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...

Saturday, December 25, 2010

Letters from Santa: Lydon

December 25, 2010

Dear perfect little Ly-Ly,

Well, well, well. Where do I start Lydon? Could this year have been any crazier for you? I suppose not. Well, I’ll keep this simple.

A lot of prayers have gone up for you this past year and lot of people are still praying for you and watching you. Don’t think I haven’t noticed. I really wanted to bring you a miracle this year, but I think it’s gonna be an extra big miracle so we’re just going to keep working on it and maybe we’ll be able to get it to you next year.

Your parents and your Jesus love you so much and they’re never going to give up on you. Never. You were a gift from God and I wouldn’t be surprised if you did something great someday.

So you just hang in there, be the best baby boy you can be and grow, grow, grow!

Merry Christmas to a brave little fighter,

Santa Claus

Letters from Santa: Aidan

December 25, 2010

Dearest Little Aidan,

This is the 5th Christmas that I’ve come to visit your home and leave you presents. I’ve watched you really grow and go through some big changes this past year. I’m proud to say, through them all, you’ve done pretty well.

Going to the school for the first time ever, like a big boy, must have seemed like a big challenge, but you’ve done a great job at it. You’re nice to your teachers and your friends and you’ve learned a lot. You parents are so proud of you for learning so much and doing so well. Keep up the good work in school and it will pay off for you big time!
I know you’re baby brother has been sick a lot and you’ve had to be away from your Mommy a lot, but through it all, you’ve been such a big boy and were so good for your Daddy. Having a sick little brother, being away from your Mommy and still being a good boy…now that just shows what an awesome boy you can be.

One thing I’d like you to work on, though, is to stop wetting the bed. That’s a bad habit that big kids CANNOT have. If you want to be a big boy, you’ve got to say goodbye to the pull-ups and quit peeing in the bed. It’s gross and really, really not cool. So make it one of your biggest goals this year. DO NOT wet the bed!

Also, I want you to really work on being nicer to your Mommy and Daddy. Stop all the whining and fussing ‘cause that’s what three-year old boys do, not big, strong five-year olds. Say things that are nice, leave things alone that aren’t yours and learn to accept that not everything happens the way you want it to. When we don’t get our way, we have to smile, accept it and be our best and that’s what I want you to do. Nobody loves you more than your Mommy and Daddy. So do and be your best for them.

Lastly, I want you to say your prayers more often. Remember to say them at night and before meals. Never forget, prayer is one of the most important things you can do. That’s when you get to talk to Jesus and He always listens. Trust Jesus, learn about Him at Sunday School and be the best boy you can be for Him, always.

Well, time flies and now…so do I. You asked me to bring you a blue light saber and so I did. I brought you the best one ever. Like you, it springs into action and lights up everything around it. Enjoy, be good and may the force be with you!

Merry Christmas,

Santa Claus

Letters from Santa: Hollie

December 25, 2010

Dear beautiful Hollie Anne,

What can I say about such an amazing young lady? This has probably been one of the toughest years in your young life so far and you’ve truly shown a growing maturity and a strengthening of character. Your parents truly could not be more proud of the girl you are and the lady you’re becoming.

I know that school and friendships have presented some challenges this year, but I’ve seen your friendships grow and your success in school excel. Your Mommy and Daddy could not be more proud of the grades that you achieve and of the friends that you have chosen to be around. That alone says a lot about who you are.

One of the greatest areas where you’ve grown is in your maturity and willingness to help when the chips are down. During all of the hospital stays and all of the times that your Mommy and baby brother were not at home, you were a huge help and a great source of strength and comfort to your Daddy. I know for a fact that he couldn’t have made it without you. The way you help with your two brothers and the way that you wake up and go to school every day with a good attitude does NOT go unnoticed and I want you to know that I love you and appreciate you for doing your best at helping your parents.

Now, I know that as a teenager, you can be a bit of a toot. Don’t get your undies all in a knot just ‘cause I’m saying it. It’s true, sometimes you can be bratty and spout some smack at your parents, but hey…you’re not a teenager. I’m not saying it’s okay. I’m just saying I understand. You parents love you and they know that being a teenager can sometimes be a pain in the…um…well…you know. Just keep doing your best, thinking before you speak and you’ll be fine.

Remember, you’ve got two little sets of eyes looking up to and your parents are still depending on you to help them by being a good example. I’m delighted to say that you are, Hollie. You really are.

