Road Trip to Minnesota

This past weekend Garrett, Nicolas and I traveled to Minnesota along with Kimra, her children, and Mema (my mom) and Papa. We went to Duluth to visit with family and for the funeral of Steve Wark. He is my cousin and was 58 years old. He died of cancer within 2 months of being diagnosed. I have very fond memories of time spent with him and his family...Christmas and dinner at Perkins....and camping in our backyard...to name a few... But what I want to tell you is Steve was good person, a good husband and father, and he led an amazing faith driven life...and though that may not mean much to those that don't know him...This weekend I witnessed the most inspiring funeral I have ever been to...We laughed, we cried, it was uplifting and inspiring...During the sermon, the preacher had asked us to close our eyes and if we never had before prayed the following prayer (paraphrased) to feel free to join in...it went something like...

Jesus is the son of God. He is my Savior...The truth. The light. The way. He saved me from my sins so that I may live with him in Heaven forever!

Well, I had Nicolas' hands folded together and I prayed this prayer for me and for him...and as tears fell from my face I knew I wasn't the only one praying. The pastor asked for those who prayed to raise their hands so that he may pray for them... Well, Garrett at first was timid and slowly raised it inch by inch until charged and confident his arm burst into the air! His cousin Jack hugged him immediately! My sister saw this, as she was sitting next to them, and cried. Later he said, "Mom, I want to go to Heaven." and as we talked about this he asked, "Am I going to get baptized?" So I told him what that meant and that it was his decision to make. And he said, "I want to be baptized!" I'm filled with an unspeakable sense of pride and joy. I plan to start making arrangements for this and to have Nicolas dedicated as well.

As we celebrate Thanksgiving and head into the Christmas holiday I want to focus even more intently on what we are truly celebrating and what the birth of the precious baby Jesus has meant for my life, my family, my friends and for everyone who truly believes. Thank you God for the many gifts you have given me but most importantly...thank you for sending your son!

Happy Thanksgiving,

Felisa

Here are some photos from our trip!

Why do kids make everything look so easy?

OK...so here's the scoop....When your 11-year asks you..."Mom, do you want to try my Razor Powerwing Scooter"... Say, "NO...they're DEATH TRAPS"...One minute you're doing a 360 and the next your parallel with the ground! I have no broken bones (Xray proven)...Other than feeling like I was hit by a Mac truck...Oh and feeling like an idiot...I think my 1st question to Garrett was "Did anyone else see that?" His response, "Are you crying?" I said "No" like an annoyed 10 year old! Anyways...I only have a few scrapes on my elbow and a couple bruises. Sure sign that I'm not as young as I once was! Remember when stuff like that was fun...and we couldn't wait to do it again? Or sleeping on the ground and waking refreshed? Gone are those days...

Tonight I am icing Garrett's birthday cake! He turned 11 on November 2nd and tomorrow we are having a party with friends and family. We are going to my school and playing basketball! I told Garrett if I miss my shots it is only because I got hurt on his scooter...but if anyone who reads this actually watched me play in high school...well they would know...missing shots was part of my game! So here's hoping it helps my game! HA! I'll post pictures soon!

11...my they grow up fast!

Love Always,

Felisa

Happy Halloween!

During the past month....

Well...what can I say, being back to work has made life a little busier!

Sorry for not blogging in a while but I try to get you up to speed without

taking up to much time in your day!

First off...I'm enjoying work. It does make my days seem very busy but

they go by fast. I'm still trying to get my routine down...and some days

are better than others...My school kids are very good-hearted and

very active...I picked the theme "Wild about Pre-K" and found it was

very fitting for the group...On picture day I wore a tan shirt dress that

I love but after further evaluation it looked more like a zoo keeper

uniform...again very fitting for the group! It is going to be a challenging

yet highly rewarding year...I look forward to it!

As for Garrett...He started his 1st year in full tackle football. His season

is almost over and it has been a little rough this year. His team is newer

to the division so they are still learning the basics...and the other

teams are well on their way...They haven't won a game yet...but it's now

tournament time...So let's root for the underdogs! Papa took us all to a

Colt's game recently and G really enjoyed that! Gone are the days where

we have to entertain him and make many trips around the

stadium! He watched the whole game! And loved every minute!

