The response I have received since announcing our plans for our Little Miss Hannah Foundation have been absolutely awe-inspiring!  So many people have offered up support for helping to create it, to support, and and to help us get the word out when we are ready.

I feel so lucky to have such amazing people in our lives.

One of our biggest supporters, even from before we announced our nonprofit, have been my brother-in-law and sister-in-law and their business partners (family friends who were instrumental in getting World Rare Disease Day in the school last year).   They have a very cool business called Squeeze Play Sports.

Without even knowing our plans for our nonprofit, they felt it was important to get Hannah’s story out.   They put Hannah’s picture and story permanently on their business trailer.  When my brother-in-law first drove up with it and I saw it, I got so excited!!

So I was talking with my brother-in-law and sister-in-law about our foundation, and they have offered to do our first fundraiser to help us raise money to get the foundation created!

Yes, we are having our first fundraiser!!!    They have offered to donate all proceeds of any sales generated because of Hannah towards getting Little Miss Hannah Foundation off the ground.

So please take a look at their offerings – personalized photo ornaments, lots of personalized sports items, etc.   They also do team trophies (check out Abby’s below), so if you have a child on a team this season this could be fun trophy or coaches gift.   If you order, be sure when you send your personalization info to mention you are “doing it for Hannah,” so they know where it came from!

And if you aren’t in a position to order just yet, you can still help us support them (who will forever be supporting us) by going to their Facebook page and giving them a ‘like.’

I love my brother-in-law and sister-in-law tremendously.   They have gone above and beyond this past year in helping us take care of our family, taking the kids to their sports practices, bringing over dinner, and most importantly, treating Hannah with so much love and kisses.

For what they do for us, this is the least I can do for them – I would love to see their business grow in success right along with our Little Miss Hannah Foundation.

Today was another decent day.

I mean, I guess it was decent from the standpoint that Hannah’s agitation and pain was minimal.  Hardly decent because she can’t see me, can’t interact with me, and just is asleep all day and night long.

Is this what her life has come down to?   Brief moments, 90 minutes total today, of non-agitated awake time within a 24-hour period.  I am so, so grateful that we have finally been able to get her comfortable with the meds.

But when she is awake for those 90 minutes or so, I treat her as if she can still see, still hear me, and still interact.  I talk to her a lot, sing to her, and I even still say stuff like “Baby, wait one second, I am going to get you a new diaper.”  Yes, I actually stopped after I said that and thought about it.

Some habits are hard to break.  My head knows what is going on — my heart still holds out hope that one day she is going to snap out of it and have even just a few moments of coherence  and interaction.  I keep thinking that if I keep talking to her as if she can still interact then maybe her brain will keep trying to interact and one day give me a knowing smile.

It is also my way of keeping a connection with her, I think.  She has always been nonverbal (yet so expressively communicative), but now she is noninteractive too.  My brain plays tricks on me thinking that she is not as ill as she is, that she can still hear me and will smile or make one of her adorable faces.  I keep up the singing and talking, hoping that moment will be the one.

Then my heart aches when I realize I will not see it nor likely I will ever see it again.  I haven’t seen that smile in a couple of weeks now.

Am I really never going to get another smile from her again?   Never another moment of mutual gaze and love that we have done day in and day out for three years?

That just can’t be true, can it?

Hannah’s breathing has become more labored and shallow I have noticed.  Even with the oxygen in her trach humidifier going, her oxygen saturation only goes up to the upper 80s, very low 90s.  Without it, she is in the low 70s.

She is also starting to not tolerate her feeds anymore.  Her belly is getting distended within a half of a day now, and we are downing the miralax and prune/apple juice.  We had to give her an enema tonight to get her some relief, and even that took 35 minutes to work.  I’m sure it partly has to do with her meds because she is on so many tranquilizer types of drugs, but I have to wonder if her body is just too tired now.

I hate seeing her suffer like this.  But if she keeps fighting to stay with us, then I will keep fighting right along with her.   I will do whatever it takes to keep her comfortable and be able to smother her with caresses, kisses, and love for those moments she is awake.

One of the tools that the hospice gave us to help her with her agitation was this amazing lavender cream that also has a hint of orange and lemon in it.

