Wednesday, January 23, 2013

Charlotte's Web and a Crazy Mom

Lillian is recently loving Charlotte's Web.  We are watching it every night before bed.  It cracks me up when she giggles in the same places every time.  Like when Charlotte is telling Wilbur she doesn't eat the bugs she sucks their blood and Wilbur says yuck.  She cackles every time.  I was thinking two nights ago that I may have seen it a few too many times as I was starting to think things like, gee, Wilbur's kind of a whiner....and how did he learn the word objectionable just after he learned to speak.  (maybe a few too many viewings you think?)  She always has me fast forward through the slow song when he's sad about being killed.  Then, I got to thinking what a positive message there is in it for her in particular.  You know the part when the runt gosling is born and Wilbur breaks into the song, "we've got lots in common where it really counts" the song talks about the unimportant ways they are different, like the runt gosling as webbed feet and wilbur has hooves, but they both use them to move about.  I kept thinking what a positive message this is to my sweet little angel.  So, even though I can now almost recite the entire movie by heart, lol...I will watch it with her as long as she likes.

She is struggling  with her ears oozing which is causing her to cough.  I've also found that if she is off her pulmicort more than one day she is coughing badly with activity and just in general.  Dang asthma. We are scheduled for follow up with ENT in Feb.
 Did I report that I got  the IV gentamycin approved to get from our regular pharmacy? Of course, I had to make several phone calls and even after the PA letter came I had to call them and get it set straight. Woo hoo.  Course, I get one thing settled and another issue takes it's place.  Insurance has basically denied her speech therapy.  They will only approve 7 visits.  Time for appeals.  If I have to appeal it, it actually goes before a judge.  Kind of crazy, the letter even says I can get legal aid if need be.  Good grief.  I'm just praying for favor and that our therapist who has already asked for an administrative review will get what we are asking for.  Stressful.  We should have an answer in 7 days on the adm.  review if I understand the paperwork correctly. 

School is going well for her.  She has a lot of trouble with attention span and her OT at rehab is starting to make reference that we may need to dig into that deeper.  Not sure what that means, but it makes me feel edgy.

My darling girl has dozed off and it's time for me to head to bed.  Good timing as I will not have to hold back my tears as Wilbur is at the fair now and.. well... if you've seen the movie you know that Charlotte is saying goodbye soon.  *sniffles*

Thursday, January 17, 2013

Tense day

Today we met with a CVS to resolve our "dispute".  I guess I'm no longer at liberty to discuss details, but if you read on back you can find out what I'm talking about.  I had so much trouble falling asleep last night as I considered the choices I've made in regards to the situation. 

First of all, I'm angry with myself.  I know it's not my fault. BUT, I work really hard to manage her illnesses at home.  As a parent of a medically fragile, special needs child, I weigh all the pros and cons of taking her to a doctor or a hospital. In hindsight, I think I'm not always picking the lesser of two evils. 

Secondly, I'm glad it's resolved, but it doesn't stop my heart from feeling the pain of the difficulties she faces because of the negligence of the very institutions we depend on to help care for her.  It is so unfair to her.  It breaks my heart to be helpless. 

Tonight, I brought her back to her own bed to get her back to sleeping here.  I look for it to be a long sleepless night as she will likely wake up in a few hours and want me.  Oddly, in my bed she sleeps all night, so I'm not sure what wakes her in the room she slept in for a year and a half with no problems. 
She is battling snot in a major way and she even started wheezing tonight...which you KNOW it not a good thing.  I hate wheezing, have I ever said that before?

