter and D.) She was a model prisoner who gave Bible studies and had even formed a choir for the inmate service on Sunday mornings her parole was denied for six years!! In an unexpected twist of events, she was diagnosed with Lung Cancer and so her attorneys filed for a Grievance/Merciful release and it was denied yet again! Finally, the support from the community was overwhelming and the information regarding the FBI informant was finally made public and she was released! She had ten beautiful months with her family before she died. Her attorneys wanted her to sue the DA's office for withholding such vital evidence that effected her case but she would not.  She has such a positive attitude and such unwavering faith.  She said she was going to enjoy every moment of freedom she had and let God take care of the rest!
     So, what is my point in all of this and what does it have to do with Lydon?  Maybe this is just for me and it will not make much sense to the rest of you but this is what I see.  I do have ample reason to be upset about Lydon and for Lydon, no doubt. BUT, I also have SO very much to be thankful for.  It was amazing to me to see the story of this lady who was repeatedly abused, saw her husband rape their young daughter and in trying to protect both of them spent most of her life wrongfully imprisoned. I tried to imagine how she mustve felt to see her young daughter grow up while she lived in prison.  She could have become so bitter and angry and mustve felt so abandoned by God when year after year, her parole was denied even after she was diagnosed with a terminal illness. But she remained positive and stayed strong! After her release, she lived for almost two years longer than doctors expected her too and in turn made a huge impact on California's laws regarding victims of spousal abuse. I dont know what the future holds for our boy and I most definitely have "bad" days where I worry about him and hurt for him but I will NOT give up! Somehow, someway, Lydons story is going to make a difference. Maybe he will help some of his doctors connect the dots to not only diagnose him but other kiddos who suffer with the same things that he does. Maybe it's so that Jonathan and I can be used to inspire other parents in some way or maybe these obstacles are molding Lydon to be the most tenacious,  compassionate, innovative Pediatric Neurologist in the world! ;) I dont know what the purpose of this journey is. We have encountered many obstacles already and I'm sure there will be more but today I was so encouraged and inspired to fight harder to remain positive even when my heart is heavy and things seem unfair. The reality is things in our life with Lydon could be SO much worse! Despite his need for oxygen, fluids, meds, etc, he is a very happy secure little boy who knows that he is unconditionally loved by SO many people and we make sure that he gets to do a lot of living!! So far, we havent gotten very far with getting our new meds approved.  We are waiting on insurance and we all know how that goes.  I will update when I have more information. 

