Showing posts with label CHKD. Show all posts
Showing posts with label CHKD. Show all posts

Sunday, January 12, 2014

SibShops

After participating in my state's Partners in Policymaking program 2010-2011, I learned that another PIP graduate brought SibShops to my area for her end of the year project.
"Sibshops are best described as opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. They reflect an agency's commitment to the well-being of the family member most likely to have the longest-lasting relationship with the person with special needs."
~ http://www.siblingsupport.org/sibshops/frequently-asked-questions-about-sibshops.pdf
At that time in 2011, Sadie was nearly 6 and her younger sister was nearly 3; therefore, she would have to wait at least three years to attend a meeting.

Shelbi was able to attend her first meeting this past November.  Happily, she instantly connected with the people running the meeting and also the other children in her group.  She enjoyed the meeting so much that she was excited to attend the next one.  However, due to scheduling, she couldn't attend the next meeting until yesterday.

At the meeting yesterday, she was so excited to be there, so much so that she actually didn't want me to stay with her for the meeting.

When I arrived back two hours later to pick her up, she was modeling playdoh and chatting with another sibling. This also gave me the opportunity to drive around and explore the area, stop at a few shops and grab a coffee.  We both benefited from the morning.

I'm so thankful for programs in our area to support the lives and health of siblings of people with developmental/intellectual disabilities. 
Virtual Waterway on the floor with puddling water sounds too

Monday, July 9, 2012

tonsils

This has been the hardest week of my life.
Sadie had recurrent strep, totaling 5 times between January and May. The ENT examined her a few weeks ago, and it was determined, if she had her tonsils removed that she would get strep significantly less.
Not only did strep consume Sadie, her sister got it several times, and so did I, our whole house shut down with sore throats, achey bodies, headaches, lack of eating and drinking. and over all feeling miserable for 3-5 days each time we each got it. Strep equaled dozens of missed days of Kindergarten, preschool, and overall diminished quality of life. In fact, I was hospitalized for strep meningitis and viral meningitis for 4 nights.
And so it was scheduled and on Tuesday, Sadie had both tonsils removed, with very little loss of blood, the doctor didn't even need to use sutures. I assumed a few days of eating less and drinking less. What I didn't anticipate was 8 hours of wheeling her around the 8th floor of the hospital in a wagon with the IV cart rolling with us. She completely refused to sit still, refused to lay in her bed, and refused to play in one spot. The only way she was comfortable was laying in the wagon, surrounded by pillows and constantly moving.
We finally insisted the best place for her would be at home and we promised to keep her hydrated with a syringe (65cc's) and fluids. We've been in this situation before when she was sick with a flu or cold. I've had to hydrate her with a syringe and electrolyte fluids to avoid going to the ER. I assumed this would be no different.
After being home for a day, the syringe became a form of torture for both of us. Holding her down and forcing her to drink it just got worse and worse as the days went by. We were forcing everything, including medication and drinks.
By Friday morning, 3 days after surgery, we started thinking about going back to the hospital and get an IV in her. I was completely consumed with getting enough in her to keep her hydrated. By then, her urine output was pushing 15 hours, and by Saturday, she had gone almost 24 hours without going potty. Memaw was awesome with her, getting her to eat some ice. At that point, every time I approached her with a medicine cup or syringe, she would run hysterically the other direction
Saturday morning I gave her her appetite stimulant and she finally started eating more ice, snow-cone ice, sipping a few drinks from a juice box, and even eating a few bites of cheese and letting animal crackers melt in her mouth.
Relief came Sunday morning when she woke and chugged 2 whole cups of ice water and just kept eating soft foods all day. I am so so grateful for the appetite stimulant. I think we might have found ourselves in the hospital again if it hadn't been for that medication.
We are now at day 6 since surgery and she is drinking much better, but still needing pain medication. She hasn't resumed her milkshake diet yet and her her little body that used to look healthy, now looks thin and her legs and arms look boney. Her face looks thin and tired.
I know we are out of the woods now, but it was one of the most stressfull weeks. Knowing how critical it is for her to drink and eat, and not being able to make her understand that she had to drink. To help her understand that I wasn't hurting her by giving her gatorade in a syringe, that it was for her own health.
Hoping for a healthier year without those tonsils!!!!
****The last photo was when she was 15 months and the ER couldn't get an IV in any of her veins. After trying every hand, arm, foot, and leg, maybe 20 IV tries, they finally put her IV in her forehead. Another stressful memory :(

Time is a Thief

I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...