Solutions?

Lillian resumed school yesterday afternoon.  I am taking her to yet a different school after school hours to meet privately with a teacher twice a week.  The room she is in is pretty small and the teacher assures me she is sanitizing the room to keep down the germ factor.  Lillian seemed comfortable with her new teacher and I liked her as well.

CVS offered us a very small settlement, which I accepted.  It's not even a slap on the wrist in my opinion, but I'm ready for it to be over.  Nothing that has happened has changed anything about their procedures or even led me to believe they even care.  Of course, it will be a few weeks before that is given to us and I will have paperwork to sign.  It became quite clear to me after my last talk with the manager that he is only going to defend his company...a company supposedly in the  business of serving people but really only caring about the money they make.  I should not be surprised that my daughter's life is not important to them.  Hard to keep a soft heart when things like this tend to make you want to shut down. 

She is all bound up in mucous again.  Lots of coughing and sneezing today.  Antibiotics on board...hopefully she won't get too bad this time. 

Difficult time of year

Sometimes I wonder if I will always be so emotional around this time of year.  Does anyone else struggle right now?   I attribute it mostly to the fact that this was the time of year when our life changed so drastically.  It's like I'm on an emotional roller coaster that has no end.  I continually remind myself of all the good things that we experience and the fact that our Lillian is with us.  So much suffering as of late. 

The CVS saga drags on.  I contacted corporate CVS in regards to her overdose, rather I TRIED to contact corporate.  All I got was a customer service rep who promised a call from regional or district management in one business day.  That was on December 4th.  I emailed  them twice and still no response and I called again  on the 12th and get yet another phone call from the in store pharmacy manager.  I'm trying hard to continue to be civil, but on this last conversation he all but left me feeling like it was my fault that they filled her prescription wrong.  Really, it should not surprise me because A) it's not their child B) they only care about their business.  He informed me that the dose they gave her was not necessarily a dose that couldn't be ordered for her anyway. 

After seeing the pediatrician Friday, he told us that the dose and her age alone should have been a red flag to the pharmacist.  He said that dose was a sedation level dose and it was certainly the cause of all her excessive falls. He also said that given her particular health history is was extra hard on Lillian. 

Mentally exhausted and in constant prayer for peace. 

This week...

well, what can I say...it has been filled with awesome blessings.

 It has also been filled with a sick Lillian.  I got her antibiotic started later than I intended and by Wednesday night I was doing breathing treatments every three and a half hours through the night.  Dreadful.  She'd been on the meds by then for three days.  She was much better on Friday, but she's still got quite a lot of snot.  I have a couple nights in a row like that and my brain is just fried.  Her feedings weren't going well either.  Thank goodness she's trending up.

SIX

You  never really think about the significance of numbers...until you consider the life that asssociated with that number.  The life that, at times, has seemed so precarious and uncertain.

 You take special joy in the love of sisters...

 The thrill of opening new clothes.....

Sisterly dedication

 Showing off some new duds down to the boots.

 and even more love from cousins

 Grandmas who spoil you

 Daddy to cuddle you

 Friends that give you gifts to be silly with

 Mad dog cupcake fun...

 the joy, hope, and utter gratefulness captured in the click of a camera phone

ending with a big lipped candy pacifier smooch. Cards and phone calls..message and love from others.   Six years...a day we didn't know we'd have to celebrate.  Thank you God for your unending love, provision, and protection.  It isn't always easy or fun, but ALWAYS ALWAYS NEVER EVER taken for granted.  Happy Birthday sweet number five in my brood.  We look forward to another year and many more to come.

Let me tell you a little true story...

Events in the past week have caused me to really exercise my self control.  I have been extremely dissatisfied with recent problems regarding the poor service provided by other companies in reference to the life of Miss Lillian.  I try really hard not to be all crazy town on these people who are causing us some serious grief.  In my head, I'm always telling myself, don't go off...don't be unchristian.  It's hard.  REAL HARD.  Honestly I want to scream and holler and be belligerent, but that doesn't do much good, but relieve my tension...mostly.  Well, when we moved down to this small town, I immediately chose to move our pharmacy needs to the family owned pharmacy here in town.  Clearly I have not had success with the large chain pharmacies. This particular pharmacy actually has some commercials referencing their "personal, caring, approach" to your medication needs.  Shoot, they even deliver.  So, from the outset of using this pharmacy I have encountered this woman who is always the "check out" person.  She has barely spoken to me, NEVER smiled and I was quite put out one day as I watched her not help a customer who was really struggling to find what they needed.  ALbeit, she did point out the area..but she should have come down and helped the person in my opinion.  It got so bad with this woman that I actually started to dread going in there because I knew I would have to interact with her.  Quite honestly there were probably times when I was frenzied and not overly friendly...but most of the time I tried the kill her with kindness routine.  I even started trying to pick up meds at night because I knew she would already be gone. the Lord put it on my heart to pray for her...I figured her life must be something terrible for her to be so unfriendly and borderline rude, so I'd pray and have a better attitude about it...and still try to avoid her.  Two weeks ago, I went in and saw her back there and was dreading even having to talk to her.  I had Lil with me.  I want you to know this woman came down out of the pharmacy, talked...smiled...tried to make friends with Lillian.  I was absolutely stupified.  I kept thinking, hey remember me...the person you  seemingly dislike?? I mean I was nutty about it I was beginning to think she somehow had some grudge against me that I was totally unaware of. I just could not believe the differnce I was seeing in this woman.   Last week, I went in and there she was and I inhaled sharply prepping myself for the encounter.  As I approached, I noticed a scarf she was wearing and the first thing I told her was how much I liked her scarf.  Her response was she made it and then she told me she had brought a bunch in to work with her to try to sell.  wait for it....before I could say anything she went on to say that she was trying to make money to purchase a headstone for her granddaughter who had passed away.  I was speechless.  I purchased to scarves and told her I was sorry for her loss...she stopped looked at me, smiled and said, "she's in a much better place".  Wow.  What a revelation that day.  I've been praying for this woman for close to two years.  You just never ever know what someone else is going through.  As bad as my days might sometimes seem and actually be...I'm not saving for a headstone. 

