Status Post VCUG

What a terrible, I say terrible way to start a morning.  We arrived bright and early to Kosair for Lillian's appointment, which we needed to be a half an hour early for only to have to wait and additional 40 minutes plus after her scheduled appointment for when fluoro was ready for her.  Grr.  You know, waiting is just a part of it all...but it just increased her anxiety by leaps and bounds.  They gave her a dose of versed...the versed essentially is just supposed to give them amnesia....well I sure hope it worked.  It was awful.  It took four of us to hold her down...she was screaming bloody murder and fighting with every little ounce of her being.  The procedure is as follows, they have to put in a catheter and fill her bladder until she basically can't hold it and pees and then they take xrays to see what happens when she is peeing.  There you go.  The machine is huge which is really what terrifies her...it was awful.  She kept screaming "DONE DONE DONE" while weeping and fighting and screaming and wailing.  At one point it was so pitiful that I almost broke down into tears myself and I just knew that would make it all worse. One word...TRAU.MAT.IC.  Then I was upset because they told her when she peed it would be all over so when she peed and she wanted up, they continued taking pictures. Hello, they shouldn't tell her it's going to be over until it's really going to be over.  *shaking head*
My nerves were shot and I still feel bad about it.  After it was over she was totally hung over from the versed. She couldn't walk, but she doesn't know she can't walk because she's gorked out of her head.  So we get her strapped in the stroller and head to take the other girls shopping with their Christmas money.  First thing on the agenda needing to be lunch and it was a nut house at Chikfila, so we head to the local mall and finally get something and Lillian is just emotionally all over the place.  Crying every other minute and me wondering what in the world I could have been thinking that shopping was a good idea.  I really wanted to cut bait and run so to say, but I truly didn't want to disappoint the other girls.  I was totally exhausted physically and mentally.  I could not get the days earlier events off my mind.  Then I had nightmares through the night about the girls being caught in a fire and not being able to save them and actually watching two of them burn alive.  OH- AND- this is the ONLY good thing about this test...the radiologist is right there doing it and so she was able to tell me the results immediately..which unfortunately was not good news.  She still has reflux in both kidneys.  BAH. As I sit here and reflect on the whole thing I feel even worse because I don't think I ever thought to pray that she would go through the test without so much trauma.  :/ So now we will have to wait and see what course we take next, I'm thinking at this point she's going to need stints.  I don't know though.  This whole ordeal leaves me with one thought alone...I wish I had some versed because I'd sure like to have some amnesia.   People tell me all the time how strong I am...folks let me tell you it is heart breaking sometimes and it takes a mental toll I don't think I can ever really explain to someone who isn't walking through it.  Not only do I have to deal with these issues there are bills and insurance and SSI and therapies and endless...endless other things to take care of.  I'm no different and it's rough and it seems like the last couple weeks have been stressful ones in one respect or another.  I think I need a good cry and some versed...did I say that already?

Anyway, we had a wonderful Christmas and I'll post some of our Christmas Eve pics as soon as I get them on my PC...I didn't get any Christmas pics because I was nursing the little man while everyone opened gifts, but as soon as I copy the ones that were taken I'll be sharing.

A traumatic day

Let me just preface this by saying....Lillian has endured much worse.  Many many children endure rough events and health related issues that are awful every day...but just today in our little world Lillian had a bad day. I totally have perspective...just documenting our journey here. We had her well child visit at the end of November and we went over all her "systems" persei...and I knew it had been a while since we had a look at those kidneys...I didn't, however, know it'd been three years...eek.  Well, anyway, the kidney ultrasound and VCUG were scheduled  at the hospital thirty minutes away and after a series of phone calls, a cancellation due to inclimate weather, and the little voice telling me to get it done at a children's hospital...that's how it ended up.  We went down today for her tests.  She wept pitifully as the ultrasounded her kidneys...thank goodness Matt went down with me, I could not have done it alone along with baby brother.  So then we were sent to another waiting room to await the VCUG.  They finally came and got us and let me tell you, she was freaking out. Long story short...the procedure didn't happen and we had to leave and reschedule.  OF course, I was annoyed bc I thought there would be like protocol in place for kids needing sedation.  Course, I really wasn't sure she would need sedation.  It just turned out horribly.  So now, she will have to be sedated...again. I hate sedation.  It's never fun to have airway challenged kids go under sedation and I'm pretty sure versed will not do the trick this time.  I'm sure most mom's can agree it is exhausting to have to put your child through so much stuff and its hard.  Even though you know it must be done and you move right along through knowing it is a necessary evil....it just plain stinks.  It hurts. Plain and simple.

Now, perhaps I'm just tired....our basement filled with sewer water over the weekend due to a city sewer blockage.  Need I say more?

Last month we also had her pulmonologist visit.  I took the trip alone with Ezekiel and Lillian.  What an entertaining day that was.  That office has a strict ten minute late policy.  If you are late you are sent home or "worked in".  So, I get them loaded and get on the road only to drive right up the ramp into stopped interstate traffic.  For 30-45 minutes.  Standing still.  In which I had to pull off the road twice because the baby was screaming bloody murder.  I was frantic calling the office (which noone would answer) explaining the situation.  They finally call me back and telll me to keep coming.  In my haste to get into the office, I failed to notate what level I'm on in the garage.  (but I dont' realize that until I go to get back on the elevator to leave) I get into the office late, the waiting room is full and my son is screaming at the top of his lungs demanding to be fed.  I know more than start nursing him and they call her back.  We spent less than 15 minutes in a treatment room seeing the doctor.  I have to pit stop in the bathroom in which I almost trapped myself in because of the stroller.  Finally make it to the elevator to realize my mistake in parking.  I had to get off and on the elevator three times to find my level.  Had to pull of the interstate to hold my boy because he's majorly unhappy to have to have been sitting in his car seat all.day.long.  Are you laughing?  I am. It's comical now, I actually giggled about it as I replayed the days events in my head on the car ride home.  Never a dull moment. HA

Overall, her health has been much better this winter, but she is not in therapy or school and we have pulled out of church for the flu season.   On the other hand, she has some strange behaviors that have been kicking up.  She all of a sudden hates certain types of music.  We rented Monsters U and she hated it because of all the band type music.  She wanted it turned off. She's been freaking out at loud noises of any kind.    She has also been making this strange sound with her mouth and she will do it over and over and over again.  Sounds like she's swallowing a burp, but she's not  and I can't get her to stop doing it. :/ I notice she tends to want to scratch at herself, legs, arms, head, even in her sleep.  It doesn't appear that she has dry skin or anything like that.