Hannah woke up about 30 minutes ago, slightly agitated but definitely showing some pain.  So I gave her scheduled meds with her as-needed dose of methadone and benedryl to hopefully lull her back to sleep.

While I was waiting for the meds to kick in, I massaged Hannah with this cream.   I absolutely LOVE doing this, and I can tell that she responds very positively to the massage.  From head to toe, she gets a full body massage.   The smell is fantastic, and I take my time working it in to almost every part of her body.   She fell asleep during my massage (I’m sure with the help of the meds), and it gave me a sense of relief that we were able to bypass another use of chloral (which was used 5 hrs earlier).

I was never a fan of aromatherapy before, but after seeing how well Hannah responds to the lavender, I am a huge fan now.   I have to find time to go out and by a whole slew of lavender for her – candles, soap, bath stuff, etc.  My friend Heather got me some lavender extract to put into a spritz bottle so I can put some of it around her bed.

She has such a good response to the smell of the lavender, how can I not do whatever I can to get it for her?   I feel like there is at least something I can do to help make her feel more comfortable, however little it may be.

She is asleep now.  Her body is calm and peaceful finally.   She is hooked up to her oxygen and feeds and smells like lavender, but she is asleep.

I will love lavender forever…

Of course I spoke to soon on my last post because less than an hour later, she was really agitated, wanting to be lying on the floor.  I tried the rescue Methadone like our nursing coordinator wanted us too, which took the edge off a bit, but within 45 minutes, she was really uncomfortable.

Back to the chloral hydrate.  It worked very quickly this time at least.  So we made it almost 16 hours between doses which is still great.  We will see how the rest of the day goes though.

I have really come to appreciate doing Hannah’s night nursing now.  It is definitely a lot more nursing work now, as I have to redo the med sheets and schedules each day plus keep track of administering all her meds, controlling her oxygen and humidifier, managing her feeds/water, turning her so she doesn’t get sore, etc.

But I get uninterrupted time with her.  I don’t have to worry about Ethan and Abby feeling neglected because they are asleep.   I can crawl into Hannah’s bed with her (twin in the family room) and cuddle next to her.  I can just spend alone time with her all night long.

Even though she is asleep, I still get my quality alone time.  That is so important to me.  It’s almost like my daily Hannah fix because I know I have to step back a bit during the day for Ethan and Abby (which is why we have day nursing).   Daddy and I still switch roles at 5 am, which is when I usually go to sleep.  The kids are used to mommy sleeping until lunch time, which I feel is a decent trade-off so they can have quality time during the day and evening.

It also gives me quiet time to cry.  Tonight, when she let me hold her, I got emotional.  I start thinking about how weak she is, how sad I am for her, how much I miss her smile and beautiful eyes staring at me.  I keep trying to get her feel, her smell, everything imprinted in my brain…how much I yearn for things to be different.

But, at least for now, I have my mommy-Hannah alone time.

After a hellacious day and night yesterday with Hannah awake and uncomfortable most of the day, today was a welcome change.

Because we proved that morphine, even at 20 mg, had no effect on Hannah, we decided to discontinue it and replace it with methadone for pain control.   So from early morning on, she had no more morphine.  The methadone didn’t arrive at our house until late evening tonight.

But….Hannah was a bit calmer today and slept most of the day!   Yes, I welcome her sleeping most of the day if it means she isn’t in pain or agitated.   She woke up a few times, was not near as agitated, and she went back to sleep with only the help of Benedryl.  We haven’t used the chloral hydrate since 11 am — this is huge!  Right now, that is more than 14 hours since her last chloral, which is a record since we started this whole process.

Best of all — she let me hold her again!  When she woke up this afternoon and I scooped her up and sat on the couch, she didn’t try and throw herself out of my arms.  She still is completely out of it, and I’m almost certain I got a lot more out of the sweet cuddle time than she did, but it was heaven for me.

She also let my sister-in-law cuddle with her for almost 45 minutes tonight as well as being smothered lovingly with kisses by my two little nieces.

Then just a bit ago, she was up for almost thirty minutes cuddling with me before the pain and agitation started and I had to give her Benedryl.  She is back to sleep now.

