Monday, January 30, 2012

"the fitted foot"

Lillian had her appointment with the fitted foot clinic here in our little town (i'm amazed, at times, by what is in this town and what isn't)  First off, I found out she's in shoes that are too small.  She approved of the type of shoes (which I just got at target for 5 bucks).   just not the size of them.  I have to tell you, I was pretty shocked.  I also have to say, I have a massive bad sinus infection and it was hard to talk and focus on what was going on. Bottom line, she needs some orthotics to help with her flat, rocker bottom feet.  Her ankles are turning in a bit and she's tight in her hips in one direction.  I am waiting to hear back from them about what are insurance will cover.  We go from there.
  She also resumed her therapy today.  I dropped her off and was back home a mile away to rest my throbbing head.  When I went back to get her, these two women came in with Bentley, the St. Bernard therapy dog.  He was pretty and GIGANTIC.  Seeing as Lillian is terrified of just about every critter that is bigger than our little dog, I quickly let the staff know that she would totally wig out if they took the dog anywhere near her.  A while back a had a discussion with another SN mother and she had asked me if Lillian had any fears.  At the time, I couldn't think of any, but I'd have to say she is pretty terrified of animals.  I thought this was something she would outgrow, but it doesn't seem to be the case.  Which honestly, I'm not too concerned about.  I mean, really, with all that she has going on...fear of animals is not on my top ten concerns list. So, they take this bohemeth of a dog back and this lady sitting across from me begins to question me about Lillian's fear of the dog.  She went on, in great detail, of sharing with me how I could make Lillian overcome this fear.  I should find someone with a puppy and set a time and place and subject Lillian to the animal on a regular basis .  That way she could see the dog grow progressively.  Hello.  Thanks for your input total complete stranger who knows nothing about my child or her life or the life that we juggle with her.  I really don't care that she's afraid of animals and if she decides to become a vet someday I guess we'll cross that bridge when we get to it.      WOW, snarky much?  Of course, before I have a moment even to clear my pounding stuffy head, the therapist comes out with Lillian and we head on home.  I'm sure she meant well. It didn't bother me at the time, but it kinda rubs me wrong right now.  Get ready for some more transparency, friends.  This may be the first time I've ever REALLY felt this way about other people. Typically, I don't mind sharing Lillian's life and her story with strangers.  I don't care if people are staring at us or wondering about her.  I don't care when people find out her real age and get that look they get that tells me they know something is different.  Today, this woman hadn't even seen Lillian.  And what possesses folks just to blurt out their "fixes" to what they perceive as a "terrible" problem for you??  In this walk, I have learned that there are things that I just have to be OK with.  The world is not coming to an end if she doesn't like animals. I am not a perfect person and here's a good example of my ugly, I guess you'd say.

PS- if you read "Perspective" you'll understand this.  I bought some chux.  No more meltdowns over wet beds.  :)  Girl's gotta do what a girls' gotta do not to have unreasonable breakdowns!

Wednesday, January 25, 2012


You want transparency?  Last night Lillian's nonstop coughing woke me up and after seeing that it was not going to subside, I went down and got her nebulizer and started a treatment.  At about 2 AM I went back to sleep.  I went down this morning to get a fresh diaper and another albuterol to arrive back to her having peed through her diaper all over MY bed.  I just had a melt down.  All the while feeling so discouraged.  It's been one week and she's sick. Again, sneezing out massive amounts of snot.  As I wept, I kept telling myself that I was being irrational. I prayed or at least tried to assimilate some form of prayer in my mind to drown out my discouragement.  I had my moment, got the treatments going, diaper changed and feeding started so that our day could continue as it "normally" would.  I sit down to check facebook and blogs, where God reminded me to be grateful, to know He is there, catching those tears.  That while things are not optimal now, we are NOT in a hospital, our bills are paid this month, and it could be much worse. 

Monday, January 23, 2012

Five years "and change"

Today we had Lillian's well visit with her pediatrician.  HA!!  Typing that sounds funny to me.  "well visit" 

We found out
1.  She's in the 0 percentile...(also funny)
2.  She does have her own little curve...lots of dips, but a curve none the less
3.  She is probably going to get shoe orthotics bc of her flat feet and ankles turning in
4.  This child has NO, I mean NO fat on her little tiny body.  (wish I could donate to that)
5.  We did not get vaccines because she is getting sick again
6. We are starting her prophylaxis antibiotic a week early in regards to #5
7.  She did not approve of the Dr checking a concern I had in the diaper area.
8.  She weighed 29lbs once before on her 4 year well child visit. 
9.  We may need to start the pulse ox again at night.
10.  Dr will order a pre surgery care plan meeting before any further surgeries.

She resumed speech today as well and will have OT and ST again on Thursday and we'll be back to all three next week.  She did a great job with her ST today.  She can blow a recorder now.  Amazing.  We have an appointment next Monday for a foot clinic here in town. 

