Thursday, December 29, 2011

"talking"

Lillian's breathing at night does seem to be improving.  She is just having some light snoring mostly related to what position she's in. 

She is singing A LOT and making ALL kinds of new vocalizations.  It is like having a baby in the house.  Very much like the babbling noises a baby makes when learning to talk.  We get a lot of short, fast phrases that make sense too, but we really have to be paying attention.  She is still sleeping quite a bit too.  I think she goes back to her bed tonight, as I feel like I no longer need to be at an arms reach.  We were able to advance her feedings to normal as of today, so I hope that continues.  She will follow up soon with Dr Plastics and she's supposed to have her very first dentist appointment Monday.  I think the dental appointment, having been made so long ago, will likely be rescheduled.  Not sure I want a dentist poking around her mouth at this very moment in time.  I also think we may have to do some more training to get past the recent trauma of the surgery.  Not to keen on wanting someone in her mouth, can't say as I blame her. 

Thank you for continued prayer.  I know that is what continues to get us through! 

Tuesday, December 27, 2011

Not AS bad

Lillian's nighttime breathing seems to be getting better, she kind of fluctuates from really hard, sucking breaths, to normal sort of snoring.   I feel like I'm awake every hour because she is so restless or needs readjusted if for no other reason than to just induce a cough to clear some drainage.  It is my prayer that the inflammation is still there but improving each day.  (I just rearranged her and she sounds awful....crikey) She tires easily and we find her just sitting quietly from time to time.  She SO enjoyed opening gifts this year.  She hears the word present and she gets super excited.  She raises her hand and waves and vocalizes me me me.  When we went to Grandma's she even asked her Daddy to open his presents and he let her of course.  She loved doing it even knowing it wasn't going to be something for her.  I think her favorite gift may have been the "hair styling" accessories and her new mini chuck trucks.  Friends, she LOVES those little chuck trucks.  That being said, she has greatly enjoyed blow-drying our hair, her hair, her bald babies' hair....and anyone who will let her "dry" their hair.
 A friend of ours from church gave us some clothes for her and this vest she's wearing was in it along with lots of other adorable items and she just LOVES the vests.  Cracks me up.

I still feel like I'm trying to get back to a normal functioning schedule...HA..now is that a funny sentence or what?  Going to try to enjoy these days off with the kids home from school and treasure our moments together. 

Saturday, December 24, 2011

Five Years Ago

I left you laying in the NICU so I could be home to celebrate Christmas with your sisters.  I left you there, healing...and today I sit beside you as you sleep, praying for more healing. I know it is impossible to go back and even more impossible to undo decisions we've made.  All I can do, is hope that we made wise, informed ones that are for your very best.  It's hard to see you struggle to breathe, as that is how you came into this world... My hope, every day, is that you will not recall these difficult times and you'll only be filled with memories of the love everyone has for you.   Merry Christmas precious girl, Mommy loves you so much.

Friday, December 23, 2011

Home

It was a yuck drive home in nasty rain, but it was so worth it.  The doctor showed up in Lillian's room last night around 6pm.  He said we could stay or go home, and I said we are out of here.  I honestly can't believe some of the crap that happens when we end up in the hospital. 

Everyone went to bed last night and I felt so weepy,   I told Matt that I knew I should just let it go, but its so hard to know what your child needs and have to try to convince the medical people that I am right.  Makes me feel like I cannot care for her properly. 

I'm not sure I will consent to or hope for anymore surgery for any good long while to come. No matter how necessary we think it might be.    I pray she remains healthy and out of the hospital.  I honestly start to wonder if I can really keep sane, seriously.  This is the hardest situation I've walked through in my life.  It is the WORST feeling to be so helpless.  The only comfort is resting in the Lord and remember He has it all even though I don't understand it. 

To you ALL, family, friends and prayer warriors I don't even know, I can't even express my gratitude for you prayers, your thoughts and your supportive comments.  The angels who arrive at the door with a meal for my family...friends who will help out with the kids so Matt can go to work..you just can't imagine how much it means.  Thank you so much.

Lillian had a rough patch through the night, but slept and was better once some pain medicine kicked in.   Her breathing sounds terrible while she sleeps, but it seemed less labored later in the morning.  I hope that means the inflammation is going down.She is playing around the house and I'm being a big old bump on a log.  Think I'll take nap maybe.  My mind  wants to make cookies but my body is still trying to recoup from 48 hours of mostly awake time.  It's amazing what your body can do. 

We are already hearing lots of new vocalizations from Lillian and gives me great hope for her communication abilities, I can't hardly wait for her to start back to therapy.  I've also noticed she's been able to take drinks without getting choked at all.  Amazing.  Now, if I could just make the kids understand it wasn't like magic and she will still need to learn how to use the new mechanism in her mouth.  :)

Thursday, December 22, 2011

Day 3

Lillian is continuing to have problems with secretions, fever, and vomiting.  If we could control her fever, I think she would be so much more comfortable, but keeping it in her gut is an issue.  So we called the surgeon to see if he would order a suppository and instead he wants her to be seen by a medicine dr.  SO- I am waiting for that doctor to show up.  Apparently he is tired of managing her care.  I am exhausted and getting fed up.  She is laying here miserable. Part of me just wants to get the discharge papers and head home.  Totally fed up.

Wednesday, December 21, 2011

Pharyngeal Flap 24hours later-

Notice she has her little leg crossed...
Lillian has been sleeping for a couple hours, since her three oclock feeding and dose of T3.  Interestingly enough, she seems to be mumbling and gesturing in her sleep a bit.  Her stats are hanging in the mid-high 80's low 90's, especially while she's sleeping. 
Todays points of interest:

1. No puking as of 10am.
2.  Still having fevers
3. Still needs O2
4.  Her eyes look a bit more normal now. 
5.  She has smiled on request twice
6. My chair broke as I sat down to read to her and I twisted my back, took the fall on my elbow, and lost my dignity for the rest of the day.
7.  Former patient families stopped by with very generous gift bag and slice of some tasty pizza (she has yet to waken to see gift)
8.  Hoofed it over to Norton Cafeteria, as there is only a Mcdonalds in Kosair....Guess what?  They have fountain MT DEW!!!  WAHOOOO...
9.  Got a 45 minute nap at 3....double wahooo!
10.  Realizing my positive "we are coming home next day" attitude, should have packed a hair dryer and bathroom needs beyond my toothbrush. 

I am really  hoping she perks up tomorrow or even tonight.  She cries when I move her. 

Bethany is attending her first winter formal tonight and Matt has arranged for the girls to stay with someone tonight so he can go to work tomorrow.  Isabelle is balking not to go.  Nothing like having your heart torn between two places.

My view

Her facial swelling is down some.  So far, she got a dose of T3 at 10.  Hoping that will stay down and give her some relief.  Her breathing sounds terrible, although it's not her lungs, it just the drainage and change in what they've done to her palate.  Her night was brutal.  I think I slept maybe 3 broken hours?  I don't know.  At 430 I hit the wall.  I kept thinking what a nice night we had before all this.  She just didn't look normal in the eyes AT ALL until just a little while ago. I found myself not knowing what the best thing to do would be.  Her nurse last night was great.  She got Lillian as her patient at 11.  I told her I bet she was glad to have gotten sick patient and unstable parent duo.  She just patted me on the back and tried to give me some comfort.   She spent most of the early night hours dropping sats down into the 70's.  They tried blow/by oxygen and that didn't help so they put her on nasal cannula about 2.  Her cough is so yucky.  This has been the culprit of the nighttime vomit volcanoes.  Today, notsomuch.  She is just puking because there is so much blood in her gut.  The Dr said the surgery itself went well..as planned but he knew her enough to remember it would not be an easy recovery, which unfortunately is proving to be true.  She took a couple sips of sprite after the last pukefest and has been in and out of a doped up sleep.  She is breaking into sweat cyclically, routinely drenching her hair and pillow.  I can't remember the last time I was so troubled by the sound of her labored breathing.  At least we KNOW it's not a lung issue. 