You can see he is really into football! As for school...he is doing

well. Parent/teacher conferences are coming up and they are student

led. I look forward to hearing how well he feels he is doing!

His school pictures took place the Monday after Labor

Day weekend...We didn't have time to get him to the

barber...so you'll see below a picture of the 1st time

I gave him a haircut!!! In the end...two hours later...it looked

pretty good... But should you try this at home... never say

things like....

"I have absolutely no business cutting your hair"

"oh, no!"

"Crap! Hold still!"

It just makes them nervous!

Jake is business as usual. He has been traveling a bit more recently but

that comes and goes. Garrett, Nicolas, Ella, Miles and I have used them

as an opportunity to have a sleepover at Mema's! This weekend Jake

and I had a nice time together. Friday shopping...Saturday was dinner

and a Movie...Sunday was clean house day! One of the things I

appreciate most about our relationship is, it doesn't matter what we

do...we always have a great time! Thanks Grandma Peggy for letting us

get out of the house this weekend! We know Nico loves his time with

you!

And then there is Nico...Sweet little Nico! Please check out the picture

of him smiling below...we see this time to time...but today, while

looking at this picture, tears filled my eyes...It is such a blessing to see

him comfortable...and to affirm it with a smile...He is truly a gift

from God!

As for his health...We are back into the flu season....so we are back on

full alert. He will get a flu shot this year, Synagis shots once a month

and the first series to the H1N1 shot to help us protect him against

illness! Since I've started school, we've had a couple run-ins with a fever

with Nicolas...and Garrett spent 3 days at home last week with a fever

...and I had a sore throat...but Nico's a tough little guys and he made

it through without a trip to the doctor's office! We've had a few trips

to Riley recently...Neurology, Peds Dentist and Pulmonology...they all

went well...Neurology did one more genetic test...but this will be the

last until the muscle biopsy... Now that Nicolas has been feeling so

comfortable and doing so well we won't have to go to Riley every month...

Most are scheduling us anywhere from 3 to 6 months out. If anything

changes we can always call and they will get us in sooner. Next week

we travel down to Riley again to see the Developmental Peds team...

and after that Nico has a Sleep Study mid November to see how he is

doing on oxygen.

In September Jake watched Nicolas while Garrett and I went apple

picking with family. The plan is that next weekend we will go to

South Bend (on Saturday) to visit with family...Lemans, Browers,

Meyers, and Dunbars...while the men watch the USC/Notre Dame

game...the women and children are going to make

applesauce with the apples we picked! yum!

Many of you may not know this but we put our house on the market.

We decided we needed to plan ahead and make a home that is more

"Nicolas friendly." We recently purchased a lot 3 miles away from our

current location. There is no rush to build but these are difficult days

to sell a home and we've had very little traffic. Please pray for the right

family to fall in love with our home as we have. We truly love it and

know we'll miss it...after all Jake did propose to me in the back yard!

Our home is listed on-line, if you know of anyone interested in a villa

...please send them this way!

Well that's all! Have a great week! And I'll try to write again soon!

Much Love,

Felisa

Back to school for me!

Many of you may not know but I decided to go back to work.  I am a pre-k teacher for Fort Wayne Community Schools...I was on what FWCS calls "Child-Rearing Leave."  I had until February of 2010 to go back or I would loose my position.  I feel that going back in the fall and starting fresh with the children is better then starting half way through the year...Not to mention a job is a pretty valuable thing to have these days!  So...I'm back in the same building and in my classroom.  The only difference...full time is not an option for me.  Meeting Nicolas' many needs is not something I am capable of doing while working full time.  SO thank you to my school corporation who approved a "job share".  There is a wonderful sub taking the afternoon class who will also fill in for me when I need a sub for days when Nicolas is sick or has appointments at Riley.  My incredible assistant is also coming back again this year!  I love her and am thrilled to work with her again!  With all this being said...Anxiety is kicking in with sleepless nights...and I'm trying to establish a routine to so that it's not so stressful for me...but here I am with a glass of wine, Advil and a heat pack for my tight muscles...I'm only 3 days into this and the only thing that brought a smile to my face is Garrett saying..."Mom, maybe you shouldn't go back to work yet"....Oh how I love him...I'm not giving up yet...Although, I feel this important to say,  I do not view the possibility of this not working out due to "giving up." I went into this saying, "I'd rather try, then never know"...And if being home with Nicolas full time is God's Plan...I'm glad to serve!  But for now...My Mom and Jake's Mom will watch Nicolas (with a great many volunteers waiting and wanting to help...you know who you are and we couldn't do it without you...Love you)...I leave for work at 7:30 and am home by 12.  I barely feel like I've left!  So wish me luck, say a prayer, and continue to read our blog...I'm sure I'll have fun things to share.

