Daddy's coming home earlier today

We are so excited that Nick & Uncle JImmy are coming home earlier than expected today!!  We miss them all & know that they have some good info to pass along to us after their meeting. Monkey had his first seizure of the day today but went almost 12 hours without having 1 at all.  Let's hope there isn't anymore today (:  We're just about to eat breakfast so I should be going.  Milk for monkey & some scrambled egg whites for mommy..xoxoxoxo Jenn & Monkey

The results have come back & there is evidence of seizure activity on the EEG.  Not sure we necessarily needed another EEG to determine that because the medications are a trial & error no matter what type/s he is having.  The new medication is not working as we had hoped so they have prescribed a 3rd anti-seizure medicine that we are going to try in another few days.  In the meantime, the doctor has increased his 2 other medications now that monkey is a whopping 14lbs & his built up a tolerance for his medicines. For a child who was on the low end of the curve has definitely beefed up since leaving U of M., that makes mommy & daddy so happy... The therapists have suggested a specific type of seat that may help monkey with his head control but we haven't seen that just yet.

Daddy & Uncle Jimmy are gone this weekend to meet a doctor who is doing some clinical trials with gene therapy, hopefully this could be an option for our son.  Monkey & Mommy miss daddy & can't wait to see him tomorrow.  xoxoxoxo jenn & monky

A New Day

EEG results pending, hopefully by Friday we will know more than we do now.  I don't claim to be a neurologist but I can tell you that from observation alone, the medications the doctors have my son on are not doing the job!! Though his seizures have been minimized to 1-2/day, they are still happening.  Each time a seizure occurs, we are on baited breath hoping that he can persevere through!! Thank God & the angels above, he has!!! I have also noticed that when 1 type of seizure is controlled, another one pops up that wasn't present before.   I've also learned, from other mothers who have children who are afflicted with seizures(and some at 100x/day), is that there isn't always a medicine to prevent the activity.  What baffles me most, is that there is so little known about the human brain & the central nervous system. This vital organ controls everything we do, why is it that we know so little about it? 

Monkey has had some really great days!! He has been doing well with his PT & OT!! Today he was being so sassy to Lisa, it was actually quite comical!!  She was doing a stretch with his arms today & he was babbling away (almost growling at her)  When she would stop, he would let out a huge sigh as if he were saying, I'm over this lady can't you see I'm tired?!?  Our therapists have such an amazing bond with our son, as well as the nurses who help us care for him, Kris & Kim.  I tell you what, the Pallative/Hospice Team @ St John's are truly amazing (:

 In such a short period of time, our lives have changed so drastically but yet so much remains the same.  It's funny how life can change so quickly.  To be given this path, I know that there is a reason for it!!  As much as I wish it wasn't my first born angel having to experience this, I believe in my heart that we WILL be the ones that help other children out who are afflicted with the same disease.  Our son is such an amazing soul & gift from God, I tell you that much I know for certain!!!

If you know me,  it's rare that I'm at a loss for words or have difficulties speaking my mind. Since 8/1 & through this 7 week journey, I find what once came so easy for me is now so challenging.  So many have reached out to us & those who have specifically reached out to me, I want to THANK YOU & also let you know that I find so much strength from your words of encouragement & my heart fills with warmth!!  I haven't been good at keeping up with calls/emails but I hope you can understand why.  God has blessed me & my family in so many ways & I'm heading to bed right now to thank him again for those blessings!!  

With all of our love, we thank you for helping us spread the word & fight for our son!!  xoxoxo The Torpey Family

Go Lions!!

Today was a good day for the most part.  Only 1 seizure @ 1215 & hopefully no more.  Medication seems to be helping but we'll know the best option after my EEG tomorrow.  Grandma & Grandpa Ruhana are taking me there so Mommy & Daddy can go to work. 

Before Daddy left for the Lion's game today, Uncle Jimmy stopped by & Daddy dressed me up in his favorite lion's gear.  Too bad they didn't win today ):  While Daddy was gone, Mommy read me 2 books, did some PT work, dressed me up in my new Halloween Costume (which I must admit looks pretty darn cute on me!!).  We also went for a walk around the block but then it was time for us to come home & eat my mid-afternoon snack.  I had fun today but missed my daddy dearly ):  

My mommy says that our fundraiser event is coming along very well, I wish I could be there to see everyone.  I can't believe all of the love & prayers that are given to my whole family.  Mommy & Daddy weren't lying when they said we were blessed to have so much love & support throughout our journey.

My dad's friend, Brent, took the time to put this website together for my family.  It's so beautiful, isn't it?!?! Thank you Brent for your hard work, time & love!! I cannot thank you enough for what you've done!!!  xoxoxo Nicholas aka Monkey, Nicky, Neeko, Bunky, LoveBug, Pumkin, Puddin

Sept 19

Today is a new day, and we are cautiously optimistic that Nicky's new medication is helping with the seizures!  There is a drastic improvement.  Please pray that our Son will continue to have relief from these terrible seizures.    

