Father's Day

Everyone has a different definition of a hero.  For some they may be professional athletes or individuals who save or protect lives.  I must admit through my life not only have my heroes changed but my definition of a hero has changed more than once but always seems to be more refined and well thought out as I grow older.  One consistent hero has been Dad.  Like most boys I saw my Dad as Zeus; strong, wise and ever present.  My Dad was also a career police officer which doesn't hurt in the hero category.  He passed several years ago at too young of an age and I still miss him.  I can honestly say that he still helps me face my daily challenges.  My memory of him and the time we spent together plays a role in who I am today and how I cope with all the modern challenges that men and fathers face.

Today, a new hero has refined my definition of hero even further.  My hero has never had anything easy.  From day one he has struggled, fought and battled his way to another day. Faced with more than I have ever faced or even imagined possible for another human being he continues to be an angel amidst an environment not meant for the weak.  He brings light where there is darkness, hope where there could be hopelessness, patience where there is not enough time, peace where there is chaos, and more love where I thought love was full.  My hero fights for his every breath and every movement.  To him what we all take for granted is like climbing Mt. Everest every minute of every day.  I thank God every day for placing this hero in my life. He is my son and he is my hero.  

Jake

Home Sweet Home!

I made it home just in time to watch Garrett's 1st swim meet for the summer...in his heats he placed 1st in team medley relay, 1st in the backstroke, 4th in butterfly, 2nd in the individual medley, and 1st in the freestyle relay...we will find out the final results this week when he gets his ribbons...He is quit the swimmer...and eating us out of house and home...we tease him about being on the Michael Phelps diet!  We are so proud of him!

We just tucked Nicolas in...gave him all his meds (all 12 of them now that we acquired some new ones), mixed his NEW formula, and hooked him up to the pump...For the next week he will be on pump feeds 24 hours a day...This gives him a slow and small amount all day long...once we get through the next 7 days and feel that he is tolerating the new formula than we we try some bolus feeds (with the big syringe) during the day and continue pump feeds at night... I don't think they will completely wean us off the pump because they want to see him grow and hopefully at night he won't burn as many calories.  We'll see!

We scheduled many follow up visits...to many to write about tonight...so I'll let you know about them the closer they get...Before leaving Riley we did pick out his new wheel chair, a big boy bed, positional pillows, and a bath chair!  Once they get approval from our insurance company, they will place the order!  So exciting! 

We are tired...but so glad to be home...tucked into our own beds...the whole family together again!

Good night...

Love to all!

Felisa

Meet Nicolas' Respiratory Therapist!

Nicolas just finished a breathing and Percussion treatment with his Respiratory Therapist...so I thought I'd give you an update!

According to Nicolas' growth chart he has stopped growing over the last couple months...so they changed his formula to one that is completely broken down and ready for digestion...this might allow him to absorb more calories and help him to grow.  They also added an amino acid supplement and they are going to draw blood in the morning for more genetic testing.  We started a new medication aimed to rid the episodes that look like seizures (but aren't)...cross your fingers...say your prayers!  We will not be pulling any teeth this week...we need to schedule a visit with the dentist at the clinic 1st, then we'll discuss a plan.  As far as Nicolas and his scoliosis...we have to schedule a visit with Orthopaedics at the clinic once we are discharged ...and we are still trying to get the equipment specialists up here to fit Nicolas for his wheel chair and other positional tools...but there is still plenty of time for that.  On Thursday they are planning to do a skin biopsy for Mitochondrial testing...so I feel that we will know more about when we will be discharged on Friday.  In the morning we plan to request another sleep study for Nicolas...I'll tell you more about that later!

It's late...I'm going to turn on my ipod, take some Advil and try and get comfortable in my chair/bed.

Love to all!

Felisa

Reinventing the Wheel...

Today we planned to drive to Indy for Nicolas' 2 scheduled Riley visits...but Nicolas had other plans...instead we drove down Sunday night...checked into the ER and was admitted to the hospital around 3:30 a.m.  Yesterday, when we would burp Nicolas through his g-tube, he was pushing back incredible amounts of fluids...Typically when we burp him, we hear air come out and see some fluid (which would be the equivalent of spit up)...But by 7 p.m. he "burped" back 14 ounces of bright yellow fluid when his stomach should have been empty and ready for a feed.  We called Riley and they suggested we go to the ER...So here we are!  Last night they started an IV (successful after 6 tries), ran blood work, took a urine sample, and did x-rays...We have found out that there is no blockage (great news) but his white blood cell count is pretty high and he had a fever of 104...so he is obviously fighting something...but we don't know what yet...the blood and urine cultures have not come back yet...we'll know the results in 48 hours.  During the x-rays we did see a clear picture of his spine and it is evident that scoliosis is setting in...that has drawn the attention of Riley's Physical Therapist and Occupational Therapist...together they are planning to fit him for a wheel chair during our stay!  Today was a big day!  Our doctors are rallying their troops and once again working together for a common goal...How do we make Nicolas more comfortable!?!  We found out that what we thought were seizures do in fact LOOK like seizures (Doctors even thought so) but the EEG has proved that they are NOT!  Apparently the Video EEG was particularly difficult for the Neurologist to read!  So all of our doctors are working on figuring out what is causing the coughing, extra secretions, tongue biting, etc.  We are possibly changing his formula, meds, running more tests...discussing many options that will help Nicolas be more comfortable while possibly avoiding a trach...So here we are...reinventing the wheel!  The doctors feel that we will be here for the next 4 to 5 days.  We are very hopeful and excited about the attention he is getting...our doctors seem focused and determined!  Please pray for them!