I don't know why all of a sudden I feel like I'm saying something wrong if I mention something that makes me sad in regards to her, but some things just make me sad.  I recently ordered my oldest child's cap and gown for high school graduation and I teared up bc I wondered if I would get that opportunity for Lillian.  So many tragic events happening around us lately and it reminds me of her fragility.  Life is short and we are not guaranteed a tomorrow.

IF you hung in there for this whole post...thanks!  I know it was a doozy.

Life is good for my family.  Keep us in prayers as we continue on this journey!

Did I mention she adores her brother?

Seven

Seven amazing years this sweet angel has been gifted to us.  It is hard to wrap my brain around, at times.  When I think back on this time seven years ago, I can basically recall pain.  Pain of seeing my baby suffer through such difficulties.  As she suffered, I grew.  I stretched.  I learned to lean on my Lord. For many of her years, there was suffering.  NOTICE, though, I can say MANY??  She is here despite the terrible odds we were given.  PRAISE GOD!  What a true blessing in every way she has been to us.

Here's what God has given us through  Lillian's seven years:

A closer, more intimate relationship with God

A sweeter love between my and my husband. We have learned what we really mean to each other and how important our marriage is.

Deeper compassion for others.

The ability to understand that no one is perfect and people will fail us, but He never will and it's ok that others fail, because we fail too.

We so clearly see what we've taken for granted in having good health and healthy children.  So..we try not to take things for granted anymore.

I've learned that we have had really hard times.  We still do.  I'm sure we still will...but we are so grateful and know we could have it much worse.

I could go on and on.

A friend of mine recently told me she was looking forward to the day that her daughter was out of the "give a mouse a cookie" phase.  For so long it seemed like that is where we lived too and it's good to be able to look back and see how far this girl has come...and I think she has closed the chapter on that book.  Praise the Lord.

In this last year, Lillian has increased her vocabulary to saying more words such as straw, shoe, talk, and some others.  She will eat a small container of chocolate pudding in fifteen minutes when I'm prodding her along.  She has learned to use the potty and is completely potty trained. She trick or treated in our neighborhood for the first time ever and loved every minute of it.  She has become a big sister..and a good one to boot.  This little girl is all love and she knows how to dish it out.  Not a jealous bone in her body.

Yesterday we spent the day at Grandma's house celebrating everything in "ORANGE".  Her favorite color.  We all wore orange, cake was orange, party supplies all in orange...sunkist to drink, cheddar popcorn, chex mix, and puff corn in cheese and carrots.  She got kitchen toys, roller skates, and karaoke microphone, and new clothes.  Tonight we celebrated with dinner at Mcdonalds, her favorite restaurant where big sister gave her orange play dough, orange bubbles and a giant hershey bar in an orange bag with a balloon. As we ate, an elderly couple became captivated with her and the gentleman sketched her face on a pad of paper and then they presented it to her with a five dollar bill. That is Lillian.  Her joy is infectious and she is always happily spreading it to others.  I do believe she is the favorite to each of her sisters.  It is apparent they all have a special place in their hearts for her.  We are blessed.

 She loves hoops and loops cards.  Aunt Crystal always gets her one.

She's loving every minute

This little girl LOVES her brother.  He came into our family on 9/27/13 at 8:20 pm.  After a long, hard labor.  He is beautiful and loved by one and all.  He weighed in at a whopping 8lbs 13 oz.  20.5 inches long.  It's taken me this long to post because I was discharged from delivery and then had multiple complications which found me back in the hospital several days after his birth.  Preeclampsia.  Worst I've EVER felt in life..I think.  I've had tests run on me that I've never had before.  PS- MRI's are noisy.  An hours worth of totally mind numbing noisiness.   ICK.

Anyway, Lillian has adjusted just beautifully to having Ezekiel home and spends much of the day kissing him.  I only wish she had enough strength to hold him safely on his own, but helping her is just as sweet.
Can't honestly believe it's been seven weeks already.  Where does the time go?

Guilty

This may be my last post for a short while as baby boy will be soon joining us.  This is just something I've had on my heart in recent weeks and wanted to share it.  

I've known  three women who have given birth recently under emergency circumstances.  Two of them, I know personally, the other I know through someone else.  At any rate, each of these precious miracles is in their own battle.  Born severely prematurely or waiting for a diagnosis that these Mom's were not anticipating.  Oh how it takes me back.  Especially since I'll soon give birth again...anticipating a normal, healthy, uncomplicated delivery. As my heart aches for these mothers, I remember intently how much guilt I felt after coming home and coming to the full realization of the depth of my daughter's medical situation.  You may ask yourself, why?  why would you feel that way?  Well, plain and simple...I carried her.  Even though they said there is no medical reason why she was born with all these complications...right down to those chromosomal issues, I felt racked with guilt.  It took my several YEARS  to let go of that guilt. I had taken medications during my pregnancy to keep my BP in check, I struggled with blood sugar issues...how could they be sure it wasn't my fault?  After everything she was afflicted with, WHY had I let them do that external aversion which surely caused her brachial plexus palsy??  After everything else, why should she have to deal with a lame arm as well?  I experienced the harshest self loathing when she was in therapies that I knew were hard and painful for her or when she was suffering in the hospital and the ONLY thing I could do was pray for healing.  

