Our 12-1/2-year old beagle’s body is failing her.   Molly lies on her dog bed all day long, and when she does get up to walk to the food or water, it is a very slow, uneven, and limpy type of walk.  Going through the doggie door takes her quite a bit of time, as she is slowgoing.  Also, Daddy had to make a path around the deck because she can no longer go up the stairs.

Instead of getting up to bark, she lies there on her bed yelping when someone comes in the door these days.

But she does not seem like she is in pain.

Daddy and I are faced with the decision now as to “when” it is okay to let her go.  This decision seems so much harder these days, especially in light of all of those children that are fighting so desperately for life right now.   I feel like this decision is now so much bigger than just one dog, you know?  It is almost like this decision of “when or wait” is going to dictate so much more of our life than we expected.   Quality of life versus quantity?

My dilemma stems from having Ethan and Abby find her either not breathing or suffering if we don’t do something.  I feel it would be more devastating for them seeing Molly no longer alive than if it happens when they are away at school or something.

For me, I think it is almost time.  Daddy is not so sure.  Neither of us know when the right time is.  We are both afraid to make that determination.  Shouldn’t it be an easier decision?

Obviously, I know there is a bigger picture here with this decision that is making it so much more difficult than it should be.  I can’t even put it into words, but I really don’t need to.  I know there is only so much protecting of Ethan and Abigail I can do…I just don’t know what to do.

We finally got Hannah’s nursing figured out with our new insurance company.  We get 56 hours a week, broken down however we want to use them.   Previously, we had 48 hours a week, no more than 8 hours a day (currently M – Sa, 9 am to 5 pm).  So this is a pleasant change.

I just don’t know what to do with them.  I have asked Daddy for advice, and he keeps saying “whatever YOU want, as this helps you more than anyone.”

My dilemma….as you know, I do the “night shift” every night with Hannah until about 4 am or 5 am.  I get about 4 to 6 hours of sleep at that point (usually broken down into two “naps”), depending on if Daddy has an appointment in the morning or if Hannah has an appointment (though I have been making a point not to schedule anything before 11 am these days).   The days Daddy is out of town or can’t do the mornings with all three kids are a nightmare for me (like this morning).

I decided to take on this night shift in order to take advantage of having a nurse here for Hannah when the kids get home from school.  They get home around 3 pm and the nurse leaves at 5 pm.  This is my one-on-one time with Abby to get her homework done and whatever time is left over for Ethan and Abby.  Also, it helps tremendously having a nurse along Hannah’s appointments with me, especially in the car because I don’t have to stop everytime she has a tantrum or needs suctioning.  But it also gives me free time during the day to make phone calls, etc., but really not enough time.

We still want our Sundays nurse-free.  That is a given.  It is a nice break to just “be a family,” and we have settled into a good routine with that.

So, do I give up a couple of nights and get night-nursing?   That is a possibility.  But then I wonder if how my body would deal with that?  I mean, I am so used to be up until 4 am or 5 am now.  Would I even be able to sleep drug-free if we had night nursing?  I wouldn’t take any type of sleep aide because I want to be able to wake up in case of an emergency.

Or do I just accept the fact that I am the night-nurse and that is the way it is.  I get caught up on my email communications plus the business I have created (to go live on 1/1/11) was created with that kind of flexibility.   The ones who suffer, besides me, are the kids on the weekends because I usually sleep until noon or take a 2-hour nap during the day.  But again, they are used to that and accept that.

I don’t know what to do… give up some nights or not…  I really just don’t know what would be best.   I have 56 hours to divvy up.  How best to use them?

Hannah has a cold.  A simple, normal child, everyday cold.  She has no fever.  Her white count, as of today, was normal.  Her ears are fine, so we know there is no ear infection.  We know it is not trachiitis because her secretions most of the time are clear.   So why is it when Hannah gets a cold, I am so on edge with every cough, throw up, and gag?

I’m starting to get concerned that Hannah is developing laryngospasms when she coughs.  She gets so gooky in her trach, and it is almost like she goes into these spasms trying to cough it out.  They can last anywhere from a few seconds to maybe 30 seconds.  Rarely is there any more secretions in her trach, but she still is acting as if there is something in there.  Also, her body will go stiff sometimes during these episodes as if she is using all of her power in her body to deal with these spasms or gags.

