Tuesday, January 31, 2017

Life Lately

This is the longest I've ever been away from my blog.  Writing is my passion, my hobby, and my escape...and I have missed it terribly.  But life has thrown us another major curve ball and I just simply haven't had the time, or the drive, or both.  I don't even really know how to write this post.  I was thinking about doing a big catch-up on all things Stella, Josie and Kaiser...you know, like I used to.  All organized and following the usual format.  But honestly I don't have it in me, and pretending to be in a place I'm not goes against every principal I've had since starting this blog.  So I'm not going to go that route.  I'm just going to wing it.  An open, honest (probably too honest) catch-up post on life lately.  The good, the bad and the ugly.  So grab a drink and settle in, probably going to be a long post...

Where did I even leave off?  (pauses to read last post)  Oh yes, preparing myself for a beautiful fall.  HA HA!  Well October brought another trip to the ER for Stella (croup), an overnight hospital stay for Stella ON my birthday when I was also terribly sick because she had an ear infection and was refusing meds and fluids, Josie catching a bad cold, Mark busy at work, and my car battery dieing at the gas pump.  Stella was diagnosed with asthma and put back on her inhaler and allergy meds this month.  I had so much hope things would improve.  I even scheduled a long overdue birthday trip to the spa, where I was rewarded with a nasty burn on my face from an inexperienced esthetician waxing my brows.  That was super fun.  We did manage to celebrate Halloween before the sickness returned.  Josie screamed the entire time (social anxiety at it's finest), but Stella had a blast and I was so thankful we were able to take her out!
Little dragon and Dorothy.  Toto was in the basket but she wanted nothing to do with that!
And just like that, when I thought things probably couldn't get much worse, November hit.

Now let's pause for a minute.  I want to say something before I go on about the past few months.  Life can ALWAYS get worse.  I am thankful every second (and tell God daily) for all my blessings.  But that doesn't mean we aren't allowed to be upset when life gets us down.  I think at some point in our lives we all are going to face the eye of the tiger.  It's what makes us human.  It's what makes us lean on God.  Some people's tigers are just a little bigger, a little meaner.  But it's still OK to be afraid of our own.  Keep the perspective, but allow yourself to FEEL. 

OK.  Moving on.  So November...  I got a call the first day of November that Stella was wheezing again at daycare.  That led into another long sickness spell.  I was so discouraged, I truly thought the inhaler would solve her recurring illnesses.  At this point I think people thought I was crazy.  Thought I was using it as an excuse to avoid outings.  I felt like people weren't listening to me.  Everyone told me "oh yea she started daycare she'll be catching everything"  "oh yea they are sick all the time at this age"  Call it mother's intuition, but I KNEW something was off.  She just couldn't recover.  She had been sick now for over 4 months.  Even when she was better she still wasn't "healthy"  I was growing tired, frustrated, and so so concerned.  On top of that, Josie, Mark and I couldn't get healthy either.  We kept passing the germs around.  Think about when your kids or you get sick.  Sometimes it lasts a week or so, at most.  Even if it's only a few days being sick and having sick babies is awful!  Really puts a damper on things until every one's better.  Now imaging it lasting over 4 months.  For your entire family.  While you are trying to deal with therapies and mental disabilities of a 2 year old.  Ending Early Intervention.  Trying to get an IEP set up.  Trying to wrap your mind around an Autism diagnosis.  Having everything you try to do for the mental disability (therapy, daycare, outings) make her sick and delay her physical health.  But then keeping her home trying to get her healthy and suffering setbacks mentally.  I couldn't win.  I fought a losing battle every single day.  I never gave up, but I reached a whole new low.  Or so I thought.

Stella's birthday was quickly approaching.  November 17th.  I sketched a wish list of all the things I wanted to do.  Birthday pancakes.  Her annual balloon pictures.  Meet daddy for lunch.  Maybe a picnic supper.  Presents.  I knew she was very sick, but I hoped every day she'd wake up better.  That week was awful.  She wouldn't eat, drank EXCESSIVELY and then peed even more.  I changed her clothes and sheets multiple times a day.  From Saturday until Wednesday (her birthday was Thursday) she got worse every day.  Falling asleep everywhere.  Putting herself to bed.  Running into doorways.  I called the doctor 3 times Tuesday.  I took her in Wednesday.  She had a double ear infection and was on steroids.  The consensus was that she just felt lousy.  But I couldn't shake there was something else going on.

