Well, it is the first day of November, and the beginning of our sixth week in lovely Pittsburgh, PA. Thanks to the surprising and seemingly miraculous progress that Isabella has made over the past few days, this week is starting out a LOT better than last week. I am truly amazed at the difference one week has made in her healing process. If you had asked me if we could ever be at this point last week, I would have had a pretty negative response. I should never have underestimated the power of Bella. She stuns us all each and every day with her resilience, strength, and will to heal. Each day she does something new, and it is a bit like watching an a child go from being a helpless infant to crazy toddler within the span of one week. Just a moment ago she turned into a crawling position and tried to reach into her toybox with one arm, supporting her body weight with just the other arm. This may sound pretty simple, but this is coming from the little girl who couldn't even support the weight of her own head on Thursday.
One negative issue that has arisen out of Bella's wonderful progress, is that I am less worried about her. This may sound positive, but it has freed up more room in my brain to miss Addie and Lily (and Steve, of course). I have kind of been stalking them on the phone and via Skype. It was really hard not being with them for Halloween yesterday, as it was the first holiday that I have ever been away from them. Thankfully they are coming here on Wednesday night, and will be here through Sunday. Addie and I have been counting down the hours together, and I am not sure which one of us is more excited about their visit. If we are discharged to the RMH it will allow me to snuggle with them 24/7 the whole time they are here. Sorry Steve, you are on the couch. The girls will be sleeping in bed with me!
As a part of the process of preparing for discharge, Bella is being transitioned to oral meds instead of i.v. meds, and her pain meds are being weaned. The weaning is a slower process, as we do not want her to experience withdrawal after having been on some of the narcotics for so long. The good news is that her doctors have been able to cut her dilaudid in half, as well as stretch out the time between doses. She went 9.5 hours without it overnight, and we are going to try moving to every 12 hours starting today (this is from every 4 hours just 2 days ago). They are also cutting her methadone slowly, too. She is responding pretty well to all of the changes, and it makes me happy that she is not so drugged all of the time any more. Bella is also eating more, which is enabling her doctors to take her off her TPN (i.v. nutrition) for 6 hours a day. For those six hours she isn't attached to anything! We celebrated this yesterday by spinning around in circles! She is eating more today than yesterday, and we will keep increasing the quantity over the next couple of days, hopefully eliminating the need for the TPN entirely.
So Bella is making terrific progress, and I see more of the same in her future. We are so proud of her, and we're starting to see the light at the end of the tunnel. Though, I don't know, Pittsburgh is sounding pretty balmy compared to snowy Vermont. You all may have to drag us back north when it's time!
Hey Court! We are all super proud of Bella. She is amazing and is clearly the toughest munchkin in the world. But...we are also very proud of you. Yes, any other Mom in your situation would be there with their child. But, you go above and beyond just "being" there with Bella. Your attitude, love, and strength has trickled down to your little girl and as a result...she is making incredible strides. So, as you celerate Bella's continued success, dont forget to pat yourself on your back. Because a lot of her success is because of you. Love you, Aunt Katie
ReplyDeleteWe are so excited with this amazing news! It is not surprising that Bella is so strong because looking at you and Steve as parents it is very apparent where her strength comes from. Bella looks so healthy and happy and we will pray for continued progress everyday!! We are all proud of you, Steve and the girls. Sending our love. Aunt Jo and Uncle Kim
ReplyDeleteAMAZING!!!!!!! Wonderful!!!!!!! Words cannot express the happiness and joy we all feel for you and your family. Bella is one lucky little girl and what a fighter she is!!! Hey those eyes are going to melt alot of hearts. Poor Steve will have a hay day when all the girls are dating age. You and your family have a fun reunion this week...enjoy every moment and last but not least try to catch up on all that sleep you have missed for all these weeks okay. I admire you more and more Keep the Faith! Becky
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