In those NICU days, I was in survival mode.  I was grieving and just praying for survival..trying to wrap my head around all the harsh reality that was setting in.

My message here...I'm not sure.  Maybe it's normal to have that guilt.  I don't know.  All I know is that all that pain I was inflicting on myself did not change a thing.  Why it took me so long to be healed of it, I'm not sure.  I don't think it's ever something I've written of before..or really even shared with more than one person.  Just know, if you're reading and you are in beating yourself up similarly, maybe it's helpful to know someone else did the same thing and in the end, it won't profit a thing.  It will perhaps add gray to your hair and it will definitely steal the joy you could be experiencing in the moment.  

I've said it before, I'll say it again...

Homeschooling is not for the faint hearted.  The first week went great.  She liked it, she participated...the second week, we were working hard to just get engaged.  This week...she sees it's not a game.  This is hard work folks.  Not only are we trying to school, we are trying incorporate therapy as well.  ERMAGERSH.   OT is not to difficult to work in, but I can't physically make her produce a sound.  I can ask her to repeat it a million times, but I can't force it out of her.  I'm sure we will find our routine and we WILL have our ups and downs.  Mostly, for me it's a minds game.  I've already told myself a thousand times I'm incapable of this task...which is hog wash.  I'm capable.  I can do this.  This is not all for not.  I WILL see improvements.  Between school and potty time...I'm just about done in.  This child pees A LOT.  And now, I'm thinking it's her new diversion to get out of work.  Yeah.

As far as potty training...it is still going fantastically, however we are running into poop problems.  I'm not sure I'll ever find the right formula of miralax to give her.

It's time to do some brushing and do our written work.  Then we will be done for the day....i think.

Wow is all I can say

I recently spoke the words, "I cannot in my brain conceive that Lillian will be able to use the bathroom on her own".  Starting Monday, I took off her nighttime diaper and purposed to take her the the bathroom every 20 minutes.  I did.  She did fairly well, until evening and our friend miralax hit her.  She tried really hard, but for most of the evening she struggled.  I did not give her miralax yesterday and we only had two accidents.  Today...she is doing phenomenal.  She just now went and had a bowel movement on her potty seat.  I'm telling you I'm sitting her in stunned amazement.  It almost brings me to tears.  The only real problem we have??  She's so tiny, even the smallest underwear I can find are huge on her and are bugging her to death.  I'm totally amazed and feeling extremely blessed.  It's still hard for me to fathom that I will likely not need to buy diapers for her anymore.

Homeschooling is going pretty good.  She is interested and engaged once I get her settled down enough to focus.  Much to my surprise, I'm able to incorporate speech and OT activities into most of our day.  The bigger girls are helping with PT activities and I'm very pleased with how that worked out.  I was so worried I'd be a miserable failure at trying all of this, but by the grace of God...it seems we are thriving.  The only real problem, our cable has been acting up which is knocking out my internet which is a huge obstacle.  Hopefully that will be resolved today.  I do find that I need to really set aside time for planning out the whole week and get things printed, just so I feel more prepared.

Getting in the feeding stuff is a little more difficult...but I'm working on it.

Health wise, she is still struggling with this ear infection that threw her into a two week respiratory issue.  She is better, but still lots of gunk coming out of the ear.

She continues to show love and excitement about her baby brother who will soon join our family.  It seems so many huge milestones are hitting our family all at once...big, huge significant ones...oldest child licensed and driving her own car, baby coming, potty training....feels like such a sweet spot in our life, even with all the negative things that have recently happened.  God is good.

These are the days I feel nervous...

Our girls started back to school this past Thursday.  All in all everyone is happy to be back.  I will be homeschooling  Lillian this year. I'm waiting to hear back from her teacher who will oversee what we are doing and also provide materials.  Ironically, she fell sick the day before school started.  Waking up vomiting, coughing and running a fever.  Her cough sounds like croup.  A first for her.  She had to go off formula feeds for a day, but her night drips are not going well, as every time she sneezes or coughs, she gags/pukes.  Our good friend albuterol has rejoined our med regime and today we have notated a foul odor coming from her ears.  She IS and HAS been on antibiotics virtually non stop since January, and her illnesses have seemed fewer and perhaps less severe.  Hopefully, she will soon get back to baseline and we can start a routine here before baby boy makes his entrance. Seems like most of the time her junk lasts about a week.

These are the moments when I feel fear creep in.  Taking care a her being sick and also having a newborn to care for.  Lord give me strength for the journey ahead.

Feels like smacking into a wall over and over and over...

I'm sorry everyone, I try...I mean I desperately try and do for the most part stay positive about most everything.  Relatively speaking.  But here I am awake way before necessary because I'm plagued by irritation.  Once again, I'm left grasping at straws as I seek medical advice from those "guiding" Lillian's care.  I have been waiting since Thursday to hear back from her pediatrician in regards to this whole therapy situation. Well.....yesterday I get a phone call from one of the nursing staff letting me know that "speech therapy has sent them a recert to continue therapy...so everything is set for her to continue with therapy"

HELLO???  Do these people even LISTEN?  Do they HEAR me?  I told her that I was aware they were getting her recert because I've already told them I won't take a break at this point in time.  I REexplain to her the situation and she goes on to tell me it's my choice.  ARE YOU KIDDING ME???  I go on to let her know that I"m aware that it's OUR choice whether or not to take a break, and that I'm NOT asking the DR to "gang" up on the therapists with me.  What I'm seeking is medical guidance from the professionals in charge of her care.  Is this a difficult concept?  Am I the one missing something here?  Once again....it's fully laid on MY shoulders....there is NO medical advice given except.."oh he signed the papers, you're good to go".

Hear that pounding sound?  That's my head against the wall.