Wednesday, January 9, 2013


I felt so positive.  Yesterday.  Until about 2pm, while washing dishes I managed to slice my thumb to what felt like the bone.  (see, no good comes from Got it under control, but seriously felt like I need stitches.  Problem, I'm not showered...not even dressed.  How am I even going to dress without using my right thumb???  Anyway, I bandaged myself up finally and got ready for the day.  Lillian has school on Tuesday and Wednesdays out of town.  We swung by the pharmacy on the way home only to find the script I dropped off the day before had not been ordered or filled.  They have me sitting there waiting for half an hour before they let me in on it then proceed to tell me its going to cost around 100.00. And they borrowed this amount from the hospital and I'll have to come back for the rest.   Hello?  What about our insurance??  Well, today I've spent the day making phone calls getting letters written and calling the pharmacy and  Why is it always always ALWAYS a battle?  We pay and pay for insurance then we have  to jump through one million hooops to get it to pay.  Did you know I have to give a count of how many bags, tubes, formula cans I have before insurance will allow a feeding order to be sent???  NUTS.  I mean do they really think we are out on the street selling these things that our children need to survive?  And since I'm on the topic of pharmacy know I've not heard a word from CVS since they offered us their apology settlement?  It feels like salt in my wound.  Just another indication that they DO NOT CARE.  I think I'm being totally reasonable.  COME ON. insert very loud sigh. 
By the way, I fell down the steps today letting the dog out.  harhumph. 
Ok, maybe I feel better now that I've ranted. 

Monday, January 7, 2013

New Year

I cannot even believe Christmas and New Years have passed and here we are moving right along through January.  Christmas was SOOO much fun for Lillian.  She LOVED opening her presents, we couldn't give them to her fast enough.  When we were at my Mom's and she'd finished opening hers, she moved right along to helping her daddy with his...tee hee.  We got her an Innotab 2.  She seems to be doing pretty good with it, much better than I thought when I was messing with it myself.  I definitely have to stick with the 3-6 year old age range for her.  She has to really work on matching things up so it's great for her fine motor skills. 

Today she had a visit with Dr Lungs.  He now wants us to try inhaled gent 2/day for a month and then on zithromax for a month dosing on M/W/F then back to the gent.  back and forth for the next few months to see if we can keep infection down.  He noted fluid behind on of her ear drums which didn't surprise me due to the fact that she is hoarse and drippy.  Fairly quick appointment other than having to "play" doctor with a resident who was practicing his H/P routine on Lillian. It is exhausting to go through her entire medical history almost every time...especially since he told me he had it all there in front of him, he just wanted to go through it with me...I guess to see if I remember??  *shakes head* ....just another dollar in the parking garage I reckon....(eeek, there's my grumpy 3am start to the day attitude creeping in...) Seriously, I know they have to learn...but mercy. Wears me out sometimes. 

In the waiting room, ( we were quite early) there was another woman with a little girl.  The little girl was practicing her abc's with flash cards and I could tell she was a little delayed in her speech.  I asked Lillian not to play with the huge toy in the room bc of germs and the other mom says, "i know, it's been a bad month for her" and I agreed and told her Lillian has had a rough time too.  We chatted a little and seemed to have some common ground with our kiddos.  Her daughter was wearing a crocheted owl hat, super cute and as I shared with her how cute it was, she told me she made it.  This prompted me to ask her if she sold them, to which she took out a piece of paper and told me she was just going to make one for Lillian and send it to us.  She took down my address and after I told her we were the Seymour Owls, she asked for our school colors and said she'd get it to me in a couple weeks.  Wouldn't even hear of letting me pay her.  Can you believe that?  I'm not totally surprised because God just works that way.  You know how you meet some people and there is an instant connection?  That's how it was with this woman.  Someone who could sit beside you shake her head in agreement and you knew she knew, you know?

Recently, I wrote a post about my pharmacy.  You must read it to understand this next little bit...I was in there again prior to Christmas and purchased a couple more scarves, one as a gift and one I decided to keep.  I told her I thought I would have to keep the red and white one because I love red.  She came out to me as I was held up there a few minutes and shared how much it blessed her to see Lillian when I brought her in.  I took that moment to share with her I'd been praying for her for some time.  She started to weep and threw her arms around me...I was stunned.  She called me the next day and told me Lillian's meds were ready (which was weird because they never call) and then told me she made Lillian a scarf to match the one I said I was keeping for myself.  

As my friend MBS ( or was it SSM?) would say, God smiles.  :) There are days when I'm amazed by the extreme lack of care that seems to flow into our journey and then there are instances like these that I'm amazed by the extreme love and generosity we experience.  I need to remember to keep my focus on the latter.