Much Love to all!

Felisa

Pictures of the First Day of School!

First Day of School!

I can't believe it is that time already!  He is in the 5th grade this 

year...his LAST year in elementary!  He is excited about going

 back!  "Mom, I get to sit in the back of the bus this year!" As the bus 

drove away I watched as he high-fived a friend before sitting down.  

It's going to be a good year...He even got the teacher he wanted (Mrs. DelPriore...they call her Mrs. Del).  Added to his morning 

routine is walking the dogs...so 

he wakes up at 6 am! While waiting for the bus, Miles tried to 

explain to Ella that you bark at the bus...but she decided that 

it was much to scary and hid in the garage behind the broom!  

Well, the house is always different without him...I've found myself 

wishing he were here!  Every once in awhile I tell Garrett about the

 phrase "Carpe diem"...but I add a little to it..."As God as my guide, I will 

seize the day!"  

So...It won't be long til Garrett gets home...the bus arrives at 2:55!  

I think we'll head to the pool for a little bit!

Welcome to the Family!

Meet our newest addition...

Ella

She is a Cockapoo just like Miles, however she will only weigh somewhere between 5-10 pounds.  She is very sweet...follows us everywhere...and loves attention.  Miles is a little unsure of what to do with her...and not quite ready to play with her...but she keeps trying!

Nico's 1st Family Vacation!

These are just a few photos taken from our trip to Michigan.  

We rented a lake home with my sister Kimra and her Husband 

Tim and 3 adorable children (Jack, Will and Grace). I'm sure 

she has posted some pictures too!  We had an incredible time and 

hope to do it all over again next year!

Love to all, 

The Stein Family

Slow start to our 4th!

Bath time can be so exhausting!

Daddy went golfing with Papa Randy early this morning, so we took our time getting up!  After they finish they will meet up with the rest of us!  We are looking forward to a fun day with Garrett, Mema Marilyn, Uncle Tim, Aunt Kimmy and cousins Will, Jack, and Grace! 

Rest up dear Nicolas!

Happy 4th of July!

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!

Garrett's 1st Triathlon

Garrett participated in Northwest Allen County Schools Triathlon today!  He had to swim 4 lengths of the pool, bike 3 miles and run 3/4 of a mile!  It was cold, windy and rainy!  Perfect weather for any triathlon!  It didn't seem to bother Garrett any...he truly enjoyed it!

We are so proud of you Garrett!  Great job!

We love you!

You may need to pause the music on              

the music player to hear this video!               

The best THINGS that ever happened to me!

This mother's day I want to take the time to tell you about the best THINGS that ever happened to me.  The men in my life never cease to amaze me and this weekend I want to tell you about them.  

Garrett being the first to bless my life taught me how wonderful life can be by putting someone else's needs above my own...how amazing it is to give so freely without a second thought...that blessings come in many shapes and sizes when you least expect it!  Garrett's easy way about him, his ability to be flexible, the way he can make any situation entertaining, his gentle yet protective nature, how sensitive and caring he can be, and how important honesty is to him...inspires me to be a better person and Mom.  