Seriously, waving the white flag...throwing in the towel....I'm so frustrated.  I think I told her that her phone call was no help at all.  I was totally exasperated by the end of the conversation.

Sometimes...it seems to me that THEY see a child with a very limited potential... that she is so delayed that it doesn't matter if she regresses.  It feels like they are saying it just doesn't matter.  Perhaps my expectations are just unrealistic?

There are so many type-o's in this post, I gave up trying to correct them as I went.....

Just another day in the life....

So...you think I have it all together...

Pardon me, but step aside whilst I vent...Since my darling daughter has been born, I had to step in a be a full time nurse.  (no offense to you "schooled" nurses) but yes, I was and still function in that role. The ONLY difference is my shift didn't ever end after 8-12 hours.  I remember crying because I thought she would never know I was her mom because I was pushing meds, giving breathing treatments, changing trachs and gtubes, dumping feeds, cleaning vomit, changing linens...forget being able to cuddle or love on her...there were too many machines and tubes in the way for that...oh and let's not forget machine maintenance and upkeep. Waiting for hours in waiting rooms for countless appointments only to be let know up front if you were ever 10 minutes late you would be rescheduled.  Countless hours in surgery waiting rooms.
 Oh yes,  and an administrator/insurance person.  Can't even count the number of phone calls and appointments just to get insurance needs met.  Then we had therapy coming in...so add to that all the fun exercises, stretches, and "tortures" I'm needed to add into our already unending day of demands...but hey, I don't work outside the home so what else could I possibly have to do?  Oh wait...endure the endless crying of your tiny baby ON therapy days because even though it's painful and hard work you know it's for the best.  *insert hooking myself to a milking machine every three hours of the day because it's the only way I feel like I'm being a good mother*

How about depending on "professionals" to be guiding you in the right direction...no matter what you think maybe right and getting years down the road to find you really were and you feel like you just didn't fight hard enough.

I still do most of these tasks, minus several machines.  As of this fall, I will undertake her education needs as well because it's best for her health.  As of today, I will be her nurse, teacher, advocater, insurance person, PT, OT, ST, and feeding specialist because her therapists think she needs a break...bc they feel she's in too much of a comfort zone AND due to my pregnancy and the new baby soon to come, "I won't/don't have time to do what needs to be done for her"

There are days that I feel like a complete failure. It's never ending...and days like today come and go routinely.  Someday, maybe, I can separate my emotions for all the "jobs" I'm carrying, but today is just not one of them.
 Thank goodness for my friend in GA who let me call and we talked, laughed, cried and shared our still very similar journeys.  She's the lifesaver God threw in the ocean to me several years ago.  Talking to her made me feel "normal".
In the end, I'm just an ordinary person living in extraordinary circumstances feeling the weight of the life of my precious child's life in my hands.

*exhale

Looking back AND ahead

This past weekend we spent packing up the craft/storage room to make room for baby.  There is still much to be done, but there is progress.  As Matt brought in the gently used crib that had been given to us, my heart did a little flip flop.  I didn't think he was going to put it together, but he did and now I look at it in amazement.  It just doesn't seem real.  Of course, it sets my mind to thinking about the last few weeks of pregnancy with Lillian.  Maybe some know, maybe some don't...I was on bed rest due to blood pressure complications and we HAD to move from our home.  We were losing the home we had bought and lived in the last couple years.  We moved in the first week of November, and because of my bed rest, most things still sat in boxes piled up everywhere.  Three weeks after moving, she was born.  My sister and girls had been busily preparing the room for Lillian fully anticipating our arrival home shortly after delivery.  Diapers opened and waiting, dresser drawers filled with all her little clothing.  Everything in  it's place.  Waiting.

It is almost bittersweet to be preparing this room for our little baby boy.  Sounds strange doesn't it? While I don't sit around lingering on what if's, I would be lying if I didn't say that fear creeps into my brain at times.  Even through my whole pregnancy with Lillian there were never any signs that she would be so critically ill when she was born.  So as closely as I'm being monitored and ultrasounded, that thought will pass through my mind.  I think breathing will come much easier when I hear his first cry and see him breathing effortlessly.  For me, it is a strange mingling of grieving and joy.  Back and ahead.

What I do know?  God is sovereign.  He is already there, preparing our future, whatever it holds.  My faith is strong.  

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."

PS- Lillian loved having the bed put together and she insisted he needed a pillow in there too, so she went to the couch and placed one in the crib...AFTER she got her step stool so she could reach.  

Dr Lungs update and other good stuff

Lillian spent her very first over night away from Mommy at Grandma's this past weekend.  Course, two big sisters were along too, and she only really cried for me at bedtime.  It was entirely her idea and she basically ushered me out the door and slammed it behind me.  When I had to come back and drop off her car seat, she was none too happy to see me again already. lol.  Growing up.  It just so happened that the other two girls were off at camp.  It was the first time in seven years we have had a night alone with NO children.  So peculiar.

Today, Lillian has her quarterly appointment with Dr Lungs.  She will remain on her rotating antibiotic course.  Inhaled meds one month and a change to a different oral/gtube med on the off month.  It did bug me that her sats were just 94/95.  She used to always sat at 99/100 when she's healthy.  It made me wonder if it is a sign she is having diminished lung capacity.  94 is still a good number...I just rather it had been higher.  She will likely remain out of the classroom this fall due to her puny factor.  The one time this year I've exposed her to a small group of children, she got really sick.  ICK,

She is super excited about the baby on the way and loves kissing my baby bump.  She loves sorting through all his baby things and oohing and ahhing over everything.

It's been a long day, as always when we make a trip down south, I'm whooped.  Not really too much more to report, thank goodness.