Not everyday

but some days, the simplest things have to be so complicated.  Maybe the "simple" things aren't as simple as I think??  Example: My child's nebulizer machine bites the dust.  We've owned the machine almost 6 years.  I call the homecare place.  They just shift me over to someone else where I get no person...call back and explain what is happening.  They tell me, "OHHHH, where'd you get the machine.  I tell them I'm not really sure, it's been so long, but perhaps praxair...then I say no..I think it came from (cr)apria bc that is who we started with.  They tell me to get an order and they will contact (cr)apria and find out about getting us a new one.  Ok, first off, if the machine is  under five years old, the company you got it from has to replace it free of charge.  Ok.  I am on the phone with this woman and she assures me it will all get taken care of as long as I get them an order and I will get a machine today.  As my daughter uses the machine multiple times a day. I ask, do I  need to call back and follow up on any of this..her reply..nope.  I say, I'm going to get it today, I need it today.  She says yep.
I'm gone all day.  Get home, have msg from the lady.  I call back,she tells me the machine is indeed over five years old and they are just getting me a new one from (cr)apria.  Now, friends, if you've been with us from the get go, you know how I feel about that company and will never give them another dime unless it is absolutely the last option I have.  Not a fan.  But here they are...just assuming and doing and not even asking ME, the customer where I want them to get the equipment. When I tell her no, I don't want it from apria, she then takes it upon herself to send it to some other small company in a town thirty minutes away that is already closed and may not get to it til tomorrow.  HELLO???  How many times did I tell the woman I needed it today???  Makes me want to pull out my hair.  I call a local (in my town) homecare company.  Call the lady back and tell her I want the machine from them to send the order to them bc I can for sure get it tonight.  She says...get ready...now it's right at 5 oclock.  She says, well, I'm supposed to leave at five so, I can't get to it. REALLY, she can't wait two minutes to for me to get a fax number called back to her?  Less than a minute later I call back with the number, have to leave a message on a machine, wondering and actually anticipating that I will not get the order to the local company tonight.  I show up at the local place and she was also clearly annoyed that I was coming in half an hour before her day was over. 
In the end, I know I have friends that I could get a machine from if necessary...but seriously.  This is the kind of system of things that I deal with all the time.  It's irritating and proves that these places don't give a hoot about my child.  Don't like your job?  Get a new one.  I'm sick of people who treat our life this way.  I'm sick of so called professionals being total failures.  Example: the manager from CVS called me and I'm not really sure what he wanted to hear from me.  I mean it was way past them doing anything for Lillian.  I'd already given her five overdoses.  He told me these type of incidences "go against" the person.  Really?  Just tired of feeling helpless.  I know people make mistakes, but we are talking about a whole bunch of people failing all the way around.  It's not ONE person who fills a script at the CVS.  Come on.
If you've made it to the end of this rant or whatever it is, thanks for hanging in there.  It's days like these last ones that make it quite clear to me why I'm nearly gray headed at the age of 36 and why I look in the mirror sometimes and see a tired face.  I understand why sometimes I feel like there is a piece of me that is missing and will never be the same. 
PS- she's still sick and coughing like a there's no tomorrow.

what a day

-

Day before yesterday at 1:49 am, Lillian woke me up puking up her guts.  At first I just thought it was a cough that brought on a little throw up, but quickly found out that it was something more.  From then on, she went from every hour to every twenty minutes of throwing up.  It continued for the entire day and around three I remembered that I had a phenergan suppository in the fridge and gave it to her. I then called the pediatrician to see if I could get more.  Long story short, I finally got Lillian's actual doctor on the phone and after a brief discussion found that CVS had misfilled her prescription. So, without knowing I've overdosed her five times( four times in June  23 no wonder she remained so sick) on the drug.  The pharmacist  at CVS looked up the script and confirmed they did indeed fill it wrong.  She went on to tell me that i had no idea how bad it made a pharmacist feel to fill a child's medication wrong.  HELLO????  Try being the parent who administers the drug,  Thank God He has protected Lillian, but I wonder if this is what has caused her bowel problems.  She as quite catatonic-ish last night.  Looking very doped up.  She has not puked today yet.  I ran a twenty cc drip of pediatlyte through the night...she got less than ounce spread out over an hour.  She woke me at six this morning begging me for a drink.  A few sips of water and so far so good.  Her next real feeding is due at eleven, so that will be the real test.  Thank you for continued prayers and a quick apology to those I may not have responded to via text or fb, I was wiped out yesterday and we went ot bed quite early. 