Another change you’ve went through with flying colors has been church. I know it’s been a crazy year, but you’ve kept a good attitude and I’m so happy that you’ve enjoyed the youth services at church. You’ve got some great people that love youth and have their eyes on you. They want you to know that they’re there to help if you ever needed. This is what being a Christian is all about…serving God and loving and helping those around you as He would. Always strive to do this. You can never go wrong in trying to follow God’s footsteps. He’ll always bless you. Count on it.

As always, Hollie Bell, I love you and am so proud of you. I’m truly excited to see you grow and am looking forward to a great, hopefully less eventful year ahead. I love you with all my heart.

Merry Christmas,

Santa Claus (a.k.a. Daddy)

Wednesday, December 22, 2010

Questions and Answers

  As many of you know, our visit with Dr. Koenig (the mitochondrial disorder specialist) was this past Friday morning.  Jonathan and I were very anxious and curious as to what exactly we would hear since these tests were all performed back in September and we have been anticipating them ever since.  We actually had talked many many times about what she might say and we thought that we were prepared for all the possibilities.  Wrong-O!!  Dr. K was very thorough,  nice and personable and we felt very comfortable with her.  She examined Lydon and explained to us the results of his muscle biopsy.  She told us that Lydon most definitely has some obvious mitochondrial dysfunction. She said that there were some inconsistencies in his results but that this is very normal at his age because mitochondrial disease is something that is progressive. As the mitochondria continue to work hard to keep up with the energy supply needed for normal growth and development,  they break down and wear out and reek more havoc on the muscle tissues.  Hence making the biopsies and testing clearer and much easier to diagnose as they get older. She said that because of some of these inconsistencies, she was not ready to give Lydon a mitochondrial disease diagnoses because she didn't want for him to be "put into a box" where we could possibly miss something else.  It was the "something else" that surprised us. We never had really thought about the possibility of something else causing his mitochondria to "fail." We just thought that they were failing on their own and that was enough for us. Guess that's why we consult the physicians and don't diagnose or manage ourselves. Dr. Koenig gave us a list of several things that she felt like we needed to test for and/or rule out.  She told us that depending on the results of this group of tests, she would either diagnose him with primary mitochondrial dysfunction/disease or secondary mitochondrial disorder in which case we will continue to search for his primary diagnosis. After all was said and done, we had literal stacks of papers to take with us to the lab for all of the blood work. We walked the long walk through the sky walk and hallways somewhat at a loss for words. Thirteen tubes of blood later, we waked out of the lab in tears...all of us!  Now, after having a few days to let some of this sink in a little bit more, we realize its not always as bad as it may seem.  We may not have gotten a definite diagnoses but we did get some answers.  We know now that there is something that does most likely connect all of Lydon's problems.  Now, we have a fantastic team of doctors who are not just monitoring him but observing him closely and besides that, we know The Great Physician is ultimately the one in control.  We will not get  any of these results back for 6-8 weeks so once again we play the waiting game.  Hopefully this time, they will come back sooner instead of later.  In the end, we left with some answers and a lot more questions but we've known for a long time that this road we were on wasn't going to be easy and we have so much to be thankful for!  In the spirit of Christmas, my next post will be about all of the incredible blessings we have received this year and most especially this season.