Summer time

Lillian has been brewing something for about a week and about three days ago came to bed with a bloody ear.  It concerns me how much she has bloody ears, but what's a mother to do.  She has tubes, in tact.  Dang sinus issues.  I know that's how it always starts.  EVEN though she is on and has been on antibiotics constantly since January I think.  Anyway....she is very excited about the baby and no longer makes the gagging face when we talk about him.  Him, did you notice?  In case you are new here, after five little ladies, we are adding a baby boy.  Everyone is thrilled and Lillian is getting a huge kick out of the baby clothes that are coming in here and there.  Today, my mom dropped off a few things including a teeny tiny pair of shoes.  Lillian keeps picking them up and saying "aw" (she has the cutest way of saying it) and she kissed every side of the shoes. Too cute.  She loves kissing my belly and telling the belly that she is the best not Dad.  LOL.  In her way of course.  I've come to realize that most of her conversation comes out in frustrated sounding noises, but she's not really frustrated, it's just how she's communicating, even if she is just "saying" see you later.  It sounds very harsh.

One of my daughter's friend came by today and brought Lillian a tank dress from her vacation trip...she just adored it.  That girl loves her some dresses.

Lillian also got an invitation to her first little person birthday party.  I think it's the first time she's gotten an invite to a kid birthday party, but I'm not 100% sure. I sat here the other night contemplating the party..wishing Lillian could go...but it's a bouncy house party and with lots of other 3-4 year olds running around and older children  potentially...it's probably not the safest thing.  It made me sad.  The flip side, the Mom invited us to come the next day after the party bc they would still have the bouncy house the next day.  Warms my heart that she would extend the invitation bc she knows Lillian is fragile.

I'm a little disheartened that she isn't taking to eating like I hoped she would.  If you'd asked me three years ago if I thought she'd still be using a feeding tube for her source of nutrition, I would have thought no.  Now, at this point, I'm wondering if she'll ever be without it.  Only time will tell.  I've learned or am still learning on this journey that I can't take anything for granted or make assumptions.  Three years ago, I never thought she'd still be wearing diapers.  But, here we are.  She seems to have NO concept of when she pees and #2, well she can't even do that on her own with out medication.

Overall, we are kicking back and taking it easy for the summer, late nights right along with late mornings.  Course, we still have therapy to attend twice a week and the occasional dr appointment thrown in.  She is just a few months away from turning seven....wow, I can't even believe it.   By that time, she'll be a big sister. Even harder to comprehend.

Crushed by words

You know, I try not to be too sensitive about the things people say.  Usually when a stranger says something rude or inappropriate, I may get irritated, but it's easy to let it go.  It's harder when a loved one does it.  Recently I was in a gathering and one person said to another, "close your mouth you look like someone missing a chromosome" I was utterly shocked and felt like someone stabbed me in the chest.  Anger was not even a response.  I was crushed, the pain that struck me was close to unbearable. I had a little cry and pulled myself together.  I tear up now as I think of it again.  On my drive home, the words just kept bombarding me over and over in my head...I felt so totally crushed. That's the only way I can think of to describe it.  I'm not angry....just crushed.  I cried for more than half the drive home, holding back that sobbing cry...bc well, I was driving.  The sting of it is less, and I've spoken of it without tears, time to pray away the pain and be washed with the healing salve of Jesus.  And maybe cry about it for the last time.

Dancing Queen

This little girl had a ball last night.  We attended a lovely wedding and after the nuptials was some dinner and dancing.  She started out with a slow dance with daddy and mommy and then the party got started.  Not only did she boogie her little heart out, but oh did she enjoy dancing.  While this momma sat watching and sometimes hovering nearby holding my breath that she would not be knocked down or throttled across the floor.  I did do the chicken dance with her and all the video I took was very brief.  My pictures didn't turn out at all. On a side note, Isabelle was particularly happy that I am pregnant so I would not get on the dance floor and break out my moves...course, not one to miss a moment to embarrass a teenager, I broke out a few "signature" moves from my chair.  That was sufficient to put her in a tizzy.  It's good to be a Mom. ( Insert thriller laughter.  )

Anyway, here is a brief look at her partying down!

What I want vs what I have

Let me first say that every person who has a special needs child has a different walk.  So what may be an issue/concern/wish in our walk can be very different from someone else's.  I realize all of the things I have to be grateful for.  My daughter walks unassisted, yes clumsily at times, but walks.  I know this is a blessing.  It is however, sometimes frightening, at how easily her balance fails...how many times she falls and the injuries she sustains.  When you have a tiny, unpadded body, that's rough on a girl. I also HATE when she takes a blow to the head in a fall.  It is always very nasty and when you know your child is seizure prone and has some things in her brain that aren't normal anyway, you just don't want to see that happen.

I often wonder if there will come a day when we can go to a playground and I don't have to stand guard over the equipment bc of the drops or the other kids that just brush by her can cause her to go down one of those drops.

I want there to be a day when I don't have to explain to a restaurant cashier why my child doesn't/can't eat and that look of pity they give me when they feel so awkward after hearing why.

I want there to be a day when I'm not consumed by sanitizing carts and highchairs...and wondering if it's safe to put her in the midst of other children who may be sick.  Because you all know sick is not good for this girl.

I so clearly remember sitting in a a developmental pediatric doctor's office and her telling me that our world should not revolve around Lillian.  I have to just laugh out loud at such a ridiculous statement.  So much of my life has to be governed by what is best for her health. (especially when the pulmonary doctors are telling you to go into hiding OCT thru May bc of flu season)

You know she's never been to the zoo or the Children's museum?  You know why?  She's terrified of animals and the Children's museum, hello, talk about  kid germs.  I mean seriously these are things I have to consider. Even family functions cause me some level of stress just due to the possibility of sickness.

I'm ok with all of these things....she won't suffer from not spending time on a playground, she is able to be sat in a highchair and a cart...she enjoys food in her mouth even if she can't swallow it.  She's never been to a zoo or museum, and her life is not going to be altered bc of it.   This I know.