Tuesday, June 4, 2013

The latest medical update

Be forewarned, this is LONG!
     On Saturday May 17th we packed our hopes, fears, anticipation, a ton of anxiety and let us not forget all the patience and strength we could muster into three suitcases and more medical equipment than should be legal and boarded a plane to go see one of the top Pediatric Neurologist in the country. This doctor is very highly credentialed and respected in the medical community. He is very involved in research and hence has a very deep understanding of mitochondrial disease. We felt from the very moment that we made the decision to go that we were doing the right thing for our boy. Things "fell into place" beautifully from the very beginning and continued that way through the very end of the trip. It really was amazing. I'd like to give just a few examples of how the road for this journey was paved ever so smoothly for us before I explain the appointment.
  •      First, when I called about an appointment, I was told that there was a  17 month long waiting list. That seemed like forever but I was willing to take it until almost immediately the lady on the other end of the line proceeded to explain that there was an ongoing research study that Lydon qualified for and that we could be seen in a couple of months if we were willing to participate. I called the end of February and we were seen in May.
  •      Second, the amount that we would owe all depended upon getting our insurance approved. That was approved within just a few days with no problem and we didnt owe anything more than our regular co-pay.
  •      The next big thing was that I was referred to an agency that assists families with special needs kids with travel arrangements for medical purposes. Most of these agencies require several months in advance notice and lots of paperwork but when I contacted this particular agency, they required no paperwork and paid for the roundtrip ticket for Jonathan, Lydon, and myself no questions asked! 
  •      When we arrived at the airport in Houston, we walked right up to the ticket counter and checked in. No line, no problem.  We walked over to TSA, again no line. Several TSA agents stopped what they were doing to help us get our bags through inspection and xray.  When we turned around and looked up,  there was a significant line waiting behind us but everyone was very kind and patient.
  •      Our flight was great aside from Lydon having a pretty hard time maintaining his oxygen saturations mid-flight.   We had his portable oxygen concentrator cranked up as high as we could and he was still barely hanging at 91-92%. The good news is we weren't at the high elevation for very long and as soon as we started descending, he got better. 
  •      Once we landed, we waited for the plane to empty out because we had so much stuff to load up so of course, the Co-Pilots stopped and let Lydon go into the cockpit and push all the buttons and alarms.  This was a highlight for sure!
  •      We walked to to baggage claim, grabbed our bags (Trust me when I say it was quite a sight to see the two of us pushing, pulling, carrying all of our bags and Lydon with his stroller, pulse ox and oxygen concentrator attached!) and got a rental car all in a matter of about 15 minutes!
  •      When we arrived at the hotel with this menagerie of equipment and baggage, the concentrator got twisted and wouldn't roll (imagine that?!) so I stopped to flip it back on to its wheels and when I looked up, there was the biggest brightest shooting star I've ever seen! It flew all the way across the sky and had a huge electric green tail following behind it.  This may not seem like a very big deal to the rest of you but it just seemed like to us that everywhere we turned we were being given little signs to reassure us that we were indeed in the right place and making the right decision for Lydon.  When we checked into the hotel, the manager there had reserved one of the king suites for us for no extra charge. It was so nice to have the extra space and seperate bed for Lydon with all of his equipment. Again, just another little positive sign!
     The next two days were pretty uneventful.  We let Lydon sleep a lot which is exactly what he did.  We did try to make the most of it and take him out for as long as he felt good.  We went to the zoo for a couple of hours on Sunday and ate dinner ( we ate, Lydon watched) at a Hibachi grill.  He slept even more on Monday so all we did was go to a Chuck E Cheese for a little bit in the middle of the day before going back to the room but that was of course the highlight of the day for him.
     On Tuesday morning, we first went to the lab for a blood draw.  Thankfully, Lydon was pretty well hydrated and they had no problems getting his blood on the first stick.  Those of you that really know us, know that this is a rarity for us! A pleasant surprise indeed.  After a little break, we went over to the clinic for our appointment. We discussed everything that has been going on with Lydon.  His fatigue, poor endurance, excercise intolerance, his nausea and vomiting, his shortness of breath at times, and his susceptibility to illness. Dr. F explained that all of this was the effects of his mitochondrial disease.  We talked about an exact name or diagnosis and for now, our boy is still a mystery.  Dr. F feels like Lydon most likely has a mitochondrial disease associated with Complex IV. His complex IV was the most deficient on his ETC which was done along with his muscle biopsy when he was 18months old. He also has a diseased gene that showed up on his whole exome testing that is associated with Complex IV.  Lydon has six different disease causing genes for mitochondrial disease but they are all recessive in nature. We know by process of elemination that there are a couple of them that most likely are not causing any of his issues but trying to figure out which one of the other four are causing the issues is very complicated. Additionally it could be more than one causing the issues or it could be a domino effect from having so many that all of them together is whats causing the issues.  Some things like Lydons tummy issues have remained pretty constant almost from birth but some things seem to be more obvious now like his excercise intolerance, the inflammation in his lungs and his poor endurance. Dr.F's opinion was that the specific name of Lydons disease will remain a mystery for now.  Hopefully someday, we will be able to figure out more how the pieces fit together but our goal for now has to be keeping him as strong and healthy as we can.  We talked about his oxygen and how that supplementing him with the oxygen when he is active or sleeping prevents his body from having to work harder to maintain his sats and in turn takes some of the stress off of him. We are adding in some additional supplements that aid in the energy making process. We will be starting B12 injections each week. The biggest change will be starting IVIG monthly infusions.  Lydons immune system works but the cells that are responsible for triggering his immune system to "kick in" and fight infection are pretty low. When Lydon gets a cold it seems like he has it for weeks. Dr. F's opinion is that there is no way that we can send him to school next year with his Immunology panel looking like it does now.  Furthermore, he is constantly using energy to maintain his levels where they are.  If we boost those levels up, then his body will not have to work so hard to constantly try to replenish or raise them so that in turn will be less taxing.  These infusions will not be fun or exciting for any of us and it is quite upsetting to think about starting them but our goal as Lydons parents is to give him the fullest life possible. That means hopefully being able to go to school and make friends and enjoy the day without becoming deathly ill or passing out from exhaustion.  We feel like this is our best bet...the big guns! We have exactly one year to start these supplements and infusions and see what kind of results we can get from them.  Our hope is that these therapies will indeed boost him up enough that he can at least make it part of the day at school on a regular basis.  Currently, we can only make it through maybe a 30 minute segment of a Sunday School class or Speech therapy session before he gets tired and even then sometimes its very hard to focus. This trip made it very very obvious to Jonathan and I just how much Lydon relys on his routine.  Just the change in the routine itself really took a toll on him.  He still has not recovered quite honestly.  He is still very tired and irritable and has not regained much of his appetite. Thank God for his formula aka "Orange milk" because he just cant do much more than that right now.  After the appointment, we met with the research team and that concluded our extremely long day.  We got in the car and headed out to grab some dinner before heading back to the hotel and this was the all time lowest point of the trip...Lydon, like only Lydon can do,  covered our rental car with orange milk vomit! Jonathan pulled off the freeway as quickly as he could and we started cleaning.  We did our best to get it cleaned up but I still felt awful the next morning when we turned it back in.  :(
     All in all, we feel like the appointment went as well as could be expected. We really were not surprised at the confirmation of Lys diagnosis. We have been told by numerous physicians past and present that this is what seems to "fit" Lydon the best.  We were very pleased with willingness of Dr. F to work with our current Aerodigestive team here in Houston to coordinate care going forward.  The only real drawback in all of this is simply knowing that despite all that we are going to do that we arent going to "cure" Lydon. We pray and believe that these treatments will help him but he will most likely always struggle with energy levels, GI issues, and oxygenation. THAT is the hardest part!  We are so thankful to finally have some answers and a little better understanding of Lydons issues. We are happy to finally have a team that seems to understand him and wants to work together to all be on the same page as far as a plan of care and treatments.  We just wish sometimes that this wasnt our reality because regardless of how great of a support system we have, no matter how much we talk about it or try to explain it, NO ONE, not even our own Mothers understand what it is like to walk this journey with such a medically complex child. Somedays, it is a burden that almost seems too heavy to bear; but most days, it is a blessing and a joy to see such a sweet, innocent little boy teach us  how to fight with such tenacity and smile through such adversity! As long as he's smiling, we will too! Almost daily in our own special moment he tells each of us "Youre the best Mom/Dad EVER!" Priceless, I tell ya...just priceless!!
 I'll try to post some of the pics we snapped later.

