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?
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