Today was a big day! We went to the Feeding Disorders Clinic downtown at our usual hot spot, the Children's Hospital. The doctor was amazingly friendly and great with KayTar...she was also quite the talker. I really enjoyed the appointment. She was very informative and even gave me some tips for navigating my insurance and the school system in future years. She gave me some snappy comebacks for therapist who doubt the validity of her issues, because the school system doesn't provide "feeding" therapy. She referred KayTar to a private SLP/OT through the hospital who will do an in-depth evaluation and set up therapy for her. The doctor said our goal is to have her eating normally by Kindergarten. Wow. Even though I know much of this could be long term, I didn't realize it would take so long to get her to eat normally. Kindergarten seems light years away.
On the way home, I suggested to Josh (yes, he came to the appointment, his very first!) that we might want to knock the blood work out today, too, so we stopped at the lab. IT WAS AWFUL. It is always awful. Pulling into the parking lot makes me want to barf. Looking at my sweet smiling baby girl as we walk in the building to her doom, makes me want to barf. Actually waiting in the room for the phlebotomist makes me do a little apprehensive dance. And since Josh was there with me, I did a good bit of repeating "I don't want to do this!" and burying my head in his shoulder. Holding her down while they stick her makes me cry. AWFUL. They stuck her once, and WIGGLED THE NEEDLE AROUND. A LOT. I thought I was going to pass out. I was holding her down while they tortured her. If someone had wiggled that needle in MY arm? They would have left the room with a black eye. But poor KayTar had to take it. So sad. The ladies put the tourniquet on her other arm and started pressing and rubbing, but they gave up before sticking her. They couldn't find a viable vein or get any blood. We have to go to the Children's Hospital on Wednesday to have the pro's take care of it. One bonus? We get instant results. No waiting 2-4 weeks to get answers. But it means I have to hold her down again on Wednesday, and I don't want to do it. At all. Ugh.
5 comments:
I'm so sorry you have to go through that...here's hoping Wednesday goes better?
Thanks for visiting my blog the other day.
I'm sorry you had to go through all of this. I can't even stand taking my son in for his regular vaccinations. Last week we went in for his 15month shots and I had to hold him down on the table for it and it was just awful. I felt like a total traitor bringing him in there.
Anyway, I am hoping for good test results for you.
You poor thing! I hope that you will get some of the answers you are looking for with this blood work. I will be thinking about you on Wednesday.
I found your site quite by accident and couldn't leave. The tears are still flowing.
I truly know what you go through each time they have to do bloodwork on your baby. We had a very sick baby who was hospitalized for almost 5 months starting at 5 weeks of age. He eventually got to come home, but with "accessories" like an implanted broviac line and i.v. machine.
The nightmare went on for what seemed like an eternity - 2 years. That was 20 years ago.
Don't lose hope. Don't stop fighting. You are your child's best advocate. And most important: you and your husband know your child best. Better than the doctors, better than the nurses, better than anyone. If something does not feel right, trust yourself - you are probably right.
Hang in there. It looks like there are a lot of people pulling for you and your beautiful family. Count me as one of them.
I know only a teeny bit how horrible that is. I know that I hate seeing my baby in pain. Your mommy instinct is working well. I hope you are soon to find an answer.
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