She has also started throwing up mucous again.  We had a week or so of throwup-free days.  But again, it seems like she is generating so much secretion in her trach because of her cold, swallowing it before we can suction it, and then her stomach fills out, etc.

Also, it is only 1:30 am, and I have already had to suction her about 5 times tonight because she has thick mucousy secretions that are causing her to choke because they are too thick for her to swallow. (I rarely have to suction her on a normal night).

It also doesn’t help that she is still going through the Haldol withdrawals.  Tonight was her last dose…hopefully forever!

Makes me wonder if she will really get the trach out in the spring.  Is it in her best interest to do so?

Of course there is no one to really ask here.  I know more about this disease than any of her doctors.  They will be like “it could be” or even may say it is because it may look like it when it could be some other neuromuscular problem caused by her Gaucher’s.  So I feel like we are on our own to make these decisions for her.   We will cross that bridge when we get to it, I guess.

BTW, this post took me about 30 minutes to write because I ended up suctioning 9 different times.

This was just one of those days I wish I could write off…

It started with me packing Hannah up for her biweekly Cerezyme infusion.  For me, I was running on 3 hours sleep, and Hannah was cranky about 5 minutes into the 30-minute drive requiring a LOT of mommy singing “Wheels on the Bus, Ice Ice Baby, and Old McDonald”… over and over and over again.

While in the waiting room, there were two young kids (about 3 and 2 I guess), and they were fighting at the toy wall while the mother was at the window.  The little girl (about 2) started screaming at the top of her lungs.  Ear piercing, mind numbing screaming at her brother.  The mother did not flinch.  The other family that was waiting and I kept looking at each other like “Come on mom, deal with this” while nurses started pouring out the door to see what that horrific noise was.  It must have lasted at least 3 minutes, no exaggeration, before the mom came back acting like “yeah, whatever.”

It freaked Hannah out after about a minute, and we moved to the other side of the waiting room (which is not that big, mind you).

We finally get into the nursing room, and they start to do Hannah’s BP and temp.  Hannah’s infusion nurse, Mary (whom I adore) comes in and tells us that they don’t have her Cerezyme.

Apparently there was a huge ‘thing’ last week about Cigna, our new insurance company, refusing to cover Hannah’s Cerezyme treatment because she has neuronopathic Gaucher’s disease.   There were a lot of phone calls made on our behalf late last week between the infusion center and Cigna, and they finally got Cigna to agree to cover Hannah’s life-extending treatment.

I could make a whole rant on the insurance industry not wanting to cover type 2 and type 3, but I don’t feel like it right now.  Just know it is in my head.

Hannah’s infusion nurse apologized for forgetting to call me that it wasn’t there.  So we headed back home.  Another 30-minute drive with a toddler who hates being in the car for more than 10 minutes.

THEN, there was the fiasco with trying to get the process started for Medicaid to cover Hannah’s over-the-counter meds.  We have done everything we were told — get the prescription, tell the pharmacy what the plan was, etc.  CVS could not figure it out.  They said they required certain codes to process it, but Medicaid could not give out those codes.  Huh?!?

Finally, I contacted our awesome Katie Beckett case manager who offered to help straighten everything out for us.  I tell ya, she sure makes up for that horrific case manager we had in Texas!

We have to go back on Thursday for Hannah’s Cerezyme treatment now.  Better late than never.  I am so thankful that our infusion nurse didn’t give me a heads up that this was all going on last week — the stress of Hannah losing this treatment would have been a nightmare for us!

This was all done by noon.  Needless to say, I was ready to write the morning off…

We have been working on weaning Hannah off the Haldol for the past 10 days or so.  We have no removed her afternoon and morning doses, as per the neuro’s schedule, and next Friday she will be completely off it.  We have definitely noticed some effects so far, but are not sure if it is the lack of Haldol or the withdrawal from Haldol that is causing these issues.

She has been more, well, just not herself.  Not really cranky as much as just not happy, I guess.  Her sleep schedule is really messed up as well, as she is more restless than usual.  Hopefully once the Haldol is completely out of her system, we can get an idea of how she really is doing.

