A few times a year Tim as had to go over to India for work. He was there all of last week. I am never sure who is happier when he gets back home. They all worked really late one night so that people could get back a little earlier. I am so glad that they did. They few people that did not leave early ended up getting stuck in India due to all the flights being cancelled/delayed with the winter storm over the weekend. When Tim got home Friday evening he came in, put down his bags, changed clothes and went right to snuggles with Casey. He had quite the adventure getting home this trip too. At one point we were not sure if he was going to get to the airport in time or not. Casey could hear me telling her nurse about him possibly being there a little longer and she was not happy. I saw this picture and it really looks like her and this was the face she had when she thought her daddy was delayed. It was too funny not to share.
This is Casey’s second year as a Girl Scout. She loves it! Cookie sales started last week and she is off to a great start. She missed Halloween this year due to tornadoes in the area so she was really excited about getting in her uniform and selling cookies to all of her MANY doctors. Yesterday we loaded up and went to the clinic near the hospital first. She stopped by Neuro, GI, Pulmonary and even her dentist bought some. The lab is in this building too and one of the girls that draws Casey’s blood was pretty excited to buy her cookies from Casey this year too. We then went next door to the hospital and Casey sold cookies to some of the therapists in out patient rehab as well as some of the nurses and staff in the specialty clinic then we went upstairs where she sold to some of the hospital administrators as well as some of her palliative team. We got back to the car and we were going to grab lunch then head to a few other clinics. Casey was done for the day though. She started having some trouble breathing and when this happens she can go from great to REALLY bad, REALLY fast. We had to get her home and spent the rest of the afternoon trying to get her settled. I ran back out this morning to deliver to some of the places that were waiting for her, but we will see if she is up for going back out next week to finish her deliveries herself. This weekend her and her troop are all going over to her great grandpa’s to sell cookies for a couple of hours. She loves to hang out with her great grandpa, so I am sure that will be a fun time.
We had a new nurse start last week. Hopefully she will be able to pick up on Casey pretty quick. She is only doing 1 day a week, but hopefully she can fill in when other nurses are off and maybe pick up some weekends from time to time too. One of our previous nurses will hopefully be back on weekends soon too.
Casey has a lot of medical supplies that she needs. Most of these items we get through a local DME that calls us each month to see what all we need and they get them sent right out. However, when we first set Casey up with home oxygen there was only 1 company that provided that in the area. With insurance and Medicaid all of the items related to oxygen (pulseox, cough assist, etc.) have to come through the same company as the oxygen. As Casey has gotten bigger we have needed more and more things from this company. Unlike the other one we use, they do not automate any type of order, I have to call in and do it all each month. Earlier this month I called to order 4 things, that’s not a lot. When I called the person that took the call placed the order for 2 of the 4 then transferred me to another department where that person took 1 of the remaining items. I was then forwarded again to a 3rd department to place an order for the 4th item. We were on hold for nearly 3 hours before finally just hanging up without completing the order. We got the first 2 items, but the other items never came. I was so angry about how bad this company is that I called Casey’s pulmonologist to see what else we could do. They agreed that the other company was not doing a good job and that they would want to change if they were me too. They have a really good relationship with another DME that now covered our area and they took care of everything!!! Casey’s doctors office worked with the new DME to get all of the new equipment out and they set up a monthly order. I have 1 person to call if we need anything. I am so pleased with Cook Children’s. I hope that reorders in the coming months is as smooth as our initial setup. We are so happy to be done with Apria (AKA – Crapria, a common nickname for this company in the special needs community). Not only do we have a better company now, but we ended up getting some better equipment as well. The only bad thing is that Cooks does not offer the little bitty B tanks that we really like. They do have some that are still easily portable though, so all is good.
Casey’s new wheelchair has been ordered and we hope to see it by late spring. The company that ordered her chair is also working on getting some pillows and pads to help keep her skin safe since she has been very intolerant of being re-positioned lately.
Lots of stuff going on, but overall things are good. We are starting to plan Casey’s big 10th birthday. She is growing WAY too fast. I think that is about it for updates right now. If you want to buy cookies she is selling them online this year too. If you are local, let me know and we can arrange delivery. If you are not, but want to get some cookies the link is below.