The End of an Era

Oh my goodness....I don't even know how to begin this post!  Stanton graduated from private therapy! Did you read that?!?!  We are done with private speech, feeding and occupational therapy in the private setting!  What will I do with myself?

 I clearly remember this adorable little bald 10 month old beginning intensive speech and occupational therapy!

Therapists came to our home and attempted to work on Stanton's low muscle tone and feeding aversions.  

It was the hardest thing I've ever been a part of!  Most children just eat....but not this blue eyed miracle.  Every touch, lick and taste has been documented, scrutinized and monitored.  Sitting at the table was a complete nightmare.  Cooking anything strong smelling in our kitchen could set off the most violent throw ups beyond your imagination. 

This picture was a pivotal moment for our family.  1) Stanton is sitting at the table.  2) He has a spoon in his mouth 3) his lips are completely closed around that spoon. We had to teach him every single one of those skills.  Yes...even tongue control and lip closure!  

Long hard days turned into longer, harder, weeks which rolled into excruciating months and eventually our routine year after year. We never went anywhere without a baby bottle of stinky sock smelling medical formula.

The park

or the pool!

And suddenly today, I have this amazing 5 year old little guy who can do this:

Stanton has so much to teach this world!  I can not wait to watch him continue this journey of life.  God knew exactly what he was doing when he honored me with Stanton.

"Count it joy, my brothers, when you meet trials of various kinds, for you know that the testing produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." James 1:2-4

xoxo,

Ginger

Kindergarten!!!

Had that moment today...the freshness of grieving again the loss of "normal" associated with Stanton.   I know some of you understand exactly what I'm talking about.  Certain things just bring it all back...all we've been through with him.  Stanton started kindergarten last week.  He's at a public school that has everything he needs and the added bonus of a fabulous teacher.  It really is a great fit for our family!

Today was his first "hard and emotional" day.  The iep intervention teacher personally called me to fill me in.  Which is awesome!  The staff actually communicates and wants parental involvement.  But...as soon as I hung up the phone that feeling of sadness filled me.  How many of my other friends have sent their child to school and had to deal with ieps and services and medications and accommodations and today received a phone call from the school.  So, I had a little cry and thought I'd share.  We've all been there and will be again!

Here are some cute first day of school pictures for you to enjoy!

He really has come a LONG way!

xoxo,

Ginger

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Small Success!

Stanton has had a touch of pnuemonia this past week and weekend.  He's on tons of steriods and breathing treatments.  However, for the first time in a year, we were able to manage this at home!  The same symptoms, just three months ago, would have landed us in the hospital.  But, as I said in my last post, he now will take his medications and drink fluids.  This is such great progress for our family.

 

 

We go to Tulane to see the pulmonologist on Thursday.  I have lots of questions for him! Currently, Stanton takes Claritin every morning and Singular every night; Pulmicort every morning and Xoponex every night.  That just seems like a lot of different medications to help control his asthma.  My other question is about how to make his upper respiratory cilia stronger and more responsive.  His last scope at the Cincinnati Children's Hospital showed that during an "asthma flare" or illness his cilia freeze.  The cilia are the tiny hairs in our respiratory tract that help move mucus.  Since Stanton's freeze, his body has a difficult time fighting something like a simple cold.  

 

 

A friend of mine posted the verse below on facebook this week.  It was just what I needed to hear in the midst of my questioning God about why my child continues to struggle with his health.  May it speak to you as well this week

 

"No eye has seen, no ear has heard, no mind has conceived what God

has prepared for those who love Him." 1 Cor 2:9

 

same ol', same ol'

This pretty much describes our summer:

 

And this pretty much sums up the start of Fall:

 

I haven't blogged in a while because there really hasn't been much to report.  We continue to face the same daily struggles and battles we have all the time.  Stanton still has good and bad days; still isn't much of an eater; still sees more doctors than any four year old should; still has some sort of therapy practically everyday.

 

We are trying hard to have some "normal" kid things for him as well.  I really don't like the fact that his chronic illness and low immune system keep him from participating in school and many other things.  I know Stanton craves social time away from me.  So, in August he started Karate.  He loves it so far, although we have missed more than we've been thanks to asthma.  After Labor Day, we enrolled Stanton in a Sunday evening church program.  He's only made it once, but seemed to enjoy it.  I really hope his health will improve so we can participate in these fun activities on a more regular basis. 

 

We have made progress in getting Stanton to take his medications without throwing up (well, most days that is, as today he did throw up a claritin).  He also seems to know understand the importance of staying hydrated, and will now drink something even when not feeling well.  It does take lots of coaxing...but....it's working!  Both of these things may seem small, however, they have kept him out of the hospital for the last four months!  So, in our world....that's HUGE!

Maybe Monday?

Well the appetite stimulant we started Stanton on worked well for about ten days, then stopped.  So, we took him off of it for a week and started it back this week.  I’m disappointed to say I haven’t noticed a difference.  So, for the last two and half weeks, give or take, Stanton is only taking a bite of this or that and saying he’s full or not hungry.  It’s exhausting to spend my whole day revolved around bribing, pleading and buying anything your non-eating child says he might like to try. 

 

Crystal Light has come out with a line of “mocktails.”  We bought and tried the Mojito, Appletini and Margarita.  They are all delicious and really taste like a cocktail!  Since I’m breastfeeding a baby, it’s been a nice little treat for me.  We had the Margarita flavor in honor of Cinco de Mayo.  I pulled out pretty glasses and gave one to Stanton.  He said “what’s this?”  I told him “a margarita for Happy Mexico day.”  He drank it and loved it!  So now, he randomly asks for a “Margatita.”  It’s pretty funny to see an almost four year old trying to ask a margarita and has turned a few heads!  Time magazine should consider that for a cover (just kidding of course!)

Last week Stanton had a cold and asthma issues.  When he’s sick he always shuts down orally, so I wasn’t surprised that he didn’t really eat.  I was pleasantly surprised that he continued to drink!  Usually that stops too and we end up in the hospital to treat his dehydration.  So, I guess we did take a small step in the right direction with this last illness! 

On Monday we have an appointment with a gastroenterologist and feeding team at the New Orleans Children’s Hospital.  This was encouraged by our team in Cincinnati as they felt we really needed a local GI team.  If Stanton ends up needing to be treated while in the hospital sick, it’s easier to coordinate in New Orleans then trying to fly to Cincinnati last minute.  Cincinnati also said that if Stanton ends up needing a feeding tube, it’s always easier on the family to have those follow up visits locally as well.  I’m curious to meet the team and hear their advice and recommendations for our journey.  We’ve met so many doctors and specialists, it’s hard to be excited about it.  But, I do know that one day, we’ll walk in to a doctor’s office somewhere and they will just know exactly what to do.  Maybe that will be Monday…