Thursday her birthday arrived.  She didn't eat the pancakes.  Fell asleep holding her balloons.  I cried all morning.  I called Mark, who came home at noon.  She asked for a happy meal.  I went to town and got one.  She wouldn't touch it, or her birthday cupcake Mark brought home.  She put herself to bed at 6:00.  I sat down and made a list of all her illnesses since July.  I cried some more.  I went back to her room and went to pick her up (she kept getting out of bed and laying on the floor).  I could feel her bones.  I cried hysterically, begged Mark to go the the ER with us.  I told him I was afraid she had a disease, it was like her body was eating itself.  He agreed. I packed up the girls, he started the car, and we headed to the Princeton ER.
This picture breaks my heart.  She is so thin and frail, and her eyes are so cloudy.  Looking at pictures I can't believe how sick she truly was, especially on her birthday.  That was the saddest day of my life.
An even sadder picture.  Mark filled a few balloons with helium for her before work that morning (from a leftover tank from last year's party).  These were the only things that made her happy that day, she put herself to bed holding them.  I can hardly look at these pictures, but they are a part of us now.
When we arrived they asked if her blood sugars had been tested after I explained her symptoms.  We said no.  They drew some blood.  At this point she was lethargic, but still interacting a bit (i.e. screaming and crying).  While they ran the tests I asked Mark what blood sugars meant.  He said diabetes.  I said "wouldn't that be a kick in the ass (pardon my French I was at a whole other level) if she had diabetes on top of Autism and not being able to tolerate medicines or communicate very well"   We kinda smirked at the possibility.  And then the doctor came back in.  He told us she was an extremely sick little girl.  I was SPOT ON about the intuition of a disease and her body eating itself.  That motherly intuition is some powerful stuff!  Her blood sugars were over 800 (normal is around 80).  He said "I'm afraid it's not good news, she has Type 1 Diabetes"  I can't explain what that was like.  To get bad news from a doctor is pure hell.  To get it about your little girl, while she lays there on the table almost unconscious in her birthday shirt on her f'ing birthday no less, clutching her puppy, already struggling with so much, is like a damn breaking lose.  I wanted to explode.  With anger.  Fear.  Sadness. Overwhelmed.  I cried.  Hard.  Which if you know me isn't like me.  Mark cried.  The next hour was a blur.  She had to be transported via lifeflight to OSF in Peoria.  She would be there about 5 days.  Josie was with us.  Mark's mom came to get her, but we found out we couldn't go in the helicopter.  The flight crew was exceptional.  The staff was amazing.  I cried at everything.  I had the fear of God in me that night.  Reliving it twists my heart.  I took her birthday hair tie and clutched it for dear life as we took Josie home and packed bags.  I looked to the sky and saw a light...was that the helicopter with my baby?  I almost puked.  The crew called me when they landed safely.  Mark and I drove to Peoria.  The longest drive of my life.

Stella was in the hospital from Thursday night until Monday afternoon.  It was the worst experience of my life.  I won't go into much detail.  Someday I will, just not today.  Not yet.  She screamed.  Yelling words and emotions I didn't even know she knew.  She yelled she was mad.  The doctors were monsters.  She yelled she was scared.  They lost her IVs.  She still had that damn double ear infection.  She had to get antibiotic shots.  They were AWFUL.  Respiratory came up for her inhaler.  We had lots of issues with the hospital staff.  Mark said he'd deploy to war again in a heartbeat before he'd ever want to experience that again.  It was an experience that will forever be etched in our minds.  It will always feel like yesterday.  The scar of those few days is deeply seared in our souls. 
First admitted to OSF, the last night we were there when she finally got excited to open her birthday present (troll painting craft that she happily did for an hour!), and rocking the Life Flight shirt they sent us in the mail. 
But then we found the turning point.  After every hurricane comes a rainbow.  She was transferred from IVs and fluids to insulin shots.  The every few hours torturous blood draws ended with that transition.  The Pediatric Diabetes Recourse Center (PDRC, located in the hospital) sent up a wonderful educator to answer some questions and start our training.  We met her diabetes doctor (endocrinologist) who was magnificent and worked out our staff issues for us.  We finally slept after 3 days without.  Josie was doing great with her grandparents (she pulled it together just in time, previously she screamed for anyone except us.  Thanks be to God).  Kaiser was doing fine in his kennel at home.  Stella could get out of bed.  She could eat and drink (with carb counting and insulin).  It was still awful, but it was a breaking point.  Things started to get better, not worse.

