We started off with an early rise from Eden, 8 am, considering she falls asleep around 12 am and usually wakes during the night in pain, that is early. But she woke in a good mood, we watched My Little Pony (again, please help me!!!) and went down stairs to find a gift had arrived from the Kabers, of guess what, Little Ponies!! Wow, was Eden happy - see picture!!
We had PT of course at noon. Leslie is a pleasure. I enjoy chatting with her and she is great with Eden. For some one who has never worked with this procedure, she sure knows what she is doing. Shout out to Barb Wilen for recommending her. Therapy went well and then we were off to the races. Chris went into work but left at lunch, thanks to this blog his co-worker (hi Vasantha!!!) knew we were heading to MD today, and he made it out of the office on time. He beat me home by minutes. The kids were ready, and we climbed into the van to head down to Md. They really are confused though, they asked several times how long we are staying there, even though we told them repeatedly we are going home the same day.
The appt with Dr Standard was 3:30, I think we got there closer to 4 pm, but that is ok per the front desk. We were warned of the wait, so we were prepared. I had the kids bring books, i-pods, i-touches, snacks, activities, you name it...we managed to pass the time. We saw several families we had met while staying there for three weeks, it is good to have friendly faces now. We were warned it was about two hours. There are computers in the waiting room for kids to play on, so Jacob was occupied the entire time. The girls and I did crafts and it passed pretty easily. We saw the Dr around 5:30, it would have been sooner but he spent a good amount of time with the patient before us. That makes me glad to know he gives each family the time they need. He was happy with her pin sites and said we are doing an excellent job cleaning and caring for them. Ayla was in the exam room so we told him and his assistant it was Ayla's handy work and they were impressed. We are able to stop the antibiotics so Eden will only be on the pain medication now. She has gotten ok with taking it. She knows it helps the pain go away, and will take it, but it takes 30 min to kick in, but I am ok with letting her be the judge of when she needs it. For now, I do still make her take some before PT though.
The update you all really want...There was more growth and the new bone looks good. She is at 2 cm now, again we are aiming for 7 cm. We discussed the pain and he basically said we can make the call to turn 3 or 4 times a day. 4 turns gives us a full mm/day. It may be nerve pain, or it may be regular pain from the process since it is only at night. He trusts us to determine what is best for Eden and us. Dr Standard very much talks about the whole family in this process. He said if she is in less pain and can sleep better doing three turns, which allows us to sleep, he is all for it. It may set us back a few days in the long run, but then again if she is in less pain she may be able to get to 7 cm more easily and comfortably. If she starts to be in too much pain, we have to stop no matter how much length we have gained, or are hoping to gain. So, I get to play Dr...this should be fun.
We were out of the hospital just around 6. Chris picked up a new Rx for the pain meds, we want to be sure we have it hand and we are not scheduled for another visit until Aug 23. Then we headed to this amazing mall, Arundel Mall. Boy does it make me want to shop! We started at Dave and Busters for dinner, the kids had a blast! Even Eden got in on the fun. But I will say this, skeeball is not her game. Whack the mole was more her speed. We spent a good amount of time there. We had a coupon book and there was a buy one croc get one free, so we got new crocs for all the kids, we also went back to the lego store and Jacob and Adina picked up something (thank you Sabba and Savta for giving the kids spending money) and the best art, drum roll please...they had a pillow pet stand. The kids have been begging!!! So the girls used their money from their grandparents and were all so excited to get pillow pets. I must tell you, the things are very soft!!! We were just about the last ones in the mall when it closed at 9:30. Then into the car for the trek home, in the parking lot the kids told us they had a great night. I am happy we can make this chaos fun for them. We had a movie from netflix, so I sat in the back with them - they always enjoy that (the movie was Princess & the Frog) and watched it on the ride home, it was a cute movie.
But, by the end of the ride little Eden really was uncomfortable and was crying. I held her foot for her, and managed to give her some pain meds but she was pretty unhappy. 11 pm is her witching hour - again, just like a new born, she has her fussy time. When we were about 15 min from home I could not stand it anymore so I took her out of her seat and held her. This helped comfort her and she passed out in my arms. The kids hate to see her like this, well, we all hate when she feels the pain. Each time I have to go over with them why she is in pain and why we are doing this. They care about her so much. I can say for sure my family has learned two important lessons from all of this:
- Even though this may be no picnic, many children and families have it far worse then we do
- Family first, we are all in this together, taking care of each other and supporting each other. I know this is some thing that will bond them all for life.
G'nite!!
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