Tuesday, December 14, 2010

Home, Answers, and Lots of Anticipation

Ive written this blog and deleted it at least twice since we've been home and Ive finally decided that I need to at least let everyone know that we are home and Lydon seems to be doing very well for now.  It took me a couple of days to get everything back in order and decide exactly what I should say.  There are several things about this last hospital stay that I could say.  We obviously had serious medical/respiratory issues this time which made me reevaluate a couple of things and we had some doctor issues that made me want to go postal!!  Both of these things coupled together made me realize that I above anybody else on this Earth,  know Lydon the best.  When you are dealing with serious medical issues like this, that is harder to grab hold of than you might think.  I believe that we as a society are conditioned to believe and trust in doctors and medical professionals.  We also as human beings, tend to second guess ourselves at times and worry about what our peers might think of us.  To clarify things, and be a little more specific, I feel that I/Lydon has a great team of doctors working with us and I could not be happier with the care he has received from the hospital and all of the nurses. However, this time the attending physician on our team had never taken care of Lydon before and insisted that he was fine and "just had a cold" and could go home.  I knew better but despite my resistance, she discharged him!!!  It took a lot of guts and gumption to have just been discharged and told by an attending physician he was fine to go home only to go around the corner back to the ER to be readmitted just minutes later.  But, that is exactly what I did.  Thank goodness for a little bit of pressure and reassurance from both Jonathan and my mom because by the time we pulled back in the ER he was in complete respiratory distress. Needless to say, I was quite upset over this incident for several days but I didnt have time to really focus on it with him being in the condition he was in.  Futhermore, like I've already said, it just proved to me that I shouldnt second guess or question myself in future.  I truly know Lydon the best.
     As far as the last OR visit..He did great this time and we did get some answers  Thank you Jesus!  We found that as suspected, he does have subglottic stenosis or narrowed airway. It is approximately 15% narrowed.  So, at this age, they generally do not dilate or manipulate the airway in any way unless it is at least 30% narrowed which was just fine with us. What that means for now is that we have to watch him a little closer than we were respiratory wise and have some very specific anesthesia protocols in place.  We are scheduling a sleep study to see if this is effecting his breathing at all during the night.  I was told there is a possibility that this could be part of the reason why he seems so exhausted and wears out so easily.
     Lastly, we have an appointment on Friday with the neurometabolic disorder specialist.  Hopefully we will get all of the results from his muscle biopsy which was done in Sept.  We have waited a long time to try and find some explanation for many of Lydon's issues.  Although, we will not be happy to hear a mitochondrial disease diagnosis, we are ready to know what is behind all of this and how we can help Lydon and move forward from here.
     Say a prayer for us Friday morning.  I will keep you all posted. Much love....

Tuesday, December 7, 2010

More Surgery... Aidan and Hollie

     Well, we are still in the hospital and I am very tired so there may be a bit of rambling in this post so please forgive it if so.  I am taking a break and allowing myself to get out of the room for a bit while Lydon sleeps. I really dont know where to start on this post.  I  have so many things Id like to rant about but focusing on the negative usually doesnt get you very far so I'll try and shy away from it.       Let me just say that I do sincerely appreciate the people who call, text or email me frequently to check on me and Lydon. Please do not take it personal if I do not respond right away, just know that I love you and appreciate the concern. It hurts me sometimes (especially when Lydon has been so sick this time) that I personally rarely hear from some of our very close family and friends.  I did say that I would try and shy away from the negative and trust me, this admission has brought a lot of it.   More on that later...
     Now on to other things and where we are currently.  When we came into the hospital on Thursday, orders were not automatically written to admit us post op.  We had hoped and prayed that Lydon would do good tolerating the anesthesia and intubation and we would be able to go home later that night.  That of course did not happen.  Lydons airway started swelling before they ever got him intubated.  After surgery and the extubation he became acidotic and struggled to breathe.  They started blasting him with steroids, breathing treatments and fluids to reduce the swelling and balance him out.  We have continued that process and although the swelling ( also called stridor) is much improved it is still present.  So, the most agreed upon theory at this moment is that Lydon has lower airway swelling that is somewhat anatomical and somewhat caused from scar tissue that has built up from all of the recent surgeries and intubations.  We cant allow him to stay this way for reasons passing understanding. So, the plan is to go back in to the OR tomorrow morning at 7:30 and take a look.  I am told that the physician who is doing this is an expert in the field of pediatric airway conditions.  They will look and evaluate Lydons entire upper and lower airway and decide how narrowed it really is. Depending on what they find, they will try and dilate that area.  Needless to say, I am not looking forward to this revisiting of the OR in the least but hopefully it will give us some answers and prevent Lydon from getting in such a serious respiratory state in the future.  Please continue to pray for him.
     In the midst of all of the chaos we have experienced this week with Lydon, my heart has been pulled for my sweet Aidan. He is such a handfull to say the least, but this week he got very sick. He has pnuemonia and all the while has run around like he was just fine.  What a difference in my two boys!  Nevertheless, it really makes me miss him when hes sick and needing some extra TLC.  Regardless, Daddy did a great job.  He stayed home with him yesterday, took him to the doctor, picked up and gave all of his meds, and took him to stay with  Paw Paw and grandmother this morning.  Thank God for Paw-paw and Daddy!
     Hollie had her first meeting about high school classes/schedules last night which we missed.  However, she wasnt the least bit concerned about us missing it. She told me "Ive got it covered and its totally stupid to even go to!'  ;)  Funny...I use to wouldve argued with her about the importance of going to things like this but instead I just breathed a sigh of relief and said "Ok then, maybe we'll make the next one." 
     Well, I've been out the room for about an hour and half so I better get back. He is probably awake.  Please say a prayer for us tonight and in the morning and also remember my sweet Mother.  She is also sick with pneumonia and has still been up here to help me some and not a missed a day of work to rest and take care of herself.  I love her so much!
     Also, please excuse the format of the previous post.  It would only allow me type on the title box from my phone and I wanted to update what I could so I will try and fix that later.  Thank goodness for a few  available computers around the hospital as I left my at home this time.  ;)