We came home on a Monday, after a full day of training with two more days of training left to complete in the following weeks.  Again, I won't go into too much detail yet.  Basically Stella can eat anything, we just have to count every single carb.  Try it for a day.  Try to count carbs in a casserole.  It SUCKS.  Then imagine trying it out and about in public.  Then remember this is a (just turned) 3 year old with communication difficulties who doesn't understand what's going on.  The holidays were right around the corner.  Pre meals mean a blood sugar check, post meals mean an insulin shot.  3 times a day, with a check and shot before bed.  Plus at least one in the middle of the night.  It's like learning to care for your kid all over again, like having a newborn.  Oh yea, you also have a new baby too.  At first the sugars were all over the place.  Highs.  Lows.  I called the PDRC every day.  I've always fed her healthy foods, but I grow so frustrated with her eating now.  At first she ate a ton, now she is going through a stage where she never wants to eat or drink.  To make counting carbs possible while we're overwhelmed, I use boxed foods.  When she's low I have to feed her sugar.  Snacks must be under 10 grams of carbs or they accumulate (or we have to give insulin for snacks too).  This leads to a lot of sugar-free (aka chemical rich) foods.  I am having to go against everything that is important to me.  It sucks.  But for now I do the lesser of two evils and just try to keep her blood sugars stable.  I will work through the rest in time.  It is a marathon, not a sprint.  Except I'm a sprint kinda girl.  Learning to adapt, trust me!
Thanksgiving 3 days after we got home from the hospital.  We spent it being oh so thankful at home.
Thankfully she handles the shots and checks very well.  We were surprised.  The other big part of the puzzle is keeping her healthy.  She was scheduled for tubes January 12th as her ears had yet to drain.  I hoped that would be the last piece of the puzzle to get her healthy.  We were on a wait list since October.  It sucked.  I tried taking her to a chiropractor who specialized in ear infections and Autism.  A true blessing for Stella.  But it's over an hour away and I couldn't commit to that at the time.  So we go with tubes and will take her this summer to align her body properly. 

So anyways.  The sickness.  If Stella gets sick, we have to push fluids, check ketones in her pee, and correct with insulin accordingly.  If she gets on antibiotics, they interfere with the insulin, possibly making her resistant to it temporarily.  When Stella gets sick, she refuses liquids and medicine.  Hence the previous hospital visits and stay.  Now it's even worse.  She was a sitting duck with one ear infected, and fluid behind both and her nose.  So we have chose to delay Pre-K until after the tubes.  We also decided to be hermits to expose her to as few germs as possible.  Some people understand.  Some don't.  I really don't care.  Trust me, it affected me the most as a SAHM hibernating at home with a teething 7 month old, a 90 pound dog recovering from an ACL tear, and a 3 year old with ASD and diabetes all trapped in an 800 square foot house during the winter.  But it was the best option until we could get her tubes in, so that's what I did. 

Despite being trapped at home in the winter, December brought a few positive changes and we really did make the best of it!  Stella wasn't sick (other than her ear issues), and began talking and experiencing fewer meltdowns as a result of feeling better.  She was in the "honeymoon" stage of Type 1 Diabetes (her pancreas was triggered to release the last of it's insulin when we started injections.  this can last from a few weeks to a few years.  this means we didn't need to give her much insulin, but her pancreas is unreliable.  Sometimes it produces too much and we get scary lows.  But it is a break from the shots and gave us time to compose ourselves and prepare for whats to come). 

We were thankful for a good month with Stella, because as always we met several other challenges at the end of the year.  Our heater broke and our septic system needed pumped again.  I also tripped over the baby gate and ripped off my toenail and sprained some tendons in my foot.  That made caring for my babies interesting!

