Hmmmm

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

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

James 1

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

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

Build-A-Bear...err, a dog...

 Saturday was a busy day for us.  We (myself and the big girls, my sister and her daughter, and our mother) were guest singers at my sister's church up north.  After the church event, which was lovely, we decided to go the the mall and I would use my gift certificate for a massage since we were up there.  After that, we took little miss Lilli-bill to build a bear.  In the top picture, she is clinging onto my sister for dear life.  She wanted no part in filling the bear up because it was just too loud a machine.  I thought we were going to be outta there fast at this point.  BUT, once that part was over, we walked through the store a little and she found an outfit for "Ruff", we printed a birth certificate and headed out.  She was tickled to death.

 Shortly thereafter, we had to hightailit back to the van because she broke into another asthma type attack.  I have to tell you, I'm not liking those things AT ALL.  So- this is how we ended the quickest trip I've ever made to a mall.  :/ 

Notate, Ruff also wears glasses.  :)

Stages

I think, or I should say, I know tht I go through stages of "dealing".  Just dealing with emotions I've never had regarding my four older girls that seem to bombard me with my youngest one.  While the joys she has brought to our life are enormous, growing, and life altering...there are days or periods of time when I  regret things for her.  It makes me sad that she isn't able to attend youth group with her peers at church.  I have let her go to Sunday School, but youth group is another story.  The little episode Monday only reinforces my fears of letting her go.  I'm never that far away, but having a child that is fragile AND nonverbal along with caregivers that would likely have NO clue what was happening or needed to happen, would just be too much.  I'm ok with that, but it doesn't change the fact that it makes me sad.  Probably the same reason I struggle with all day Kindergarten.  There is not even a nurse present at the school at all times. 

I am ecstatic by the things she is able to do and the things she works at doing, but it doesn't always cover the pains in my heart when I see a two year old doing things Lillian cannot.  I periodically, not often, but occasionally grieve the things she can't participate in or just go so long when life seems so rocky and I think I hit the wall and it all comes down hard on me. 

I do believe God is using her to change me.  I hope some part of what I've gone through is speaking to someone else in whatever way is relevant.  That IS what covers the pain. 

 To quote a friend and fellow warrior mama, " It seems we are always in search of the new normal and by the time we realize what it is another change comes along"  so so true.  

So I will continue to come here and type and sometimes weep.  It's just hard today...period. 

Lillian seems improved today, her feedings are still going very poorly.  She is easily agitated and requiring treatments.  We will skip therapy tomorrow in order to let her sleep as long as she needs. 

This girl

 This girl, right here...she' s SICK.  Raging fever, vomiting, breathing troubles.

Yesterday  Mrs. Specch rushed into the waiting room with a very upset, coughing, vomiting Lillian.  We spent a good deal of time (probably not as long as it seemed, but in a waiting room wtih several people) letting her throw up into a trash can.  It was clear to me I needed to get her on a nebulizer ASAP.  Problem, travel neb not in car....(one of those kick yourself in the butt moments)  After some well meaning onlooker advice..ahem...(do you want a piece of ice from the cup I'm drinking out of...or someone just asking if she had asthma and then diagnosing RSV) we got her loaded in the van.  Mrs Speech drove us home as Mrs PT followed behind in her car.  God bless those girls for using half their lunch time to help me out.  I sat in back with Lillian catching vomit and snot in napkins.  Got her going on a treatment which helped immensely.  We then had to rush over and get Bethany to run her half hour away to get her allergy shots....only for Bethany to have a bad nosebleed all the way there.  Lillian fell asleep and I ran her feeding during the trip.  Upon reaching allergy office, they decide she can't get shots and needs to be seen by doctor, who can't see her til tomorrow in our own town.  Just as we leave allergy office, Lillian begins vomit volcano, to the point I'm pretty sure there was nothing left...all instigated by a hard cough.  What a day.  Lillian had a really rough night, requiring breathing treatments around the clock.  She is raging with a fever right now, but the tylenol must be kicked in because she finally crawled out of bed to play. 

Here I am....AGAIN, pouring out my fears...

First off, I did just find out full day kindergarten is a go.  I read the news and the heat flooded my head.  I think my "stress rash" is already started.  One thousand and one concerns.  What about her feedings?  It is going to be a challenge, to say the least, to have her on a feeding at school.  Oh yeah, and then how are we going to fit in therapy....and certainly not least, how am I going to drag that poor baby out of bed every day??? Think I just ought to get on my knees and not stop praying. Any other Mom's experiencing this, can you give a girl a holla?  Oh mercy...