There are just times when the walk is hard.  I'm glad I don't carry the burdens alone.  Even though at times it seems lonely.
Today's thoughts from a crazy Mom, walking through life with my special girl.

What a week

Good grief, poor Lillian has had such a rough week going on a week and half.  A week ago friday, I spent the weekend doing round the clock treatments and she battled a stomach bug on top of that.  It seemed by Wednesday she was over the hump and I took her to therapy.  By that evening she seemed to decline, laying around...very whiney, SO not her norm.  I kept her home from school and therapy the next day hoping some extra sleep would do her good.  By Thursday night, she'd been asleep about an hour and projectile vomiting ensued along with a raging fever that nothing I gave her would break.  She spent the entire night vomiting roughly every 20-25 minutes and I had her on ice and was doing anything I could think of to keep her fever down.  I took her in to the pediatrician Friday and he thought it was likely viral.  She continued to run a fever and vomit most of the day Friday and on into Saturday. She had a small window Saturday of looking/acting better, but it quickly closed and she began to puke and be puny again.  Today, she seems much better.  I'm hoping she is over it.  I'm praying I don't get whatever it was...as I did get what she had earlier that week.  I have felt pretty well exhausted and generally bleck....but it has been a rough week.

Joyful Noises

Lillian is battling her "normal" sick issues.  I spent the weekend doing treatments around the clock. She is super duper winey today which is not at all in her character.  Antibiotics on board, so I hope she soon gets relief.

It was so fun to have her in the room as we had our last ultrasound.  She thoroughly enjoyed watching.    

So, why do I find myself here at this late hour typing away?  My mind refuses to rest as I linger on my thoughts earlier this evening.  We have had two choir concerts for the bigger girls this past week and they were quite enjoyable.  As I sat there, though, tonight in the audience.  I began to get very sobered as I thought of my youngest child...I wondered if I would someday enjoy the privelege of seeing her perform and sing her little heart out on the stage. I then fight the tears back and try to remember to be grateful for the sounds she IS making.  She does do some type of "singing".  Just not something I can understand because there aren't really any words.  But she is using a singing voice.  The tune is non recognizable, to me anyway.  It's strange the emotions I continue to experience as I walk through this life with my angel.


Maybe now, that I've shared my heart, my mind can find rest.  Good night.

Playing in the tub

I'm sitting here, feet propped on the tub, while Lillian "plays" with her big sister's mermaid in the bathtub.  Looks more like she's trying to drown the poor doll, but playing nevertheless.  LOL.  I'm reflecting on the simple pleasure of "playing" in the tub.  This is something that you start early with your children...but that has not been Lillian's experience.  Baths were nightmarish having a trach and open stoma for a total of 4 years.  It took her forever to not be scared of water because we had to be so careful while bathing.  It's so funny what you take for granted.  She is sitting there "talking" and singing and thoroughly enjoying herself.  Makes me not want to get her out, but alas, she does get pruny very fast and that water just doesn't stay warm for long.

She is battling some something that is making her very whiney and making her eyes look very dark.  This weather is so crazy and she wants to play outside so desperately...which brings on the whiney.  She has 6 days of school left and the other girls will be out by the 23rd.  Yay for summertime.  Time to relish our time together as baby time gets closer.  Lillian has taken to talking or better yet, shouting at my tummy and then giving a kiss.  If you ask her about the baby, though, she makes a gagging noise/face.  Well, she has opened the drain and wanting out so I'm out for now.

How to truly melt a Mom's heart

It has been a habit of mine to pray with Lillian at night.  I start and pray for each member of the family..health, good day at school..safety.  I say amen and then Lillian tries to close her eyes and mumbles...not ever saying words, just grunting essentially. ( I have I ever mentioned that she isn't able to voluntarily close her eyes?)  I have to admit, I fell out of the habit and this week she reached for my hand and kept squenching her eyes shut and it finally dawned on me that she wanted to pray.  I started saying my prayer and finished.  ( I never mention myself in prayer).  She began mumbling as she always does...and then she said "mom" in the midst of her "words".  She knew and recognized that I did not pray for myself and there she was, in her way whispering a prayer for "mom".  I was on a cloud.  It has always been sweet to listen to her offer her prayers even though I do not understand it.  But to actually hear her insert my name hit me on so many levels I cannot even describe it.  Blessed.  Nothing but blessed.

The news

Lillian had a routine visit with Dr Lungs on Thursday and it went very well.  He said it was the most clear he'd ever seen her.  I bragged about how healthy she had been.  Bring on Friday.  All day friday she was abnormally whining.  I mean crying off and on all day.  I don't think she even knew what was wrong, but it was clear by 7 last night that all was not well.  She had started the day with a little bit of gagging, but that it not totally unusual for her, so we didn't pay much attention.  Lillian can see a doctor in the morning and by the afternoon be sick with something they said looked great.  That's how she rolls.  So, 7pm,  vomiting ensued and did not and has not ceased.  I spent the nighttime hours giving slow pushes of ibuprofen, tylenol suppositories and zofran.  She was wretching and gagging with nothing even going in.  As soon as I attempted to start pedialyte, I pushed the button, she started wretching.  She begged me all through the night for drinks, which further made her wretch.  She ran a fever all night long which keeps me on a vigil because she spikes so quickly it causes her to seize.  I sat beside her mopping her with a cold wash cloth, catching her puke with towel after towel, wiping the tears being forced from her eyes.  At some point, I had that overwhelming blessed feeling that I had the privelege of wiping those tiny tears away.  It was an oddly precious moment.
At 3 pm today,  I started a 15cc/hr drip of pediatlyte which we let run for a few hours.  and she slept much of the latter hours, still wretching all the day long.  She spiked a temp again while sleeping.  I have brought her to bed and medicated her hoping she may get some rest tonight.

