Pulmonology & EFL Walk

Trace had an appointment last week with his pulmonologist Dr. J.  We discussed Trace's inability to fall asleep, inability to stay asleep and oxygen desaturation during sleep.  Trace was acting quite aggressive and I had to keep him in his stroller most of the appointment as he tried to bite me, climb out, bounce like a crazy person and scream.  Dr. J said the aggressive behavior could possibly be due to lack of sleep.  I'm thinking I can totally use that as an excuse for my own behavior - I mean I'm not getting any sleep either :-)  Then she tells me "he's not the same child I saw in July, he looked so good then".  I don't know if she meant physically, mentally (due to the crazy behavior), or what.  I didn't ask, honestly because I didn't want to know.  In my eyes he looks good.  I just dealt with the whole regression issue a few weeks ago and didn't want to go there again. 

I explained to Dr. J how it will take up to two hours for Trace to fall asleep some nights.  She started him on Melatonin before bed to help him fall asleep easier.  I know it's one more supplement/med, but if it helps him that's all that matters.  Next we discussed how he wakes 4 to 8 times every night and how he's been desatting.  Brief history here - Trace was previously on oxygen while sleeping due to oxygen desaturation during the night.  He was doing well in late summer and had good results from his sleep study.  Dr. J and Dr. K decided to have us wean Trace off of oxygen and see how he did.  He did well while weaning O2 down and off.  However the last couple of months he was waking more and more.  So much I decided to pull out the pulse oximeter and see if he was desatting.  He was and I've listened to it alarm over and over for the last 3 weeks.  Back to last week - Dr. J has decided to put Trace back on oxygen.  She believes he's waking due to his brain forgetting to tell his body to breathe - central sleep apnea.  Oxygen should help this from happening. 

She examined Trace next - just the ordinary stuff - heart, lungs, ears, nose & throat.  He was much calmer then and happy to get out of his stroller.  He showed her where to put her stethoscope (several times) - he loves the stethoscope!!  Next was ears, nose and throat.  He's been fighting a cold since last Monday, so nose was runny, ears didn't look so good and throat who knows.  He didn't want to open up and we didn't want to upset him.   

All of this lack of sleep is really not good for Trace's brain development.  Trace already has problems with his brain function - seizures/epilepsy and developmental delay.  We don't need anything extra hindering his brain development.  I'm really hoping the O2 helps him.  His first night on oxygen/melatonin he fell asleep in 30 minutes, woke up 6 times, and desatted only a few times.  Last night he feel asleep in 30 minutes, woke up 4 times and desatted only once.  Please pray it keeps getting better and better! 

Trace had a big seizure yesterday evening while we were playing on the floor.  It's been a long time since he's had a seizure of that severity.  I'm hoping it was caused by this continuous cold and nothing else. 

We will be walking for Trace this Saturday, February 4th at the Energy For Life Walk: Houston.  Please consider joining or making a donation to Team Not Without A Trace.  Thanks to all who have supported us by joining, donating, raising funds/awareness and attending our fundriaser!!  The Team Hudson / Team Not Without A Trace Fundraiser benefiting the United Mitochondrial Disease Foundation was a huge success!  It was so amazing - we raised $28,000!!!  This money will fund much needed research to help find a treatment and eventually a cure for Mitochondrial Disease.  Thanks again for all your support!!

Hope, Love, Courage &Faith,

Laurie

The Brave Little Soul

I found The Brave Little Soul posted by the mother of a child suffering with mitochondrial disease.  I found it moving and wanted to share with everyone.  In a post from October 2011, titled One Year, I wrote:  God chose us to be his parents and for that we are most blessed.  He is here for a purpose for which only God knows.  One day God will reveal his plan for Trace and it will be great.  So you will see my appreciation of the following.

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

He unlocks the love in every persons heart he touches

Hope, Love, Courage &Faith,

Laurie

The Plan Worked

Trace, Mom and I had a busy day yesterday.  Trace had two therapy sessions, we stopped by CMHH to donate toys to Child Life and then on to Dr. P to receive the flu shot.  Sounds easy right?  Only a few small ups and downs on our little roller coaster we call Life.