Dr Heart Reports

After a long sleepless night, we were up early and headed to KY for Lillian's cardiology appointment.  She had an EKG and echo.  Both tests were good after Lillian calmed down.  Took a little while on the EKG.  She had equal pressures in her arms and legs and good femoral and pedal pulses.  The PFO is still open. He said he would pull her chest ct and see if her heart was truly enlarged..he said there can be discrepancies in the reading depending on who's doing the reading of the scan.  IF her heart is truly enlarged, they will want to see her again in a year, if not we are still on the two year plan unless symptoms arise.  Woo hoo for a good report.  He really is an awesome cardiologist, so personable and sweet to Lillian.  He just kept saying how cute she was.
Happy mom, happy girl, happy hearts!!!

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. 

"I don't know how you do it"

I've heard this statement more times than I can count.  I'm sure some of you reading this have heard or been told the same thing or maybe even been the one to say it to me..*smiles*  (stay with me here, in my weird way this will hopefully all make sense *winks*) 

So here I go telling you all the crazy in my head.  A young teenager lost her life this past week in our small town.  She was the same age as my oldest daughter.  I believe any parent can feel a strong reaction to such a situation.  You feel grief for the family and then you are thankful for your child and you maybe hug them a little tighter.  I have all that.  Then...well, then....I'm gripped for moments in fear or not fear so much as panic maybe when I think of the frailty of my sweet Lillian.  My mind is automatically creating scenes of a future event I don't even want to comprehend.  I HATE that my mind goes there.  How do I stop this crazy thought process?  This sounds so incredibly selfish even as I type it...but I am profoundly shaken when I hear of a child's death.  It strikes a chord of fear in me that I cannot even fully describe. 
 A friend of mine shared with me a sermon she wrote and she spoke of Jeremiah. Her opening statement was "how did I get here" One of her points throught out was God giving us all we need in circumstances we don't feel qualified to do.  All through reading her work, I thought of a former pastor who often said "God doesn't call the qualified, He qualifies the called" I can totally identify with feeling like I'm not strong enough or qualified for the journey I've been on these last almost 6 years.  But guess what?  Each and every day God gives me renewed strength through prayer and His word.  He sends me encouragement through friends and people I don't even know.  Each and every day.  There are days when this lady would surely have called it quits if the Living God wasn't living in me.  Praise God for his strength.  So, today as I continued to work through these emotions and thoughts running rampant in my mind, I began to recall scripture...particularly the words "think on these things"  I found my way to Phillipians and I found comfort and renewed focus...

⁶ Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. ⁷ Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

⁸ And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. ⁹ Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.
  ¹³ For I can do everything through Christ,^[c] who gives me strength. ¹⁴ Even so, you have done well to share with me in my present difficulty.  (NLT)


Verse 13, that says it all.

Seems like it's been a while

but it really hasn't I guess.  Lillian has continued to struggle with coughing and snot and such and I for one and over that I can tell you.  Last night was rough for her,,,it was breathing treatments through around the clock.  I let her sleep and took her to school late.  I'm trying so very hard to make the choice to be happy and positive each day even when the days seems so hard sometimes.  God is teaching me so many new things these days and really working in me.  I'm so encouraged when I log onto facebook and see some miraculous stories and seeing answered prayers...how can I be negative??  I'm trying real hard. 
So, let me share a little testimony here, (I'm trying really hard to be sensitive to the Holy Spirit) if you're reading you know LIllian didn't have her scheduled chest CT on the 28th due to illness.  When I called to reschedule it the lady answered the phone and immediately I felt pricked by the Spirit to pray for her.  After we scheduled the appointment, I asked her her name again and she told me.  I then shared with her that I felt God wanted me to pray with her.  She was quiet.  I asked her if  there was something burdening you I can pray for.  She told me her husband was from Africa and they were trying to revoke his visa and send him back and they were very stressed.  So I prayed.  When I stopped she spoke again and I prayed some more.  She was quiet again and then told me I had awesomely blessed her day.  That she had just been sitting there praying about it and she received my phone call.  My walk through Lillian's journey is drawing me closer and closer in my walk with the Father and I LOVE it.  While I wish my child were not sick, I can see the blessings in the days even when she is.  I would maybe not have had this chat with this woman had she not fallen sick. 

Anyway, she did have her CT and has been sick ever since.  I always wonder after we've been in a hospital what kinds of buggies we'll bring back home.  We go back down to KY at the end of the month to discuss results and a winter plan.  I feel very strongly that she needs to get a flu shot as soon as possible as well. 