On the upside, the pleather cave window bed is not terribly cold as long as I get the blanket all around me.  Although, I almost kilt myself jumping up to get to her when my feet got tangled in said blanket. 

Tuesday, December 20, 2011

Out of surgery

Well, friends, she's out and it's not pretty.  She is miserable looking and acting.  Her face is swollen greatly and she is vomiting lots of bloody mucous.  They just gave her some zofran iv.  She is needing to sleep, but keeps fighting to stay awake. 

Monday, December 19, 2011

TRUST--&--PEACE

I was a speaker for a church Christmas ornament exchange a couple weeks ago.  I was able to share a little of my testimony of faith as it has unfolded over the last several years, altered greatly by Lillian's birth.    After I spoke, I really examined my heart and realized I was was probably wussing out a little when it comes to situations where I feel so out of control.  I DO believe God is in control and He's got it all.  I'm trying to learn how to NOT be anxious or fearful when it comes to surgery and everything else that pertains to Lillian's health.

Her pump sounded the end of her feeding and it triggered the thought in my mind, "YAY a whole feeding in with no problems" quickly followed by..."wow, it will take another month, after tomorrow, to get back to this point...again"

I have not allowed myself to build up anxiety, I've really tried not to focus on tomorrow's events at all.  I'm trying not to have expectations about what it may or may not do for her future. 

I've been feeling a bit jittery, edgy even. 

So, if you would, say a prayer, for her, for my family, for me.  Will update as I can post op. 

Saturday, December 17, 2011

Nostalgia

WOW!!  What a day....let me back up by saying I have gotten very poor sleep the last two nights, I could go into detail, but suffice to say I've not slept well.  I had a lunch date with a long time friend today and my Mom graciously kept 4 of the 5 girls (oldest at a friends) so that I could have lunch with my friend.  We sat and caught up for roughly 2 1/2 hours.  It was wonderful.  We get to see each other so rarely and it was great just to catch up.  I knew she had a Christmas surprise for me, but was overwhelmed to discover her church/church's daycare had put our family on their Christmas tree and she filled up the back of my van with gifts.  There really are no words to describe how blessed we are to receive such a generous gift.  It is the true feeling of humility and grace.  NOW, my girls will have more than three packages under the tree this year.(  I know Christmas is not about gifts...and they know that...but it is still difficult to not be able to give them as much as I would like to.  )  We have been very blessed to be on the receiving end of being supported for Christmas ever since Lillian entered our lives and there are really no words to describe the grattitude I have.  So, we had a nice lunch and a fun surprise, a few tears and I headed back to get my kids.  I enter my Mom's house, to find Lillian sprawled out on a blanket in front of the tv.  I almost wept.  Before my parent's divorced, anytime the kids stayed with them we would always find them laid out like that.  Just the familiarity of the scene tugged my heart strings.  Added bonus, to see Lillian in that way was extra cool.  After leaving Mom's, we headed to my SIL's house because she had a little Christmas gift for the girls and our family.  We got there and each girl got a small popcorn box full of microwave popcorn, a box of candy, a night shirt, and hot chocolate packages.  She then presented me with a big bowl of popcorn packs, cocoa, jars and dishes of Matt's all time favorite homemade goodies she makes..a huge pumpkin roll, old fashioned potato candy, fudge, apple butter, AND a DVD collection of old Christmas movies and cartoons.  Today felt like I'd been jolted back in time to when things were not quite so complicated...you know what I mean?    I am physically tired today, but emotionally filled with so much love and comfort.  Great great day. Just seeing all those people in one days time would have been enough!

Lillian's surgery is scheduled for 2:00, Tuesday afternoon.  We'll be there at 12:30.  Thank you for continued prayer!

Friday, December 16, 2011

Queen Lillian

 I am whooped or wrapped or whatever you want to call it.  Almost everyday, I bring down this back rest pillow for Lillian at her request. Today she requested her blanket too.  Sheesh.  I get her all set up on the couch.  Go sit in the dining room.  Five seconds later....
Her highness "requests" moving over to the loveseat.  To lessen the chances of a pulled out gtube, I go and mover her to her other couch throne.  I am a sucker. I think. Look at that grin. All in a day as the Queen's subject.

INsource

Last night I attended our local Special Needs Support Group.  This is only the second time I've been and there was a rep from INsource there discussing our rights in the education process for our special needs children.  Most of what she talked about just further confused me. 

Here's my initial thought process....I have this child of mine, who happens to have all these special needs.  I guess, I expect to learn as I go because I've never been in this situation before.  I know what I've been told by the people who have been working in this situation for way longer than I've been a participant in it.  Know what I mean? 

I guess the short version of last night is...we have rights.  INsource is a resource to help us make sure we are not getting steamrolled.  I did find out a few interesting tidbits, which tells me I NEED to read a huge document known as Article 7 and get to know it well. 

Other really interesting tidbit...Lillian is now being taught to communicate with ASL.  When we started working on communication in therapy, it was decided that Lillian would probably speak, so we should just try using signed English.  We bought a book and on we trod.  Well, here we are 4 years later, her ST doesn't think an Ipad is a good choice right now and they are teaching her ASL.  Guess what?  We don't know ASL.  HELLO.  WELL, according to INsource...the law states that our public school..ie the state is responsible for training us.  So, if they are using ASL as a means of teaching her to communicate...then they have to also provide training for us.  I just have to make a request in writing to the powers that be.  AND, if they deny our request then INsource will step in and advocate for us because all these issues are laws...people...laws. 

Now, back to my beginning point...I had NO idea this was possible.  I've often wondered about issues such as these, but didn't really know where to turn. 

I also made a new Warrior Mama friend. That was a nice bonus too. 

Wednesday, December 14, 2011

We like shoes, you like shoes?

 Are these things cute or what?
 Look at his little happy face!
Modeling her shoes!!  Almost too ashamed to post this picture bc of the mess in the background.  I guess if you didn't notice it before I've pointed it out now.HA!  I had to take this pic five times to get her to stand still.  LOL
She brought all these home today from school with a letter saying a local business donated them.  Can't imagine how many they had since  Lillian got three pair.  Pretty cool! Course, it probably helps that she has teeny tiny feet.  :)  What a nice blessing for us!!

Tuesday, December 6, 2011

Goofy Goober YEAH!!

If you read this, then you will totally understand these pics.  If you didn't read this, it won't matter too much, just give you understanding...enjoy!

Laughing even...what a nut!

Monday, December 5, 2011

Dr Lungs update

 Poor little girl don't have no toys....
 She has to play with her formula boxes...
Even makes a sidewalk...pretty cute with her baby, right? She's a queen on her throne! Ha!

