I do not know how this happened. How I became a mommy to a 9 year old.
Do i even remember a time when I was not “mommy” to someone"? Hardly.
I cannot believe that my big girl will be 9 years old tomorrow.
Tonight we are curled up in a big comfy hotel bed, out for just some special mommy and kealey time for her birthday. She is literally soaking up the alone time like a sponge. It makes me both sad and happy – sad that she so obviously needs more of me than she gets right now, but happy that we can have this time together for good memories. It is one nice last calm before the storm of the craziness of this week.
Ben leaves on Monday for two back to back out of state trips. Kendall’s antibiotic/tpn schedule requires excel spreadsheets with multiple functions to be able to understand. (And ok, that might be a slight exaggeration. I know so many of my special needs momma friends have things WAY crazier – and I admire you for it!) Our nurse this week is not of a level that would allow her to do anything with Kendall’s IV lines, so all of that care will still be solely up to me, on top of the needs of the other three. In short – i may be speaking only in gibberish rocking in the corner by the time Ben comes home next sunday.
This is so all over the map – I am still so exhausted. I meant only to update to let you all know that we DId make it home, and it was a few hours of brutality while we waited for Kendall’s tpn to be delivered FIVE hours after we got home, including all the antibiotics we need to run. This would have been fine except you can’t infuse stuff that has been sitting on ice in a cold van for hours. so then we had to wait for it to warm up, have our visiting nurse change the dressing and caps on Kendall’s picc lines (she was SO not a fan), but she was SO happy to finally be in her own bed with her own blankets and pillow. I am pretty sure she did not change position at all all nite.
She is still fighting these fevers – not horrible raging, but definitely higher than “low grade”. We are trying to give her benadryl in her j-tube before she receives doses of her antibiotic to see if that is the key – thus far we’ve had mixed results. I just think her body is working so hard right now to be restored to health. But it IS fighting on its own – SHE is fighting because of the prayers of so many of you. She is so very happy to be home, where “hotgog” can be on the tv on demand. And she can continue to yell at all of us from her perch on the couch where she is tethered by her 4-5 lines coming out of her body to various machines and bags. It will be a few weeks I think till she’s back anywhere near her baseline, but she will get there.
she continues to prove to us all what “fighting” really means.
Speaking of – I am fighting to keep my eyes open at the moment. Hopefully i will have a more cohesive update tomorrow!
thank you to all of you for everything. we would not be suriving if it weren’t for those of you literally and figuratively holding us up.