The Story of Nicholas' Early Arrival: Therapy and CI Evaluation

Tuesday, June 30, 2009

Therapy and CI Evaluation

Our early interventionist came out yesterday to see Nicholas. She worked on tracking with him and he did really well. He followed her from one side to the other. She also called a speech therapist to tell her about Nick's hearing and see when we should start speech therapy. The therapist she found is a cochlear implant specialist and wants to start right away. Speech therapy will help with communication. They have to get a prescription for the therapy from his pediatrician then will call us for an evaluation. The physical therapy is ready to go but the therapist is on vacation right now. When she gets back we should have our evaluation and get that going too.

I heard from the cochlear implant center at MUSC today and they have him scheduled for his four evaluations on Aug. 27. He has to see an audiologist, a speech therapist, have a CT of his head and meet with the surgeon. They were able to schedule all four in one day instead of two since we are coming from out of town. That was nice but it means for a long day. I'm glad things have finally started moving and Nick's schedule might be getting a little busier soon.

1 comment:

MicheleJuly 2, 2009 at 4:56 PM
Awe he's getting so big!
And doing GREAT!!!
Good luck on everything with the speech and the implant. I wish we would have gotten Kenny speech therapy much earlier than just now. He gets so frustrated because of not hearing so well and unable to communicate!
Love the updates!!!!
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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

Tuesday, June 30, 2009

Therapy and CI Evaluation

1 comment:

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