It seems like we have waited forever for this day! We decided to keep Heidi home from school to stay with Hilary because waking up a three year old before she is ready is not advisable. We had to leave at 7:30 to be there by 8:30 and some days Hilary will sleep until 9:30 or 10:00. Heidi was very happy to stay home. I know mother of the year here I come! When we woke up this morning Tatum was sudsing and snotting so the suctioning began as soon as we got going this morning. We quickly got ready and loaded and we were on our way. I was really nervous that we were going to get up there and they would say that she didn't qualify or they would not be able to help us. We got to the hospital right on time and found the office we were to go to. We checked in and they brought us back to the rehab room. The nurse started checking us in and going through Tatum's history when the doctor came in. She was super nice and direct and talked us through our options. I was sure that we would just be evaluated today, but she just took our word for it that Tatum had horrible secretions. She actually just trusted us as her parents. We have had the most amazing specialists. They have all been very respectful of listening to the parents perspective. My pediatrician always has been that way, but outside of him and his staff, sometimes doctors don't listen to you. I expressed to the doctor my concerns about the medication and asked more questions about the injections. She answered and agreed with concerns and then she said, "I think she will tolerate the botox injections fine. I don't think she needs to be sedated and we can get the insurance approval and do them right now if you want". What? No red tape, no waiting, no testing, no questioning. It was amazing. Lance and I agreed that it would be the lowest risk option and we really needed to do something immediately. The doctor went to get the medication sent up and the forms ready.
As we were sitting there waiting we started looking around the room at all of the Disney movie characters on the wall. They were colored cut out laminated little figures of characters from all of the kids movies. Only there were a few that were out of place. They had put the frog from "Frog and the Princess" by itself and the princess was with the ants where it didn't belong. Then he noticed that "Rex" from "Toy Story" was by himself. You know what this means. Lance had to fix it!
Here we are waiting for the shots...Disney characters in the background.
We got home and settled Tatum into her bed. She took a great nap and did really well breathing and seizure wise. She woke up at about 6:00pm. She was awake for a few hours and she was smiley and alert and I only suctioned her a tiny bit on the surface. They say it will take a few days to see if it has helped, but she had a phenomenal afternoon and evening. I am very hopeful.
So many tender mercies today. The day went so much better than I could have imagined or worked out on my own. I am thankful and ever mindful that we are not doing this alone, we certainly have Heavenly assistance. I can only imagine what our family members who are on the other side are orchestrating for us. I feel that love. Grateful for good friends who bring meals right at the right time, who call at the right time, who just are thinking of us. Grateful for doctors who understand that time is not a gift we have right now and see the urgency to take care of certain issues. Grateful for kids who all helped each other today. Grateful for pictures. We got our big family picture back today. It is hanging in our hallway and it is beautiful. So happy to have a picture of our family, capturing this time together. Grateful I was able to relate our story to a friend who didn't know what was going on with Tatum without crying, since we were in Costco. Grateful for a good husband who is so helpful and attentive and is a good father. Grateful he has good people that he works with that allow him to miss work occasionally for appointments with Tates. Always grateful for Tatum and her smiles. There were many tonight and they are priceless.