Monday, May 27, 2013

Happy Anniversary

     Ten years…. A house, a couple of cars, three kiddos, a dog and a wealth of knowledge is what I’ve gained in ten years of marriage to Mr. Jonathan Paxton.  I can honestly say that I don’t regret a minute of it. I love him more today than I did ten years ago although I certainly didn’t think that was possible when I repeated my vows and said I do. The last ten years of my life have not been perfect but they have been the best ten years of my life.
    When we got married, we didn’t have the newlywed time of just being a couple.  We were instantly parents. Our daughter is from my first marriage. From the very beginning, Jonathan said that he didn’t feel like he could truly love me with all his heart unless he truly loved Hollie. In turn, he said he couldn’t love Hollie unless he had a genuine respectful relationship with her Dad.  Instantly, I admired him for that. I have always been very thankful that Jonathan took that approach to this situation. It not only benefited our relationship by taking away the tension of what could’ve been an uncomfortable situation for years to come but it blessed Hollie. She has not one Dad but two. She knows that they both dearly love her and will go above and beyond to take care of her. This might’ve been one of the first and most valuable lessons I learned from this union. If you love somebody enough (in this situation, there were three people who loved one little girl very much) you will do whatever it takes to make that relationship work. I should’ve known then and there that God had something very special planned for us because it was that very special “Life lesson” that has carried us through many difficult situations since then. We’ve been through several job losses (the IT industry isn’t always the most stable), two difficult pregnancies, personal health issues, and the roller coaster ride of parenting two beautiful active healthy kiddos and one beautiful medically complex baby boy. What I’ve learned through that is what I’ve already said… It comes down to selfless, sacrificial love for the other person. Thankfully we had that very solid deep rooted foundation before our little caboose was born because life was full steam ahead from the moment they placed him in our arms. Our lives were changed with each of our children. With Hollie, we learned together how to co-parent. I had to step back at times and let him do things for her that I had always done. Otherwise, the two of them never would have developed their own relationship. Aidan was our first son. He was Jono’s first baby and he made us all a “blended” family of four! Life was busy no doubt but we were still a young couple with two kids, two incomes, and one mortgage. We had it all under control. With Lydon, our world changed! We suddenly became a family of five, the kids outnumbered the adults and one of those babies required the attention of both of us at times. Jonathan and I have become different individuals and approach parenting much differently now than we did ten years ago. We now appreciate the simpler things in life much more than we use to. We use to take for granted having dinner together as a family and become very frustrated with the hustle and bustle of the daily bedtime routine. Don’t get me wrong, those frustrations still exist. Sometimes even more so than they use to ( it generally takes me close to an hour to get Lydon’s nightly meds done, rocked and in bed with pulse ox, oxygen, and feeding tube all connected) but it’s much easier now to remind each other of what life is like when are separated because of a hospitalization for days and sometimes weeks at a time. We have learned how to be less judgmental not only of each other but of others in general. We work harder now to instill this mindset in our children. We have learned how to be more mindful of each others needs. We’ve always appreciated each other but we are both more apt to do something simple for the other like taking out the trash or making up the bed. That being said, we’ve also learned not to be nearly as frazzled when somebody forgets trash day or the beds do not get made. We’ve learned that you more consciously have to make time for each other and we both work hard at this. Sometimes that means picking up dinner and not feeling guilty about it or cleaning up the kitchen so that the other one can take a hot bath.  It’s easier now to live in the moment than it use to be. I sometimes find myself thankful that I was stopped by a train because it forces me to stop the car and sit in that moment. I’ve closed my eyes and whispered a prayer or two, made an important phone call, clipped fingernails and sometimes just sat and done absolutely nothing as I watched the train pass ever so slowly.
Aaahhhh uninterrupted sleep!

 Beautiful Key West

This past week, we were very privileged to be able to go away together on a cruise to celebrate our anniversary. We were able to get some much needed rest, talk without any interruptions and get a bit of a break from the normal responsibility of everyday life. Although we did spend much of our time talking about our kids, our upcoming trip for Lydon  and our plans for the summer with the family it was so nice to enjoy some good food with no cooking, no clean up and nothing but one on one time with each other. We got to go back to Key West where we went on our Honeymoon and the next two days were spent in The Bahamas. It was beautiful!  When we were dating, I use to tell Jonathan “ I don’t  ‘need’ you, I’m choosing you.”  Although at the time that statement was true, I had finished college and been a nurse for nearly six years and was looking in to buying a house about the same time that we started dating; now, nearly ten years later I would like to recant that statement. I did indeed choose you My Jono but now more than ever before, I need you! I need you to compliment and complete my life and you do it so well. Happy Anniversary Sweetheart! Thank you for ten Ah-mazing years!

My "prize" for ten years... Looking forward to ten more! ;)

Birthday Pictures

Sunday, May 26, 2013

Lydon turns 4!!

Yes this is a little late! We've been just a little bit busy! Hahahaha...... but better late than never!!

Oh my precious boy…It’s hard to believe that its been four years since we were blessed with your beautiful little face.  When I held you for the first time I instantly fell in love with you. I remember holding you and nursing you and wanting to breathe in your sweet baby breath and never forget how you felt laying on my chest. I knew that you were a fighter from the first breath you took.  You were so tiny and born too soon but nobody in the room or surrounding hallways would’ve known any different because you came out screaming! What I didn’t realize is just how strong you really were, nor did I have the slightest idea that in the process of being your Mommy that as I watched you physically grow and reach your milestones that I would be the one getting stronger. You’ve made me realize I had strengths that I didn’t know I had and gained some that I never possessed. I was a good Mom to your brother and your sister before you were born but I held on to a “Do It All” mindset. After I became your Mom, I realized that it wasn’t quite so important to always have a spotless house, keep up with every stitch of laundry, have healthy organic home-cooked meals fixed 99.9% of the time, be on time to every function with three perfectly dressed kids,  look perfect, act perfect, be perfect.  No, my angel boy, you made me realize that sometimes it’s more important to forget the laundry and sit in the rocking chair with you or take your sister to Starbucks at 9pm so that I can talk to her. I’ve learned patience. I’ve learned how to survive on mostly interrupted sleep and a lot less of it. I’ve learned how to stand up for what I believe in (especially when it comes to you or your brother or sister) when I use to be too worried about others opinions. I’ve learned to live in the moment and cherish that moment because sometimes it means being thankful for the very breath you breathe. And, I’ve gained faith in God Almighty like I never knew I could!   You are an awesome little man Lydon Jefferson.  I am so proud of you. You had your best year ever as a three year old. We made it through a whole year without an overnight hospital stay and that really is amazing just like you!

