Chiari Therapy is Never Ending

Of course when I made the decision to stay home with Gabi it was because she needed round the clock care, and as her mommy no one could or would do what I do. She has several developmental delays, is NPO and receives 5 bolus feeds during the day via a feeding tube, and goes to therapy twice a week. But with my growing tummy and fading energy, the addition of speech therapy is physically overwhelming. Finding out she has Chiari Malformation was like the answer to a great mystery.

Before she was discharged from the hospital, the clinical speech pathologist said that the speech therapist would come to the house. Well, we didn't contact them and set anything up until a couple of weeks ago because of all the doctor's appointments. When I finally called them you can imagine my surprise when I was informed that we go to their facility as well. Twice a week! So, today was her 1st day. Not only were we 30 minutes late because I had the directions wrong, but Gabi got sick from her feed. Ugh!

Afterwards we picked GiGi with the intention of having a girls day out. She has been so clingy and attention seeking since Gabi is home with me all day. We didn't get to go anywhere or do anything. She just wanted to cuddle with mommy and go to sleep. I guess we will try again tomorrow- they want to get their toenails done. In addition to going to a birthday party for a friend's son.

I did get to join to 2 online Chiari Parents groups. I've met a few parents at the hospital who also would like a local support group because this is very stressful to deal with. My business is suffering. I was planning to visit some hair salons and car dealerships today. But, at least the girls are happy, staying healthy and know I love them. And as long as they're doing well, Honey is happy too. In this economy, not many husbands would welcome their wife giving up an income. I am so thankful that I can, I'll be glad to gain a bit more energy. When will that be?

Meet the Gs

From December 19, 2008 to January 19, 2009 I went from being a 6th grade English teacher to a Stay At Home Mommy/Chauffer to my daughters Gabi and GiGi.

The bell rang at 3:45 p.m. on December 19th and like all the other teachers and students I thought I was going home for two weeks of peace and quiet with my family. Then, I discovered I was 2 1/2 months pregnant! Then, Gabi was admitted to the hospital totally dehydrated, malnourished, and miserable. She weighed 19 pounds when she was admitted. She is up to 28 pounds now and recently celebrated her 4th birthday as a normal, happy little girl!!! Over the next 22 days, Gabi had an NG-tube inserted, then a G-tube placed surgically, and ultimately a Chiari Decompression after being diagnosed with Chiari Malformation. http://www.asap.org/

After Gabi was discharged from the hospital on January 19, 2009; GiGi had out patient surgery to place her 3rd set of tubes in her ears!

Gabi's schedule is OT/PT on Tuesdays and Thursdays, Speech Therapy on Fridays, and other doctor's appointments in addition to my own prenatal and high risk specialist appointments. I'm 25 weeks along now and tire easily, but still going. The decision to come home full time was a no-brainer. I also decided to pursue my candle business full time through vendor booths as the opportunities came. Whew, am I tired!