First occupational therapy.  Quick history - Trace didn't receive any therapy the month of December.  Due to being in the hospital, doctor's appointments, and Christmas break.  After his OT session, I asked how he was doing.  Much to my surprise, I'm told Trace has regressed all the way back to when he started last summer.  He would need OT more than once a week to even try and get back to where he was.  If he could get back to that point.  Trace's muscles have very low tone and are very weak.  I was blown away.  What??  How could I have not noticed such a bad regression??  More than once a week is just not possible for us as this is very expensive private therapy which is an hour drive one way.  Trace has always had very weak/low tone in his muscles - thanks a lot Mito!  I feel like she is just giving up on my baby.  I wanted to cry and almost did.  You never want to hear your child will not be able to succeed at something.  Our family works very hard to give Trace the most out of life, one in which he can thrive, one with the least suffering and most importantly the most love.  I'm still angry about all this and will take some time before I try to resolve all this with his OT.  Thank goodness I was able to retract my claws yesterday and keep my composure.  I don't think she quite understood how hard that was for me to achieve :-)

Second speech therapy.  This went really good!  Trace's speech has been developing well, with NO regression, Yeah!!  Still can't pronounce some letters, but we're making progress, and that's all that matters to me.  HaHa Mito - we're beating you at this one right now!

Third Child Life donation.  After Mom and I discussed the awful OT visit and how we WILL fix it, we arrived at CMHH.  It felt really good to give this donation to Child Life, especially after the blow from therapy.  The Child Life staff at CMHH are amazing people.  They do really great things to make sure the kids who are inpatient have the best stay possible.  They are also there to help the parents and other family members cope with everything.  We really appreciate everything they do for us when we are there with Trace.  Now there will be quite a few more toys to play with because of Trace! 

Fourth the dreaded flu shot.  After much deliberation, and a few doctors insistance, I decided to give Trace the flu shot.  His neurologist/epileptologist and I discussed a new "plan" to try and relieve Trace of the high fever and seizures he experiences after receiving a vaccination.  I'm happy to report the plan worked!  I won't lie, I was very skeptical.  Dr. P, his immunologist, came in before the nurse administered the shot to give me a hug for support - not sure who needed it more - her or myself :-)  Dr. P left and I dosed Trace up with extra Klonopin and Advil.  Poor little guy saw the needle on the table and freaked.  I always try to make sure he doesn't see what's actually going on, although he's smart and figures out real quick it's not good.  So after the nurse, Mom and I held him down, it was done.  Weak muscles huh???  Only a few tears shed from my little Mister, he always has amazing strength.  Then the 1 hour wait began to see if a reaction would happen.  Trace acted like a crazy person for the entire hour.  Advil always makes him a little wound up and crazy.  It relaxes most people, but Trace isn't like most, he's Trace.  Dr. P came back in to check on him and sent us on our way, hugging me one more time while laughing and telling me not to call her if things get bad and Trace had to go to the ER.  I of course told her she would be the first phone call and we laughed and went on our way.  Trace finally fell asleep after stopping to get some french fries on the way home.  He loves french fries!  Not exactly a super food, but Trace seems to think so.  We arrived back home at 5:00.  What a long day!  Later that evening, I gave Trace his meds and nervously went to rock him to sleep.  His seizures are always worse when falling asleep.  No big seizures though - whew!  Just my little boy flailing around like a crazy person again after another dose of Advil.  He didn't sleep much, but I'll take no sleep at home over no sleep inpatient any day. 

A highlight of our day. We were able to visit another mito family while at the clinic who we rarely get a chance to see.  It was really nice and they have the sweetest kiddos ever!  You know the kind - the ones who at first sight you just want to wrap your arms around and hug.  One of their children is going through a tough time right now.  Please pray for her and her family.  They are one amazing family and I'm blessed to know them!  Thanks again Mito - without you we would probably have never met some of the most special people in the world.

Hope, Love, Courage &Faith,

Laurie