Sunday, August 26, 2012

It hit sooner than I expected

I thought she would last a bit longer before she got sick, but with her sleep schedule being cut as much as it has, I'm not surprised.  Lillian started getting sick last Wednesday.  I kept her home from therapy on Thursday hoping she would still be able to go to school, but our Thursday morning proved that wasn't going to happen.  Friday morning she woke up with a raging fever and puke fest.  (which is of course her way) I have kept her in all day day today and plan on letting her sleep tomorrow and keeping her home from church.  No need in adding exposure to an already weak, sick, system.  This makes me wonder if I really want them sedating her on Tuesday.  I think this is all a sinus thing...but I just never know.  She continues to be her happy little self through it all...just sitting around a bit, which is definitely NOT her norm.  So that's been our week-end.  Through the night breathing treatments, puke fest, cough-ville and general sleep deprivation.   

Thursday, August 16, 2012

ANDDDDD...she hit the wall

This mor ning started as usual.  We got up we got dressed and happily headed out for our five minute drive to the rehab office.  By the time I pulled into the parking lot I looked back to see Lillian sobbing her little heart out.  She clung to me like glue.  Even seeing her favorite "guy" PT when we walked in didn't give her a smile.  She continued to cry and beg to stay with me.  I hung out in the waiting room for some time and asked the receptionist to check on her and she was still really upset.  So I observed through the two way glass until she seemed to be perking up.  I decided I would run some quick errands but instead got in my car and had my own melt down.  There are things about this journey that are so so stinkin' hard.  It's hard being a parent period.  Wondering if you are making all the right choices, deciding how hard to push your kids.  Having a special needs, medically fragile child compounds those feelings exponentially.  And it breaks your heart sometimes.  

When Mrs Speech took her on back I requested prayer on facebook and I started praying for her myself.  When I got in my car I started giving thanks for the fact that Lillian is able to cry on my shoulder.  Something I know that parents who've lost their children no longer have the comfort of. 

I came back early and found her coming down the stairs with Mrs PT with a malfunctioning feeding pump and we headed out of there a bit early.  I dreaded taking her on to school.  I totally didn't want to have to go through all that again.  She signed to me she wanted tacos so I grabbed some tacos and took her to school. She transitioned very easily into class and I was able to slip out with no problem. 

At home, she is super clingy, if she has any thought that I might be leaving she melts down.  She is definitely missing her mommy.  I have a friend who comes over and we ride bikes at night, she came in tonight and Lillian clinged right to me because she was afraid I was going to go on a bike ride.  Another emotional day in the Halcomb house.  The other girls are also exhausted because they are trying to adjust to school and there have been big steps in school,  a new highschooler and a new middle schooler.  Harder work and more expectations.  The emotional really kicks me in the physical. I'm whooped. 

Wednesday, August 15, 2012

a little visit with dr lungs

Today Lillian had a routine visit with her pulmonologist. They made me sign a form today that if I'm ten minutes late I'll be asked to reschedule or be "worked in" to the schedule.  It's apparently a new office policy, effictive immediately.  Well, I say that is a pretty poor policy to slap on people.  Considering they make you wait far longer than ten minutes...I fully expect to have no waiting the next time we go....yeah right.  Why don't they just DEAL with people who are chronically late...that's my question.  It's not really hard to identify the folks who are ALWAYS late.  I'm just sayin'. 

They have ordered a sedated chest CT for her on the 28th.  They want to get a good picture of her lungs, check out her lung disease status...check for bronchiectasis.  The thought process being how to decide how to set the best preventitive care plan for the winter season.  There was talk of the vest.  We've never had to use the vest..but it doesn't sound all that bad to me.  For those of you who don't is a vest the basically shakes to keep stuff stirred up and out of the lungs.  Since Lillian has an immune suppression disorder that affects her lungs, it sounds like it could be a good idea.  I'm all for anything that keeps pneumonia away.  They are trying to transition her to a spacer for her treatments...but right now, we are just going to use it for albuterol treatments that may be needed for school.  Personally,  I like the nebs, it just seems more effective, but they say at her age "they" want to see kids move to the spacer.  I guess "they" would be insurance.  I don't know. 

They also referred us to the sleep center again.  She thought it would be a good idea to have another sleep study, but wanted to leave that decision to the sleep study people after we have a consultation with them.  Lillian has had some distrubing (to me) snoring/retracting/yawning episodes in her sleep and it bothers me.  There have been lots of changes to her airways/anatomy since November.  It is kind of my worse nightmare to think of her having to get a trach again, but I wouldn't hesitate if that's what she needed.