In other news, Isabelle is still struggling with belly pain and I'm on the move to reach out for help in other areas at this point. 

We were finally able to borrow a bike trailer so Lillian could go along on my bike rides...which she LOVED!!  Then last week mine and Isabelle's bikes were stolen out of our fenced yard.  Whoever took them is hiding them well, bc I sure haven't seen them around town.   It's been a tough couple weeks with two sicklies and the theft, but hey...we will survive and recover and just keeep on keepin' on.  God is good.   

Two weeks ago

Lillian began showing signs of upper respiratory/sinus issues.  She missed the rest of the week of school and I cancelled therapies and we set in for long nights and breathing treatments.  By the following Monday it seemed she was better, good enough to go back to school and also have her chest CT.  MOnday night we went to bed, started her a pedialyte drip and went to sleep.  Her pump rang out at about 4 and promptly at 440, she began to vomit.  At this point, I'm groggy and trying to dial phone numbers to cancel her CT.  Puking on pedialyte is never a good sign.  She puked and had loose stools for two days.  She finally turned around on Thursday and I felt good about sending her back to school Friday.  We had a long weekend and she seems to be back up to snuff.   I have rescheduled her CT for the 13th.  The sleep center called and left a message and I've yet to call them back, but hey when your up to your eyeballs in sickville you tend to forget stuff, ya know? Not to mention Isabelle is still dealing with stomach issues and it just super overwhelms me when I have two sickly kids.  We are still waiting on results for her.
 Ready to try to settle in to some routine, but its just not happnin' so far....the bus driver forgot to pick her up on MOnday and today she was about 15 minutes late bringing her home.  I stood out in the rain for 25 minutes waiting and when I finally went back in and watched from the window, I head a honk and she had come a different direction.  As I was waiting for her to get home I witnessed my highschoolers get off their bus while TWO vehicles completely disregarded the stop sign.   I guess some poor child is going to have to be hurt before the city steps in to crack down on this.  I've called the police...that was a big help...NOT.  They won't even do me the service of showing some presence in the area during bus drop off hours.   

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.   

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. 

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 know...it 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.

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 compare...it 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. 

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 friends...life 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 why...no.  Just the little niggle of reality.  A new step in life. LIFE.  I guess there's the real focus.

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.

The Look (Part 2 of flashing back )

I remember walking in the "mod" for the first time.  Mind you, not the first time I had been there, but the first time I physically walked in .  It was on Monday.  I walked in to the unfamiliar room lined with isolettes on both sides. Seeing babies that were so tiny it was hard to believe you were looking at an actual breathing, living baby.  When I happened to meet eyes with a fellow parent, there was a hollow kind of sad look staring back at me.  Lillian was in a teeny tiny room barely large enough for her warmer and the ventilator at the very back of the room.  So not only did I feel completely overwhelmed, it felt like I was intruding on the lives of all the other families living there.  As we made it to the room, there was her "team" doing their rounds.  Sometimes, they envelope you in to what is going on, other times they act as if you've never stepped foot into the room.  As I washed my hands for eternity, the main doctor stepped out, introduced himself and began to tell us some of the issues they were uncovering. Pulmonary hypertension (high blood pressure in the lungs) heart problems...kidney problems....possible genetic testing. The pulmonary htn being the main concern .  He explained to me it would be some time before I could hold her because disturbing her body would only put her in a more precarious state. I knew it was important for her to be healthy, but I was so desperate to hold her.  I hate to even speak it, but I was afraid  she would die before I got to hold her in my arms.
  In those first few days,  I recall the main doctor discussing discharge plans with me and how much follow up we'd be needing to do for her regarding all her medical problems. 

Matt (my husband) was barely able to be at the hospital as he was trying to handle the children we had at home and continue to work. Bethany (our oldest) was only 10 when Lillian was born.  So we had a 10, 7,5, and four year old at home.
 I could barely walk as I was dealing with my recovery.  Not only was I sore and in pain from stitches, I had had an external aversion...( Lillian had been breech so my doctor physically turned her externally, then following that, I'd had an amniocentesis)my feet were so huge from swelling I couldn't wear shoes for two weeks. My blood pressure was still very high and of course the post partum was rough.  I remember taking showers in the morning and feeling so dizzy, I thought  I was going to pass out.  It was very difficult to sit on the shower seat, so I really didn't have too much choice in standing.
  I was pumping every two hours around the clock although the nursing staff told me not to that I need to sleep through the night.  I just couldn't do it.  Not only was falling asleep a huge task, but the only thing I felt like I could do in a helpless situation was provide milk for my sick little baby. Of course, I was barely getting anything out and the first time I actually got a couple ounces, I was so excited, I rushed out of my room to take a shower and locked myself right out.  I was making a call to securtiy at some ridiculous hour of the morning. 
After a few days of waiting, her pulmonary hypertension started to get better and i was able to hold her, but due to her being unstable, I'd have to commit to holding her very still for very long periods of time. Not only was it hard to hold her, it was hard to be able to hold her.  She required two nurses to move her.  When you are in a room with so many sick babies, it's not always easy to procur an extra set of hands.  I know that sounds like an easy task, but when you are in a lot of pain while sitting and you are desperately worried you are going to kink the ventilator...and you're drinking 2 liters of water to help with milk production, it tends not to be a very relaxing situation.  I had to remind myself to breathe.  The joy, oh the joy of it was just indescribable.
 I had no idea of how rough the road was going to get.