Jake.  The love of my life...who loves ALL of me (faults and all)...taught me how love should feel when given and received...that no matter what love is there and will always be...It is a constant unbreakable bond that is untouchable...but yet tender and fragile.  What I feel for you exceeds anything imaginable!  Through many fruitless searches, I am complete! ...(I borrowed that)...  Your relationship with Garrett is beautiful...Garrett used to introduce you as his friend Jake...and that is still true today...you have always been so patient and kind to him...it is easy to see why he loves and respects you...Thank you for loving him.  You have been true to God's plan since the day you met Nicolas...never once have you said "why me, why us"...You just charged forward facing fatherhood head on...loving him...protecting him.  Your positive outlook and faith in me...fuels me with the strength and courage to face each day.  Jake you have brought joy and LAUGHTER and lightened my life in ways I can't even express...I couldn't imagine life without you.  I will continue to enjoy every step of the way with you by my side!

And then there is Nicolas.  Just when you think your heart is full...you find out FAST how to make room...My love for him is overwhelming!  He has made it clear that the mother in me will do anything and everything for her children.  Nicolas has taught me how precious life is...and to slow down...enjoy each moment...living life day to day!  Nicolas has taught me that within me lies a strength that I never knew I had...He has reaffirmed my faith in God and in His plan...as well as my faith in Garrett and Jake.  Without Nicolas I would have never learned the depth of their strength, tenderness, and love.   

God.  Thank you sending your son...whom you did not want to suffer...but died so that we may live!  Thank you...for rescuing me, taking me in, loving me, providing THIS life for me, and believing in me.  Your plan is perfect and complex...and I will live it each and everyday because you are there with me.  You have brought Garrett, Jake and Nicolas into my life and though I may not know the entire plan, You have shown me how perfectly we fit together.  I only hope to make you proud!

So...Here's to my men...who have taught me so much and made me who I am!  I love you.  Thank you for making me a mother and allowing me to experience a life so precious to call my own! 

Happy Mother's day!  

Love Always,

Felisa

P.S. Thanks Mommy for giving me life...I love you...you're my best friend...and you will always be the Queen of this Princess's heart!

Our ENT Visit

Yesterday we met with Dr. Reddy...which we thought was going to be a consultation prior to surgery...from what was said at Riley we were under the assumption that the obstruction was due to the tonsils and adenoids...Well, this appointment was for us to find out what exactly was causing the obstruction.  Dr. Reddy scoped Nicolas and said that his tonsils and adenoids are small and that his airways are open.  The obstruction is due to a Pharyngeal collapse (floppy airways).  This happens twice an hour.  He does not recommend any surgery to remove anything because that wouldn't rid Nicolas of an obstruction.  He will continue use of oxygen because at this time the oxygen is helping but if Nicolas continues to have a difficult time breathing, seems uncomfortable or gets worse he will need a trach.   A trach will remove the obstruction and his breathing will be quiet and less labored.  We would still have to suction secretions.   I'll let you know more about a trach once I learn more about it.

Due to what we now know, we have many questions for our doctors at Riley.  We meet with developmental peds at the end of May...hopefully they'll have some answers.  This is not what we expected to hear from the ENT...  Good news would have been "lets remove the tonsils and adenoids" ...this, we are not sure what to think... It's a new symptom and that has us extremely concerned...especially since his sleep study in August (6 months old) came back normal and our latest sleep study didn't.

Thank you for your continued support and prayers.  

We need them!

Felisa

A few Nicolas Updates...

We found out from Riley on Monday about the sleep study results.  Nicolas does have an obstruction that lasts about 18 seconds.  Dr. Kilani said that we now need to see an ENT to have his tonsils and adenoids removed.  We are hoping to see Dr. Reddy here in Fort Wayne but Dr. Kilani wants to make sure he feels comfortable working with Nicolas.  If he doesn't then the procedure will be done at Riley.  After the surgery Nicolas will stay in the PICU until he has recovered.  Swelling of the throat after this surgery can cause many difficulties for little Nicolas so they want to keep an eye on him.  At that time they will also begin weening him off the oxygen.  That is when we will start to have a better understanding about Nicolas and his need for oxygen.  

As for his teeth...

Last Monday Nicolas' other bottom tooth fell out.  This time it wasn't traumatic for him at all.  I think he probably loosened it when he lost his first tooth.  With the constant pressure being applied to the tooth from him clamping his jaw...it just worked its way out!  He didn't even cry.  Jake and I are actually relieved about the tooth because now he can't do any more damage to his poor little tongue.

