Sunday, October 30, 2011


I absolutely hate to report that I just had to break out ALBUTEROL....yes, ALBUTEROL for Lillian.  Dr Lungs' Nurse had me start omnicef three days ago, and she seems to be getting worse instead of better.  She is whiney and fussy...not at all herself.  The junk coming out of her nose is green and seems to have NO end.  I think I detected a low grade fever. I got her to sleep and she did nothing but cough constantly.  Coughing to the point of wretching and puking, so I gave her a neb and aside from the initial coughing at the beginning, she has not coughed since I turned it off.  Ope, take that back I just heard one...but I can tell it helped her.  Last night, I thought I heard some croupy breathing, but it only happened when she got to running around.  After I finished her treatment it almost looked like she was retracting. (makes me sick)  I don't really mind if we have to reschedule, in fact, I'm probably going to insist that we do.  With Queen likes to bleed after surgery, I'd prefer it if she didn't have a hacking cough.  I am sad, though.  I cannot even tell you the last time I gave her an albuterol treatment for sickness.  It tells me she is sicker than she's been in a long while.  Likely no tonsilectomy on Tuesday.  Maybe we can get something scheduled for right after the antibiotic stops.  *sighs*

Tuesday, October 25, 2011


I attended our local special needs support group for the first time a week ago.  It was interesting.  I left feeling just as "alone" in this walk as I usually do.  Most of the families represented had children with Autism and the conversation didn't really get past  talking about gluten free diets or their kids not leaving their clothes or shoes and socks on.  There was some discussion about sleepless nights...I could identify with that to the extent that I've dealt with it, but not bc Lillian was up playing in her bed..but bc she is sick, vomiting, running a fever, or needing medications.  I decided I would need to go at least one more time before I gave up on it.  The day after the meeting I had a chance meeting with one of the parents ,who was rather quiet at the meeting, in the post office.  We had a nice long conversation, and I felt so connected.  More connected than I had sitting in that group.  Yesterday, if you read yesterday, we got a new diagnosis for Lillian.  It really was good information to have.  I don't really like it. But, at least we have another piece of the puzzle.  It is always hard for me to digest bad news.  It is an answer to prayer, but still bad news.  It affects me, it makes me hurt, it makes me sad.  I feel, physically, like my heart is being squeezed.  Now, I have not sat around and moaned and cried and complained about it, I really haven't thought too much more about it.  What does stick with me, is was what seems to be lack of support.  ONE person I spoke to yesterday allowed me to cry, did not question my feelings, did not judge my heart.  She understood...she understood, bc she has a child who is chronically ill and had a very difficult childhood.  The bottom line, I just need to talk it out, to feel the way I feel and not feel judged or questioned about WHY I do.  I appreciate words of encouragement, but I STILL need my moments....does that make sense?  Any parent could attest to feeling pained over their childs' poor decisions, or a procedure that child may have to go through...I have joy and excitement, faith, understanding and grattitude for all that she HAS come through and endured and I see how greatly God has protected her through it all.  I talk to God about it...ALL of it.  I AM only human.  I have my earthly thoughts and am discouraged from time to time.  Just let me be.  You have my permission, if I sink into a pit of despair, to drag me out of it....but I have to process, I need to process.  It brings new light to the support group.  While I didn't find myself completely at ease there, I think I will continue to go because I can just be  and people will understand and NOT judge why.

Monday, October 24, 2011

Some results

By now, you would think unexpected results would not bring me to tears.   The good news, I guess it was just a few tears rather than a full on cry fest.  Dr Lungs office called and our results from Yale are back.  The bad news, her ciliary hairs (sp ?) do not function properly.  Her first words were...the biopsy was abnormal.  She has dyskinesia.  Well, I throttled into a twenty question frenzy.  She seemed overwhelmed and didn't know how to she went to get Dr Lungs himself.  He was with a patient, so she said he would call me back.  Her other cultures came up positive for strep pneumo, probably the same reason she is chronically infected in her sinuses.   ? I'm guessing here.  The good news...well, at least it does help to explain why she gets sick so easily.  We have to be vigillant in airway clearance and she even suggested we start doing percussion twice a day.....Lillian will adore that I'm sure.  OH- and there's nothing they can do about it.  She is just high risk for pneumonia and lung infection in general.  So...I give thanks.  I'm thankful we know there is a reason.  I am, however, pained.  Just to hear that things in her body that should work right..just don't.  It hurts my heart, but I am thankful to know. 

Monday, October 17, 2011

Let the games begin

Just got the call from ENT.  Lillian is scheduled for her tonsilectomy on November 1.  Pharygeal flap surgery to follow on December 20th.  These are the steps we have prayed over and hoped to happen.  Now we have approvals and dates....and I'm already feeling the nerves kick in.  These appointments, to me, are kin to her palate repair and decannulation.  It seems so much rests on these important surgeries.  Then, my mind starts...are they THAT important?  These are the issues that have to be addressed to hopefully move forward.  Right.  That is the mantra...right?  It pulls at my heart to know I am ultimately the person making these choices for her.  Do I have to put her through these surgeries?  It seems that it gets harder every time we face surgery.  I know---believe in my heart this is the direction to go...but it just doesn't make it easier for me to think about. 

Lord, let my mind rest on You and Your goodness.  Give me Your peace.  In His Name

Wednesday, October 12, 2011

We find favor...

We met with Dr Plastics again today.  He seemed less than enthused to us there again. Lillian's speech therapist accompanied us, which I have to say was AWESOME!  He asked why we were there again, I told him we brought the V&E for him to see.  After some fiddling with the TV/player, he returned to the room and watched the video.  The short story...he still thinks she has developing vocabulary problems, and Mrs Speech and I both were thinking he was calling it a no go again, BUT...he said she definitely needed some help and a pharyngeal flap would perhaps be good for her.  Can I get a WOO HOO?  She allowed him to examine her all by her own doing, she gave him five and blew him kisses and he stated "she has grown so much since last time I saw her", OK, least we are moving forward.  She will have to have a tonsillectomy first and a months recovery time.  She is scheduled for the flap on December 20th for the time being, so we'll have to see how quickly Dr ENT can get her in for the tonsillectomy.  So thankful for positive results. This picture isn't from today, but it sure reflects my current mood!!!  Woo hoo!

Thursday, October 6, 2011