Flashing Back Part 1

I never kept a diary of what life was like when Lillian was born.  At the time, I thought I never wanted to look back and reread those terrifying days.  Five years later, the memories still dance around my head vividly.  It has been on my heart to maybe do some blogging on those early days.  Sometimes, I think it will help me to do it, but mostly, I feel it impressed on my heart that it might be out here in the virtual world to maybe help someone else.  Maybe someone else going though a similar situation can identify with.  So....as I remember those days, I'll share them here.  Try to honestly convey the events and emotions I recall.  Let's start with birth.

She was blue head to toe.  We had been told she might have trouble breathing due to being a bit premature, even with an amnio showing mature lungs, she might struggle.  I wasn't too concerned when they began to breathe for her with the ambu bag.  Her little body pinked right up and they would stop bagging.  Five seconds later, she was blue from head to toe and they were bagging her again.  Repeat, repeat, repeat.  She was in a warmer just a few arms lengths away from me and my eyes were glued to the chaos that was ensuing.  They just kept bagging her over and over again and they nurse couldn't stabilize her long enough to even transport her to the nursery.  At some point, my OBGYN left the work he was doing on my and went to the warmer as well.  That was a defining moment for me.  I knew.  I knew right then something was very wrong.  I remember hearing my OB call out to the desk for a pediatrician to be called ASAP, then at some point there were multiple staff members moving the warmer and bagging her and getting her to the nursery. 
After the doctor finished with me, he left the room to go the nursery to help until the pediatrician arrived.  When he did come back to the room, he let me know that she would be transported to a "big city" hospital very soon, they were just trying to decide which one.  He must have been in there with us a while.   Matt, my mom, and my sister in law were all in the room and I remember after he left just closing my eyes and breaking down into tears.  My sisterinlaw laid across me in a hug as best as she could.  I think I was just in shock.  My husband kept saying.."oh, she's going to be fine" My sisterinlaw left, in tears as best as I remember.  The pediatrician and my doctor entered the room at some point together and introductions were made and then the pediatrician gave us this news..."your daughter has a cleft palate and if we hold her tongue down, she breathes on her own, but she still can't keep her 02 sats up even with that.  something is going on that I don't understand. there is a team from Riley on the way here to transport her" the team arrived fairly quickly, and before I knew it a whole team was in the room with her in an isolette.  I reached over and opened the door...she was on her stomach, sleeping looking so peaceful.  I stuck my hand in to her and she grasped my finger immediately.  It was more than I could bear.  The team told us she had pierre robin syndrome and she'd have to have jaw distraction surgery and she'd be in the hospital for at least a month.  They would put metal rods in her jaws that would have to be turned daily to advance her lower jaw so she could breathe.  Then, they whisked her away.  I don't remember too much after that...I recall waking up at four thirty the next morning and crying as soon as my eyes opened.  The reality of the situation hitting me like a load of bricks.   I know Lillian was admitted to Riley just after midnight, so I can't really recall when Matt left or anything after they took her away except waking up at four thirty.  The nurse happened to be in the room and she brought the phone over to me and dialed the hospital and got the nurse taking care of Lillian on the phone.  Her name was Beth (short for Bethany).  She was so kind to me as I wept while she talked about how good they were taking care of her.  I don't remember much after that except when I finally got to the hospital to be with her.  There were several phone calls that day for permission to intubate her and take her to surgery.  I arrived at the hospital the evening after she was born.  I got to the floor to see her and my sister stayed in the room I was sleeping in until I fell asleep. 
The photo in the upper right corner was taken the next day when I saw her.  I couldn't get over how much she looked like her Daddy. 

Updating

It's been awhile and one would hope that means a little quiet time around this house...HA!!  That's a good one...just the way it goes in a household this size, I reckon. 

I never got a letter from our secondary insurance on Lillian, but she still is showing eligible, so that's good news.  Not sure if they are still waiting for documents or what, but I'm just happy it's still active.  Praise the Lord!

A couple weeks ago, she got really really sick...I mean like going in the hospital in 24 hours sick...turned out to be stomach flu and we were blessed to be able to manage at home, but it was touchy for a day or two. Took her three days to get back to tube feedings with formula.  Those are always scary days for this Momma.  Unfortunately, the WHOLE family, minus big Daddy, all fell to the evil stomach bug.  We had never had a whole househould of kids sick at the same time...not pretty friends, not pretty at all.  I will leave you to only imagine the gory details.  ICK. 