Thank you for your continued love, support and prayers!

Much love,

Felisa 

Nicolas and What We Learned from Dr. Walsh

All our doctors at Riley have been wonderful but Dr. Walsh just might be my favorite.  He was very patient and listened to all our concerns and while being extremely compassionate answered the things we wanted to know but not necessarily hear.  Jake and I knew going into this meeting that at this point there isn't going to be a miracle drug and that the cause (if any) isn't going to bring all good news.  On Tuesday someone finally gave us some answers and while not definitive they give us a place to start.  We will continue to hope and dream for more.  

Dr. Walsh said that the longer we go without knowing the cause the more likely it is that we won't ever know...and at this he felt that there is a 20-30% chance of us knowing the cause.  On the plus side, he said that regardless...treatment wouldn't change.  So we know that we are doing everything we can for Nicolas.  Dr. Walsh feels that this is a genetic issue.  He ordered blood work to test 3 different genetic possibilities (none of which are degenerative).  The results will take 4-6 weeks to get back.  

As for Nicolas' development.  Dr. Walsh said statistically speaking Nicolas is not likely to walk or have full use of his arms...AND that he may develop some head control, social smiling, social sounds, and tracking.  Due to the severity of his delays along with the infantile spasms children similar to Nicolas have a 80-90% mortalilty rate by the age of 10.  Most of this is due to illness and their inability to fight it.

As for the muscle biopsy, he recommends that we wait until Nicolas is 2 years old.  Waiting until he is two allows them to get a better muscle sample.  Even though we wait, knowing whether he does or doesn't have a muscle disease wouldn't change his current treatment or their opinion of his possible outcomes.

What we asked for was statistics and thats what we got.  It is important for us to remember that this is not the final say for Nicolas...it gives us guidance for our prayers.  God is mighty and powerful and with us always.  Only time will tell what is in store for Nicolas.  BUT his life is precious and it will be wonderful.

We will hold him, kiss him, and tell him each and everyday just how precious he is...and thank God for this precious gift He has given us that has blessed us in so many ways.  Thank you for your support and prayers.  He does hear us and He knows our hearts!

As said in Gratitude by Nichole Nordeman....

Oh, the differences that often are between 

What we want and what we really need 

So grant us peace, Jesus, grant us peace 

Move our hearts to hear a single beat 

Between alibis and enemies tonight 

Or maybe not, not today 

Peace might be another world away 

And if that's the case . . . 

We'll give thanks to You 

With gratitude 

For lessons learned in how to trust in You 

That we are blessed beyond what we could ever dream 

In abundance or in need 

And if You never grant us peace 

But Jesus, would You please . . .

Riley Appointment Cancelled

Today we were supposed to go to Riley to see Dr. Kilani about our sleep study results, but they had to cancel it because they don't have the results yet.  They are going to try to fit us in sometime next week.  

Just wanted to let you know!

Thanks,

Felisa

The Tooth Fairy Came Early...

At 11:00 last night I took Nicolas back to bed and I noticed the tooth was practically out.  When I touched it with the end of the pacifier and it fell out.  I cried.  All day long I watched him go through so much pain that ended with him losing a tooth.  I just wanted the day to be over.  

This morning, at the Dentist, we found out that the rest of his teeth are fine, his tongue looks good and shows no sign of infection, and if this should happen again, we can call our new dentist any time and he will come in to help us so that Nicolas does not need to go through anything this traumatic again.  He did say his tongue is pretty beat up and if he continues to bite it than he will remove the other bottom tooth (in a much less painful way).  

Today was much better.  He is getting some much needed rest.  He is relaxed and comfortable.  

Thank Heaven!

Thursday night (4 p.m.) we leave for Indy for the sleep study.  I am going to my friend Renee's house for dinner before we go to the Clarion North location at 8 p.m. (...my friend Sara will be there too...)  They said Nicolas will be done between 5 and 6 in the morning...Jake is flying into Indy late Thursday night and has a meeting Friday morning with his boss.  So after Nicolas and I get cleaned up, we'll go pick Jake up and drive home together.  We won't have the results until Monday.

Please continue to pray for little Nicolas!