     You had such a great time with your Dora party at the park and you loved every minute of it. All of your biggest fans were there to cheer you on. Grandmommy, Paw-Paw, Poppy, Mimi, ‘Nandy’, ‘Dee’, Cole and of course, “your Saydee”!   You’ve adapted to having to wear your oxygen like such a little champ. How could I have expected any less?  You laughed, you ran, and you played without skipping a beat. Thank goodness Mommy thought to take your cannula off for you to blow out your candles! ;) The last four years have gone by so quickly but without a doubt they’ve been the best four years of our lives. We have all learned to smile through adversity, be thankful for the little things in life like chocolate cake and “wady bugs”, and to never ever give up!! Here’s to you my sweet Ly Ly…to four great years and many many more!

Wednesday, April 17, 2013

Aerodigestive Update

Oh where to start?  Let me start by saying this....If any of you have a private conversation with Lydon, feel free to tell him that Mommy is ok with him not maintaining his status of "medically complex".  I usually encourage my kids to do their very best in whatever it is that they are involved in and I tell them to strive for excellence but my dear Lydon Jefferson this is one area where Mom will gladly accept dull and boring! ;) That sounds funny to even say write because nothing about our life or Lydon has ever been dull and boring! ;0)
  The last time I updated, we had just completed the scope and biopsy procedure done by our Aeordigestive team.  We got the results back from it and it was indeed as we thought.  Everything looked pretty normal aside from his lungs. There were areas of unexplained redness and inflammation there. The pulmonologist felt like this was significant enough to get in touch with the mitochondrial disease doctor that we are going to see this summer. After some planning and coordinating, they had a teleconference last Tuesday afternoon. Together, they agreed that his poor endurance and excercise intolerance seems consistent with the effects of mitochondrial disease. However, the cyanosis or blueness that we see associated with these occurances is not commonly an effect from mito but since your heart is a muscle and any or all of the muscles in the body are dependent upon the mitochondria they felt it necessary to once again look at Lydons heart and rule out any myopathy. We are having an echo done on Monday to assess these issues.   
     The next thing was to address his excercise intolerance. Last Monday, I took him in to the hospital and he completed a little mini stress test.  This is more simply called a walk test.  Basically, Lydon had to walk for six minutes in an air conditioned hallway.  They measured the distance he was able to walk and monitored his heart rate and oxygen levels the entire time. Yesterday, we followed up with the Pulmonologist and he told us that it was very clear that Lydon needs oxygen for any type of activity, even walking. :(  We already knew this was the case. We've seen him turn blue and become short of breath with the simplest of activities but we didnt know just how low his oxygen levels were dropping. He told us that this was all just part of the disease process and providing Lydon with the supplemental oxygen was really the only thing that we can do.  Unfortunately, this isnt something like asthma where breathing treatments or steroids are something that would help or improve things.  Our doctors believe that because of his diseased mitochondria, he is lacking the ability to manufacture the amount of oxygen that his body needs and therefore he suffers respiratory wise and doesnt have the energy that is required to engage in even minimal physical activity.  He assured us that the mitochondrial disease doctor would talk to us and explain some things to us more at our appointment with him in May. We are saddened that this just seems to be where we are with Lydon and that there really isnt anything else that we can do BUT he is an amazing little boy.  He loves living life. He has taught us to live in every moment. He frequently stops to smell the flowers, literally. He enjoys watching ants, looking in the sky for airplanes and finding "wady" bugs.  And with a beautiful spirit like that you can bet your bottom dollar we are going to do everything in our power to smile and laugh with him despite our heartache. Our hope is that having him on oxygen he will have more endurance and be able to play more without the cyanosis and shortness of breath;hence, protecting his organs from oxygen deprivation during these times that he is struggling to compensate for what he is lacking.
     We are also working with the GI doctor to try and help him with his tummy pain and bloating.  He has some really good days and enjoys eating his "safe" foods but he also has lots of "Ritz days" where you guessed it, he eats nothing but Ritz crackers.  God bless Nabisco!   Our only drawback to some of these GI meds is that they either A.) dont work at all or B.) come with significant side effects.  So here we are again....just disease process.  Really starting to hate that word/phrase! Anyway, he has a few ideas that we are going to try after we get back a clear echocardiogram. For now, we enjoy the days that he eats like a champ and are thankful for his formula and J tube when he doesnt.
     I will try to update again after we get the echo results.  We are looking forward to some very special upcoming days.  Lydon is turning 4 on Sunday!!  I cant believe its been four years since we recieved our special blessing.  Then about two weeks after that, Jono and I are leaving on a cruise to celebrate our 10th Anniversary!! Thats another one that's hard to believe. We will come home for a week and then leave again for the appointment with the mito doc. We will get back from that trip and be home for about two weeks and this one might be the hardest of all to believe,....  Sissy turns 16!! Busy summer days ahead...Thank you for all the prayers and sweet comments and encouragement we've received already from many of you through Facebook, Twitter, or email. Until next time...Much love, Jana