I took these pictures over the summer and thought I'd lost them, but turns out they were just not saved to my SD card. Hello.
Dr Lungs wants us to do percussion twice a day.  Not only twice a day for fifteen minutes but with her lying down head on a decline.  Should be interesting. No?  He put her on Bactrim once a month for prophylaxis during the winter months.  We are also going to take a course of levoquin starting tomorrow because my pharmacy doesn't have a drive in and it is N-A-S-T-Y outside today.  Raining, cold, and WINDY.  The drive down there and back was intense.  Just trying to keep my vehicle on the road from the gusts and not hydroplaning was a trip.  Had a big old headache by the time we got there.  Thank the Lord for keeping us safe.  There was quite a wreck on the south bound side when I was northbound.  UGH.  God bless my neighbor who got Madeline off the bus, let me park in her driveway because mine is flooded ankle deep all the way across, and also gave me two cans of kidney beans for dinner so I didn't have to go schlep back out in the nasty weather.

Tried to take a bath a bit ago and nothing will bring you out of a tub quicker than the sound of a sickening thud thud thud and oldest child screaming out "OH NO OH NO"  10 years off my life...seriously.  Lillian took a tumble down the basement stairs where Bethany saved her from hitting the concrete...but 6 steps tumbling nonetheless.  What a day.

Irony

It's a funny thing.  When I was pregnant with Lillian, before I was put on bedrest, I babysat in my home.  The people's kids I watched gave us a playpen, high chair, and johnny jumper.  How funny is it that five plus years later Lillian is playing in the playpen. ( The oldest usually keeps it down in her room for her dolls. ) We had some family in last night and we set up the playpen in the living room because they have a baby we thought might need it.  Today, all I have done is watch Lillian pile items into the playpen, then point to me and then into the playpen, indicating that I'm supposed to put her in.  Same thing when  she wants out, first she throws everything out and then motions for me to put her in. Was never able to put her in a playpen as an infant and now she's in hog heaven playing in it.  Hilarious.

Friday we had a follow up with ENT.  She thought she looked great...although her entire face was swollen that day.  Today we have a follow up appointmet with Dr Lungs.  I dreamt all night last night that I was lost and couldn't find my way to the office and I kept walking around in circles in a hospital and noone could tell me the right place to go.  Needless to say, I didn't sleep well at all last night and Lillian woke up at 5:27 when her pump starting beeping and I didn't hear it right away.  I dread that drive down there today, I'm tired and its perfect sleeping weather here in IN.  Raining and overcast.  Lillian will likely sleep and then be up super late tonight.   Oh well.  Hopefully we will have a safe drive and the back ups will not be so bad.  They have a major bridge crossing closed down that way, so I usually sit in 20 minutes of back up. 

Wednesday, November 30, 2011

Tonsils out....S/P two weeks one day

Lillian continues to struggle with keeping her tube feedings down, particularly her first feed of the day.  She is coughing quite a bit at night and I can hear the drainage just sort of stuck in her throat.  She has spent the last 15 minutes holding her nose and blowing so hard I can hear it coming out her ear tubes.  She is having quite a bit of trouble swallowing ANY type of solid.  Most of the time she winds up gagging or getting so choked I start thinking she'll need the heimlich. She seems to be doing ok with liquids.  I am keeping her out of big crowds trying to avoid areas with tons of germs floating around.  Her therapists and I thought it best to stop therapy for this period of surgery time and since it falls around holidays, it's not  like she's missing all that much anyway.    

One would assume that after five years I would be accustomed to all this surgery stuff and especially all the illness she deals with so regularly.  Unfortunately, I don't think I am.  Does anyone else feel that way?  Holla back.  I think it's partly because I WANT her to be well so bad and not have to struggle so much.  I don't know. 

I struggle at this time of year.  It's not something that stays with me ALL the time...I think it is just the anniversary of when life changed so dramatically. Changes that  have been so incredibly stressful...but also indescribably blessed. 

I still can't really wrap my brain around the fact that in less than a month I will be handing her over to a surgeon, yet again, and the nerves and the tears and the hopes all mount up.  It becomes so emotionally taxing to put her through each thing.  I actually made it out of the OR this last time before the tears fell.  Then, I sat in the waiting room, staring out the window crying quietly...wondering to myelf  why do I cry....and it hits me that I'm weary, so weary of putting her through it. She is so aware of what is happening now, it's harder and harder.  She knows where we are and what is coming and she fights the medication they give her for calmness.  Even as I type, scripture fills my mind about not worrying about tomorrow...God is already there.   I know.  I know.  It's my faith in knowing that very fact that gets me through every day.  If you wonder how I do it...that's how.  Not in my own strength. 

Thank you Jesus for another day.  Another day with my Lillian and each of my girls.  I know your hand is on us and all that is to come.  Bring me Your peace. In Your Name

Friday, November 25, 2011

My Lucky Number

Five has always been my "lucky" number. Not sure why, but it has. Ironically, I have five children. All girls. All of which have changed me and made me who I am today. Specifically, my fifth daughter has probably made the most impact in my relationship with the Lord. I have been a believer since I was five years old. (funny, hadn't realized that significant five until just now) the same age my sweet girl is as of yesterday. We had a little party today. Smaller than originally planned because of her recent surgery and her upcoming one. I had visions of her little school mates and LOTS of friends who have traveled along this journey with Lillian. But, as time got closer and the surgery had its kinks and I started thinking of the germ factor....the party became a small gathering of some grown up friends and family. Mere words cannot express my joy in today's activities. Even as I stood making snack foods for the "party" I was struck by how blessed I was to be making them for the very event we were celebrating. I find myself thankful in even the most mundane tasks simply because I'm so aware of the gift of her presence. I'm so thankful for each year....each moment of her life and the life I have with her and all my family. Life could be so different and even in the midst of all the struggle....I'm so thankful...so blessed beyond words. Enjoy a peak into our FIFTH celebration!!







Thursday, November 24, 2011

Thanksgiving Memories

Five years ago, I woke up on Thanksgiving with searing pain in my head and tears from the pain of it.  My sister in law and niece worked together to make a Thanksgiving meal for all us because I was on bedrest, pregnant with Lillian.  We knew I'd be in the hospital the next day for an amniocentesis and and external aversion (where the manually turn the baby by pushing on your stomach).  Five years ago, we never imagined the journey we'd be jolted on to.  I am so grateful for the last five years and the fact that I am celebrating today with ALL of my children.  Happy Thanksgiving. 

Tuesday, November 22, 2011

This is the story of a girl

who is keeping very strange sleeping times since tonsilectomy.  A girl went  to school today whose mother had to pick her up half an hour after she'd arrived because she wouldn't participate or get out of the teachers' laps.  This same girl crawled up in her big sister's lap and in about one minute...fell asleep.   At 6:30 pm.  argh. 
SO- she missed her Thanksgiving party and her birthday celebration.  AND now, she sleeps...NOW?  Ai-yai-yai.  Not good at all. 

I guess it's safe to say she is not back to her baseline.  Her feedings are still not going 100%.  Pukage is still a big problem. 

Momma was having a BAD day yesterday, but I'm much MUCH better today.  You should see the post I almost posted yesterday...YIKES! 

To be Continued....

Thursday, November 17, 2011

Tonsils out POD 2

Lillian is not having a good day AT ALL.  She woke up this morning with a temp and immediate gaggin and wretching.  She actually slept through the night without pain medicine. ( her MOTY lost the battle of staying awake 20 minutes before the dose was due and didn't wake again until 5 which is when I gave her the dose she was supposed to have at 1230 *sucks in breath*) Anyway, I thought perhaps missing the pain meds caused the problem...BUT...when I started her feeding at 11, she seems to be ok until about 1130 when she became a vomit volcano.  Not pretty.  She pretty much emptied her gut...so plan B, I call my dear friend, Nancy, and ask her to bring us some pedialyte.  We get the pedialyte, I cut her rate in half and start again.  She dozes off and I think, ok, this is good...112cc's later, I run down to make a sandwich and return to Lillian puking her pedialyte, which continued on for 20 minutes. Plan C... Several phone calls later, her pediatrician has ordered her some zofran and changed her pain med to tylenol with codeine.  It's three oclock here, she's gotten a dose a zofran and in 20 minutes I will give her the tylenol 3 and start up some more pedialyte at a very slow drip.  She is not even wanting to drink now, which is bothersome, considering the throat really needs to stay moist or it will crack and bleed.  Her hydration is way down and I'm trying not to panick.  There is absolutely nothing routine when it comes to this poor girl.  POD 2, midday, pretty craptastic at this point.

