Friday, July 1, 2016

How about an update

Be forewarned, this post is going to perhaps sound complain-y...not my's just the day in an day out life I lead.  Is it frusrtrating? yes. Does it reduce me to tears a lot?  Yes.  Do I still have perspective?  Yes.  Is God still good and in control?  YES YES YES.  So, here I go...

Feeding bag drama: about a year ago our homecare company started sending newly designed feeding bags. Almost right out the gate we found that they were defective.  They leaked...A LOT.  A TON actually, ruining the first mattress Matt and I have bought in our marriage.  (which we saved for and paid for a quality mattress and covered with a very expensive mattress protector) Now, mattress protectors don't cover sides of your bed...which is where the leaking lands as well tas the flooring.  I, of course called the HCC and stated the problem...repeatedly I made these calls until their solution was to send us an entirely different pump and bag system...FYI--- did not fly ( and I won't even tell you what they are telling me now in regards to that decision)  In case you aren't following along, Lillian is on a feeding ALL night.  So constant dripping ALL night and if she moves in her sleep, guess what?  the tubing moves so there's an attempt to catch the mess, but you can only do what you can do.  So basically, the homecare company reports the issue to the manufacturer.  Three months ago they start sending the old bags again.  The ones that do NOT leak.  I'm ecsatic.  Last month we got the defective bags again and her bed gets soaked and nasty. just about did me in.  I called, I cried...I asked politely for some it turns out, the maufacturer stopped making the bags and the homecare company sent what was left in stock.  Home care company blames manufacturer, manufacturer blames HCC, and we are left holding the bag, literally, with two runined mattresses.  No accuntability...and us with NO choices.  Now, we are not independently wealthy....we have a budget we follow and stick to it for the most part...I don't budget for new mattresses and we don't ahve the ability just to run out and replace 1500.00 + in new mattresses.  I'm frustrated.  The manufacturer told me to file a claim with my homeowners insurance...and I should have reported this issue sooner.  I DID!  They took my name and number and I have not heard one word back.  3 weeks ago.  I reported all this to the HCC, they say they will make sure someone contacts us.  We pay thousands of dollars for those bags.  Need I say more and when I said that the HCC rep said "well, insurance pays that" HELLO???  WHo is paying the insurance rates???  US.  There are SO many more details in this story, but you get the gist I hope.

It's a vicious circle in my mind.  Rough things happen, we don't have money to fix them, and a whole circle of self loathing starts in my mind.

We have been *trying* to get new glasses for Lillian since February.  Long story short, multiple trips in to look at frames that have been ordered in, finally pick a pair I'm not happy with that are too big for her in every way. Sit crooked on her face because  the anatomy of her ears is very unlevel and over a houndred dollars later plus what insurance pays this is what I'm left with.  I just don't think it should be that hard people.  And it makes me SAD and frustrated and now sitting here in tears.  Our eye doctor is a fantastic guy...but his office operates so poorly...I just don't think I can keep going there.  We've been there for over 11 years. I'm done in.  Done.

The other girls have had a new dentist here in town and as the appointments drew near I foumd myself dreading it. Like, actually feeling anxiety over going. Couldn't figure out why except I think in general, I'm just tired of doctor's offices and the bad experiences or outcomes we have in them.  The appointments did go fine and noone had cavities..HOORAH!

I have found my legs back on my bike at night which does help alleviate some stress. It's good to have friends to ride with most nights as my own thoughts and prayers generally lead to tears which makes it hard to see while mantra, don't cry and ride. HA!

  Our 16 year old is driving and we just had her "heart interest aka teenage boy" to dinner last night.  I'm just not ready for her to date yet.  Time is slipping through my hands.  Two off to college in the fall, two in highschool...*shaking my head*

Lillian is doing well, although today I see she has a bit of a runny nose.  So pray that doesn't manifest into anything.  She and Ezekiel are bossom buddies for the most part, but some days are me putting out lots of fires.  A friend recently gave us a weighted lap belt to see if that will help with some of her sensory issues and it seems to be helping, thank the Lord and Rachel too for lending it.  Am thinking purchasing a blanket woudl be a benefit but something we will need to save for as they are very expensive.

 I think that about wraps things up for now. ( if you  have managed to stay with this rambling update) Life goes on and we are attempting to enjoy the summer.  Hope you are as well.  Wrap your arms around your babies and hold on a little longer. Be thankful for their excellent health and remember, if today is hard,  tomorrow is a gift and not something we are promised. Be blessed.