Plodding along. going through motions. hoping i don’t leave one of the 74 steps to proper IV infusion out or get them out of order and hep lock the IV off before i’ve saline flushed it. cereal for the girls, multiple clothing changes for kaylen, lunches made for kealey, paperwork signed for school, and insurance insurance insurance. You know the really old commercials for dunkin’ donuts? where the dude would trudge into work and mumble “gotta get up and make the donuts….”? yeah. I’m so there. I wish it were as easy as making donuts though!
I don’t mean to complain. In the grander scheme of life, things could be SO much worse. We really are blessed that Kendall’s issues are relatively short term, and that to the best of our knowledge, are under control and have a resolution at some point in time. Yesterday at her specialist appointment, i watched a mom heft her 14 or 15 year old son from the mini-van into his wheelchair without even batting an eye. And I was so instantly struck by how lucky we are. Sure it took me about 15 minutes to get her tubes and wires all situated in her little backpack and hooked into the stroller, but this is but a temporary inconvenience.
We will be ok. I just keep telling myself that. We’re gonna be ok.
Today I actually managed life pretty well, in SPITE of our home health nurse coming for her check-up on Kendall and getting sick in our bathroom right after she had changed the IV dressing. Awesome. THANKS BE TO GOD and whomever the wonderful person is who sent me the can O Lysol. Cause it is all gone now!!! I think the smell of lysol may now be perma-branded into the counters and the downstairs bathroom. I just could NOT believe that she just up and upchucked like that! Kealey asked me “Did she make it into the toilet?” Um, yes. I believe so. Most adults don’t just puke where they’re standing like you and your sister do. But I guess you never know.
so after that excitement, we got into a pretty nice rhythm of the day. Kaylen is clearly needing a LOT more mommy time in order to stay semi-sane, and its just really hard to focus solely on her like she would like. I think me being gone for a week and a half really didn’t help her out much in this stage of separation anxiety to begin with. But we’ll catch up. In a few weeks, life will look a whole lot different than it does now.
I feel like I am on the phone NON-STOP all day every day too. Our insurance is wonderful, but they take a little gentle pushing to keep them on track. So i am calling them, calling our OLD pediatrician, trying to find a new pediatrician, trying to schedule Kendall’s therapies, calling the Home Health care company for help, trying to make a grocery list, trying to plan for dinner (it didn’t happen! good thing we all like pizza! – and all the wonderful meals that have been broughten? We eat every last crumb of them! so thank you all!!!) – Anyways – all that whining to say – it’s been a long day. I did manage to find a few minutes to myself to work on sprucin’ up the bloggity-roo here – I know you like my new digs, right!?!?!? We’ll see how long this lasts. I was just proud of myself for figuring it all out. So be impressed with my template installing mad-html skills!!!
I am hopeful that in spite of almost killing my daughter with their extreme negligence, that I will FINALLY get my letter from them tomorrow stating that Kendall needs her uber-expensive formula out of medical necessity. it has taken two days of calling three times a day to finally get to this point (where they are writing it). The nurse had the gall to ask me if Kendall needed any followup care at their office after her hospitalization. SO MANY words were coming to mind that I couldn’t even respond! Umm, no thanks. Next time i want to be ignored and have my child neglected i’ll find different people to pay $950 to for that privilege. Just send the letter please thanks! So much frustration pent up about this issue that I think I need to go …. i do’nt know. clean a closet or something. channel that negative energy! Anyways – please pray that they send the letter tomorrow in time for me to actually get it to the insurance company so that we can get a determination on whether they will cover Kendall’s formula costs. She is on a VERY expensive formula due to her failure to thrive/milk protein allergy issues, and in spite of my continued efforts at pumping, we are still having to mix her LARGE batches of formula mixed up to 24 cal/oz (essentially using almost twice as much formula per bottle). It’s basically costing us $30/3 days to feed her. And praise God for some kind souls who are working their connections to get us as many samples of this stuff as possible – but I know that can’t last.
At least the formula/NG feedings seem to be helping since she had gained 9 OUNCES at her appointment yesterday! After steadily losing weight the entire time in the hospital – she finally kicked it into high gear and is GAINING like a champ! She is clearly feeling TONS better. She just smiles SO much at us now, and actually rests so peacefully. It’s like we FINALLY have our baby here with us – it just took her 12 and a half months to get here!
Well my wall is hit for tonite i think. It’s been one of those days where clearly doing “nothing” has completely zapped me.
Thank you all so much for your continued prayers. I am so amazed to see how far reaching my little blog has become, and so touched to “see” you all visiting (big brother is always watching!) – even if you DON’T leave me comments!
May God bless you and your families all tonite.
Gotta go make some more donuts…