A Long Time Coming....

Dear Friends and Family,

 

I am writing on behalf of my mommy who is ashamed to be considered a total blog slacker.  Now I won’t sit here and make excuses for her.  But, seriously a lot has happened in the past 6 months.  I’m not gonna lie…though I know I’m the light of her life, I’m also nothing short of a handful.  Anyway, enough about her, let’s talk about me. 

 

I am doing awesome.  I turned one in August!!!  This was a huge milestone for me and my family, especially since the doctors were not too sure I would survive long after I was born.  Clearly God and I had other plans J.  Mommy always says she knew I wanted to be here since I started kicking like a maniac in her belly.   BTW, that has not changed much.  You should see my legs – they’re enormous, but in a good way.  Some might say thunder thighs; I prefer muscular and healthy.   Future soccer star…watch out.  So yes, though I go through a lot and get poked and prodded on a daily basis, I truly am a happy baby.  Someone once told mommy, “Ella doesn’t know she has a syndrome or think that she is medically fragile.”  And while that statement is quite obvious given I’m baby, if you met me you would quickly learn that it couldn’t be closer to the truth.   Someday I will figure out that I’m different than most people – that I don’t have ten fingers, or breathe through my nose, or eat through my mouth (I could go on and on here).  But, right now I am content just being me.  I know no different.  I smile, laugh, and love just like any other baby and want to be loved just like any other human being. 

 

On the developmental front, I am progressing quite nicely if I do say so myself.  I am doing things that mommy and daddy weren’t sure I would ever do.  I started commando crawling over the summer, then recently it turned into a 3 point crawl with a right leg scoot.  I am very creative (did I not mention strong willed???) and so I decided I should improvise when it comes to crawling as well.  My PT said she doesn’t care how I crawl so long as I get from point A to B.  My parents are huge motivators for getting me to move and so is the laptop.  I really love it when mommy plays elmo on youtube and then hides the laptop under a dishtowel for me to find.  That’s when I boogy.  I just started cruising around the couch and I am learning how to pull to stand (this is difficult for me since my forearms are underdeveloped, but don’t worry I will figure it out soon).  In the language department, I am able to sign “me”, “more”, “yes/no”, “hi/bye”, and “all done”.  I respond appropriately when mommy says, “touch your belly”, “stomp your feet”, “clap your hands”, “so big”, “hands up high”.  When she says “oh my goodness” I put my hands on my cheeks (very cute).  I am taking tastes of baby food by mouth, not for nutrition, but rather just to keep up oral stimulation.  I also started to open up my mouth a bit more and now I can even make purposeful noises past my trach.  I especially like to pull out new noises at bedtime (like I said I’m just like any other baby, I’ll try anything to delay going to sleep).  Some might say manipulative, I prefer smart. 

 

On the medical front, I’ve had a few bumps along the road.  Last Spring, I had a bad staph infection at my trach stoma site.  Trust me, “impressive” and “I’ve never seen this before” are two comments you don’t want to hear from a doctor…highly reassuring.  I was hospitalized at CHOP last June when going for a routine consult.  I had a nasty case of Rhinovirus, which is like the common cold, but when you’re dealing with a trached kid it doesn’t seem so common.  So far this Fall I’ve had another cold and then croup without being hospitalized (thank God).  In September I had major hand surgery to move my right index finger into an opposable thumb position.  I was in a full arm cast until I managed to remove it 4 days post-op.  This little stunt sent my mom and nurse in a frenzy down to CHOP’s ER in the middle of the night.  My parents were happy when I went into a hand splint (until of course I figured out how to remove this too…hourly).  Today I went to CHOP to see the surgeon for a post-op visit and he said my new thumb looks excellent.  It even started to move a little yesterday.  But, now the real work begins – I have to exercise my thumb daily and I go to outpatient hand therapy 2x/week (this added to my already busy schedule of 11 other therapy sessions per week plus Dr. visits).  I should be moving it more in the next two weeks and if all goes well I should be pinching with my new thumb 6 months from now.   Later this year, I will undergo the same surgery on my left hand.  As far as my jaw and cleft palate surgeries, mommy and daddy are taking me across country to meet with some of the top experts in their field.  It will be a difficult decision to make since many docs have differing opinions on what methods to use for the jaw distraction.  Because there aren’t many kids out there with Nager there isn’t much research on which is the most effective/least risky.  Most of their opinions are based on personal experience with patients.  I will likely have eye surgery this year as well.  My eyes tend to wander outward from time to time and so to fix this they have to weaken my outer muscle, which will force the inner muscle to get stronger.  Hopefully, they can combine at least two of these surgeries so that I won’t have to go under anesthesia so many times.

 

Mommy and daddy are hanging in here.  They are doing the best they can to take great care of me.   They are often sleep deprived and extremely busy - not only handling my medical care, but also dealing with issues involving insurance, Medicaid, medical supplies and equipment, nursing coverage, therapies, and doctors visits.  Some days are more chaotic than others and they are still trying to take it one day at time.  People say there is no book that teaches you how to be a good parent; well there is certainly no book on how to be a good special needs parent.  You got to go with the flow and just hope and pray to God that you are doing right by your child.  At the end of the day (or even at the beginning) my parents may be tired, stressed, and overwhelmed, but they say I am worth it all.  They tell me that I bring them more joy in life than anything they have ever experienced.  And hey – I feel pretty good about thatJ. 

 

Thank you everyone for your help this past year and especially for all your prayers and good wishes.  I know you can’t truly understand unless you are going through it yourself, but many of you through words and actions have shown us that you are trying to understand and that means the world to us.  Please continue to keep our miracle baby, Ella, in your prayers.  We ask for prayers that He continue to make her healthier and stronger in body, mind, and spirit each and every day.  Please pray for guidance for Erik and I that we make the best medical decisions for Ella, particularly concerning her upcoming surgeries.

 

I also want to thank my dear friends Laura Leonardi and Maureen Alchermes who out of the kindness of their hearts are hosting a fundraiser for Baby Ella.  This is a beautiful gift to Ella, Erik, and I and will help greatly with the medical expenses we’ve been accruing for Ella.  The fundraiser will be Friday, November 5^th from 5:30-9:30pm at the Barefoot Peddler in Greenvale.  For more info, you can email lleonardi3@yahoo.com or alchermesm@yahoo.com

Much love always,

Ella Rose

P.S. Apologies for poor grammar/spelling…I did write this at 3 in the morning while staying up as Ella’s night nurse.