I have to share,late this afternoon I found myself in one pathetic pity party.  The family had been gone all day participating in activities at our church and all I could think of is that Lillian could not be a part of that...how drastically our life has changed.  How life just seemed to stop.  It brings me to tears as I remember.  Sleep deprivation and early pregnancy probably not the best combination.

So, I'll pray for healing, respite and good rest tonight.  We will spend resurrection Sunday, me and my girl, being thankful for Jesus and tears.  Happy Easter.

A Big sister

If you haven't seen it on facebook, or perhaps you don't know us personally, you may not know that Little Miss Lillian is going to be charting some new waters as a big sister.  I'm due around October 10th.  If you don't know...this will be our sixth child.  We are thrilled and Lillian is basically not real clear on what is going on.  I had an ultrasound today and she has giddily carried the pictures around showing them to Daddy.  We keep telling her the baby is in my belly, but she doesn't quite get it.  I'm hoping as my body changes she will have a better understanding.  She does LOVE babies, so I'm hopeful that the transition will be pretty good.  She flip flops back and forth about whether she'd like a boy or girl.  Today happens to be boy.  LOL.  So that is the news here.  She is doing very well, sickness is being held back by meds though she routinely has green drainage.  I have been able to pull her off her albuterol which thrills me.  She has missed school this week due to bad weather here.  School was actually cancelled for all students here today.  The kids were thrilled, but it cuts into our slightly extended spring break.  I am so looking forward to nicer weather.  I'm ready to get us back to church and large functions that we have avoided with Miss Lillian, you know though, the sacrifice is nothing in comparison to having her health be so much better.  PRaise the Lord. 

Changes

Lillian is doing pretty well.  Still trying to keep her out of large crowds.  Her school PT visited her last week in the classroom and was so pleased with how well she is doing.  It tickles me to death to hear such positive feedback. 

Her ST has been cut to once a week due to insurance issues.  This is something I will be appealing. 

She is doing multiple breathing treatments a day plus her vest treatment.  I am so looking forward to warmer weather so we can get back to a little more normal life.  I heard the weather is supposed to turn ick again this week. 

Bring on spring!

Tonight's events got me to thinking

We were honored to attend the Pregnancy Care Center's yearly banquet/fundraiser.  What an amazing organization.  It made me think about life.  LIFE.  It made me remember each of my precious blessings.  It especially made me consider that day...it was the day after we'd been given all the information about our precious Lillian.  All of the doomsday reports of her poor health and unlikely survival. Hearing all that distressing prognosis left us spinning.  When the doctor said she would be categorized as moderately to severely mentally retarded, I don't think it hit me quite like when he said she would likely not survive and we should tell our other children immediately.  It was so much more than I could comprehend.  The next day as he came by her bedside and asked me if we were still all set with the "plan" to move ahead with a trach, I remember saying, yes of course...IF they were sure that what we really needed for her.  He stopped and said, well....there is one option we didn't discuss.  I remember looking at him quizzically, wondering what other option there might be. His next response , well, we could do nothing at all.  That would have been a death sentence for our angel.  I immediately shook my head.  No way. Our daughter was not hopeless, she had a chance at living and we would choose that for her.  It is a strange thing to think I could have made the choice to turn off my daughter's life support and let her go. 

So thankful God continues to sustain her life and bring us joy and love each and every day. 

Remember that hat?

The one the lady in the pulmo office said she would make Lillian?  It came today...Isn't it just adorable?? Such a sweet thing for that woman to do. 

Lillian has been doing pretty well over all.  I believe the key was the antibiotics.  I gave it all month last month as regular dosing because she was getting sick.  Her PT and teacher both were sick this week so she missed those things, but we are making up PT tomorrow.  Our initial appeal for her ST was denied, so now I will appeal and have to go to court and plead my case for a judge. 

Charlotte's Web and a Crazy Mom

Lillian is recently loving Charlotte's Web.  We are watching it every night before bed.  It cracks me up when she giggles in the same places every time.  Like when Charlotte is telling Wilbur she doesn't eat the bugs she sucks their blood and Wilbur says yuck.  She cackles every time.  I was thinking two nights ago that I may have seen it a few too many times as I was starting to think things like, gee, Wilbur's kind of a whiner....and how did he learn the word objectionable just after he learned to speak.  (maybe a few too many viewings you think?)  She always has me fast forward through the slow song when he's sad about being killed.  Then, I got to thinking what a positive message there is in it for her in particular.  You know the part when the runt gosling is born and Wilbur breaks into the song, "we've got lots in common where it really counts" the song talks about the unimportant ways they are different, like the runt gosling as webbed feet and wilbur has hooves, but they both use them to move about.  I kept thinking what a positive message this is to my sweet little angel.  So, even though I can now almost recite the entire movie by heart, lol...I will watch it with her as long as she likes.

She is struggling  with her ears oozing which is causing her to cough.  I've also found that if she is off her pulmicort more than one day she is coughing badly with activity and just in general.  Dang asthma. We are scheduled for follow up with ENT in Feb.
 Did I report that I got  the IV gentamycin approved to get from our regular pharmacy? Of course, I had to make several phone calls and even after the PA letter came I had to call them and get it set straight. Woo hoo.  Course, I get one thing settled and another issue takes it's place.  Insurance has basically denied her speech therapy.  They will only approve 7 visits.  Time for appeals.  If I have to appeal it, it actually goes before a judge.  Kind of crazy, the letter even says I can get legal aid if need be.  Good grief.  I'm just praying for favor and that our therapist who has already asked for an administrative review will get what we are asking for.  Stressful.  We should have an answer in 7 days on the adm.  review if I understand the paperwork correctly. 

School is going well for her.  She has a lot of trouble with attention span and her OT at rehab is starting to make reference that we may need to dig into that deeper.  Not sure what that means, but it makes me feel edgy.

