Typically, Frankie is a great sleeper. When you lay him down for a nap he will play until he falls asleep, no issues. He also sleeps through the night, no issues.
Saturday, I had to rock Frankie to sleep for a nap, drive him in the car to fall asleep in the evening (he just kept crying and crying in his bed) and he woke for several hours crying. Sunday was a repeat. Very short naps, waking a lot at night. Joe and I feel so awful. We tried any and everything possible. As soon as we would lay him down he would cry. Like he was afraid they would do something to him or wake him to poke at him. It's heartbreaking. All we could do is reassure Frankie that we were home and we were here for him. Yesterday, he fell right asleep for a nap and talked himself to sleep at night and slept! He slept GOOD! He woke one time at 115am for a split second. I put his blanket on him and he went back to sleep. I'm praying for his sake, that we are getting through the sleeping troubles and that he's no longer afraid. I mean, he did just go through a traumatic event.
Frankie has been even busier than he used to be, if you can believe that! He's pulling up on EVERYTHING! Scaling the walls! He's extremely close to walking. He has more energy, stamina and less fear of doing new things! Frankie has also been more in to eating by mouth! Joe and I are so excited! He will try anything and put food in his mouth! Yay! Praying this stays this way and we are on our way to saying goodbye to the ng tube! HOPE, HOPE, HOPE!
Frankie still has bruising from his Iv's and central line. His incision is looking great! By next week we won't have to bandage it up anymore.
On October 11th, we have Frankie's follow up appointment with cardiology and the 16th we go see his pediatrician.
Overall, he's doing amazing. I just can't believe it. He's an absolute inspiration and is incredibly strong and resilient.
Joe, Frankie and I are beyond thankful for all of you. We wouldn't be able to get through any of this without all of your love, prayers and support. From the bottom of our hearts, THANK YOU!
I will keep everyone posted with anything new and most certainly after his follow up appointments.
Much love!
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