Her OT told me today how much she could see improvement in her strength in her hands, she was able to really pull on the putty that is one level down from the toughest putty.  (i never knew there was such a thing as levels of toughness of putty...while it makes absolute sense, I never even considered the matter)

Her Speech Therapist is a mixed report every week.  Some days she swallows and shows lots of interest in the foods offered, and other days it's a total no go.  She does come out with words and sounds now and then...more frequently, I'm just trying to be patient. Yesterday, she was just sort of grunting at me, and I said to her kind of firmly, "use your words or signs, Mommy doesn't know what you're saying"...well, she snapped into the biggest bunch of babbling you ever heard and I STILL couldn't make heads or tails of it.  Good...I know, but hard on me.  A pain I can't quite describe.

So I'm sitting here reviewing the days events in my mind and I find myself tearful as I think of the difficult parts of the day.  She fell repeatedly today slamming her head into the hardest surfaces...coffee table, hard wood floors, cabinets... sounding like a watermelon is being broken open.  No blood, but lots of knots and tears.  Then my mind starts to race...are her ears infected, is this just her "norm", is there something else going on to make her more unstable??  Oh man, it just never ends sometimes.  I found myelf almost in tears making her formula this morning. I know, sounds ridiculous.  I think it myself, but you can't imagine how to you just want to snap your fingers and all these issues disappear.  For her not to have all the struggles and battles.  I know I know, I recognize all the blessings and growth and GOOD things that are happening, but somedays it just hurts.   I have recently been haunted by some of those early days' memories, some of those awful bad days and to remember them ,at times, is just as painful as the day they happened. 

So I guess I should end with this, Lord, ease my troubled heart tonight, I know you got it all anyway....I extend this prayer to those other Moms out there walking a much more difficult road than me. Give us your peace.  Continue to give us your strength and remind us daily the blessing we've been entrusted.  In Your Holy Name.

We had a nice long run

Lillian started running a fever some time last week.  Last Sunday perhaps.  Anyway, I started her on antibiotics and that's the story.  Same old symptoms, fever...cough...added breathing treatments.  I think it's under control though.  She went about /8-9 weeks I think without illness.  Woo hoo!  I'm so glad she had some reprieve as this last year has seemed sickness filled.  We had our first camping trip of the year which turned out to be a lot of fun. We went along with three other families and it was a good time.  Lillian enjoyed it just as much as she did the previous year. 

Over the years of maintaining this blog, I've come to meet and love other women and their kiddos from afar.  I've only "talked" with some of you online and yet it seems I've known you my whole lifelong.  I've felt, for the last couple years, a strong desire to meet one of the awesome people I've come to "know" in the blogosphere.  This particular year...honestly, all I can say is it's Jesus' leading that is impressing upon me to make a trip to meet her.  So, I'm making plans for a little road trip here soon.  I really can't hardly wait.  I'm holding out to make reservations just so I can get a better feel for what the weather might be like. 

Its time for Lillian's heart checkups so I'm hoping to get that taken care of before summer's up and let me tell you, it seems to be flying by.  We still have no word on insurance issues yet. Leaving it in the Lord's hands, because that's all I can do.  Wondering what my life is going to look like as Lillian begins Kindergarten in a few short months.  It's certainly uncharted territory.  I always worked before her birth...and still don't think with her illness issues I'd be job material just yet. 

That's what's going on in our world...summer hasn't seemed very restful yet, and that's what I was hoping for.  Oh well.  My eldest got her first job this summer and it's working out just wonderful....she's about to have her 16th birthday and I just don't even know where the time has gone.  Cannot even believe she's gong to be driving, though I'm actually looking forward to it.  There are days when it would be so handy to have an extra driver. 

That's just about as good an update as I can think of right now.  Heading to bed. 

Celebrate!

Today is the day, 18 years ago, I experienced a very new and different kind of love.  My sister gave birth to my nephew.  It's hard to believe he's now a man..not a little boy.  My sister, bless her heart, is struggling with the fact that her baby boy is growing up.  I don't know if she'll make it through his graduation.  As I've contemplated her last post on facebook about needing a good cry, it got me to thinking.  It's interesting how in life we can't wait for our babies to be born, we can't wait to have that first birthday party, and hit all those growing milestones. Then, as our children age in the blink of an eye...really....we struggle with seeing them "grown".  Driving and graduation just seem too soon upon us.  Today, I was wishing I had some loving words to maybe help her cope and maybe not seem so sad.  Then it hit me.  We should celebrate the fact that he is 18.  He has lived on this earth, a relatively good life with no serious issues.  I can only hope that Lillian will celebrate an 18th birthday.  Why should I mourn any of the years my children continue to grow.  I thought of friends and people I don't even know that no longer have a child to celebrate with.  So, today, I choose not to be sad that he's no longer a little boy (and honestly hasn't been in some time).  I choose to happily celebrate the fact that he is LIVING and GROWING.  That is how I'm going to choose to celebrate from now on.  Life is too short and we are never guaranteed a tomorrow. 

Happy Birthday Larry!  I love you!

