Teddy's First Birthday (long, sorry!)

[Guest guest]

Happy Birthday Teddy!!!

Glad to hear about your day and how well you are doing...sitting up like a

big boy!

Joanne and

[Guest guest]

Teddy - Happy, happy birthday - darling !!!!! I'm happy that you had such a

good time !!!! You're getting big & making mommy & daddy very proud !!!!

Miss Crystal sends you extra special birthday hugs & kisses !!!!

Your pals in South Jersey,

& Crystal Aquielle - 22 mos. old - BPP too ...

[Guest guest]

Dear friends,

Teddy Diskin is one year old! We celebrated his birthday with not just

one, but two parties over the weekend. I was worried ahead of time about

how I would feel at Teddy's birthday because of all the challenges ahead of

him. However, Teddy must have sensed my concern .(just kidding), and

suddenly started sitting up by himself just one week before his birthday!

He now sits for a minute or so, either straight up, or leaning on one arm.

I am beside myself with pride. Teddy's reflux, which has plagued him since

the age of one month, also seemed much less severe this week, giving me

hope that he may outgrow it and avoid a fundoplication procedure. Oh, and

one more wonderful thing happened this week. Teddy's ENT doctor told us we

could start giving Teddy VERY small tastes of baby food. He had his first

oral " meal " on Thursday -- about one teaspoon of baby applesauce. It's no

wonder that I felt so elated when we sang " Happy Birthday " to our adorable

son.

Welcome to all the new members on the list. To those of you with young

babies, I can echo the sentiments of others who have already written to say

that we empathize with you as you grieve and struggle to find your way down

a totally unfamiliar path. A few weeks ago, my husband Dan started telling

the story of Teddy's birth and first few weeks of life to some friends we

hadn't seen in years. It was so painful for me to recall those days that I

actually had to leave the room. Then, as I began to prepare for Teddy's

birthday, I realized how far we have all come. Teddy is a constant source

of joy in our family. Yes, he is delayed in both motor and cognitive

skills. Yes, he has numerous medical challenges. Yes, he requires four

therapists a week, nurses at night, and innumerable doctor's appointments.

But watching him laugh as my six year old daughter blew a party horn in his

face is just one of the many moments that have made the past year not only

bearable, but a pleasure. I will always grieve for the loss of the child I

expected, but I will always be grateful for the son I have.

Now, one negative note and a question to those of you whose kids have

seizures. Teddy has started doing something strange, and I'm wondering if

it may be seizures or some kind of pre-seizure activity. Three times now,

immediately after waking up from his nap, Teddy's right leg has trembled

(not stiffened) and one or both of his hands have turned blue. It has

lasted from a few seconds to a minute or so. He otherwise seems totally

normal at these times; his eyes focus on whatever we're playing with and

his lips are completely pink. I'm going to ask his neurologist about it,

but I know sometimes you all have more knowledge than the docs.

Wishing you all a very happy Valentines' Day!

Meg, mom of Teddy, 1 yr old, bilateral perisylvian PMG, non-oral feeder,

g/j-tube feeds, partial vocal cord paralysis, creeps on belly, starting to

sit unassisted.

[Guest guest]

Happy 1st birthday Teddy. That's wonderful that you can see the world from a

sitting position now.

Good news regarding Mark. His parents now have a computer and modem and are

online as of tonight. They just have to figure out how to use it. I sent a

link to this group so maybe by tomorrow they will be requesting to join in. I

will feel much better having them speak up for Mark. As his nurse I am always

trying to join in and still be conscious about confidentiality. I loved looking

at the pictures of the kids on the home page. One thing I did notice is that

they all smile and were not on life support. Mark grabbed my finger 3 times

last night. I was so proud of him! He didn't look at it and grab it, I was

wiping his mouth the first time and securing his trach the other two times.

That is the first time he has latched onto my finger without my assistance.

Seth's mom.............Mark aslo has a trach. He is also vent dependent but he

is able to come off long enough for neb treatments and cpt. He gets nebs and

cpt every 6 hours followed by deep trach suctioning. I also take him off the

vent for morning tub baths without any real problems. Of course I carry the

suction machine to the bathroom with us.

I have got to get some sleep. Worked all night last night and have been up all

day preparing for my husbands birthday party tonight. Finally everyone has gone

home so I am off for some much needed sleep.

Happy birthday again Teddy. Whoevery moderates the list, be watching for Mark's

parents to join in any day now.

Re: Teddy's First Birthday (long, sorry!)

From: Crsmoogie@...

Teddy - Happy, happy birthday - darling !!!!! I'm happy that you had such a

good time !!!! You're getting big & making mommy & daddy very proud !!!!

Miss Crystal sends you extra special birthday hugs & kisses !!!!

Your pals in South Jersey,

& Crystal Aquielle - 22 mos. old - BPP too ...

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