I don’t know if the methadone is having any effect, but she got it this evening a few hours ago so it definitely didn’t have the same reaction as the morphine, which is good.

Perhaps the morphine was causing more problems than we realized.  After all, no meds seem to work normally for my sweet girl.

Even though it was only about 90 minutes collectively of cuddle time, it was 90 minutes that I was able to just be in love with her, caress her, and feel her body snuggle against mine.

I’ll take it.

I feel like I am living a nightmare right now.

It has come to the point now that I dread seeing Hannah start to wake up because she most likely will wake up uncomfortable, her movements going uncontrollably, and most of all, seeing her writhe in pain from whatever is causing the pain.

We have made a lot of changes to her med regimen in the past few days including phasing out the scheduled phenobarb, adding valium and morphine, and increasing her klonopin, benedryl, and baclofen among more than I can’t think of off the top of my head.

When we added the valium and increased morphine yesterday, she actually fell asleep for 13 hours!  Her average over the past few days before that had been about 2 hours at a time with very, very little calm and quiet time in between (although she seemed to have some calm awake time for about 2 hours a day a few days before that but she quickly gained a tolerance to the meds that allowed that).   It had become a race to get to that 4-hour mark when we could give her the chloral hydrate again and knock her out.

Oh, and have I mentioned that the chloral hydrate is starting to not be as effective anymore?   Twice now in the past 36 hours we have used it and it did NOT even work.  Hell, a living hell.

She is so miserable, drugged up, and I’m not even sure how much she is even aware anymore.  We aren’t sure if she can see us anymore, we know she can hear some things but what she can understand is unclear.

What kills me the most is that cuddling her now gives her more discomfort, and she would rather be lying down untouched.  Her hospice nurse thinks that she has developed some pain to the tactile stimulation that holding her brings.  KILLS me.  At least she will let us lie next to her, caress her, and massage her.

All I want to do is comfort her.  That is my role as a mom.  At this point in her disease, I feel like all I can offer her is showing her comfort and love.  Yet, holding her makes her uncomfortable.

I look at the pharmacy we have accumulated over the past two weeks.  Massive doses that would knock me on the floor, they barely touch her.  And yet, I am so damn afraid of even going one-tenth of a milligram more than that doctors prescribed for fear that I may cause more harm to her.

Then this afternoon, she started having problems with her oxygen saturation.  She started dipping into the mid 80s.  Obviously a result of all the tranquilizing meds trying to calm her comfortable.  But we broke out the oxygen this afternoon for the first time in a LONG time.    Even on a 10L oxygen level (not direct, just into the area around her trach), she only got up to 95 or 96 (100 is best).

I was exhausted when Daddy got home from work in the afternoon, and I was ready to crash since I hadn’t had much sleep in the past three days because of his work schedule.  I was lying in bed with the door closed, and then I kept hearing the pulse ox alarm keep going off because her O2 was dropping under 92 a lot…with the oxygen.

I just started crying.  I heard Daddy, Hannah’s nurse, and the hospice massage therapist out there, and I just walked out of my bedroom and turned off the pulse ox.  I said to them, “why are we doing this?  We already know what is going on.  Just keep the oxygen on her, and leave the machine off.”   I didn’t even allow for a discussion of it.  I just turned it off and walked back into my bedroom, closed the door, and I start bawling.

This is a nightmare.  Hannah is caught in this horrible nightmare.   This is hell.

There have been many times that I think that maybe someone has made a mistake.  That maybe if we stop all the meds that she would go back to where she was two months ago and that this is all a bad dream.  That maybe we are causing more harm than good with these meds at this point?

But then I go back to the brain MRI.   The one with the “tremendous” amount of white matter loss.  I go back to what her nurses have said since we went into hospice, how they had seen a lot more uncomfortableness and agitation over the two months before we started this last round of hospitalization.

Right now, Hannah is asleep.  Knocked out with a boatload of meds.  Yet, I find myself relieved because her body is at peace right now.

But I am so sad for her.   She deserves peace, cuddles, and oh so much love.  Yet, this disease does nothing but destroy all of that.

And guess who is already staring to walk up … just 2 hours after a crapload of tranquilizers…damn!