Much love,

Felisa

Nicolas' Poor Little Teeth...

Lately Nicolas has been clamping his jaw so tight that you can hear his teeth grind.  Today when he did it during therapy, we saw a little blood...so I pried his little lips apart to see if he was biting his tongue.  He wasn't but his top teeth cut into his gums in front of the lower teeth.  After that, it got worse.  He proceeded to get upset to where he has loosened a tooth on bottom.  One bottom tooth is hanging in front and the other in back of his top teeth.  Every time he gets upset he clamps down biting and cuts the area between his two bottom teeth.  We are trying to keeping a pacifier in his mouth to help prevent further injury.  I'm very heart broken and feel helpless...but I called Riley and they're trying to help us.  They have upped his Valium (to try and relax him), I am going to give him Tylenol, and we have an appointment tomorrow at 9:20 to see a Pediatric Dentist here in town.  If you have been following this you know he has ALWAYS clamped his jaw...nothing is getting in there!  We have constantly asked the Doctors what can we do to relax his jaw...and at this point they're are doing everything they can.  When he is older they can Botox the muscle...but not until he is 2!  So we keep waiting!  It is so frustrating...   I'll let you know what we find out tomorrow.  Please keep Nicolas in your prayers tonight...It is so heartbreaking to watch. 

My New Hand Splints!

Really cool, huh!?!

Pat-A-Cake, Pat-A-Cake, Baker's Man!

We're home...

After much debate by the doctors on Tuesday, we were sent home at 6:30 p.m.  Before being discharged they set Nicolas up with portable oxygen and the Respiratory Therapist trained me to pat his chest in certain areas to help break up the congestion.  Nicolas did fine on the way home and seems to be doing fine here at home.  If for any reason things seem worse we are to return to Riley.  Nicolas will stay on oxygen 24 hours a day for three weeks.  Then he has an appointment for an overnight sleep study at the Clarion North location.  That will tell us whether or not he still needs to be on oxygen and whether or not he needs his tonsils/adenoids taken out.  He might need them taken out because if he is floppy on the outside then he may be floppy on the inside and those may be obstructing his breathing.  We will find out the results at an appointment with the Pulmonologist on Monday following the sleep study. 

It is good to be home!

Love,

Felisa

Friday at Riley...

Well on Friday while we were visiting with our developmental Ped doctor she felt Nicolas' breathing seemed labored due to his congestion. After hooking him up to an oximeter (that measures the oxygen carried by the hemoglobin) we found out it was a little low. It should be between 98 and 100...He was dipping between 88 and 92. Our doctor felt we needed to go to the Riley emergency room for further investigation...i.e blood work, chest x-ray, urine test, throat culture, etc. Well the doctors there felt that we needed to stay overnight for observation and breathing treatments. Once checked into a private room. The doctors informed me that this is viral so we should stop giving the antibiotic and the steroid that was prescribed on Wednesday. He does not have RSV or pneumonia...but it is in his chest...and because Nicolas has difficulty moving it around (coughing, sneezing, swallowing) it could get worse. Colds (whether his immune system is good or not) are not going to be easy on Nicolas ever...and should not be overlooked. Since his oxygen was a little low they warned me that he may have to be put on oxygen...and if he does that would buy us another night at Riley. Well it wasn't 20 minutes after they said that and he was put on oxygen. So Garrett and Jake stayed home Friday...they went bowling and caught a movie (Mall Cop). My friend Sara came to visit and we ended up ordering Chinese together before she went home...On Saturday Jake and Garrett packed their bags and headed down to Indy to visit and stay the night. We played Monopoly, watched Kung Fu Panda, and had dinner before they went to the hotel to go swimming. They closed the pool down at 11 p.m. Then this morning they brought me breakfast and I went swimming with Garrett. This morning Nicolas was taken off oxygen but at 2:30 we found out we are going to stay another night. He had a few oxygen dips so they want to observe him longer off the oxygen to determine that when we go home tomorrow whether or not he will need oxygen at home. At 9 am tomorrow morning we will know if he does or doesn't...Riley will set that up for us. As for Jake and Garrett they just took off to try and catch the Big 10 Championship game...Garrett is pretty excited because Purdue is in it. Then they will be back in time for dinner with me...After that they will head home. Our nurses have been wonderful and we're hangin in there. Looking forward to going home tomorrow...but this hasn't been unbearable...We just want our little Nicolas to get better.