Praying for favor...

Lillian has been doing great physically...she is kicking up a little bit of cough the last few days, but has not been sick in about  6 weeks.  Praise the Lord. 
You know how it is when things are just going along really well...yeah...there is generally a hiccup in another area.  I am asking you all to pray for favor in regards to Lillian's secondary insurance.  The state is dropping her coverage as of July 1st.  She receives it due to our income level, but since Matt had some extra overtime during our reevaluation period, they are dropping her.  We are in the process of trying to get her covered under a different program, but that is all to be determined.  I don't really want to go into all of it....I know God will continue to provide, it is just so hard to not fret about it.  SO, please if you don't mind, keep this big issue in your prayers.  Thanks.

Pre-K Graduation 2012

Here's the thing...when your baby starts out in the life without breath in their body, you're never quite sure what you're in for.

 THEN...you get to see this....your baby sitting in her prek graduation.

 and you're trying not to cry because

all you can think of is the fact that she made it through all of this....

 and she's happy.  period

and you will find out how much you miss these folks who have been so integral in your baby's life.

It's a wonderful, happy, bittersweet event, because you just never knew what the future would hold. 

M-O-M

Lillian has just started saying "mom" .  Both "m" sounds, the 'aahh' sound .  For the longest time she signed mom or she has been saying Maaaa for the longest time, short a sound.  Just a few days ago, I actually heard her say "MOM".  It's like her word now to see me and say it over and over again.  It melts me.  Truly.  I can recall the early days of her life worrying that she would not know I was her mom, that I was just another nurse caring for her.  I couldn't cuddle and hold her the way I longed to and she smiled for the first time at Matt.  I cried on his shoulder one night sharing my fear.  At that time it seemed so reasonable, looking back I know better than that, but when you are sleep deprived and starting on this journey your brain takes you bad places.  Her saying 'mom' just makes me think how much words can really affect a person.  I look back on my days as a young mother and there were days, particularly in the car, that all the girls would be babbling away and all I really wanted was for them to just settle down and be quiet for a few minutes.  How much it was driving me crazy not to just have some silence...a year or so after that particular time I began to really regret ever having those thoughts and never ever took the opportunity to try to silence their chatty hearts no matter how crazy I thought I would get.  Today, five plus years of having a little one who works so so hard to speak...and speaks words very seldom, I'm acutely aware of how grateful I am for the words that pour from my childrens' mouths.  Young mothers or even seasoned mothers, enjoy those loud, talkative, inquisitve voices.  Cherish them.  Life is so short and those moments are precious.  You never know what tomorrow holds.  Hide their words in your hearts.
 So many issues have been difficult in this walk with Lillian, but I have to say the nonverbal part is especially hard for me.  I believe there are so many thoughts and words in her mind that just can't find a way out right now.  I try to face the reality that they may not and that's ok. 
Just some thoughts from a Mom who is trying to live and learn and do my best on this 15th year of celebrating  Motherhood.

The Dreaded Case Conference

Well ya'll....I did real good...for ALMOST the whole conference.  I had prayed, I have talked, I have acknowledge things to myself....and I felt confident I was ready to have this meeting.  So, as usual, each discipline (starting with Psych) shared Lillian's IQ, testing, goals, achievements, and further care needed.  She does happen to qualify for the special ed program due to her moderate cognitive delay as a primary reason and speech impairment secondary.  I was doing great until the special ed teacher from the new school she'll be attending started talking.  She was walking me through a "typical" day at school.  She got to recess and lunch and I thought I was going to puke.  All the walls built up in my mind came crashing down.  Recess with multiple classes???  Eating lunch???  (all this in my head, mind you) I felt it was probably better to cry versus puke.  I think all would concur.  So, I did just that.  I started to cry and the ugly cry almost snuck up and bit me.  Of course, everything in the room stops.  The principal from the new school jumped in and kindly asked me to please share what caused my breakdown and just to lay everything out.  I jumped in to all my concerns, her health and safety.  Period.  I told them it was way out of my comfort zone to imagine her on a playground with lots of children.  I don't want to keep her in a bubble, but I know my kid and the needs she has.  Few adults have the grasp of that and other kids...oh my.  Basically, I got myself together in short order and reined in the ugly cry...thankfully.  I just had a moment of sheer panic take over and it passed and we got down to business.  Lillian will attend full days 3 days a week and 2 days half days, those being days she has therapy outside of school.  She will slowly integrate into an art special with her peers after a time of adjustment at school. This is all subject to change as Lillian's abilities dictate how she handles it all.   I will meet with the school nurse to discuss Lillian's health issues in depth and train her on the  feeding pump.  It's funny how you get these plans set up in your mind and then as people discuss issues and needs it becomes clear what decisions need to be made.I opted not to send her to ESY (extended school year) and I hope that is a good choice, if not, well...I guess we can just add that to my MOTY accolades.  Lillian will continue to work with her current therapists in OT and PT at school but we will say good bye to her ST and have someone new stepping.  It's always a little sad for me to change because you go through so much with these folks.  Leaving prek will be hard.  She's been there almost 3 years.  I look forward to her little graduation, but it will be a bittersweet moment.  Lillian's life is moving forward and it's great, but the transitions are not so easy all the time.  Kindergarten....how can it be?