Wednesday, November 16, 2011

There really is no place like home

Lillian is sleeping peacefully by my side.  She is so happy to be home.  We got home, Daddy took over, and I went for a nap.  Course I woke up feeling pretty rough, but it's amazing what your own bed and a couple tylenol later can do for you.  After a shaky, long, 24 hours, I'm feeling pretty good about how she's doing.  I worry a little about her sats dropping tonight, but hopefully all will be well.  She looks so peaceful right now.  So grateful and relieved to have this done.  I know we have to be watchful the next few days, but I am AMAZED at how well she handles it all.  We are keeping her medicated around the clock just to be on the safe side.  She is quick to grumpiness, but overall doing well.  I know it is awful to say, but I dread going through this all over again in a little over a month.  She's older now and so much more aware of all that is going on.  I think she is afraid to rest unless she's here in her environment.  THANK YOU ALL so much for your support and prayers.  I kept thinking to myself how I wished someone would just show up with a meal for us so it would be one less thing to worry about, and guess what?  I get a text as we are leaving the hospital, a dear friend had a meal in the crock pot for us.  See, He is already ahead of me!! It is awesome to see God work and know prayers are being said.   Last night and this morning were so awful and I was a mess.  I laid down and decided I was just going to bawl and I just began to feel a peace about me, I felt the Holy Spirit at work in my soul.  Bringing me comfort.  I watched Lillian began to rebound her sats and finally sleep some.  God is good and ever present.  Thank you Jesus.

Tonsils shaved out...POD 1

Lillian had a brutal night.  She coughed and coughed hard all night long.  She slept very little.  I think she is just too afraid to rest.  She is currently sort of sleeping, but her sats are hanging below 90, so they put on a little O2.  Been a long little while since Momma had to worry about sats.  She had several episodes of vomiting mostly related to the violent cough, but some not, so they gave her some zofran.  I think that's the only reason she is sort of sleeping now.  Something I find very strange, she is very disturbed by the sight of her IV in her foot.  I hate when they come in and flush it bc she just has a cow.  It looks to be in fine condition, but she  freaks out.  I need about 10 extra hours of sleep and auto pilot on my van so I can make the drive home, assuming they let us leave.  I have a bad creeping feeling about the oxygen need at the moment though.  I thought we already had discharge orders probably waiting for us, but notsomuch.  I guess we will see her DR after all.  I'm tired and feeling the overwhelming desire to have a big ole cry, but am holding back the tears bc I don't want to look like a crazy person if someone comes in. 

Tuesday, November 15, 2011

Surgery Update

Sitting in Lillian's hospital room waiting for her to come from recovery.  Procedure went as planned, extra medication applied to curb bleeding.  Waiting to see her.  Surgery time was pushed to three due to complications before her. 

Monday, November 14, 2011

Winner and Updates

So, Lillian is go for surgery tomorrow.  Have to be there at 1030am.  Surgery at 12 or 1230.  Overnight. 
The video shows what is coming to.......MANDY, one of my life long friends!!

Thank you EVERYONE who prays for Lillian and our family.  It means more to me than anything that you pray and come and check in on her life.  Bless you all ;)

Sunday, November 13, 2011

Drawing tomorrow

Drawing tomorrow, I promise, crazy day.  Stay tuned.

Friday, November 11, 2011

Dear Albuterol

BLOGAVERSARY GIVEAWAY CLICK ME

I thought in my twisted mind we might have said goodbye to you.  In fact, we have had to reinstate you to the family.  And not just for a quick trist...nay I say with more and more frequency.  Could we get by with just once a day??  No, no...no...could we manage with morning and night?  I think not.  Back to sometimes every four hours??  Say it isn't so.  I guess I shall thank you for your readiness and ability to heal a cough...BUT, can we make this reinstatement brief?  I shudder at the thought you may linger for an indefinite time.  

Yours Truly, Michelle

Thursday, November 10, 2011

Blogaversary and Giveaway

Three years I've been blogging here in blogger. I think it's time for a celebratory giveaway. Surely I have some faithful readers/stalkers out there....I hope. :) Leave a comment and that is all you have to do. I will draw a name Sunday and post the winner and what you are getting. Leave me an email address so I can contact you. The gift will include some of my favorite things. Thanks for reading and commenting.

IF you are new to commenting....click on comments, type a comment in post comment box, select anonymous in user box if you don't have google or anything, just make sure you put your name in the comment box..:) Is that clear as mud?   If you know me outside blogger, through facebook or personally or you aren't able to leave a comment, send me a personal msg that you read this post!  Easy peasy!


Monday, November 7, 2011

IEP

I sit here, thirty minutes past Lillian's IEP, struggling with my emotions.  The first thing they hit me with was Kindergarden and how as things look right now...Lillian would be shipped straight into a regular class with no help and about thirty minutes a week of individual education time.  It has been a fear of mine that they would just want to ship her straight to K.  I'm not a teacher or a doctor, but I KNOW Lillian is not ready for the general education dept.  She is delayed, she doesn't have concrete communication, she's physically delayed to a degree which I think would be dangerous to her in a normal classroom all alone.  Her teacher feels the same way.  I don't know even know if I'm conveying this clearly.  Her teacher will have her tested in the springtime again, in the belief that she will qualify for the special needs classroom at a different elementary school.  She would be in this classroom and spend thirty-forty minutes in a general education classroom with her peers each day with an aid.  The whole situation is stressful.  I have been told repeatedly that I should not worry about K bc it is so far away.  Well, guess what?  It's not.  These are decisions that have to be planned on and made in the here and now.  You know what I get more than a  little tired of...being told when and why I should be thinking on or considering certain issues.  The best thing I heard in that meeting was silence.  It is  A LOT to consider and decide on.  Bottom line, I feel like I'm stuck in between a rock and a hard place.  Just hearing the words Moderate Cognitive Disabiliy labeled on Lillian is a hard pill for me to swallow.

I just don't want her to struggle.  Just like I don't want to see any of my kids struggle.  It's been a bit of a rough morning for me.  Maybe in a way that most people can't understand. 

Medically, she is still battling a whole lot of snot.  Her mornings are rough with lots of gagging and choking.  She struggled with her food in speech this morning because of all the drainage.  My warrior girl just keeps going with the flow.    

