One foot in front of the other.

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…

terra

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Comments

  1. Hey T$!
    I’m so glad to see that you’re switching pediatricians. I am pretty sure that I would be torching down that entire facility, but whatever, that’s just me. (I have this crazy “mother bear” side of me that just comes out sometimes, I’ll have to tell you about the b-day party I got kicked out of sometime. It’s alot to type though!) ANYWAYS…
    I have been thinking about you guys all the way down from Georgia and praying for your whole entire precious family. ๐Ÿ™‚ I am so glad that Ben is as awesome as he is!! He sounds amazing and so helpful!! You are blessed girl, I know you already know that! ๐Ÿ™‚ I even thought about you in church last Sunday morning. Our pastor was preaching about how even though Jesus almost always had large crowds of people around him, He still took the time and noticed “the one” who needed Him. The woman who touched the hem of his garment, the widow whose son had just died, the man with leprasy (spelling? whatever!) etc. etc.
    It just made me think of sweet Kendall…in this whole big world of billions of people, He hears our prayers and cries for one tiny little baby…your baby! And more importantly…HIS baby!!!
    Love you girl, I could go on and on but I have to get off this computer.
    Love the page by the way…tres chic! ๐Ÿ™‚

  2. Holy cow on the new design! You are one amazing woman!

    Praying and praying and praying for you all as you keep hauling down this tough road.

  3. (((Terra))). That is a hug. I’ll give you a real one on Friday. What a bumpy ride you are on. I’m pretty good at getting what I want on a phone call, if you could use any assistance in that area. ๐Ÿ™‚

  4. Terra,

    I try to read when I have a free moment but this last week has been crazy for us. Not nearly as crazy as your life but still crazy in our own way. I have been praying for your family and talking about you to my husband and best friend. I have 2 weeks till we find out about Gabe and his ears. He has been doing balloon therapy for the past 2 weeks and we are praying that it keeps him from having surgery. His daycare has been great about keeping up with his therapy twice a day there too. We are packing our house and moving in with my mom in April. She needs the extra income and we need to save some money with Brad not working. I hope it isn’t too long but it is looking that way. We need time to save for a new van (Brad’s is on it’s last leg) and a house of our own.
    I love your new page and I am tempted to steal it if I can. I am really happy that your family is together sleeping under one roof. I look forward to your next post. I will continue to pray for you and your family.

    Carmen

  5. Hi, Terra. I love your new blog–it’s so you! Still praying for you, Kendall, and your family. I missed seeing you the other night. Maybe soon…
    Faith ๐Ÿ™‚
    Let me know if you need Anything!!!!

  6. I am Loving this new design! Beautimous…
    I can’t wait until Kendall is posing for uber-cute photos on cardboard boxes with her sisters. She will be a nice pudgy baby in no time at all! ๐Ÿ™‚
    Love you lots and lots!!

  7. Okay yeah I’m finally gonna kick in with a comment…Ive been reading and praying for awhile now. I miss you girl!!! I just didn’t know what to say! I am so glad to hear that Kendall is doing so much better and I’ll continue to pray for her and for you to have superhuman mommy special powers!! I love ya and miss ya. I’m on facebook too..tend to hang out there WAY too much but I’ve tried to find you with no luck, so try to find me okay? I’m there under Amy Carey.

    Love ya girlie!!!

  8. no one comments on my blog either but the counter keeps going up… You should leave me a comment and I’ll leave you a comment and we can virtually pat each other’s backs.

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