Wednesday, January 7, 2009

Four years have gone, how can that be? (part 1)

To think that Teagyn has been gone for four years just blows my mind. Sometimes it seems as if she was born yesterday. Other days it seems as if it were a life time ago. Did we really have a baby that was born with a terminal illness? Surely not! That only happens to other people?

Teagyn had seizures, and feeding issues from birth, but they disappeared by the time she was six months old.

(the white tape on her face was holding her feeding (NG) tube in place)

For part of Teagyn's life we were blissfully unaware that our days with Teagyn were numbered.,We were told she had cerebrally palsy, with every type of therapy known to man, she would lead a good life.

(L-R) Teagyn, Jannae, Jalen, and Devin, playing in the ball pit.

From birth until age two she made great progress, laughing, smiling, eating table food, and even bearing weight on her legs. Her favorite thing was to bang her duplo blocks as hard as she could on her wooden table.

Teagyn continued with weekly therapy. She attended daycare (I ran a home daycare). She participated in all of the activities, with a little help from me.

She loved to play dress up. Here she is on Halloween.

She even made a few trips to Scotland. In the above picture, Teagyn is talking to her Mum on the phone while vacationing in Scotland with me, and her cousin Jannae.

She had special chairs to help her sit correctly, like the blue one pictured above. She sported a wheelchair, wore braces on her legs. She even had a "stander" which held her in the upright standing position.

While in her stander (pictured above), she would hit her toys as has hard as she could on the table, and bust out laughing.

Life was good!

Just after her second birthday, Teagyn had her tonsils, and adenoids they were obstructing her airway, which cause her to snore while sleeping.

Teagyn was never the same after surgery. It was as if the surgery caused the regression. She was no longer able to eat table food, we had to puree everything.

Because of her noticeable regression we perused a diagnosis once again. On a repeat MRI the doctors noticed change in Teagyn's white matter. This was not a good sign.

Over the next two years Teagyn slowly lost the rest of her skills. We tried to continue on with life as normal, still taking Teagyn to the park, vacations, and all the other fun stuff you do with a "typical child".

When you care for someone on a daily basis with a degenerative disease, you don't really notice the regression.  Perhaps  your trying to protect yourself.

Teagyn, was Teagyn, and we did what we had to in order for her to lead a semi normal life.

Below Teagyn at the children's museum, under going an bubble experiment!

Check me out!!

We never got a formal diagnosis, but based on Teagyn's symptoms we knew, but didnt necessarily admit that she had a degenerative disease.

The last six months of Teagyn's life where hard. She lost the ability to smile, laugh, and play. She was unable to eat pureed foods, and she required a feeding tube once again. She became oxygen dependant, and her seizures returned. She slept a lot of the time.

Looking back at pictures you notice a change in her.

Teagyn had to be monitored twenty four hours a day. She required multiple medications, an apnea monitor, a plus ox, a suction machine, a feeding pump, as well as an oxygen concentrator. .

Shortly after the New Year in 2005 Teagyn, became sick and was hospitalized. Considering she had been on a vent (life support) before, this time wasn't "a big deal", she just needed a little more oxygen support, she was the regular floor, no PICU this time.

Just after midnight on January 8th, my sister called me screaming down the phone. I had no idea what she was saying, through the tears. She was yelling that Teagyn had stopped breathing they had called a code blue.

The doctors and nurses did all they could to save her, but her little body was tired, she fought a long hard fight. By the time I got to the hospital she was gone.

1 comment:

  1. I'm thinking of you today honey. Much love.

    I still think of your baby girl often.