Ready for summer

This fall has been atrocious.  Lillian has been sick ever since school started.  She has been vomiting, fevering, coughing, snotting, escpecially badly since Saturday.  She has spiked fevers off and on for the last two days.  How this child continually has energy is a amazing to me.  She has lazed in the bed quite a while in the mornings, though...rather than wanting to rush straight downstairs. 

Slowly each one of the kids are being hit by the same sypmtoms, minus the fevers and vomiting. It has not been pleasant around here.   I am now also feeling it.  UGH.

I admit that I do enjoy the change of season.  I do.  At this moment in time, I'd really really love if it were summer again. 

Who likes bubbles??

She does....she LOVES the bubble bath!!  She loves giving herself a beard and scooping up the bubbles in a bowl.  I don't usually give her bubble baths, Dad usually does, me...well, I just want to get her in the bath and giterdone, know what I mean?  But today, I'm old softie, because you know that vest...the new shake machine.  She HATES it.  She cries pitifully.  It's like taking your kid to get shots every day.  BLECK.  It gives me a great deal of peace knowing the job it's doing, but ugh, just getting through it.  Aiy yai yai.  Anyway, just thought I'd share a happy girl in her happy bath.  Out of bubbles now, though....eek.

Shake rattle and roll

Hers doesn't look exactly like this, but it's similar.Hers is longer and the tubes come out around each side at the bottom.
Lillian got her first run with the "vest" today.  Essentially, it looks like a life vest that inflates on her body and shakes at about 700 compressions per minute.  OH MY WORD.  I was even a little stunned by the power.  She sat in my lap while it ran...( it makes me wonder if all that vibration could vibrate some of my chub away...lol??) Made me think of that old workout machine that you strapped around your hips and it jiggled you...whoopsy, rabbit trail...anywho..She did not like it at first, but then...she got a real giggle out of her voice making the shaky noise.  When she laughed it was just a hoot.  We all just laughed and laughed.  The vest itself is too big for her, not sure why they sent such a big one, but they will ship us a smaller one by MOnday.  She will have to wear it 20 minutes twice a day, more if she gets sick.  Of course it takes up some space, and it heavy.   Not sure where it's home base is going to be.  This house just isn't set up well for Lillian's needs.  Should be an interesting new experience.  I think she'll tolerate it ok.

So today, her OT talked to me about their concern that Lillan may be displaying some sensory issues.  I know its not news that is the end of the world...but yet again more problems for my brain to comprehend and deal with.  Down right depressing at times.  It's like when they told me stuff was wrong with her brain. I kinda thought there might be, but to know for a fact there really are things up there that aren't what they are supposed to be...it's just stressful to deal.  I'm not sure I'm even describing it well in this paragraph. 

I took her to the doctor today with concern that she might have pneumonia, but they are saying still sinus stuff.  I'm thinking sinus plus viral.  Her cough is not her normal sinus cough.  It is very wet and sounds like she's coughing up a lung.  (ironically she just started hacking as I typed this) or maybe it just flares up her asthma so bad that it makes it seems a lot worse, I just don't know. 

To be totally transparent friends, recently I just feel like I'm being swallowed up.  I am fighting it almost daily.  I need your prayers and so does my precious girl.  In ways, her life is so much easier that it used to be and I'm so grateful.  I even told myself that I'm grateful for sensory issues.  I'm grateful for her life just as it is, it's just tough on my heart...tough on my heart. 

Words

Lillian is sick.  Still.  Wednesday I had to pick her up from school at noon.  She was sneezing and hacking away and developing a fever. Kept her home Thursday, treatments all night long.  She woke up Friday and just before I was going to take her to school she spiked a temp.  Like whole body shakes, chattering teeth kind of scene.  We are laying low this weekend.  She has a very nasty cough now, sounding very wet....which I hate.  She HATES that I'm trying to do CPT.  That vest can't get her soon enough.  ( the insurance approved it for six months and the readings have to prove we're using it and then they will pay) I was feeling  very discouraged Friday morning.  It's been a rough few months.  She just hasn't had a break in health in quite some time. 