Our home nurse, Kris, went out of her way yesterday to obtain the new medication.  I can tell that she truly cares about what is best for our Son, and I want to thank Kris for helping him experience a good night's sleep for the first time in over a week.  Kris, from the bottom of my heart, thank you for caring, and thank you for helping our Son.  

We are quickly learning that we must take one day at a time.  Every day is a new battle, and every day we must fight for our Son.  Today, I hope to continue celebrating this one small victory, and see my Son have a peaceful day.  We will relax, and watch football, and enjoy the comfort of family.  My Son and I, we will pretend that everything is fine today.  Tonight, we will prepare to fight again!  My boy is resilient.  He is a Torpey, and he is strong!

Love, Dad

Our Battle

The last few days have been somewhat of a blur for our family, the overwhelming support from our loved ones & complete strangers, little sleep & lots of activity for our sweet lil monkey.  The new seizures that Nick has been experiencing are multiplying & keeping him sedated for most of the day which usually keeps him up at nite. The doctor has increased his phenobarbital but it doesn't appear to be working on this type of seizure.  So the started him on another today. Keeping our fingers crossed this is the solution. The most we have seen in one day has been 5 but that is 5 too many, in our opinion.  On Monday, Nick will be hooked up to another EEG but this time he  gets to come home.  We'll be able to record the seizure activity in hopes that when they take it off on Tuesday morning, they'll be able to identify what type of seizures these new ones are & what is best to treat them.  

Our goal is to get him off this medicine but find a way to control the seizures. The homeopathic remedies we've tried aren't working either but I have not given up on that approach just yet..With each seizure, he is fighting for his life & exerting so much energy (which we are trying to contain so he can be as strong as he can)...

One thing is for certain, we will not put the limitations on him that the dr's say will never be. They say, he'll never crawl, walk, talk but we won't allow that to be true...We are willing to fight with every bone in our body to prove them wrong & to give our son the life he deserves to have..

 I think this quote helps me out especially on days when I feel defeated.."Letting go, embracing the here and now, loving, breathing, and worshiping the gift of now, helps me more than holding on to some days in the future that may or may not be as I expect them to be anyway." -Dr. Rick Benedict

Sept 15th

Nicky has been plagued with seizure activity since our stay at U of M.  As a result, the doctors prescribed him phenobarbital 2x/day through his feeding tube.  Seizures became manageable after that point & the dosage was lowered.  Within 3 days of lowering, the same apnic seizures came back.  Actually 15 in less than 45 minutes.  These types of seizures stop our son from breathing & makes it harder for him to return to his baseline afterwards.  The docs made a decision to higher the dose & we had been seizure free for almost 2 weeks.  On 9/9, we started to witness a different type of seizure that some call rhythmic seizures which are associated to grunting & arm extension but thankfully he has the ability to breathe.  On 9/13, we began seeing more than 1 of these types of seizures daily & began to worry about his blood levels (this is tested to see if the anti-seizure medication is at an acceptable level to control the seizures).  His levels were not where they needed to be however the Neurologists believe Phenobarbital is helping with the apnic seizures & he may need another anti-seizure medicine to control the new seizures we've been seeing.  He has experienced 4 seizures again today & just recently, we had to administer Valium to get them to stop.

As most of you can imagine, this is such an emotional roller coaster for our entire family. Words cannot describe the hurt all of us feel when we see our sweet little baby boy experience so much pain & there is little to do to take it away.  If I could take this away from my son, I would without hesitation!!!   I know I have the strength to weather this storm but there are moments where I just can't find the emotional energy to stand strong & today is one of those days for me.

I'm finding these blogs help me to share my son's story, keep those updated on his condition But it also provides me with a medium to release the emotions that are running amuck inside of me.  Thank you for letting me share this experience with each of you...xoxo Jenn

Our Fight

On February 21st, 2009 the most beautiful gift was given to us, our son, Nicholas James.  He was born a healthy, happy, 7lb 8oz bundle of joy.  With each day that passed, our hearts continued to grow with this immense love that we never knew existed prior to having our son.

On Saturday, August 1st our son was rushed to the hospital because of Respiratory Distress. Shortly after being admitted to the ER, he was intubated where he remained as such for 6 very long & emotional days.  By day 3 of his hospital stay & several tests, our doctors had advised we be transferred over to U of M Children's Hospital to have further tests run.  Our entire family made the 1 hour trek to U of M for the next 10 days to support the 3 of us as we continued down this journey.  Their love, support & prayers gave us the strength we needed to fight for our son.

Shortly before our discharge, my son was diagnosed with an extremely rare Mitochondrial Disorder, called Leigh's Disease.  Unfortunately, this horrific disease has no cure & is considered to be terminal.  While this news devastated our entire family, we continue to pray for a miracle & the strength to persevere.  It's our hope that we uncover every rock there is to find a way to bring our beautiful & happy baby boy back to us!!!