Sunday, November 6, 2011

The 15th

Lillian has been recovering so slllllllloooooooooooowwwwwwwwwwwwwwlllllllyyyyyyy.  Let's see, did I already mention the "nurse" from dr lungs put her on a different antibiotic than he and I discussed?  Omnicef. Did I mention how she filled me in on the dangers of Lillian being on such a high dose antibiotic?  (levoquin) when I mention the name.  Since when do their opinions override the doctors?  Annoying.  I've had two doctors ok her being on that med, heck, if I looked at all the horrible side effects of all the massive drugs they've put her on, she'd have never gotten out of the NICU. 
 By this past Thursday, one of her ears had started to bleed.  My brain just doesn't comprehend how she gets sicker when she's on medicine to help her get well.  Frustration.  I have kept her out of therapy for the past week in order to maybe give her more rest.  Her surgery is now scheduled for the 15th.  Tomorrow, I have her IEP at school.  Dreading it all.  Doesn't help that my hormones are at their peak right now.  Just sayin.  Her disposition seems to have returned to normal, so at least we have that.  We gave her treatments every night for about a week and that seemed to make a huge difference in her nighttime cough.  Hopefully we will be good for surgery by next Tuesday and we can keep moving forward.  Going to be a fast week that will fly by me and I'll wonder where that time went. 

Sunday, October 30, 2011

Reschedule?

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

Tuesday, October 25, 2011

Support

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

Monday, October 24, 2011

Some results

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

Monday, October 17, 2011

Let the games begin

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

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

Wednesday, October 12, 2011

We find favor...

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

Thursday, October 6, 2011

Sunday, September 25, 2011

I know I must sound like a broken record

but I HATE puke.  I HATE that every time we have hooked Lillian up for a feeding for the last week maybe two...that she is gagging and puking with it.  Today, at her last feeding, it was more than just  a little puke, it was a volcano.  Projectile.  While we were in Noble Romans for my nephew's bday.  I drove home conversating with the Lord about why she has to puke.  Her whole life has been like this.  It can be SOOOOO discouraging.  Even from the time she was born she has struggled with this.   I hate that she cannot even really eat anything to make up the calories.  She does not have a nissen.  I don't really believe it is GERD.  She was on medications for over two years and they didn't make a difference.  Ususally, throwing up is her "tell".  Her tell that she is sick in some way.  Her ears are not oozing, she's not really coughing anymore, BUT, the vomit rages on.  People keep asking me how she's doing....PTL she's not in the hospital, suffering with some respiratory junk....she's not at her normal right now.  It is downright painful to see her suffer in this way.  She must be hungry.  I want to cry, but I'm not letting it out.  Remember, when I posted there are things?  This puke cycle is right up there with things I don't get. 

I've never been the kind of person who cared what other people thought of her when we were out somewhere.  But recently, there is a voice in my head that says..."hey, these people aren't used to seeing a child puke like this routinely"  and I don't want people that do know us that I've got her out exposing everyone to some stomach virus. 

Feeding intolerance.  That's what they called it in our genetics counseling sessions.  I guess I thought she'd outgrow it.  Here we are though, almost five years in, and she is still struggling with some of the same issues. 

Don't misunderstand, I am utterly grateful for the battles she's won....its just hard for a Momma to see her babies hurting.

Thursday, September 22, 2011

Getting some glasses

Here's a little preview of what my baby will be sporting pretty soon~~

Wednesday, September 21, 2011

How much can a tiny body take?

I'm just going to forewarn you that I may sound a little like a raving lunatic...

Today, I attended the viewing of the baby I mentioned Monday who had passed away.  I waited in line for an hour.  The place was packed.  I neared the guest book, and started to lose my resolve.  Tears pooled in the corner of my eyes, I've never been to a baby's funeral before.  I stood there, inching closer to the family, and his Mom was so distraught.  It was heartbreaking.  They kept stroking him in the casket.  He looked so sweet and peaceful, like he was sleeping.  Mom had stepped away from the casket when I got up there, but her Mom, his Grandma was there and I held her in a tight hug as she thanked me for coming up....*shakes head* The grandparents all appeared to be very stoic.  All I can think of is the days ahead for them.  How right now, they are probably still reeling in shock and how hard the next days, weeks, months, and years will be.  I mentioned them for prayer in our Bible study this morning, and like people do...someone mentioned that we had to remember God has a purpose in it.  I do know this, but at that moment, I wasn't really interested in particularly receiving her thoughts in the matter.  While I have NO idea the loss of a child, I've stood very close to it.  I know it sounds selfish, but when I experience what I did today, I think of my own children, which I think all parents do.  What would I do?  How would I handle it?  I think especially of Lillian and while she is SOOO incredibly happy most of the time, she is usually fighting something ALL the time.  I start to wonder how long her body can handle the issues she deals with 98% of the time.  I wonder if anyone else thinks that of their kids?  There are those who will say...you can't think like that...I don't think like that ALL the time, but in times like these..it's hard not to.

Lillian continues to struggle with her feedings and  I think I need to call the Dr tomorrow and touch base just to get his thoughts.  It's been a hard day. 

Tuesday, September 20, 2011

Brutal night

Lillian dozed beside me in the bed until about 11pm.  She began to writhe and whimper in her sleep.  Her facial expressions showed pain, she started reaching out to me.  Crying, she continued to twitch and grunt.  Something I'm not quite sure we've ever endured with her.  It took her about an hour, but she settled down and went back to sleep.  Round about 1am, she woke us screaming...I entered her room to find her face completely flushed and her vomiting.  She puked and puked and puked until her gagging, guttural retching, brought me to throwing up myself.  She jerked and pulled and cried out in pain.  It was really a stressful couple of hours.  I tried to comfort her, asking her if her belly hurt.  The grunting seemed so strange.  I was stuck, right there, not knowing what to do.  Something was wrong, I couldn't fix it, and she could NOT tell me what was happening.  This continued on for about a solid hour.  She finally laid down but continued to moan and grimace in pain.  I picked her up, tucked her into me and rocked as hard as I could on the bed.  I began to cry out to Jesus, in faith, to take away whatever was going on with Lillian, and give me discernment to know if I needed to take her to a hospital.  I must have done this for close to an hour.  She finally fell into a restful sleep and slept until we woke her this morning, our car wouldn't start and we had  to take Daddy to work.  She seems OK today.  I just started her first feeding of the day, so we'll see how it goes.  It's hard to be in this spot of wondering if a medication has caused this or if there is something related to the bronch, or if there is just something else going on in her body.  I'm thankful today for answered prayer.  She is seemingly no longer in pain and I hope whatever it is has indeed passed.  What a night.

Monday, September 19, 2011

There are things

in this life that I will NEVER comprehend.  I spent this day in prayer for a friend who found her five month old baby in his bed this morning, not breathing.  A perfect, healthy boy.  He sits in the arms of Jesus as I type this.  I sat in a prayer meeting this evening wanting to cry out, I don't understand...I wanted to wail in the unfairness, that this young mother, will have to bury her son.  Her one and only son. Her first and only child.  I still find myself constantly wondering why this had to happen.  How can I comfort this family?  I find myself in tears, wishing things were different.  I opened my bible to do my evening bible study, the first section asked me to memorize a passage in Daniel.  The first verse was so impactful...v 20"Let the name of God be blessed forever and ever.  For wisdom and power belong to Him" v 22 'It is He who reveals the profound and hidden things, He knows what is in the darkness and the light dwells with Him." These verses are in Daniel chapter 2 as Daniel seeks God to give the King an interpretation of his dream.  I find some comfort in the words of Daniel.  Tonight, the Pastor read about Mary and Martha weeping for the death of Lazarus, telling Jesus if He had only been there, Lazarus would live, and the bible says, "Jesus wept".  I've wept, A LOT, today.  I weep for the loss of this precious boy.  I weep for the grief that must surely be engulfing my friend this night as she goes to her home.  The home that just the day before held the laughter of her son.  I weep because I want to KNOW.  I want to understand.  I weep and I pray. 

Isaiah 55:8-9 "For My thoughts are not your thoughts, nor are your ways My ways, declares the Lord.  For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts"

Romans 8:28 "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."