Monday, March 18, 2013

What we know so far

Lydon had his procedure done as planned on Wed.  Everything went very smoothly.  His airway is much rounder and larger than it was last time.  He now has minimal narrowing which makes intubation much easier.  However, his airway was so wider than it use to be that they were actually able to do the procedure without intubating him at all!!  He did great!  They kept us in recovery for several hours as  a precaution but we were able to come home later that afternoon.  This may have been a first true outpatient procedure for us (except for once when he was an infant) but we will take it!! ;)  It was so nice to be able to come home and sleep in our own beds.  So, we received good news about his airway.  His stomach and small intestine looked very good as well.  The only significance was with his lungs.  His lower airways looked somewhat narrowed and red.  The pulmonologist was great!  We really liked him a lot.  He said that he will proceed with a full pulmonology work up including a CT scan and a stress test which will measure Lydon's endurance and exercise intolerance.  The doctors had their round table on Friday so we are just waiting to hear back from the PA. Hopefully we will get a call today with the culture results and what the treatment plan is going forward. The last couple of days have not been his best for sure.  He has complained with stomach pain and not felt like eating at all. I will update more after I hear back from the PA.

Wednesday, March 13, 2013

Oh what a day!

I really had no intentions of updating today but I find myself sitting here needing a few minutes to unwind.  There really isnt much to update.  We arrived this morning at our scheduled appointment at 9 am.  We were brought back pretty promptly and shortly thereafter saw the first of three doctors.  Three and half hours later, our appointment was complete.  The appointment was long and intensive and suprisingly somewhat informative.  Most of what we talked about was "old news" to us but there were a few ideas for future testing and medication changes that were promising.  I will elaborate more on that tomorrow.  After the procedure, we hope to have more answers.  So after our appointment marathon, we walked over to the food court and grabbed some lunch.  We then proceeded to the anesthesia clinic.  After we consented to what seemed like everything under the sun and signed away all rights including the deed to our house, not quite but close enough, we were done! We rushed home in order to get medical records documenting Lydons clotting disorder scanned and emailed back to the anesthesia clinic before 5pm.  We made it with five minutes to spare! ;) It was decided early in the appointment today that its in everyones best interest to plan on admitting Lydon tomorrow afternoon in order to give his airway the extra time he may need to recover without distress. As I was scanning and emailing the medical records, my nurse started washing the beloved "night-nights" and packing the supplies we will need for the next two days.  At this point, we decided to run grab a bite of dinner. Lydon was past going since his nap today consisted of the 40 minute ride home. So we dropped him by Granmommys, ran to the closest restaurant, ran to pick up Aidan from Mimi's, ran to Wal-Mart for some much needed bare necessities because we've been lazily sitting around lately neglecting grocery shopping. (Insert sarcastic eye roll here.) Hollie was enjoying herself with her friends and cousin and didnt want to come home tonight which means that Aidan gets to stay with Granmommy tonight and Pawpaw tomorrow.  So after getting all the  necessities of which we forgot batteries and a nightlight,  we went to pick up Lydon and drop off Aidan. And would you believe it, Aidan wasn't one bit upset about spending the night at Granmommy's and Pawpaws. (Insert double eye roll! Once we got home, I gave Lydon his meds, and got him in bed.  I packed my bag for the hospital and took my bath.  We are suppose to arrive at the hospital in the morning at 8am. I will update tomorrow afternoon or evening depending on the events of the day.  Thank you for all the prayers and kind encouraging words we received today via text and Facebook. 

Monday, March 11, 2013

Where we've been and where we're going

     Just wanted to touch base and update everyone who so faithfully follows us. Although I really dont have much "new" information.  There is a lot going on and during these times, we rely on all of your prayers and words of comfort and encouragement.  As you know, Lydon has had problems with his airway and vomiting literally since birth.  So, the day we have been waiting for could possibly be tomorrow. 
     Tomorrow morning, we will be meeting with this new team of docs to discuss Lydons history and current issues. Wednesday, this team of three doctors, an anesthesiologist and several OR nurses will take him back to the OR to scope him from top to bottom and see if  they can find the cause of Lydons airway issues and difficulties and come up with a treatment plan.  This will be the first time since infancy that Ly has been put under anesthesia at TCH. So, of course this is very nerve wracking for us. Equally unnerving is the fact that Lydon has had this procedure done before and we havent ever received anything too definitive. So, the fear of putting him under anesthesia coupled with the possibility of not getting the answers we need is overwhelming. We want our boy to be able to play without vomiting or gasping for air or becoming exhausted. We are praying and ask all of you to pray that this team will see what they need to see.  They will be a "new set of eyes" and like the good book says ..."Again, I say to you that if two of you shall agree on Earth as touching any thing that they shall ask, it shall be done for them of my Father which is in Heaven. For where two or three are gathered together in my name, there am I in the middle of them." Matthew 18:19-20
      Add to all of this the death this past week of my Pappaw and this Momma is ready for a break! Please remember in your prayers, my Dad who lost his best friend and my Mammaw who lost her companion of 63 years.  He will definitely be missed! I will do my best to update after tomorrows appointment. We were told we would literally be there all day and then be back there early Wednesday morning for the procedure.   Hollie has plans with some of her friends this week and our middle man Aidan will get to spend some time with Mimi and his favorite girl, Cousin Peyton.  Not exactly the way I had planned to spend our spring break but I guess it will all work out. For now, we will Keep Calm and Carry On! ;)