Big shoes to fill

This girl loves shoes.  Just loves them.  She slipped these on and I just had to snap a picture, she was even able to walk a few steps before she took them off. 

She had an interesting week.  I dropped her off for therapy Thursday and just as I arrived at the gym, I was called back because she was kind of hysterical.  Turns out, seems she just wanted me.  She would not tell us anything hurt, just kept saying/signing Mom.  So, I went upstairs with her and we finished therapy.  That whole day seemed a little rough for her. 

Yesterday, her teacher sent home her psych report/test results.  Oh gracious.  Before I began to read, I told myself it would be hard to read.  While I know she is delayed, I know this, it's sometimes hard to read how delayed she is.  As I talk with various people that work with her, they consistently age her around 3 with some skills and 4 in others.  I know they are just numbers...but it's just hard.  Her teacher (and also my fellow warrior mama friend) said to me perhaps they (our girls) are just sometimes tired of all that they must deal with and go through every day and sometimes, crying is the only way to release. I know it all exhausts my Mama heart at times.   How much more exhausting must it be for her. 

Her IEP/case conference for next year is Monday.  My personal goal is to make it through without crying.  I'm glad to have received the report and been able to already know what will be said.  I'm finding peace little by little each day with what is coming.  I KNOW that is just some me not being ready.  I may have said this before, but it is difficult to have watched your child struggle to just live and then have them out of your presence 6-7 hours a day.  Left with people who don't know her "tells" and signs of her distresses.  *deep breaths*  Gonna be a long day Monday.  Instead of shoes, I'm just going to need some super big big girl panties. 

Testify...

I think I share my good stuff here, but just in case, let me share this story.  Monday, I took Lillian in for her therapies.  I was met by both her therapists (a bit odd as usually whoever has her first comes gets her, but since my brain is feeble I can never remember where she goes first...).  After Mrs PT took her away, Mrs. ST stayed and we chat a few moments about her health, and then she says...."did you get the letter from insurance?" Me, "no" According to her, our secondary insurance has cut her speech sessions in half.  No reason, just cut.  It's happening to lots of clients, she tells me.  We seem to be fortunate to only be cut by half.  Of course, our primary insurnace is already exhausted for the year as well.  I ask her if we can appeal and she says she can try.  I don't freak, which quite honestly, is my more frequent reaction.  I get in the car and start thinking...wow, she has so much need in speech therapy, what can they be basing this decision on. I think, I knew this day would come, I just didn't think it would be so soon.   I get to the gym and as I walk on the treadmill I just said a prayer for favor and handed my concern over to God.  Each time my mind would wander back to the subject, I would just close the box.  Nope, I gave it to God and I'm going to leave it there.  I spend my hour and a half in the gym and return to pick her up.  Mrs, ST comes out and says, I spoke to so and so with insurance and it seems I filled out the paperwork wrong.  So they just ammended it and we should have a new approval next week.  Praise the LORD!!  Wow, he took that one down in a hurry!!  I then told her, I just prayed for favor at the gym and we got it!!  Is that awesome or what??

Hmmmm

Lillian woke up this morning with a fever.  I cancelled her therapy and decided that it was time to see the dr.  She's been dealing with something for what seems like forever. We just got her feedings back up to normal.  So, we have to leave immediately because the office was going to close at eleven today.  Thank goodness they took her.  We go, only to find her lungs sound good and her ears are clear.  He placed her on a z pack ( i just finished a round of levoquin for her) He thinks maybe it's her sinuses.  Love her pediatrician, but sometimes it just feels like they might be missing something.  It's not like I want her to be sick, but that would be better than some unknown.  She is on increased breathing treatments and having these little asthma attacks.  She is blowing green out green stuff like no tomorrow...ugh. 
It hit me on the way home, that, hello, this is just the way it is.  The heart squeezing burden overwhelmed me and the tears just started to flow (mind you I did try to hold them off..um..yeah right).  I realize she is not sick in a way that other people deal with.  I am grateful for that.  It does not change the fact, though, that she is rarely, if ever, well.  It is just not what any parent wants for their child.  So, I prayed. I reasoned in my head all the ways that I'm thankful and grateful, but the pain of it just hit me like a ton of bricks.  (as it sometimes does) Scriptures started to flow through my mind

 Matthew 11
²⁸ “Come to me, all you who are weary and burdened, and I will give you rest.   ²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ³⁰ For my yoke is easy and my burden is light.” 

James 1

² Dear brothers and sisters,^[a] when troubles come your way, consider it an opportunity for great joy. ³ For you know that when your faith is tested, your endurance has a chance to grow. ⁴ So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

These were the two particular ones running through my mind.  This post was interrupted by  her vomiting due to fever she is now spiking.  Hopefully the tylenol will kick in and we can keep her feeding going.  Looks to be a long night.