Love Always,

Felisa

More about our busy week...

Yesterday I took Nicolas into see Dr. O'Brien for an immunization and instead of getting one Nicolas walked out with an antibiotic and Prednisolon (steroid).  Nicolas always sounds congested but lately it has seemed worse and a couple of days ago we noticed that his secretions were starting to look yellowish.  So we asked Dr. O'Brien to take a look...and he did hear some fluid in his lungs.  Because of Nicolas' immune system and because he has difficultly moving that stuff around (i.e, coughing, sneezing, swallowing) Dr. O'Brien wanted to be aggressive with his treatment.  So we added a couple meds and breathing treatments every 4 hours.

Today at 2, Nicolas will be getting his cool new hand splints with resting pans.  I'll post a picture of them soon.  Later this evening Nicolas and I will be headed down to Indy AGAIN to spend the night at a hotel.  His first appointment is at 8:40 tomorrow and the last is at 11.  So I should be home before Garrett gets off the bus.

Nicolas seems to like staying at hotels...pretty comfortable...check out the picture!  It was taken during our stay on Monday.  Dad picked up PF Changs AND Cheesecake Factory...My man is SOOOOO good to me!  It was so yummy!  That night Nicolas was pretty congested so none of us slept very well....I think I woke up every two hours to suction his nose and throat.  The Dr. Walsh appointment went well.  We plan to make a post sometime next week with all the information from this weeks Riley visits...so watch for it.

Until then please keep us in your thoughts and prayers...especially little Nicolas...we hope he gets over this cold quickly!

Love always,

Felisa

This week...

Originally we were supposed to see Dr. Walsh on Friday the 13th, but due to a scheduling conflict they moved our appointment with him to Tuesday the 10th at 8 a.m.  Because this is so early Jake and I will head down to Indy Monday night.  We will be driving separate because Jake has an appointment early afternoon in Fort Wayne that he cannot miss...so he may need to head home without me if the appointment takes a while.   We are on a waiting list to get our other appointments on the 13th bumped up to Monday...but they're booked solid...SO if there is no cancellation it looks like we will head down to Riley again on Friday for the Developmental Peds and Opthamology appointments.  This week (starting Wednesday)  we will begin another round of immunizations for Nicolas.  We will go twice a week until caught up.  So far it is shaping up to be a busy week!  I'll let you know what we hear from Riley as soon as possible!

Love,

Felisa

What is the #1 rule of the universe?

DON'T PANIC!

Now let me tell you about our day...

Due to fog, Garrett had the day off of school.  So we got to spend the day together!  We worked out together this morning and then Garrett put his laundry away, took out the trash, fed the dog, and made his bed while I bathed, fed, and dressed Nicolas!  He was a great help this morning but this afternoon he really stepped up to the plate!

After we got cleaned up, we headed to the Angola Outlets to make a quick return.  I carried Nicolas into the store...because this was going to be brief... while waiting for the sales person to give me my receipt to sign i asked Garrett to hold Nicolas....which being the good brother that he is, he said, "sure!"  BUT the lady was taking longer than she should and Garrett started to get tired...Nicolas is quite heavy...so he had to hand him back to me.  During the exchange I felt a warm liquid start to ooze all over my hand.  I looked down and said, "close his button Garrett, it came open and is leaking"...But on further inspection realized it had come OUT....THE ENTIRE FEEDING TUBE HAD COME OUT!!!!!!  

My initial reaction....PANIC...

I laid him down and immediately tried to put it back in...which is impossible...

...because there is a water balloon on the end of the feeding tube which anchors it into the tummy... To put it back in you have to empty the water out of the balloon using a syringe...reinsert the feeding tube into Nicolas...then put the water back in....

Well at the moment...

My mind was going a mile a minute and yet all I remember is...

This isn't supposed to be OUT...It's supposed to be IN!

And all that was coming out of my mouth was...

O my gosh...O my gosh...O my gosh....O my gosh....O my gosh...