My darling girl has dozed off and it's time for me to head to bed.  Good timing as I will not have to hold back my tears as Wilbur is at the fair now and.. well... if you've seen the movie you know that Charlotte is saying goodbye soon.  *sniffles*

Tense day

Today we met with a CVS to resolve our "dispute".  I guess I'm no longer at liberty to discuss details, but if you read on back you can find out what I'm talking about.  I had so much trouble falling asleep last night as I considered the choices I've made in regards to the situation. 

First of all, I'm angry with myself.  I know it's not my fault. BUT, I work really hard to manage her illnesses at home.  As a parent of a medically fragile, special needs child, I weigh all the pros and cons of taking her to a doctor or a hospital. In hindsight, I think I'm not always picking the lesser of two evils. 

Secondly, I'm glad it's resolved, but it doesn't stop my heart from feeling the pain of the difficulties she faces because of the negligence of the very institutions we depend on to help care for her.  It is so unfair to her.  It breaks my heart to be helpless. 

Tonight, I brought her back to her own bed to get her back to sleeping here.  I look for it to be a long sleepless night as she will likely wake up in a few hours and want me.  Oddly, in my bed she sleeps all night, so I'm not sure what wakes her in the room she slept in for a year and a half with no problems. 
She is battling snot in a major way and she even started wheezing tonight...which you KNOW it not a good thing.  I hate wheezing, have I ever said that before?

Yesterday

I felt so positive.  Yesterday.  Until about 2pm, while washing dishes I managed to slice my thumb to what felt like the bone.  (see, no good comes from housework...lol) Got it under control, but seriously felt like I need stitches.  Problem, I'm not showered...not even dressed.  How am I even going to dress without using my right thumb???  Anyway, I bandaged myself up finally and got ready for the day.  Lillian has school on Tuesday and Wednesdays out of town.  We swung by the pharmacy on the way home only to find the script I dropped off the day before had not been ordered or filled.  They have me sitting there waiting for half an hour before they let me in on it then proceed to tell me its going to cost around 100.00. And they borrowed this amount from the hospital and I'll have to come back for the rest.   Hello?  What about our insurance??  Well, today I've spent the day making phone calls getting letters written and calling the pharmacy and oh.my.word.  Why is it always always ALWAYS a battle?  We pay and pay for insurance then we have  to jump through one million hooops to get it to pay.  Did you know I have to give a count of how many bags, tubes, formula cans I have before insurance will allow a feeding order to be sent???  NUTS.  I mean do they really think we are out on the street selling these things that our children need to survive?  And since I'm on the topic of pharmacy here...you know I've not heard a word from CVS since they offered us their apology settlement?  It feels like salt in my wound.  Just another indication that they DO NOT CARE.  I think I'm being totally reasonable.  COME ON. insert very loud sigh. 
By the way, I fell down the steps today letting the dog out.  harhumph. 
Ok, maybe I feel better now that I've ranted. 

New Year

I cannot even believe Christmas and New Years have passed and here we are moving right along through January.  Christmas was SOOO much fun for Lillian.  She LOVED opening her presents, we couldn't give them to her fast enough.  When we were at my Mom's and she'd finished opening hers, she moved right along to helping her daddy with his...tee hee.  We got her an Innotab 2.  She seems to be doing pretty good with it, much better than I thought when I was messing with it myself.  I definitely have to stick with the 3-6 year old age range for her.  She has to really work on matching things up so it's great for her fine motor skills. 


Today she had a visit with Dr Lungs.  He now wants us to try inhaled gent 2/day for a month and then on zithromax for a month dosing on M/W/F then back to the gent.  back and forth for the next few months to see if we can keep infection down.  He noted fluid behind on of her ear drums which didn't surprise me due to the fact that she is hoarse and drippy.  Fairly quick appointment other than having to "play" doctor with a resident who was practicing his H/P routine on Lillian. It is exhausting to go through her entire medical history almost every time...especially since he told me he had it all there in front of him, he just wanted to go through it with me...I guess to see if I remember??  *shakes head* ....just another dollar in the parking garage I reckon....(eeek, there's my grumpy 3am start to the day attitude creeping in...) Seriously, I know they have to learn...but mercy. Wears me out sometimes. 

In the waiting room, ( we were quite early) there was another woman with a little girl.  The little girl was practicing her abc's with flash cards and I could tell she was a little delayed in her speech.  I asked Lillian not to play with the huge toy in the room bc of germs and the other mom says, "i know, it's been a bad month for her" and I agreed and told her Lillian has had a rough time too.  We chatted a little and seemed to have some common ground with our kiddos.  Her daughter was wearing a crocheted owl hat, super cute and as I shared with her how cute it was, she told me she made it.  This prompted me to ask her if she sold them, to which she took out a piece of paper and told me she was just going to make one for Lillian and send it to us.  She took down my address and after I told her we were the Seymour Owls, she asked for our school colors and said she'd get it to me in a couple weeks.  Wouldn't even hear of letting me pay her.  Can you believe that?  I'm not totally surprised because God just works that way.  You know how you meet some people and there is an instant connection?  That's how it was with this woman.  Someone who could sit beside you shake her head in agreement and you knew she knew, you know?

Recently, I wrote a post about my pharmacy.  You must read it to understand this next little bit...I was in there again prior to Christmas and purchased a couple more scarves, one as a gift and one I decided to keep.  I told her I thought I would have to keep the red and white one because I love red.  She came out to me as I was held up there a few minutes and shared how much it blessed her to see Lillian when I brought her in.  I took that moment to share with her I'd been praying for her for some time.  She started to weep and threw her arms around me...I was stunned.  She called me the next day and told me Lillian's meds were ready (which was weird because they never call) and then told me she made Lillian a scarf to match the one I said I was keeping for myself.  

As my friend MBS ( or was it SSM?) would say, God smiles.  :) There are days when I'm amazed by the extreme lack of care that seems to flow into our journey and then there are instances like these that I'm amazed by the extreme love and generosity we experience.  I need to remember to keep my focus on the latter.