After speaking to Kadence's pediatrician we decided to email Kadence's surgeon. We expressed our need to get a back up plan and asked if he knew another surgeon who could do the same type of rod. We didn't know if we should really expect a reply because he just got back from him medical leave and I'm sure he is swamped and overwhelmed. Well after 5 days we decided to start calling our care coordinator, Angie. (Yes, we have officially turned into "those" parents) We left a few messages and this afternoon she gave us a call back. She told me not to panic because nothing was for sure yet. I then explained that was my exact reason for panicking. She then said that she is 99% sure that Dr D'Astous would be able to do Kadence's surgeries and that we should have no problem keeping the same dates. She said that Dr. D'Astous has been doing really well in the clinic and has assisted a little in surgery. I asked what would happen if he couldn't do her surgeries. She explained another surgeon would take over. She said that Dr D'Astous has trained him how to do the same surgeries. She said it would be more likely that both surgeons would be in the operating room if D'Astous wasn't up to doing the full surgery by himself. YAY YAY YAY!!!! We now have a plan AND a back up plan! I can't express how overwhelmingly comforting that is for David and I! We seriously are so relieved. We don't have to travel out of state, we can stick with our surgeon (or another that he trusts), we can stay at Ronald McDonalds, we can be close to family, Kadence doesn't have to wait much longer to get done what she needs so desperately......the list just goes on and on. I am truly grateful and feeling so blessed right now. I am bursting with happiness at this point! So despite freaking out for 2 weeks, everything is great! I can now sleep at night knowing that things will work out.
We also met with the dietitian this morning. We were hoping she would tell us more than just "put butter on everything" like all the others have in the past. She had some really really good advice for getting Kadence the fats and calories she needs. She taught us how to pack tons of calories into her meals, how to give her high fat food for breakfast and right before bed, etc. She told us that most kids eat around 1600 calories a day and we should aim for 3,000-3,300. She said not to worry or stress if we aren't because she will eat when she wants and we have absolutely no control over that. We can't make eating a chore or a negative experience. We have a lot of new things to try out and I'm hoping we'll see some major results pretty quickly. Here is round one of shopping and this is all for Kadence...
I realized right when I got home that I forgot a ton of stuff so we'll be going back to the store after dinner. We will be doing a lot of smoothies that have greek yogurt, half and half, ice cream and berries. We'll make pudding with cream instead of milk, cream cheese on toast/bagels, dehydrated fruits and lots of eggs! We'll then also be bulking up the regular day to day meals as well. We had to buy everything above in reduced fat/low fat as well so that Shelby can enjoy smoothies too! (Low fat yogurt, 1%milk, reduced fat ice cream, fat free pudding, etc) All in all we had a very informative and great day!
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