I cannot wait until she is talking and can tell me who all her angels are that she talks and plays with.  It is so interesting to see her play with her invisible people.  Here's the thing...none of my kids had an imaginary play mate....and how would Lillian even know such a thing existed?  When she was around 12-18 months old I would catch her motioning and mouthing to things above her crib. 

She is a light, my friends.  I continue to bathe in the joy of seeing her do new things and realizing what a blessing she's brought to my life.  It's not always easy, and I struggle all along the way, but I try never to lose sight of the incredible blessing she is. 

Monday, January 16, 2012

One week ago

Actually one week one day ago, I spent most the night time hours up with Lillian.  She coughed and coughed and coughed and coughed and..well, you get the drift.  Anyway, by Sunday afternoon one of her ears was bleeding.  We cleaned out a good little amount of blood and I thought, ok we start drops.  So I did.  4 am Monday morning she wakes with eyes glued shut.  Also repeat of previous nights' cough fest.  (and you all know by now, her cycle...cough cough cough, puke puke puke, repeat)  By Monday late morning her eyes look absolutely terrible, she looked terrible, she felt terrible.  By Monday night, both ears are draining nasty junk and our ped has called in drop for pink eye.  Tuesday night cough fest continues to the point of me adding albuterol nebs back to our regimen.  (thank you JESUS for albuterol) I think by Wednesday I started her on Levoquin and 24 hours later she is showing marked improvement.  I mean not all better, but definitely improved.  Nights still being the worst of it all.  Momma not sleeping because Lillian's drainage causing so much cough.  By Tuesday I was in shut down mode.  I was SOOOO tired.  Too many nights in a row of up and down up and down.  or just plain up all night. Wednesday I was in drone mode.    Friday she went back to school.  I had to cancel her therapy last Monday, that is supposed to happen tomorrow.  I had to go to the dr myself Friday for BP meds, is it any surprise that my BP was too high???  ugh.  Lillian is sleeping much better.  I've been able to drop the albuterol as of Saturday and tonight I hope to sleep a normal night.  Crossing fingers!! 

Tuesday, January 10, 2012

In the beginning...

Lillian was born not able to breathe.  She was blue from head to toe.  They would bag her (resusitate with an ambu bag) and she would turn all pink.  As soon as they stopped bagging, she would turn all blue again. This went on for several cycles.  The chaos shifted in to high gear as all the professionals in the room started looking stressed.  You can tell there is something worse.  Moments I'll ever forget.  I knew something MORE was going on when the doctor left sewing me up to tend to her.  She spent the first two months of her life trying to breathe.  I never really thought about breathing being hard.  Until then.  Five years later...with diagnosis such as chronic lung disease, asthma, trachial malacia, words like sats, breathing treatments, retractions, it not a wonder that I become a little stressed when she is sick.  There is no routine or lesser illness in Lillian's case.  EVERYTHING seems to attack her ability to maintain "normal" functions.  Eating (via gtube) and breathing.  Routine is a word that just cannot be used in conjunction with her.   These last two surgeries took us down the road of breathing issues yet again.  It is stressful when there is a cough that is constant and eventually leads to vomiting.  There isn't a whole lot of room for breathing in between.  Add in any "minor" infection and it all affects the ability to breathe.

 breathe [ bree ] take in air: to repeatedly and alternately take in and blow out air in order to stay alive

Sounds easy doesn't it?

Sunday, January 8, 2012

Last night

I was up til two listening to a constant cough and rearranging a little sleeping girl.  I woke at five to her gagging and wretching.  I woke at seven to her waking me up.  She coughed ALL night long.  She woke this AM puking up most of her feeding and sneezing snot out her nose.  I'm feeling kinda rough.  She seems to be acting better now that she's awake awake.  Snot prevails though...LOTS of snot. 

Thursday, January 5, 2012


  • Glasses...will this girl EVER learn to wear them??  We had her pretty good in them until we had surgeries .  Now, we have had to start ALL over trying to get her to keep them on.  We have lost them more times than I can count.  You would think I would not stress over it, but I do....just when they are lost of course.  *sighs*
  • Surgery updates...her feedings are up to normal and she went back to school yesterday.  Good news, she is babbling like a baby learning to talk.  Gives me lots of hope.  Makes me smile big time!! I can't decide if I think her swallow has improved yet.  I'm sure she's still healing.
  • Therapy...we have appts for reevaluations on Monday.  I dread getting into that rigamarole again.  AND they of course  do not have our same time slots open.Big shocker.  Now that's going to be all different. If we didn't have to work around feeding schedules and and school...bleck. I hung up the phone feeling all annoyed because its like I have to fight for them to work with her for an hour.  I say is that when she was an INFANT, they pushed her for an hour and now it just seems like they don't know how to engage her for an hour.  Me?  I just need to be able to understand that before I am ok with them cutting her therapy time.
  • Sinus Infection?  Yep, I'm betting.  Green globs coming out her nose and drainage like crazy at night, toss in some nighttime barfing along side.
  • Potty training....ugh...I think we are still a ways off on that. 
  • Happy...she is so happy.  Which makes her Momma happy.