I have been encouraged by her developing vocabulary.  She is actually sayng DAD.  All beginning and ending sounds.  Almost a year post op from the flap surgery and we are seeing progress.  I'm starting to have renewed hope that she will speak.  She has also said baby several times, but you can tell it's really hard for her to get it out.  The "ba" part is very elongated and she really has to work to say "be".  She is saying done pretty good too. 

If I just had a magic wand to ward away the sickness. 

Have I ever mentioned that I'm tired?

This last month or so has just been a real doozy.  Lillian has been sick several times, or rather, sick most of the time with tiny breaks in between.  GAHHHH.  Last weekend I just could not believe she was puking up her guts again.  and again. and again.  By Friday I was becoming a bit distressed and called the dr to let them know what was going on and I'd be bringing her to sick clinic Saturday if she wasn't better.  They had me bring her in that afternoon because nothing in equals nothing out and no pee in a diaper is a bad thing.  What I thought ( and secretly hoped) was that she'd caught another flu bug, albeit odd to be having it again so close to the last time...I thought that would be good.  Little bit of fluids to get her through a few days and voila we'd be back to baseline.  Nope.  None of that for my sweet little angel.  We get some xrays, the doctor says the xrays "suggest" an ileus.  Short story...nothing in the tummy to allow the gut to rest.  Hmmm.....have I ever mentioned how tiny Lillian is and how there is NO fat on her tiny body?  I elected to keep her home and trickle in fluids as long as she would tolerate it.  Now....according to the Dr.  this typically happens when there is some type of trauma associated with the tummy.  It happened to her before once when a gtube got ripped out and bled profusely.  That I get.  This time...no trauma and a "suggestion" of ileus.  We were able to manage at home and she had little energy, but hey not in the hospital.  She is just up to her normal feeds today. PTL. 

I, on the other hand, have been in near despair wondering why this happened and is she now going to suffer through this reapeatedly.  Not another diagnosis...not another hurdle.  Honestly, I'm not looking for sympathy here ( I don' t think) I'm just here to tell you people its hard on a mother.  It is difficult and it hasn't happened to me in a while, but I just shut down.  I'm weepy and worried.  I know God is in control.  I know this.  Though I shamefully admit to you it has been in my head how does a God of love allow this to happen to a child who has asked for none of it.  If all this has a greater purpose or I'm not where I should be in my walk, I'm just not sure what I'm doing wrong here.  I share this because it is the way my mind tries to reason it all out. Maybe, just maybe some other parent is out there buried  in sorrow and worry and just needs to know someone else is too. Tears overwhelm me as I bare my heart. 

  I'm just desperate for answers that don't exist.  At least not for me, not for today.  I'm tired, yet unable to sleep.
 Well meaning friends will tell you we are not guarateed a tomorrow.  True.  But not so easy to swallow when you are in a situation that seems so shaky. (so if you are thinking that or want to say it, please don't...it doesn't help me any.  at all.)

Deeper faith.  Deeper trust.  I know I'm not the first or last person to walk through a difficult time.  Some days it just feels like it.  (hee hee, that's a lame attempt at a little joke)

Whew!!  Feels better to get some of that out.  God is good even when I "feel" like He's messing with us.  Scripture floods my mind even as I type.

I would like to end on a positive note, Lillian's cat scan was really pretty good, enlarged heart, some scar tissue, but overall good.  They did want to order a "vest" for her because of the PCD...did y'all know those things cost 16000.00 dollars.  Crikey, almost swallowed my own tongue when she told me.  We are waiting for preauth from insurance before they send it.  We are not going to go on any  profalactive (sp) antibiotics as they did not help.  One of her tubes in her ears is already falling out so we need to get back with her ENT. 

Please keep us in your prayers. 
I thank you for your prayers for my girl.  I thank you for standing in the gap.  If you could remember a little special angel named Gavin too, I'd appreciate it.