Friday, September 16, 2011

Long Day

Update.....Right after posting this, Lillian spiked a fever. After speaking with Dr Lungs, he said he took a look at some of the preliminary findings and it looks as though something bacterial is growing in the lungs.  We are to give the levoquin 24 hours and see how she does from there...




We arrived to the hospital for Lillian's chest xray and bronch.  We were to be there at 1030am.  Upon completion of the xray, we went to surgery and things moved rather smoothly until the administered the versed.  They gave it to her and then it seemed to take them forever to come get her.  They also insisted she have an albuterol treatment, which I don't like...but pick your battles, right?  Anyway, they took her back and they did biopsies and sent them for several different tests and cultures, some of them will be sent to Yale for study and those particular results won't be back for 4-6 weeks.  He is supposed to call me in the next week with results from some of the cultures.  We sat in the waiting room for quite a while and I started to get that uneasy feel of wondering what was taking so long after the doctor had spoken to us.  We finally got called back and were told that she actually coughed up quite a bit of blood.  Typical is pink tinge secretions, but she had spewed up blood.  They had to call the Dr Lungs back to look at her again, and he said we just need to keep an eye out for anymore.  He took some lovely pictures and even gave me a copy.  He did find some granulation tissue at the stoma site and said we just needed to keep an eye out for breathing issues.  He also pointed out the words I've always dreaded hearing...tracheal malacia.  I always sorta thought in my head we had dodged a bullet, her not having that particular affliction, but apparently some has developed.  He seemed pleased with the results, but it always makes me uneasy when they tell me there is something new....as many bronchs as she's had and no doctor as ever diagnosed that.  Now we wait.  He did order her back on Levaquin due to her recent coughing that has stirred up.  Thank you for prayers.  It has been a long day and she has just now started acting like herself. 

Tuesday, September 13, 2011

An oversight

I've already been struggling with the fact that Lillian will have to go to Kindergarden next year, right, I think I might have mentioned it a time or two.  Maybe not.  Let me back up a moment, I started volunteering in the library at school again this year. Started last week.  I almost had a big old break down just watching one of the little girls in the K class.  She was in Lillian's class last year.  She was doing ok, but just putting my child in her place next year, brought on quite a bit of anxiety.  I stuffed the thoughts in another place in my mind and went on about my duties. 

Today, as the aid helped Lillian to me at the bus stop, she said to me..."she is probably pretty wet, she had a lot of juice today" As soon as I picked her up, the smell of poop assaulted my nostrils.  I said, "ewww, and pooppy too."  I get her in the house, go to change her diaper, and find her diaper almost overflowing of poop.  (I can't think of better terms, so poop it is)  I get it, she could have done that from school to home...maybe....except there are defined reddened areas where poop has been on her skin for longer than a two minute ride home.  Now, my child, her skin is sensitive.  She breaks down quickly.  She's red on her lower back where poop has been pressing into her.  I go back in forth in my mind about what to do.  I'm convinced within myself that this is NOT a "just happened" situation.  I decide to email the teacher.  I was nice.  Factual.  I mean, I really am a reasonable person.  I'm not sure if I feel better after the response...an apology...and the words, this was an oversight.  I read on to learn the last time her diaper was checked was 2 when she was found dry.  She gets off the bus at 330.  You can do the math I'm sure.  Oh, and noone smelled it....ok.  I'm trying here people.  I'm trying to be rational. Right now, I just feel disappointment.  How am I supposed to be comfortable with her, a nonverbal child, being in a place for several hours of the day where at least 3-4 people, who work in CLOSE proximity to my daughter, don't notice something like that...and even tell me she is "likely really wet from all the juice she had at snack" ...but we didn't think to check her again for an hour and a half....seriously?  who likes pooppy diapers???  oh me me, me I do....Come on.  Discouraging.  An oversight.  *sighs*  I did also get the teacher's assurance they would check her from now on....thanks.

Monday, September 12, 2011

*warning* post may be scattered

You've been warned, that's all I'm sayin'.  I woke up late this morning, having set my alarm clock for 8PM rather than 8 AM.  Huh, go figure.  So, I woke up at 9AM, the same time I'm supposed to have Lil at therapy.  :/.  I was feeling very frustrated at a certain person, besides myself, for not having made sure I was up and going....I could NOT comprehend why he would not check to make sure we were going since he knew we have this standing appointment EVERY week.  I rushed around, threw my clothes on, tried to make my hair NOT look like the grease ball it was bc I was not going to get a shower before going into a public place.  Lillian was already awake, playing in her bed which I did not hear, probably because we have two fans running upstairs.  ANYWAY- I get her to therapy half an hour late, and rush home to shower.  My Mom calls me just as I've stepped out of the shower and my very short, frenzied Monday unfurls on the phone.  I found myself, blubbering away...pains in my chest with each swell of tears.  My head is saying, oh Michelle get a grip on yourself, it's not a big deal.  Not a big deal.  I started pouring out to her or at least in my head how difficult it is sometimes.  I don't complain to garner sympathy...I guess I needed to just let it out.  We have been approached by a few different groups through church to be involved in the youth groups.  My problem, I WANT to say yes, I want to jump in and DO it all.  The trouble is, I can't jump in whole heartedly and be dependable.  Here it is...the issue I'm trying to say delicately...I think, I may be upset because I just can't.  I have a child who is sick.  She can be walking around fine by day and sick as a dog by night.  That is who she is.  I accept that this is the season of our life right now.  I guess I found myself in a place before now, that people mostly knew that about us....here, they don't.  I find my soul aching when I try to explain these issues to people who don't.  Even as the words come out of my mouth, my mind is thinking 'they probably just think I'm lamely copping out'.  That's ok, too.  The Lord knows my heart and the whole situation.  Thankfully, my Mom, just listens and offers support.  (Thank you Jesus, for not giving her more "words" for me this morning.)  As I jump in my car back to pick up Lillian, one of my new favorite songs begins to play...Yaweh, yaweh, we love to shout your name oh LORD....I sat in the car and worshipped just for the duration of the song and found my heart so blessed and relieved.  I came home and received another phone call, this time Lillian's ENT. Her assistant to be exact.  Dr ENT has spoken to Dr Plastic and they want us to make an appointment for a surgical consult.  He wants us to bring the dvd of the procedure.  I have to tell you, friends...I'm unsettled in my spirit over this.  I haven't made the appointment yet. Lillian's ST has offered to attend the appointment. I'm very grateful for that.  It is mildly intimidating for me to face this DR again, who just a few short months ago, pretty much blew us off.  A lot for a Monday if you ask me, but this is our everyday.  Every. day.  Lillian will still be having her surgical procedure Friday, and the rest of this week is full of therapy, school, cross country meets,  bible study, church meetings and much more...Friday will be on me before I know it.  I know so many of my fellow warrior Mama's are bearing much heavier burdens right now, I feel led to share this verse...
Matthew 11:29-30 " 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. For My yoke is easy and My burden is light. "

Wednesday, September 7, 2011

Thank you, Jesus

The V&E was a success!!  I was a wreck this morning prior to the test.  The person who was going to go with me couldn't make it and I was a nervous mess.  I asked for prayer on FB, quieted myself in prayer,  and finally called my church and just prayed together with the Pastor.  So many things hinged on the outcome of this test...I was having one of those 'this is too much for me to bear, please take it God' moments.   He prayed with me and then sent our church secretary (also my dear friend)  on a field trip with me.  What a blessing!! Such a relief.  I don't think I stopped talking all the way.  Lillian tolerated the procedure, she did what the doctor asked her to do and we know for a fact this is a stumbling block for her  in the realm of speech and eating.  SO- Dr ENT is going to speak to Dr Plastics directly and see what other "proof" or testing he desires to go forward with a prosthetic or lengthening of the palate.  If he is still not on board, we will seek another opinion.  Guess I'm going to have to start praying over Dr Plastics.  Thank you so much for your prayers...God is good. 