I still need to schedule her cardiology and ENT visits.  I know this is going to sound "crazy mom" talking...but I need to share it to get it out of my head.  These kinds of appointments are tough.  It is a harsh reminder of the fragility...or a reminder of the depth of her issues medically.  I know she has conquered many many obstacles and survived so much and I'm so grateful.  I know there are mom's dealing with lots harder situations, but this is my reality and today was another hard day. 

God is good...He sent two of my beloved friends to call me, neither of them knowing I was on my long drive back home, and they prayed and it was just what I needed.  Thank you Jesus for ALWAYS being there.

Saturday, August 11, 2012

First two days of school behind us

It's a good thing they start school here on a Thursday because this old girl here just might not have been able to handle a whole week.  She had therapy on Thursday morning and then at noon I took her on to Kindergarten.  I barely made it out of the building before the tears started to fall. To was NOTHING compared to many of the rough things Lillian has had to go through.  I realize this. But just let me tell you, this was hard for me....more so than I expected.  I got myself together and delievered a meal to a family in need and that distracted me for a good couple hours.  I headed home and it was like someone just turned the faucet back on.  I cried for most of the afternoon and was completely exhausted by the time we went to bed. Friday morning it was all I could do to walk away from the bus that morning.  When she got home, she wouldn't answer any question about school or new friends or anything.  She would just bury her head and say she didn't want to talk about it. 
The note from her teacher assured me that she had a great day and was doing well.  So difficult to not be able to communicate with her. Rough.  So, thankfully Monday won't be too hard because it's a therapy day again. 

Wednesday, August 8, 2012

The sun will come out tomorrow...

Tomorrow Lillian will begin her first day as a kindergartener.  We spent a couple hours in her new classroom this evening.  I had a meeting with the school nurse yesterday training her on the pump, gtube replacement, and the "bigger" issues I could think of.  I don't know is just going to happen and I have to just give it to God.  A deeper step of faith and trust in Him.  I finally got a call from her bus driver and she will have to board the bus at seven thirty in the morning and be on for an hour before getting to school.  Both ways.  Yes, I could take her, but my transportation isn't always that reliable.  I have an older vehicle and stuff happens, I have other younger kids coming home to consider as well. Last night I was a wreck.  I didn't sleep and honestly just felt there was noone to talk to.  Matt was asleep and I didn't want to wake him and unless you're walking this road, its hard to feel understood. I felt so completely alone. My child is fragile and nonverbal.  She can't tell me if something bad is happening to her.  I feel about as tight as I can be in the rock and the hard place.  I did get a little sense of peace as I left the school.  There is a ton of second guessing.
 Matt's answer..."go to school, volunteer all day and then you'll be there"  helpful?  notsomuch. realistic? notsomuch.
On another note, I felt a pang of sadness as I listened to her teacher tell another parent that they had their academics but they focused a lot on lifeskills.  Can I really tell you  Just the little niggle of reality.  A new step in life. LIFE.  I guess there's the real focus.

Thursday, August 2, 2012

A time for everything

Lillian's health seems to be staying steady for the time being.  She was really struggling with some drainage recently, but doing better now.  School starts in one week and my girl will be off to Kindergarten.

I was spending time in prayer this morning praying for another little girl whose Mother I met for a brief moment in the therapy waiting room today...I was transitioning into prayer for Lillian when it just hit me like smacking into a wall.  I began to weep as I grieved the fact that she might forever be three years old.  It brings me nearly to tears as I type about it now.  I was shocked by the wave of emotion that was hitting and how unprepared I was for the feelings I was having.  I remember thinking I don't want her to be stuck at three, I want her to be happy...I want her to be fulfilled in life.  I tried to be still and rationalize all this grief that was over taking me.  Of course, immediately I  believe God answered with "of course she's going to be happy, what makes you think she wouldn't be".   I'm still a little vexed as to why I was so wrecked at that moment in time.  I really haven't been worrying over her.  She's been relatively healthy.   Transparency friends, I want my daughter to have a "normal" life. I accept her the way she is, but I'm sad occasionally for what she may not have...does that make any sense?  I LOVE every inch of this sweet little angel, I love her so much it hurts deeper than I knew was possible.
So, with a tiny bit of an aching heart I leave this...
Time for Everything--- Ecclesiastes
3 There is a time for everything,
and a season for every activity under the heavens:

2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.