Saturday, December 4, 2010

Lydon's Surgery Update

Please continue to pray for Lydon. He had alot of problems with the intubation and anesthesia which is normal for him but this time has been much much worse. He still has not really responded to any of the treatment they are doing and has not improved respiratory wise but has remained stable. They think he may have acquired an infection from the OR and have presumptively started him on antibiotics. On a good note, the gi portion of his surgery went well and he is having no problems with his new j tube.  Keep praying for him. I will update with new information once available.

Wednesday, December 1, 2010

Confessions and Surgery

   They say confession is good for the soul and I'm going to do my best as I blog to always be honest about what I think, what I feel and what is going on.  I think that this is what will be the most therapeutic for me and the most informative for all of you who are reading this. goes. 
   Last night, I thought I might literally pull my hair out.  Both of the boys were whiny and clingy, they were making messes, hurting each other and I just wanted to get away.  So, I did. I purposely told Jono not to get diapers when he stopped at the store on the way home so that there would be something that I needed to go out for.  I met a friend...we got coffee and stayed out way too late.  I did remember to get the diapers before I came home. ;) 
    I felt better but there was still a part of me that wished that I didn't have to come back home and face the responsibility that greeted me this morning when I woke up.  So, I got up and dressed Aidan and took him to school and came home and got back in bed.  I haven't changed my clothes today from what I wore yesterday and I don't plan on cooking tonight because tomorrow I wont have these options.
    Tomorrow I will be back in the hospital with Lydon.  My awesome incredible hairdresser came by my house last night out of the kindness of her heart and trimmed Lydon's hair for me.  I told her I may come in to the shop and put some brown streaky highlights in my hair.  Its not really that I'm not happy with my hair.  Ive always loved my blonde hair and have never really ever wanted it to be any different.  I think that I just wish that things were different.  But they aren't.  So for now, I will keep putting one foot in front of the other and walk down this unknown path that life and most definitely God is leading us down. 
      Tomorrow, Lydon will have the feeding tube that goes in his stomach ( called a G tube) switched out with one that goes directly into his intestine (called a J tube).  When we decided to go ahead with inserting his G tube, it bothered me but I knew that we had no choice.  I along with several different docs had tried everything to treat his reflux and get Lydon to eat.  He was not gaining weight or growing and even his bloodwork showed signs of malnutrition.  All of those things hurt my heart and Ive felt so bad that he has a plastic tube sticking in/out of his little tummy.  Nevertheless, this surgery bothers me even more.  I guess, there was a part of me that felt like when we did his fundo that all of this would be very temporary.  I thought that maybe we could fix his reflux with the Fundo, get him nourished and back up to par with his G button and the proverbial white picket fence would reappear.  Instead, his gastric emptying time has gotten worse and not better like the doctors had hoped.  The GI specialist (Dr. Navarro) told me that its as if Lydon walks around feeling like he ate Thanksgiving dinner all the time when in reality he has only had 1oz. per hour of a predigested formula. He therefore has almost completely stopped eating orally except for his bottle three times a day and an occasional bite or two.  He has gotten to where he doesn't even want to see any food on his highchair tray.  He hasn't gained what they had hoped or expected him to since his button was placed. He has started vomiting almost as much as he did before his Fundo.  Dr. Navarro says that is a direct result of his stomach not emptying.  Ive known that lots of babies temporarily end up with a G tube for some reason or another but a J tube just seems more invasive, more permanent and more of a reminder that Lydon's little body isn't working right. 
      As of right now, Lydon is scheduled for the first surgery case of the day at 8:30 am.  Lydon almost always has problems with anesthesia that have landed us in ICU twice after an intubation.  So, especially with him still not completely back to normal from his recent RSV infection I don't expect this time to be any easier. Please keep him, us and the physicians in your prayers tomorrow. I will do my best to post updates here or through facebook.