Monday, August 29, 2011

Dr Lungs orders a bronch

We saw Pulmonary today. He wants Lillian to have a bronch done in two weeks. He's going to do a ciliary biopsy, BAL, and a flow somethin' or nother...I don't have the orders right here, or I could type it up. ANYWAY, it is a more in depth way to study her immunity. He also said her sinus CT was very severe in the stuff it showed in her maxilla sinuses. Very unusual...hmmm, we've heard that more times than I care to think about, right? When does my child do anything in the typical fashion? He said she also suffers from some type of rhinitis...can't recall his exact wordage..but it causes her to react much like someone with allergies, it just doesn't show up in allergy testing. So, back on nasonex...OH- AND, I told him we stopped using cingulair...and he said....sinus infection is a side effect of the medicine...is that for real? I mean seriously, I could have been making her sicker all along. Geesh. Or whichever one of them ordered it for her....crikey.
He ordered another chest xray bc he hadn't done one for her in a while, so we will do that the same day as the bronch. She will be in the bronch about an hour.
I kind of sit on the fence about this whole bronch thing. It won't really change the treatment regiment for her...BUT it could rule out further issues.
We have thought she was getting sick again for several days, she just isn't her "normal" self. He said her right ear is starting to drain. At least I know I'm not a crazy person, I think....
Her V&E has been rescheduled to next week, which is fine with me, one trip a week is enough for this woman.

On happier news, she was in the bathroom the other day, "straightening" her hair with a flat iron. All was good until she attempted to plug it in... crisis was averted, but she gave up on the task once I wouldn't let her plug in. She's a smart little cookie, that girl.

Sunday, August 28, 2011

Goodbye Facebook

Hey Bloggy friends, I'm taking a break from facebook. There are lots of little things adding up that bother me deeply, so I have deactivated my account. I'm not sure if I'll go back, although I like being able to send out prayer requests and the such, I'm not happy with most of what I see there. Just FYI.

Wednesday, August 24, 2011

Next week

Next week we have an appointment with Pulmo and two days later we will be going in for the much anticipated V&E. This is a procedure where they will place a scope up her nose down to the back of her throat and watch where her tongue goes as she speaks. In a perfect world. Her ST says she is tolerating the qtip up the nose pretty good, but still the biggest hitch...she cannot say the words they want to hear for the testing. :/ I have been feeling a little out of sorts for the last couple of weeks. A little edgy if you will. I think deep down, its the test. So much hinges on the test. I keep telling myself that it doesn't matter. Nothing ventured, nothing gained. I want to not care if it is unsuccessful. It is not the end of the world if she doesn't speak. It also doesn't mean that someday the test can't be done again. Ready or not, it's coming up on Wednesday.


Friday, August 19, 2011

Reality reminder

I see the progress Lillian is making as she accomplishes new things. I LOVE it! There is unspeakable joy to see her run, walk, or even swallow a piece of cereal. Yesterday, I had the opportunity to watch her in her physical therapy session. It was such a reality check of how hard she works to do things I take for granted. I posted a video a while back of her riding her tricycle. She can push the peddles about three revolutions and that is it. When I asked her therapist why she thought she only did it three times she said, "that is all she has the strength to do". It was like my heart was being squeezed. It reminded me how truly hard it is for Lillian to be able to do what she does do on a daily basis and a realization as to why she sleeps as much as she does. Sometimes, I guess I'm living in a fairy land. Maybe I can't even convey how I feel, but just to realize how much work it takes her to do what she can do. I love that she can go up and down the stairs with assistance, but it never really dawned on me how much strength it takes her to do so. I'm not even sure why I'm writing this, just on my heart.

Monday, August 8, 2011

When you can't sleep, count your blessings instead of sheep...








......and you'll be counting your blessings.....












It is one a.m. and I find myself unable to sleep, so I started counting my blessings. This week has been rough...Lillian sick, fevers spiking high and fast, ear oozing still, vomit volcanoes...to make a rough situation rougher, I became ill as did my eleven year old. Lillian's fever broke after five days. Me, I'm still hanging onto a little yuck, and Isabelle is better, but one eye is very swollen. Tomorrow, I think we will return to "normal" schedules. As I lay here, thinking of the past week, I'm so grateful Lillian is sleeping peacefully again and has made it back to her own bed. I'm struck by the awesome blessing it is to be able to have her in MY bed, right beside me. Not me falling asleep in a chair over the bed, or sitting up on the couch counting hours til meds need to be given. Now, to say I slept would be stretching, BUT, at least I could have her right here beside me. Able to monitor her breathing, her temperature, her movements so easily RIGHT beside me. Something I couldn't do for so much of her life. I vividly recall in that first year feeling so bewildered because I couldn't just pick her up from the crib to even comfort her. There was so much equipment and tubes and attachments.....oh my how I can recall the pain that sliced through me as I felt helpless to really BE a mother to her. I shed so many tears as I feared she would not bond with me or feel loved bc I could not physically show her my love. Counting my blessings instead of sheep.

Thursday, August 4, 2011

Shocking news

NOT. Even though we were confident Lillian only had an ear infection, I had to take her to the doctor this afternoon bc of her prolonged fever. Well, surprise surprise, she only has an ear infection. Her appt was at 140, I had an hours drive, she was only in the office about 10 minutes, and the rest of this time has been spent in the pharmacy. Long story short, I feel terrible, Lillian is in need of meds, and the pharmacy doesn't even have the courtesy to let me know I might need to come back in a while bc of problems with the script. GRRRRRRRRRRR Thanks CVS. A little communication goes a long way, too bad they didn't use any.

Monday, August 1, 2011

First Camping Trip

OH, no pictures of Baby Alli, please....

Mom, please pick me up, I don't want to walk in the lake...



Higher Daddy...





Wait, wait, get my good side...







Where do I start with this tent??










Yeah, that's right, I like camping.



Lillian did GREAT on our weekend camping trip. Unfortunately, she has been sick ever since we got home. She started with a raging fever, then we discovered a running ear, and later today we've discovered a bloody ear. We are on 24 hours of relentless fever. It was such a relaxing couple of days, and now back to reality with a vengence I'm feeling a little frustrated. I just HATE it when she is so sick. Hate it.






Thursday, July 28, 2011

Taking a "staycation"

I cancelled Lillian's therapies this week. First time ever I've cancelled her therapy for any reason beyond sickness or hospitalization or dr appts. I have to tell you, it's been WONDERFUL. I felt immediate relief when I woke up Monday morning and had to be NOWHERE. LOL. I am eternally grateful that Lillian is still able to benefit from therapy and insurance continues to pay for it, but, friends, this Mom is tired. I do not work outside the home anymore, but quite honestly, caring for Lillian and the rest of my brood is more than a full time job. I know, I know, I know, I am surely not the only Mom out there who grows weary from time to time. I've always felt extreme guilt when I've contemplated cancelling her therapy. I decided if we truly had a vacation to go on, we would have to cancel therapy. Since I won't be taking any vacation any time in the near future, to my knowledge, I decided this would be the same thing. So, it's a staycation. Stay home, pretend for a week, that life around here is normal. It has truly been blissful. We are capping off the week by going on our first camping trip. This should be interesting. It is supposed to be dreadfully warm and I'm seeing scattered storms thrown in the mix. Of course, we realize, our plans may not work out for Lil. She doesn't tend to do well in the heat, so we shall see. That is the non-news in this house lately.

