The Story of Nicholas' Early Arrival: Equipement and FTT

Wednesday, December 8, 2010

Equipement and FTT

Not a fan of winter gear.

Last week Nicholas had an appointment with the GI doctor. He isn't gaining weight and growing like he should be so he diagnosed him Failure to Thrive. He said to give him fish and add olive oil to his food. He also said to add protein powder to his food. Of course most protein powder has milk in it so I wasn't able to find any. Grandma T got some at Whole Foods that is milk free. I can't wait to go to Whole Foods later this month. It is going to be a dairy free wonderland! He has been doing well with the tuna. We are adding Miracle Whip so it is like tuna salad baby food. Looks gross but Mark said it doesn't taste bad.

His feeding therapist came by to go over his swallow study. He has a safe swallow meaning he isn't aspirating into his lungs but it is very uncoordinated. He has residue left in his mouth that takes several swallows to get rid of. He also has premature spillage into his throat. That means the food is going down by gravity rather than him forming a bolus and making a swallow. We really didn't get any new news. He is uncoordinated and has texture issues. So no feeding therapy and we are to work on de-sensitising his mouth.

Nicholas did really well at AV therapy today. It is affiliated with USC so they are going on winter break for 4 weeks. Since they like Nick, the instuctor said she will try to come in to see him while they are on break.

The Giraffe Stander

Yesterday during PT, a rep from an equipment company came out to measure Nicholas for his wheel chair and stander. He has to start getting his therapy through the school system as soon as he turns 3 so his therapist wanted to go ahead and order the wheel chair since it can take forever to come in sometimes. It looks like a stroller so that is pretty cool. The stander on the other hand, looks like a torture device.

The Stingray Wheel Chair

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Preemie Experience

The Preemie Experience
The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.
It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.
It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.
It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, his eyes are open,” or “he’s crying!”
And the lows of “I’m sorry, something has shown up in the ultrasound,”
Or even “There is nothing we can do…”
It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.
It is watching children dying around you, wondering if
Your child will be next.
It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.
It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because,
after all,
The child wasn’t due for another four months!
It is thinking the nightmare is over…only to realize it still Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.
It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate
occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.
It is watching a child struggle to pick up his or her head, sit, Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.
It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,

This child is yours,
And you will love this child no matter what.

The Story of Nicholas' Early Arrival

Wednesday, December 8, 2010

Equipement and FTT

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