Sunday, February 24, 2013

Fear, Hope, & Faith

Just taking a moment to share... This is not really an update on Lydon but more of just a window into my life right now as Lydon's mommy.  First I should say how very blessed I am to be  Lydon's mom.  He has a way of melting my heart and making it swell up all at the same time.  He's an amazing little boy and I am so very thankful and grateful to have been blessed with him and see him overcome the challenges that he has. He is so strong... so brave... our "Super Man"... and often times our hero.  That being said, I am so very nervous about the procedure we are scheduled for in a couple of weeks.  While I feel like being accepted into this new clinic is a good thing and could provide answers and the kind of care we have prayed for I am having a hard time calming my nerves. Those that are closest to me have tried telling me "not to worry" and to "have faith and leave it in God's hands." While spiritually (mentally and emotionally) I know that this is the right thing to do, its what I need to do and in fact, it's all that I really can do, I just cant seem to do it.  For me, the thought of putting Lydon under anesthesia again is not just terrifying scary, it's physical.  My stomach hurts at the thought of watching his little chest suck in and out as he struggles to breathe and seeing his tummy bloat as he breathes harder and becomes more acidotic. My head hurts as I think about the tears I've cried and the conversations we've had discussing our options with numerous physicians during these times.  My neck hurts and I have literal knots in my back and shoulders as I remember the nights without sleep or slightly sleeping in a cushioned window sill (literally). My heart aches at the thought of the pain and suffering Lydon could go through and for being away from my other two babies night after night and still not knowing if or when Lydon will turn the corner and get better again. Despite it all, I know that this is the right thing to do for our boy. So, somehow as I've done many times before, I have to find the strength and courage from within to soothe my stomach ache, relax my neck and back, and squelch my fears. And while as a Mom, my inner most self wants to crumble and give in to the hot mess of emotion I am feeling, I can not...I will not.  My boy needs me to find my hard shell and wear it! He pushes so hard every day against challenges that would get the best of many adults in a matter of days. "No, my doll I will not tuck my head under my shell and hide." I will stand behind it and fight for you just like I always have. I choose 'Hope'.... I choose to believe that even more prayers will be answered and that this will be your time, your season... that we will find answers through this procedure and come up with a plan with this new team that will allow you to play and not be oxygen hungry, eat and not vomit and sleep and be rested.  This is my wish, my prayer for you Lydon, my 'Joy'.  So as hard as it may be to ignore the physical aspects of the anxiety that I feel, I will hold on to my 'Faith' in our Heavenly Father which is so much bigger than my stomach ache, my headache or even my fear. No, it is not an easy thing to do and I have to keep reminding myself (over and over again) that HE is with me and HE will be with you on that OR table. Slow and steady wins the race!

Wednesday, February 13, 2013

The latest on Ly


   Last time I updated on Lydon, we were trying a new medication and had just changed Lydons GJ tube out to see if that would help any with his pain.  It has seemed to help with his pain-YAY for that-- but his appetite has not been what it was and he has definitely still had a lot of fatigue and poor stamina.  In December, we made an appointment to meet with our ENT.  This doctor has taken care of us before when Lydon was younger and in fact was the first doctor who suggested that Lydon may need some type of airway manipulation such as a tracheostomy or surgical intervention.  That of course is the last thing in the world that we want but as parents we also want for Lydon to have a quality of life like the rest of us. At the moment, his quality of life isnt the greatest or not at least where we would like it to be.  He can not play for more than a minute or two (no exxageration) without becoming very short of breath and vomiting.  He stays very very pale and has little to no energy. Literally to the point that he doesn't feel like eating.  On Saturday, he was with my mom all day and usually "eats the house down" just because its Granmommys house I guess, but he ate nothing until about 7 pm and then ate a small bowl of oatmeal but by 9pm he vomited twice as much as he ate. Yesterday, was much the same except the oatmeal was mac n cheese. He's such a "pro" at vomiting he knows to run to the kitchen or entry way so that he vomits on the tile. So, back to our appointment...We made this ENT appointment back in December after we had met with the Cardiologist and gotten the all clear from them on Lydons heart. Once we ruled out his heart as our culprit, we felt like re-evaluating his airway was our next step.  Since then, Lydon has continued to have the issues and symptoms I already described and occasionally de-sats when he sleeps.    So, we were very anxious about this appointment again in hopes that we might find some answers and some way to change some things for Ly.  The appointment was originally scheduled for last week but I got a call that the doctor had a family emergency and had to cancel.  I was very upset and explained to them how long we had already waited and what we were coming in for and they rescheduled the appointment for yesterday.  I'll admit I was somewhat anxious but after literally years of searching for answers for Lydons issues, I've learned not be too optimistic about hearing anything conclusive. So yesterday we go and give some history to the doctor. She talks to us for all of about five minutes and then says that there is a clinic that Lydon belongs in and she'll be right back.  So, she leaves the room and comes back with the coordinator for a fairly new clinic at TCH for medically complex kids.  She told us that it "just so happens" that this new clinic was there having their clinic at the very same time in the very same hallway as we were.  I do not count it coincidence....again our appointment was originally scheduled LAST week.  What are the chances of our appointment being rescheduled to this particular day??? So, we didn't get any answers to anything yesterday but we were referred and accepted into this new clinic.  We will be seen at the next clinic day the first part of March and the three doctors that head up this clinic together will go back to the OR the next day. To say I am anxious about this is an understatement.  I am optimistic that this may be our answer to some extent. I am nervous and worried and scared and a host of other adjectives that I dont have time to write about in regards to Lydon being put under anesthesia again.  They have already reassured me that every precaution will be taken but I know Lydon and not the 10,000 other kids they take care of therefore, I am only slightly reassured but not relieved. So we will see... We did feel "handed off' but we did not feel dismissed but rather "heard" and in our world, thats a rare and beautiful thing.

