Day +30...Thanking God for warm towels!!

Good evening everyone! Well, we are at day 4 at "home" and so far, so good. The medicine routine is almost perfected. After I am done writing this, I will be preparing all of the meds for the 7 pm doses. I think the hardest thing is making sure I have enough flushes ready for everything. I can't even begin to tell you how many I have gone through!! Last night, Mandy was here, and I had her prepare all of the flushes and inject the vitamins into the TPN. Then she administered all of the meds through his IV and then flushed them when she was done!! She is going to nursing school and thought it was really cool!! Plus, she did an awesome job! She has already learned so much from Dylan, and it makes her want to be a nurse that much more. She cannot wait to take care of people and be an amazing nurse just like the ones we have been blessed with!!

Speaking of great nurses, one of our favorites from Phoenix, Alison, was in Tucson for the weekend, and came an visited us yesterday!! Isn't that sweet??? It was really great to see her and it really made an impact on me....and of course baby D (even though he was asleep, he loved seeing her!! ha!). The clinic that we go to everyday is just down the hall from the place where we have been staying the past 6 weeks, so I am able to go over and talk to D's nurses. Everyone at UMC has been so supportive and helpful. I even have nurses bringing me seasons of their favorite shows!! Thanks to Kelly, I am now officially addicted to ER--currently on season 4--only 11 more to go!! And I will soon be hooked on Grey's anatomy, thanks to Taryn!! You guys are AWESOME!! We even received some DELICIOUS chocolate chip banana bread from Kathie!! We are sooooooo spoiled and blessed!

This weekend has been wonderful with my sisters here. It's like having my own personal chef and personal organizer for the weekend. Mellissa made yummy Olive Garden soup last night, along with some chicken tortilla soup today that will be ready and waiting in the freezer for us when we need it. The next items on the menu are stuffed shells and pot stickers....Mel, you are AWESOME!! Mandy is the organizer, and when she saw the mountains of medical products, she looked like a kid in a candy store! Now, all of the syringes, needles, and medicines are neatly organized with coordinating labels!! The condo is clean, laundry is done, and all of the bags and boxes are unpacked!! What a stress reliever!! I love you guys!!!!!

Today was day 3 in the clinic, and since Dylan did not need any transfusions, we were in and out of there in 3 1/2 hours!! Not too shabby. Tomorrow is going to be a MUCH longer day. Dr G wants him to get an MRI to just double check everything and make sure that there are not any problems from some of the stronger meds. MRI means anesthesia :( I am not looking forward to it, but it is good for him to make sure that there is nothing abnormal. Please pray that D handles the anesthesia well and that it does not make him feel worse than he already does. He seems to be feeling a little bit better. He is not as crabby and is actually awake without crying for short periods of time. We have found a solution to get him to sleep. WARM towels or blankets!! It's like magic!! The second you wrap him in a warm towel, he immediately calms down and passes out....it's actually quite funny!! I am thankful that we have found a way to make him feel comfortable without having to drug him up all of the time. He still needs to have Atavan at night sometimes to calm down and control his pain, but overall, he has been needing less pain meds. He has been getting some good sleep the past couple of nights also!! And that means I am too!! YAY!! On friday night, he slept from 1:00am-8:00am and we had to wake him up to go to clinic. I thought it was a fluke and was sure it was not possible to happen again, but it did! Last night he slept from 12:00am-7:00am.....what a blessing!! Thank you Lord for letting us sleep well!! We are trying to get into as much of a routine as possible. After meds are done, he gets his bath, and then his line care. Usually after that, he is awake for about an hour and then I lay him in his pack'n'play. He is awake when I lay him down and he usually fusses for about 5 minutes and then falls asleep. I am thankful that he is able to go to sleep on his own for now, and that he is in his own bed!!! This way, we both get sleep!!

Well, I better get started on the med prep right now :) Thank you for your continued prayers!! And please keep Erik in your prayers. He is home alone, and sick, and missing his family and there is not ANYTHING I can do to help him :( It's tough and we miss him!!

Goodnight