Sorry I haven't updated!! I feel like I have said that a lot lately. It has been a crazy past few weeks. Let's see, I left off that we were at the hospital getting MRIs. Well, Kay & Mason got them done, had no issues. Once Again.... North Shore Hospital is outstanding!!! The kids were transferred upstairs to the pediatric floor to fully wake up from anesthesia. The Child Life department kept Abby busy with crafts, while she waited. Then Mason & Kaylie got to join in on the fun too.
While waiting, I emailed Dr. Rekate, to let him know we had made it in, and the kids were currently getting their MRIs, and what he wanted us to do, since TCI was still without power at that time. He immediately emailed me back, and said we could meet at the hospital the next day.
The next day (Friday), we went back to the hospital to meet Dr. Rekate. When we saw him, he explained that Kaylie's MRI looked great, asked how she had been feeling, and any symptoms. He was very pleased how well she was recovering, and how the incision was healing. Ben & I were very pleased to hear all this, especially after what happened on our trip there. Something I had left out in the last post. On our way here, we had stopped off at a restaurant for dinner, and Kaylie was sitting in a chair, fell out backwards and hit the back of her head (the incision area) on a wooden window seal. Ben & I went crazy... I am sure the people in the restaurant thought we were nuts. All I kept thinking is that we had worked so hard this past 3 months, on protecting her head... and bam... she falls out a chair. She was "OK" that night, the site turned really red, but I knew to watch for concussion type symptoms. Luckily none happened, and her MRI showed no damage. But boy, what a scare.
Mason.... Dr. Rekate talked to us that he does have the Basilar, but none of the nerves were being pressed on... which was a good sign. He asked several times if he had headaches... like holding his head, or rocking (signs of headaches with kids that don't communicate that well.) Mason doesn't do any of those things. We talked about his speech, and he wants us to increase therapy to at least two times a week. Dr. Rekate told us he doesn't have a lot of answers for Mason right now... that he is a special case, to which it will be a watch and see. He does not want to do a Fusion surgery on him at this age, for not a lot of symptoms. Because that would limit some neck mobility.
Dr. Rekate wants to see us in about a year and a half to two years, with both kids getting new MRI scans, and seeing were each is at. BUT, if Mason does not start to improve in his speech in the next year, we may need to think about other options. And of course if either one has symptoms that come up... to contact him immediately.
Dr. Rekate also looked over Ben's MRI again, we talked on ways to help Ben with his headaches.
So... All GREAT news!!! We couldn't have been happier. As soon as we left the hospital, we went back to the Ronald McDonald House cleaned up, packed up, and checked out!!! Gas in Long Island had started to become scarce, and we only had a half of a tank left, knew it was enough to get back to Philly, to stay with Ben's dad, then we could get gas in PA. We had heard from others at the RMH that friends had waited in lines for gas for 3 hours... and never got any. We didn't want to take that chance, run out, and get stuck there. So we headed back to Philly!
When we got to Philly, there was still no power, but they had gas. Later that night, Ben's dad got there power back. So did Ben's brother & family in Quakertown. Since the power came back, Halloween was on for the following night. Saturday we headed back to Quakertown, so the kids could go trick-or-treating with their cousins. They had a great time!
Then Sunday we headed to Pittsburgh, Pa to see Ben's Aunt, we had a great visit there. Then we headed back home to Oklahoma!!! We got in Wed. evening. I kept the girls out the rest of the week, we needed the sleep on Thur. Then today Abby and Mason had a few doctors appointments... nothing big, just yearlies, and Abby had an eye exam too.
We are so glad to be home, and even more so... I am so glad that I feel like our lives may get back to normal for awhile. No more frequent doctors appointments or traveling. I can also finally focus more on school, and replan out my next few years of school, and when I plan to apply for the Nursing Program.
Something I have learned out of all this, is that time with family really matters the most. We all live such busy lives, and I think sometimes we miss out on things because we are so preoccupied with jobs, school, after school activities, ... and so on. When Kay was dx with all this, our everyday life was so crazy... I was taking 13 hours of school, the kids were in activities, Ben was always busy with work. We were forced to slow things down... which made me look at the big picture. I have made myself stop worrying when things are going to get done, and have also learned its not a race, nor are we in a hurry. So as you read this.... be sure to look at the big picture, you never know when something is going to interrupt your life, and change it forever.
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