We opted to stay home for Christmas.  I was so desperate to keep Stella healthy for her tubes.  I couldn't bare to reschedule, we'd been waiting MONTHS to get her in.  I just wanted that poor girl to get fixed up and in school already.  Add in Josie's social anxiety and I knew it would be more trouble than it was worth this year.  Turned out I made the right decision.  Several members of Mark's family got hit with the flu right after Christmas.  BUT...   We had visitors over the holiday.  It was against my better judgment but I let it happen.  And in case you couldn't guess, I got hit with the flu right after Christmas.  Hard.  It was the worst flu I've ever had in my life.  I threw up so much for so long that my chest hurt for days afterwords from the heaving.  So, even though I was better by New Years, I was all prepared to take Stella into the hospital should she get it.  I literally spent the New Years weekend holding my breath praying over and over to God that she didn't get it.
Christmas Eve snuggles, and Stella all dressed for our tour of Christmas lights in her jammies!  Matching PJs and kisses Christmas morning.  A beautiful and blessed Christmas at home.
New Years also spent at home.  New Years Eve fun and matching jammies for a relaxing New Years Day!
And my miracle happened.  We sailed into 2017 with me being the only flu victim.  I was sure things were looking up.  We took down all the Christmas décor, did some small cleaning, and re-arranged all the kids toys.  And then Josie woke up the first Sunday in January with a bad eye.  It was watering terribly, she couldn't open it.  She cried all morning and wouldn't eat.  First we thought she poked her eye (as she'd done before), but after a quick nap it wasn't any better so I sent Mark to the ER with her.  I had a bad feeling it was something more, just based on our luck lately alone!  Sure enough, it was pink eye.  Drops 4 times a day for the week.  GREAT!  I can give pokes and shots no problem but eye drops make my stomach turn.  Oh well, once again just buck up and do it!  Again, I prayed and prayed Stella wouldn't get it.  Thankfully, once again, she avoided it!  She made it to January 12th illness free and ready for tubes!
Poor pink-eyed baby :-(  Still all smiles after the drops got her feeling better!
I called the PDRC, Stella's pediatrician, and the anesthesiologist at the hospital prior to her surgery.  I was sooo nervous about her sugars dropping since she couldn't eat or drink before the surgery.  They said she could have sips of apple juice up to 3 hours before the surgery, so I woke her up at 4:00 am to sip some juice and get her sugars up just a tiny bit to prevent lows.  We did the surgery at the hospital, and she was the first one of the day, due to the diabetes.  They assured me she didn't need an IV and the surgery only takes about 15 minutes.  We had the best doctor there is.  But I was still so worried.  She did great, other than being an absolute bear waking from anesthesia.  They assured me it was normal, but if you can imagine she refused food or drink.  What I forgot to account for (simply because we hadn't experienced it yet) was that stress raises blood sugars.  So she remained very stable because getting worked up over the surgery balanced out the lack of food or drink.  She slept on the drive home and was back to her usual self by the time we got home!  Other than having lots of blood and drainage come out of her ears (they were still pretty infected at the time of the surgery) and having to do the ear drops twice a day for a week, she was even better than ever!  Drinking more water (she HATES to drink.  anything.  it's awful), talking more clearly, and in a better mood!  Poor girl, I think those ears bothered her more than we thought.
Waiting for tubes on daddy's lap.
Well I'd like to say it's been smooth sailing since then.  But we know better by now, right?  My mom watched Josie during the surgery, and as luck would have it she came down with Influenza A while Josie was there.  I prayed Josie wouldn't get it.  But that Saturday (2 days after the tubes) I went to my overdue New Year's spa day (honestly the only thing I do for myself anymore, about every few months).  Somehow I managed to have an allergic reaction during my facial.  I swear my body is revolting against the stress.  It was so bad!  My face turned red, blotchy, and puffy.  She applied cooling masks and rags and I laid there until it went down a bit.  Real relaxing, right?  I had to go right home after that because I looked like a Halloween character, and I got home to a sick baby girl.  Josie was miserable all weekend, so I had Mark take her to the doctor Monday (he always has MLK Day off...well he went in that morning but came home in the afternoon).  Sure enough she tested positive for Influenza A.  Stella was starting to lay around so I feared it would hit her too, but prayed she would be lucky again.  That night my dad got married in a small ceremony at a friend's house with just family attending.  As you can probably guess I had to go alone while Mark put the babies to bed.  I was bummed, but what can you do?  That night my nose started to stuff up too.  Great.
So happy for my dad and excited to have such a wonderful step mom!
Sure enough Stella woke up screaming every hour all night long.  Tuesday was supposed to be her PDRC appointment in the morning and first day of Pre-K in the afternoon.  I cancelled both and headed to OSF instead.  She was refusing food and drink, and I knew it was only a matter of time until her sugars dropped and I'd have no way to keep them up.  We needed fluids and sugar water through an IV.  After the drive and a 2 hour wait at the hospital, we got into the ER.  Sure enough we were in the 50's by then, so they gave her glucose gel.  We endured the awful process of putting an IV in.  The nurse failed twice so they called the trauma nurse, who thankfully got it in.  I had to step in the hallway this time.  I made it through 5 days of hell when she was diagnosed, but this time I couldn't take it.  I was crying and didn't want her to see me.  She called out for me when it was over and I went in there.  I don't know what is best.  Seeing me during the process might relate the trauma to me or it might help her deal.  I don't know.  We just do the best we can.  We spent the entire day in the ER.  They were amazing.  Brought her toys, chocolate milk, blew bubbles during the IV torture, and even found Cars 2 and a DVD player for her. 