"There is a season for everything, and a time for every event under heaven" Ecclesiastes 3:1-International Standard Version

Thursday, January 24, 2013

GI Update

I posted on FB earlier this week that I would post an update as soon as I got a spare moment and the moment has come! ;) After ouir ER visit, Lydon continued to complain of with his stomach and his "butt-ton". He didnt want us to connect or disconnect an extension and would even whimper and hold his tummy in his sleep. So, on Tuesday our GI NP that knows us pretty well at this point saw us in clinic.  We explained everything that we have been seeing with Lydon lately. His continued complaints of pain with his button, decreased appetite and complaining after he eats, bile backing up and out of his tubing, bloating and distention, and his fatigue and lack of energy.  Our nurse ended up holding him and hand feeding him Tuesday morning he was still so tired even after a full nights rest.   So after talking literally for more than two hours we decided to start with the easiest possible solution. "Easy" of course being a variable word. The GI NP felt that we may have just gotten a bad tube and that with all of his complaining it warrented changing it to see if that would help him any. Next, we may try one dymotility medication. We have at one time or another tried them all to no avial. Our manometry test proved this as well but this medication is used "off label" for its motility side effect. We have just recently tried this medication and did not see any positive side effects but it may be worth trying one more time. If neither of those two things help then we may have to do an endoscopy to see if he has an ulcer somewhere that is bothering him.  As far as the lack of energy and fatigue, her thoughts were that this is just a typical mito symptom.  Lydon just recently had a growth spurt and gained more than 1lb and more than 1inch!!  She (GI NP) feels like maybe, Ly's body has tried to compensate for this growth spurt and just hasnt really had the energy for anything else above and beyond that.
     So, yesterday, we headed back down to the med center. Thankfully TCH can change our GJ tube in the IR department without the use of anesthesia which is always a very serious major issue for us. Lydon always gets nervous and is such a little heart breaker. But, Mommy knows that in five minutes we are back in each others arms and not in the PICU on a ventilator!! We will see what happens from here but so far he has been in a great mood today and not complained at all.
     After we went to IR, we were seen by neurology.  Our neuro thought that Lydon looked great!  He commented on the tightness in his calves and ankle weakness but he feel likes he is doing very well and just asked us to put Lydon in hi top tennis shoes when he is active.  We also learned that our whole exome test results are back but so far, we havent heard back from genetics.  Maybe next week!
Until next time.....

Friday, January 11, 2013

Never a dull moment

I posted the other day that we were playing the waiting game with Lydon and this "new" GI pain.  Well it wasn't a very long game, although I guess that is very relative based on who you are asking! We started the new medication, which is suppose to help with GI pain, Wednesday night. Thursday morning, Lydon woke up pretty early complaining with his stomach. When I went in to check on him, I noticed that his extension tubing was full of thick sludgy bile and the valve had popped open and there was bile all over the bed.  I know that the end of the tubing lies right into the jejunum which is very close to the common bile duct.  So although it is possible to get bile back up from a j tube, I was concerned with the amount and how thick it was. Later Thursday afternoon the GI nurse called me to check on Lydon and see how he did with the new medication.  I told her about the mornings events and she insisted on calling the doc.  She called back and instructed us to go to the ER to have an ultrasound done on Lydon's abdomen to rule out a couple of possible serious causes of his pain and bile back up. So as much as we hated to do so, we packed up and headed down to the ER.  After the ER doc examined him, she was concerned that with the combination of the bile back up and his pain after eating we could be dealing with a gallbladder issue.  So we got a stat ultrasound before they even drew Lydons blood. Several hours later, we got the results.  Lydon's ultrasound looked good.  No gallbladder issue, no liver problem and no pancreatitis!  The xray did show that the J portion of his GJ has slightly slipped up away from the jejunum but for the moment, it is still acceptably in  place.  The docs thoughts are that Lydon is having some intestinal inflammation and may have an ulcer from acid reflux. Although I am very relieved that Lydons pancreas and gallbladder are functioning well and not diseased in any way, I hate thinking that his stomach is hurting and that there really isn't anything that we can do to help him. I am scared to think about what is happening with his dysmotility and where that will end up. I feel like I am living in a constant state of anxiousness or panic...maybe it is just the fear of the unknown but either way, it just plain sucks! For Lydon, dealing with the intermittent pain and for us to not know what to do or how to help him. On a good note, we now know that this isn't an urgent matter that needs any type of surgical intervention and we are working closely with our GI team and feel like they are being very proactive in trying to help us help our boy.  So, for today, we are just happy to be home (albeit exhausted) and not inpatient dealing with a surgical/anesthesia issue which is always so complicated for us! Thank you to all of you who prayed, texted, emailed, and tweeted your expressions of love and support last night. In our weakest scariest moments, that is what strengthens us!  Much love.....

Tuesday, January 8, 2013

A call from GI

Today, I got the final word back from our GI doc. We are going to do our best to treat these new symptoms that we are seeing. For now, we've decided to increase the dose of one of Lydons GI meds and add a new medication. This new med is used for neuropathic pain and suppose to have very little side effects. So we are hoping that is exactly what we get. Decreased GI pain, and no side effects! We are staying in close contact with our GI doctor and his nurse. For now, we play our favorite game ( insert sarcasm), watch, wait and see... We will check in with them again on Friday and see how things look then.

Monday, January 7, 2013

A quick little update

Just wanted to post a quick update about Lydon.  Over the last couple of weeks he has started having some increased GI/Abdominal pain.  We spoke with GI and at the time it was felt that his pain was just a result of his dysmotility and was to be expected to some extent since this is an issue that waxes and wanes over time. However, over the past several days, the pain has become much more consistent and more intense. He had a rough weekend with pain and even woke up during the night with pain.   It seems to be worse within minutes after he eats anything and then today he has complained even after just drinking his milk.  His appetite is definitely decreased as well. We have a call in to the GI doc to see what our plan. Please pray with us that can figure out what is making our boy so uncomfortable and that there will be something we can do to help him.

