I didn't have internet for the past several days and I am feeling so out of it! It is amazing how attached I have become to blogging and emailing. It gives me a sense of being connected to other adults, even when I am sitting on my couch in my pjs :) Mark went and bought a new wireless router tonight and now we are back in business!
Mark and I had a fantastic time away on Friday night. The hotel was beautiful! When we got there we found wine and cheese waiting for us in our room. After we enjoyed that we went for a walk down by the Grand River; some of the ArtPrize exhibits were still up so we got to view them for a second time. Then we freshened up and got ready for a fancy dinner in the hotel. At this restaurant they served sushi, marlin, suckling pig, rabbit... the list of crazy foods go on... but I ordered steak to be safe :) It was the best steak I have ever tasted though, so I am very happy with my decision. After dinner we sat in the hot tub and tried out the eucalyptus steam room, which felt a little claustrophobic to me, but Mark liked it. The next morning we enjoyed a complimentary breakfast buffet and I got a hour massage in the hotel spa. What a great night at a perfect time; after so much medical junk these past couple of weeks, I really enjoyed the break with my hubby.
A quick medical update... Charlie is doing great after his tubs. About 2 hours after the procedure he seemed back to his old cheerful self. Today is the first day we didn't give Ruby any Vigabatrin. So far, she hasn't really had an increase in seizures which is good. She also seems more smiley and her muscle tone seems slightly improves... it is really too early to tell if this is from being off the Vigabatrin yet, but I will take it for now :)
We are kind of at a crossroads with Ruby's treatment. None of the typical medical stuff for infantile spasms has worked for her so we are researching some alternative therapies and treatments. There is still the possibility that another round of steroids would stop the seizures again for a while, but they were very hard on Ruby's body and on us so we are not sure if we are willing to go down that road again if it is only going to be a fix for a few months... tough decisions. We keep praying for guidance and wisdom and hope God will direct us down the right road.
4 comments:
So glad you and Mark could get away and be pampered! Praying for wisdom as you seek answers for Ruby...
So happy that you guys got away! It does sound like it was at a perfect time. We think of you guys often and are still praying for the kids! We're especially praying for guidance and peace for you!
so glad to hear that you guys had a nice time and were able to relax! cant wait to see you sunday and hear a little more about it!
Your night away sounds really really wonderful! What a treat! I'm glad to hear Charlie is doing well with the tubes. Hopefully they will keep him ear-infection free! :) I'm continuing to pray for Ruby as you watch and wait to see what changes come from weaning the Vigabatrin.
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