Thursday, July 14, 2011

Immunology

Lillian's immunology tests came back just fine. PTL. At least we are ruling things out if nothing else. It sounds kind of sick to hope something shows up, but then that would be like answers or some solution to help her. Hopefully, she will grow some more. It is a struggle to keep her gaining weight, seriously, she was up to 29 lbs once and now she's hanging at 26-27. There for awhile, when she figured out how to run, she ran everywhere, she was probably burning some extra calories.
Today was the last day for ESY. I am so glad, between her school, therapy, and Bethany's summer school, it hasn't felt much like summer to me at all.

I have been down with an infection for several days and am so glad to see the pain finally subsiding enough to cross my arms again. You never realize how much you cross your arms until you can't do it anymore. ;0)

I need a vacation....

Tuesday, July 12, 2011

Happy 4th!!

She road her pony...played with random objects, flew off the back of the teeter totter swing...

Decided some fireworks aren't all that bad, but some really are....thoroughly enjoyed a great independence day!






































Thursday, July 7, 2011

Moving Forward

After spending time with Lillian's speech therapist, and she in turn speaking with our ENT, it has been decided that we will go forward with the V and E in August. Our ENT plans to speak with Dr Plastics and pick his brain. She aslo feels if we get the V and E done, we can go to him again with the results. We never do things the easy way, do we? Course, in this walk, I'm not sure there is an "easy way". I think I've found some peace, either way. It is par for the course. It just takes me a day or two to absorb the initial shock of things. I always have hope, no matter how disappointed I am. God works it all out in his time. My lowest moments are my strongest times in Him.

In her speech time yesterday, Mrs. Speech found out if she held her finger under Lillian's nose, Lillian could make a very clear S sound. It was AMAZING! It goes directly to evidence that her plalate needs more work to function properly. As hard as news comes that I'm not prepared for, I have unbelievable joy in just hearing the "ssssssssssss" singing from her teeth.

Sometimes I wonder if I should update on her blog as soon as I am able to, because I so don't want to sound like Debbie Downer, BUT, it is my hope that no matter what someone is going through, there is ALWAYS hope. If there is someone just beginning this journey, perhaps they will find comfort here. I write what is REAL, what is happening here in my insignificant life and hope it brings glory to God, because I know it all works for His good because I love Him. That is my hope.

Friday, July 1, 2011

Plastics Update

We waited a little over an hour for the Dr to come in and say, in less then three minutes, that Lillian is too immature and too delayed to even attempt studying the mouth/speech problems. All along, we have been being told that Lillian's speech is impeded due to her structural problems. Not that I know anything whatsoever, but I'm not sure how he can tell just by looking at her that she is too delayed to try the study. He assured me that he is very experienced in this area, which I have no doubts of, but it just seems like I'm missing something. I am SO disappointed, and that would be an understatement. I feel crushed. He went on to say it could be YEARS before she was up to doing the V&E. He told me there was no reason why she shouldn't be able to speak, so it was her brain development that is the problem. He sees that she is receptively there, but not able to get it out. He told me he didn't want me to be discouraged....um....ok. I just blurted out that I am discouraged. I then proceeded to cry and try not to cry so I could try and make sense of the things he was saying. Which made me feel like a complete idiot. He didn't seem to be at all impressed with the speech report I'd given him. He didn't even read it prior to making his decision. He then went on to tell me that he did these types of surgeries on kids who were 13 and 15 years old. If that didn't just want to make me puke. He also said her tonsils are pretty big and perhaps they should come out and that should not have any bearing on her speech...once again, contradictory to what the ENT has said. Also, we've seen three different doctors in the last month and all of them have had a different opinion on the size of her tonsils. It is mind boggling. Are they big or not? Then I feel like, if not one person can agree on the size of her tonsils, how much of what we are dealing with in the area of her speech is subjective? So, the car ride home again was brutal. Struggling to just accept it, really what other choice so I have? I was smacked in the face, again, with how hard this journey is. What a roller coaster. I felt, again, that overwhelming pressure of thinking how hard it is to bear at times. I remember on her first visit back to the developmental peds clinic, the doctor saying that her life should not bring our lives to a screaming halt. That the world did not revolve around her. Truth be told, when you have a special needs child the exact opposite happens. The dynamics of your family change, your finances change, it affects every single aspect of your life and sometimes, its a hard. Very hard.
My wounds are gaping and hurting right now, so please understand my venting. Sometimes, I just need to. As always, I'm thankful, just hurting. God is good all the time.

**something else I remembered...he also stated her tonsils are big enough, that if he did do more work to her palate, they could cause her airway to obstruct again.

Thursday, June 30, 2011

eeeeeeeeeeeeeee

OH MY WORD. Lillian just went to the fridge and said "EEEEE" (long e). I said "eat" she shook her head yes, I opened the fridge and she pulled out a bag of CHEESE....I'm just about to jump out of my skin. WHOOOPPPPEEEEEEEEEEEEEE!!!

Tuesday, June 28, 2011

Feeling better

Lillian is feeling better, her feeds are at least going better. She is still coughing quite a bit in the mornings, but her night time cough seems better or I'm sleeping through it.





Sometimes, I just wish I understood what her body is doing and why. I wish I could peek inside her and fix all those things that cause her troubles. For whatever reason she is prone to feeding intolerance. That in itself could make me a basket case if I let it. I just grow weary for her.

During church on Sunday, our SS lesson was about desire. We were asked what the desires of our hearts were. Before I knew it was coming, ( most of the time I know) tears were streaming down my face. Another classmate was sharing and when she finished the teacher looked at me, he grew concerned and I just stated my desire was to have my daughter be healthy. That was all I could muster. Immediately I was surrounded with friends in the class praying. Being new in our church, few people know the journey we are walking and have already walked. I'm so thankful to have been there at that moment. Later, during the service, the same topic was preached, and I began to think, perhaps the desire of my heart is not what it should be. My child is ill. Medically fragile. While I desire that she be healthy and believe God can take all that away, perhaps my desire should be to accept that she is not. I continue to raise her up to Him. He knows my desires even before I utter them.

Thursday, June 23, 2011

Update

Lillian woke up this morning choking, coughing, gagging, and puking. I went ahead got her off to school bc I thought it was just a morning drainage issue.....BUT, when she got home and I hooked up her feeding, she immediately started gagging and puking. We have been religious with ehr miralax so I know she's not constipated. This incident escalated to the point of what I believe was an asthma attack. She was retracting pretty badly... She spiked a temp and fell asleep in my lap. I called the doctor and wanted to get her seen, she gagged all day yesterday off and on, and didn't get her whole feedings in yesterday either. They scheduled her an appointment. I was concerned that her gtube being ripped out my have injured her stomach....the dr called back and wanted her to have chest and belly xrays. Bottom line, she has sinusitis, parabronchitis, and a paralytic ileus. He put her on a 10 day course of Levoquin and wants us to give her stomach a rest tonight and then very very slowly adding back her feeds and hopefully getting her back to 150 ml feeds by Sunday. The ileus can be paralytic due to shock to the stomach, so it could have been the gtube issue or the fact that I have slowly increased her feeds over the last couple weeks. Always an adventure with my girl. long day.