Jake is here with me but will probably go home tomorrow.  We are in a shared room...which seems small and crowded but our roommate seems very nice.  Her beautiful 14-day old daughter is being checked for reflux and monitored for apnea issues...I'm sure they would appreciate your prayers as well!

Right now Nicolas is sleeping very peacefully in a cool blue Tumble-form chair...It is a positional chair we are trying out...if we like it we'll probably get one for home.  Here is a picture!  I'll try to update you as much as possible!

Have a great week!

Much Love,

Felisa

Meet Grace Marie Leman!

Born June 9th

8lbs 6oz

She was constantly sticking out her tongue and making sucking sounds!

She loves sucking her hands and thumb already!

She seemed to be smiling in many pictures!

She is happy and peaceful and full of grace!

Isn't she lovely!?!

Welcome to the world Grace!

We love you!

Uncle Jake, Aunt Felisa, Cousins Garrett and Nicolas

Recent Riley Visits...

Two weeks ago Nicolas' Pulmonologist wanted to do a Bronchoscopy...His airways are collapsing due to his floppy muscles and lack of coordination of the throat...so she wanted to know where the collapse is occurring...we traveled to Riley and found that his epiglottis is collapsing as well as his throat just above the epiglottis.  There isn't anything we can do to fix this however at this time he is only having two collapses an hour and they don't last very long...The doctors feel that the oxygen is enough at this time but a trach is in the near future.  I get nervous about the trach because it is a little out of my comfort zone but I've been informed that if he does get a trach, they will train us and won't let us go home until we feel comfortable...I just wish we didn't have to keep adding equipment...that some how Nicolas just maintains or gradually gets stronger and that there is no need for the oxygen machine or suction machine that we haul with us everywhere.  During last weeks visit, we were admitted because Nicolas woke up the day before struggling to breath and had a temp. of 103.7... They took an x-ray and found that he had a little fluid in his lungs but no sign of pneumonia...His lungs are inflamed due to chronic aspiration of his secretions...this is causing asthmatic symptoms...so we now have to give breathing treatments everyday (not just when he is sick)...several doctors had mixed feelings about whether or not Nicolas is regressing due to his current oxygen needs.  And although I've always known that Nicolas may not be with us for very long...It cuts like a knife like the first time every time...It's hard to put into words how difficult it is to think that something so beautiful and precious could be slipping from your fingertips...  The common phrase is none of us know when our last day will be...and live each day as if it was your last...but to look at your child and wonder will tonight be the night...tomorrow...maybe during a car ride somewhere...will I be there when he takes his last breath....will it be at home or at the hospital...will we all be together or will I have to call Jake...pick up Garrett...will he suffer or go peacefully...  These thoughts plague my mind at times...and I wish they wouldn't... Everyday we are faced with a reality that is unfathomable even though always possible with any one of us.  Needless to say, we still need your prayers.

Nicolas also had a 24 hour Video EEG while there.  We do not have the results yet but I'll let you know as soon as we do...While there we did have a special visitor!  Coach Tony Dungy came to visit little Nicolas!  I was so excited and then he asked me to tell him about Nicolas...Well...I couldn't tell him without crying...but he was wonderful...he too has a son with special needs and knows about the worries that surround caring for and protecting your beautiful child.  I appreciated his patience as I was a little scattered in my thoughts...its amazing how much light surrounds a person and that there presence can be uplifting to others during difficult times...I don't mean that from a "NFL Superbowl Champ" perspective (even though thats pretty cool)  but from his faith that has endured and (I'm certain) strengthened throughout struggles and hard times he and his family have had to go through.  I appreciated the visit deeply.  Of all the things Nicolas might not be able to do in life...he did get to sit and visit with someone famous!  

Here is a photo taken during his visit with Tony Dungy.

Nicolas also got his autograph that read...

To Nicolas 

God Bless to a special kid!