Finally around 6:00 they had a room ready upstairs for us.  We were admitted upstairs by 7:00.  At this time I was so tired and HUNGRY.  Thankfully they have a late night menu.  After eating we both fell asleep.  We spend the next 2 days riding it out (oh, she tested positive for Influenza A too if you hadn't guessed by now!)  She had to be better enough to eat and drink on her own before we left.  Mark was at work or with Josie, so I was there with Stella alone this time (other than Mark bringing me some stuff Wednesday night).  We were in isolation, so I couldn't even leave the room (because Stella was contagious).  The coffee was terrible, I didn't sleep, and I was sick myself.  Thankfully Stella's doctor called in Tamiflu for Mark and I to help us stay healthy and it worked quickly.  After an extremely long few days she was finally better enough to go home.  I was nervous but excited to leave.  On the plus side we were actually able to get the Tamiflu in her and she kept it down, so that was a first!  Really has me hopeful we can give her medication now! 
From a super sick little girl in the ER to recovering in the Children's Hospital with her beloved balloons to getting ready to leave and enjoying the view.  Thankful they helped her heal!
Once we got home she did OK.  She still hates to drink (yes, EVERYTHING.  I've tried.  pop, chocolate milk, every juice under the sun, you name it.  I have no idea why she hates drinking).  The nurse suggested giving fluids through a medicine syringe if she won't drink, and to this day I have to do that occasionally.  Unflavored pedialyte, a few ounces at a time.  It keeps her out of the hospital at least.  Otherwise we just rested up over the weekend and checked back in with their doctor Monday.  Both girls were on the mend, so the plan was to rest up this past week.  Stella had her first dentist appointment Wednesday though.  I was referred to a kids only dentist in Peoria.  I am so thankful we found her!  With the Autism, a trip to the dentist can be quite traumatic.  Instead it was a day Stella still talks about!  She had a cage of birds, a tank of sea turtles, tons of toys for the kids, and a photo booth.  Stella didn't want to leave!  What a wonderful experience, thank the Lord.  Going through tough times makes you appreciate people and blessings so much more.  Sometimes I feel like I'm seeing life for the first time. 
LOVE these pictures.  Shows how much fun she had at the dentist.  Still talks about it everyday!
Yesterday Stella was finally able to start Pre-K!  She loved it so much that both days she cried when I picked her up because she didn't want to go home!  Her blood sugars have been a bit wacky due to the different schedule, and she is used to an afternoon nap so going without 5 days a week is definitely an adjustment, but this is such a big step for her.  She loves kids and I know she is going to learn so much.  Josie is napping in the afternoons now, so that will also give me some much needed time to myself every day.  This week I am taking her, but next week she will be picked up by a bus (van actually).  She goes to the next district over because our district is too small and doesn't do Pre-K IEP's.  The school she is going to has 2 full time nurses that are WONDERFUL (we had a meeting already).  One even has a Type 1 daughter!  There are 2 other little ones with T1D in the school, close to Stella's age even.  Back to those blessings.  I thank God for placing us in this district right now.  It's just what she needs and I have no worries about her care.  Not sure what services she will need educationally, they plan to evaluate her and go from there.  We are starting private speech back up next month with her previous therapist too.  Her Autism doctor recommended it and I agree.  Her therapist is amazing. 