Then a women came over and said I'm a nurse...and I thought to myself, me too! (HA--not really)  Well everything clicked and I remembered I had everything I needed in the diaper bag which was in the car.  So I gave Garrett my keys and told him to go get the diaper bag.  He brought it in and the nurse held Nicolas down on the table while I reinserted the feeding tube.

After that...I bought Nicolas a new outfit...dressed him...cleaned up the very sour smelling formula that was all over their cash register area...

Said thanks and we walked out the door!

So #1 rule....DON'T PANIC!

And I must say...Garrett was amazing!  He didn't miss a beat...he was focused and calm!

I was shaking so bad that I could barely sign the receipt!

I'm so glad he was there with me!

What a day!

Pirate Party's!!!

The Meyers Family...

Reading my pirate book!

I buried treasure in my pocket!

Pirate Camden

The Baker Family...

Pirate Andrew and Pirate Jacob

Two Pirates wishing Nicolas a Happy Birthday!

-Uncle Joe and Aunt Lynne

The Stein Family...(Tom and Christy)

Pirate Tommy

Pirate Aaliyah

Hey Guys, 

Hope Nicolas had a Happy Birthday!  What a wonderful idea the birthday box was.  The kids loved the books and Tommy liked to dress up like a pirate.  We had Cassandra make the cupcakes which were good.  Tell Nicolas that we can't wait to see him and we love him lots and lots.

Love Tom and Christy and kids

The Leman Family...

Jack, Tim, Kimra (Ms. baby Leman in mommy's tummy) and William

We enjoyed pizza and a movie!

Cool Pirate Brothers!

Pirate Jack

Pirate William

The Brower Family...

Pirate Brielle and Pirate Jake

Yummy cupcakes!

To Nicolas

HAPPY 1ST BIRTHDAY NICOLAS!!!

We hope you had a great day and a wonderful 1st birthday.  We had a lot of fun celebrating here in Indy, but wish we could have spent it with you...next year :) We made cupcakes, lit a candle for you and made a wish that your second year is even better than your wonderful first.  We are so proud of you and the little man you have become.  You have been through a lot and have been quite the tropper.  You are so lucky to have such amazing parents and big brother that love you so much.  We love you so much too and can't wait to see you again.  Happy Birthday little pirate!!

From the Browers

Aunt Danae, Uncle Jake, and Pirate Brielle

More Pirate party pictures soon!

Happy Birthday To Dear Nicolas!

Happy birthday to you!

Happy birthday to you!

Happy birthday dear Nicolas!

Happy birthday to you!

Cap'n Nicolas sent boxes full of goodies to each of the Aunts, Uncles, and Cousins.  Inside they found treasure to help them celebrate Nicolas' birthday in true pirate style!  So while they had a nice Pirate Party in their very own home...We celebrated at our house with the grandparents!  We wish we could all be together...but we know it won't be too much longer until we can!  Here are some birthday party pictures and our birthday wishes for Nicolas!  Enjoy!  More pictures to come!

I like watching Mommy decorate for my party!

Yummy icing!

Aargh Gaaarrrett!

Grandma Peggy

Papa Crotchie's whiskers are poky!

Grandma Lane

Papa Randy ...Mema Marilyn couldn't be here.  Poor Mema's pancreatitis is acting up again and she is back in the hospital...We love her and missed her very much!  Get better soon Mema!

Grandma Lane and Papa Crotchie gave me my birthday hat!
It's my party....
...And I'll cry if I want too...

I love my daddy!

I love my mommy too!

I want to open my presents now!

(He stayed awake the whole time!)

Garrett got me a pirate sun hat and a matching swim suit!

(He tried to peek up at me from under the hat!)

He is the coolest big brother!

Throughout the day we received many kind messages from friends and family!  Thank you!  We love you and miss you all!

At the party, Nicolas opened some very nice cards, summer clothes, pj's, a new swing, and money for therapy toys!  We love it and appreciate it very much!

Love you Grandpas and grandmas!

  

Our wish for Nicolas is health and happiness this year and always!

Happy birthday Nicolas!  You have been a gift to us all!  We love you!

Mommy, Daddy, and Garrett