Yesterday, my neighbors were so generous to loan me a push mower for the back yard, as I wasn't able to get mine started.  He mowed my front yard and she weed eated...(is that a word even?) the entire yard.  Why, you ask...well, they are just that awesome for one.  For two, Matt has been working crazy overtime.  For three, last week I stepped in some holes in the yard while mowing and hurt my back pretty good. *hello my old friend from the flood injury*.  Again, totally blessed by the gift and friendship of others.  As I mowed, (you can laugh here, bc it's kinda silly...buttttt....) I began to sadden as each of the fluffy dandelion seeds got chopped down.  You just can't imagine how much Lillian enjoyed picking those babies and blowing them.  Just to see her be ABLE to blow them is incredible.  No, she could not blow before this last surgery.  Only if we pinched her nose closed, which you could imagine she didn't enjoy too much.  It is so strange to experience such strong emotions over something so seemingly simple.  It reminds me to be grateful for those "weeds" that spring up all over the place. 

Today, her glasses have gone MIA, and I am not in any shape to be crawling and bending all over the place to find them...so say a prayer, if you will, that those things will be easily located.  :)

at a loss for words

I just want to add a quick personal update, as I mentioned this in my last post.  I mentioned my laptop had died. 

Today, I returned home from Lillian's therapy to find a box at my doorstep, immediately I started trying to figure out what it was, medical supplies....maybe her new feeding pump,no they have to train me on that, they can't just leave it, have I ordered anything...no, I'm forgetful at times, but not that much.  I get Lillian in the house, open the box labeled amazon.com, and find a new laptop.  Tears, nothing but tears, I'm holding them back even now.  Happy, joyous, thankful, TEARS.  The anonymous note inside put me right over the edge of grattitude.  I am so unworthy.  I feel so blessed.  I could go on on and on here, but THANK YOU.  Thank you for being His hands and feet.  I am so incredibly moved beyond anything words can express. 

Little to report...

I have been out lately.  My laptop died, and my old computer is a serious dinosaur.  I just don't have time to sit here and wait for all the waiting.  I'm grateful to still have a computer, but I just don't have the access as good as I used to. 

Lillian has been battling the same issues that are her life.  She continues to have ruptured ear drums about every 2-3 weeks and last month she had on heck of a viral infection that took me back to trach days.  Retracting and wheezing.  No sleeping for me.  It was a bad one.  She is already battling ANOTHER ear infection and spiking temps almost daily.  Albuterol has been back on our schedule for some time now. 

Her PT told me today they did some sort of test scoring on her.  At her size, she is comparable to about a 3 year old and physically that is about where is she is.  She shared that she wasn't sure how much more progress we would make in certain areas...but we will keep pressing forward.   I think that is a realistic summation.  I actually sat in on her OT last week and had to hold back tears as I watched how hard it was for her to do some of the simplest tasks and then, she would turn around and give me the biggest smile in the world.  Why should I be tearful when she always has a smile?  Such a trooper. It has held me heavy hearted some this week, though.

 I cannot actually believe she is going into Kindergarden next year, in just a few short months.  They are voting on making K full day here next year and I cannot even fathom her handlng that or me either for that matter.  Here, I'd spent all this time in prayer about her going into the special education classroom and had finally felt God's peace about it,  and now I may face her going all day???  Oh mercy.  I have really struggled internally with the thought of her being in a special ed room.  I don't say any of this to hurt others, just to be honest.  It's all me.  My own thoughts. Sometimes I just see her as so average and to think of her separated in that way from all of her peers has been a real struggle.  It is, however, her reality.  If for nothing more than her safety I believe it's the best choice.  She just doesn't have the physical strength that most kids her age do.  I am so grateful to see her moving on in school, bc I know it could be so different, but it just doesn't make it easier to handle.

She is making lots of sounds, and few words pop out here and there.  It's always funny when it happens and so exciting.  She has been struggling with swallowing recently and I hope that is related to all the drainage she is suffering. 

She routinely "talks" with invisible people and it is the funniest thing to watch.  I like to see her bossing them around or encouraging them to come down the slide after her.  a hoot, I tell you. 

Some of the things she loves recently, Good Luck Charlie, the Llama books by Anna Dewdney, Bethany's build a bear alaskan malamute, TACO BELL.  OMW that girl loves some taco bell. 

I cannot even believe we are already into April and this year is just flying by.