First day of Pre-K.  She started by crying when I put her book bag on (take the bracelet off mama!).  I asked her if she wanted to wear a pretty dress but she said "how about red lightening McQueen shirt?"  good thing Santa knows her so well!  True to her unique form, she randomly grabbed a pretend ear of corn and blue rubber duck from the dentist (along with puppy of course) on the way out.  When we got there she was happy to wear the book bag since all the other kids had one.  Love this unique girl to pieces, such a memorable first day!  I'd expect no less :-)
I know I've said this a million times, but I feel like things are finally looking up.  We have our health back.  Kaiser is moving around so so much better, he's back to his old puppy-self!  This weekend I scrubbed down the house.  Stella finally go to start school.  We can get into a better routine.  The honeymoon stage of her diabetes is on it's way out, so we are back to shots, but on the plus side that means it will be more predictable at least.  I feel optimistic.  I know we can get hit again.  With something.  With everything.  That's been our pattern over the past year.  But I have learned it can't break me.  However, I am severely bruised.  My body is (literally!) in bad shape.  My marriage has really taken a hit.  Don't get me wrong, we love each other very much, but you can't experience all we have endured without tension sneaking in.  We have a lot of work to do.  Starting with training a few baby-sitters so we can leave Stella once again for date nights.  (keep in mind no one knows how to take care of her right now so she is with one of us 24/7.  This means zero date nights and good-bye vacation we wanted to take.  drop in the bucket compared to everything else, but a side effect none the less)  Despite the scars burned into my mind and the stress waged on my body and marriage, I am not broken.  I am still here.  And no matter what comes at me I will continue to be here.
Finally feeling better and got his beloved Kong back!  Not running yet, but walking him every chance we get and helping get that leg back to 100%.  Love this dog!!
My beautiful girls.  My inspiration.
But I need some time.  I have to heal.  I need to go through the stages of grief.  My daughter is going to have to fight constantly.  Her mind and her body are fighting her.  She's only 3 and every day has been a struggle for her.  She will learn to cope with Autism and T1D, but they will never go away.  She will not outgrow them.  No 2 days are the same, and as one struggle  gets easier a new one will present itself.  It's going to be a long road.  She needs me.  Not the broken version of me now.  The strong mama I know is buried under all these scars.  So I must grieve the simple life we will never have.  Get mad at the world for all her struggles.  And then grow strong, physically and mentally, turning to God for guidance, so that together we can wage war on these diseases.  I must rebuild my marriage, for together we are so much stronger.  I have a lot of work to do.
The bravest, strongest, most special little girl I know.  I can't wait to make her proud and teach her to be strong and FIGHT the challenges in her life.
On this note I have to say I am pausing my blog for a while.  Seems ironic because I haven't wrote in 4 months anyway, but I wanted to do one last update before I take a break.  The last few months I have just been in survival mode.  Keeping busy with what has to be done, and learning to care for my daughter all over again while caring for my baby too and enduring all the sickness to boot.  I haven't even truly processed everything to be honest. 

So the next few months (or however long it takes) will be all about family, health, and rebuilding all we've lost.  I just want to pause from all social media and the world and just learn to live again in our new reality.  Learn to thrive, not just survive.  This will take all my mental energy and time as well.  I look forward to coming back stronger than ever, re-vamping my blog (lets be honest it's long overdue!), and sharing more about our life and overcoming all of our struggles.
My beautiful family.  Time to heal.
Thank you for reading, God bless you and we will meet again soon!

No comments:

Post a Comment