Tuesday, January 1, 2013

Happy Birthday...Goodbye 2012, Hello 2013!

     Yes, its true, I am another year older. I have completed 37 years of this,  my earthly life. I so clearly remember being 17 and thinking that I knew then everything that I know now.  Whats funny is that I probably did know most everything that's necessary for survival. I knew how to drive, how to cook, how to do laundry, balance a checkbook, study and ace a test, etc. What I didn't realize is how much knowledge I would gain from just living life the last 20 years and how much that knowledge would change who I was and my prospective on life.  In the last five years I feel like I have learned more "life lessons" than I did in all the 32 years before. I now realize more than ever before what an incredible blessing it is to have a healthy baby/child. I realize how I have in the past taken for granted the fact that my children would turn 5, hop on the school bus and walk in to Kindergarten. I now understand the heartache of knowing that my baby boy very likely will not get on the school bus and walk in to Kindergarten. And after the events of this past month,  I also understand the joy of seeing my other two babies step off the school bus each afternoon! Never again will I walk my kids to the bus stop or drop them off at school and not say a prayer of protection over them as I drive away. I've learned in the last two years that when times are tough, you may not really have as many friends as you once thought you did but the ones that honestly care about you will shine through like a diamond. After all, diamonds are made in the rough! In 2012 I was either directly or indirectly acquainted with four families who lost their babies. All of them only 2yrs old or younger. From this experience, I learned that much of life is not about how big your house is or how clean your floors are (although I would love to have a bigger house with cleaner floors) but about how much time you spent living in the moment! Not just being in the moment but putting down the cell phone and living in it!That lesson has been even further drilled into my head as I take care of my 90 yr old Grandmother. Many times for her, she doesn't remember if she ate breakfast or took a shower but she remembers seeing Lydon everyday, she remembers him teasing and playing games with her. She remembers her brothers and sister, her parents and childhood days, and her spouse and all the memories they made while raising four children. She often times doesn't remember the tangible things like the  house they lived in or the cars they drove.No, she doesn't remember the things that you can see, but she remembers what you can feel. The love. The trust. The loyalty and faithfulness.
     2012 was an extremely rough year for us. We spent the biggest part of the first half of the year in the hospital with Lydon and then at home on TPN. We faced several challenges with Lydons health care and had to make the very hard decision to switch some providers. I had to quit a job that I loved because of  Lydons health issues. We in turn battled some big financial issues. We experienced the heartache of seeing some friends bury their babies all the while knowing in the back of our minds that especially after this past year, we couldve just as easily been walking in their shoes.  Jonathan continued to battle some major health issues that are still unresolved. We dealt with some teenage issues which are never fun and always a challenge.  2012 was not a "good" year but I learned some of the most valuable lessons that I feel like I will hold on to for the rest of my life.
     Life really is about the moments that take your breath away. Saying good night and good morning to the one person who smells your morning breath and still loves you. Seeing the joy on your children's face when they realize how to read a sentence or spell a word without your help. Feeling the joy on your own face when your teenager tells you how much she appreciates you taking her to school when she misses the bus or when Aidan told me on Christmas night that Christmas really isn't about all the presents but its about the birth of The baby Jesus and that all we really need is the love and the caring. Realizing that it really doesn't matter at all what house you live in as long as all of the people you love and care about are still alive.
     So as we say goodbye to 2012, I choose to remember it as a difficult year indeed but also a year in which I gained so much! And as we begin this new year of our lives, here is what I wish.
Hollie, my beautiful girl... I hope that this year as you finish your sophomore year of high school that you find your passion, whatever it may, photography, or maybe something new that you haven't ever tried before.  I hope that passion grows deep in your heart and always bring you comfort and joy. I hope that the challenges that you will face in school, in learning how to drive, in friends and social situations aren't too hard but difficult enough to make you stronger and more appreciative of who you are and what you have in life.
Aidan, my energetic boy... I hope that you will learn to be more focused this year. I never want to lessen your love for life and the zeal and the zest that you have for having a good time but sometimes life isn't all about fun.  I hope that you learn that it may not be as fun to follow the rules but that they have usually been put there for a good reason. I hope that you learn to listen better and redirect your passionate energy in the right direction. I hope that you never lose your love for activity and playing hard; otherwise, you will have to drastically change your eating habits to avoid obesity and we all know how much you LOVE your food! ;) I also hope that as you get older that you do not become "wiser" and lose your color-blindness. I love seeing your love for others and your willingness to be friends with everybody regardless of age, race or gender.
And Lydon, my doll... I hope that this year isn't as difficult for you health wise as last year was. I hope that we can do something to improve your airway issue and give you the ability to play without being short of breath and vomiting. I hope that we can come up with some way for you to attend preschool and develop friendships with others your age. I hope that you can have a year without hospitalizations or pain. I hope that you grow bigger, stronger, taller and laugh...a lot! 
And Jonathan, my love...I hope that we have a better year with less stress and more down time. Even more so, I hope that you have a better year. I hope that you are able to get some answers and resolutions to your health problems. I hope that this year brings treatments that grant you less pain and fatigue. I hope that you are able to move forward in career and all of your hard work in 2012 pays off. I hope that you are able to enjoy life more in 2013.
And for myself, I hope that I can continue in my quest to become stronger and healthier. I want to make more time for prayer. I want to focus more on not just disciplining my children but teaching them right from wrong. I want to teach them how to find more happiness and contentment in the things that are free... doing for others, coloring a picture for a friend, singing a song or playing a game. And my wish for all of you is that in your own way, you can do the same because when all is said and done, love is all we need! Happy New Year! Here's to hoping and praying that 2013 will be good to us all!!
Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
1 Corinthians 13:4-7
Love NEVER fails!
1 Corinthians 13:8