We did our holiday photos tonight as well.   It was a lot tougher than we had anticipated with Hannah.  Even though she was willing and happy, it was hard keeping her movements under control enough to keep her seated long enough for me to take the many, many pics.  Abby and Ethan were absolutely amazing with her and so patient.  They helped by holding her hands and arms in a way that you think they are just being loving and not helping hold her steady.

One thing Daddy and I both noticed was that in all of Hannah’s pics, her eyes were mostly crossed (strabismus).  I guess we don’t see as much in person, but when it is staring at you in multiple pictures, it feels like a knife through the heart.  The most visible symptom of Gaucher’s disease type 2 — the fixed crossed eyes.  Hannah does have it most of the time now.  Sucks.

This on top of the news that Hannah’s soul sister, Olivia, and Addy are going through incredibly difficult times now.  They both have Gaucher type 2.   I mean, we aren’t talking just rough and inconvenient situations.  Really, really tough and heartbreaking times.   I find myself constantly thinking about them.  It hurts, it really hurts and makes me very upset.   Even Daddy has been feeling the stress of their situations, and it has affected him as well.

The thing is, when I think about Olivia and Addy and their situation, I always find myself putting ourselves in that situation as that could be us with Hannah at some point.   Sooner than later, as we see how this disease is taking hold of her.

Daddy and I have had quite a few “reality check” conversations the past few days about Hannah’s condition.  Conversations parents should not have to have about their toddler children.  You know, in one respect, I feel very lucky that he and I can openly talk about what we are thinking and can share with each other, even when the conversations are ugly and scary.   But I hate, hate, hate that we are having to have these conversations, the “what happens if? what do we do if?  how do we handle blank if?”

And the worst question that kept pounding my brain — “What is next year’s family holiday picture going to look like?”

Yesterday Hannah had her Early Intervention Insight team evaluation.  Basically, it was a chance to have Hannah evaluated by a vision therapist and an adaptive technologies therapist.  They spent about 90 minutes with Hannah (who was actually awake for most of it), and we learned quite a bit already by working with them just during that period.

They did their overall assessment of Hannah’s development.  You know, I really used to dread those evaluations, but now it doesn’t seem to phase me ‘as much’ anymore.  She tested at the 12-month age level for most everything with a couple of scattered 12-18 month areas, and one 1-4 month area (yes, that is not a typo!).  I will admit that 1-4 month age development level (I even forgot what it was in) took my by surprise.

But to me those are just numbers at this point.  As I keep telling everyone, my goal is to keep her happy, pain-free, and to learn as much as she can and is willing to.   I want to keep pushing her to try new things, to learn new skills, but if they take two weeks, two years, or never happen to come, that is okay too.  We just got to keep trying — and she doesn’t seem to mind it, so why not?

We found out that Hannah really gravitates towards the red and yellow items.  We always knew about the yellow, but the red was a surprise.  She also really likes lightweight shiny metallic objects!   The vision therapist brought out some metal bowls, mixer blades (or whatever they are called), measuring spoons, and some metallic colorful sponges we had bought for her sensory bin.  She LOVED it!

The AT (adaptive technology) therapist was VERY excited that we had the iPad for her.  A lot of the therapy she is going to recommend over the next year as well as when she transitions into school is apparently going to be based on using it, especially the communicative side of things.

She brought us a big red button.  We are going to work with Hannah so that if she wants something (we are thinking the iPad because she is loving it) that she has to hit the red button, which then lets out a prerecorded “iPad”, and we give it to her.  Basically, start this way of communicating.

She also wants us to find apps that will allow us to only have maybe 2 or 4 picture choices on the screen instead of the 12 or 16 that we have found so far.  Because of Hannah’s movement disorder, it is so hard for her to isolate her hand to get to the picture she wants when there are so many in that vicinity (she usually presses 2 or 3 at a time accidentally).

This is definitely the beginning of Hannah’s transitioning into the school district in July when she turns 3.  The goal is to get her IFSP (individualized family service plan – EI) solidified and ready to go for the IEP (individualized education plan – school district)  meeting next month.  We are also meeting with the speech/feeding EI therapist in a couple of weeks, so that will be added to her plan as well.

I love the fact her therapists are so gung-ho about getting Hannah these wonderful services and especially feeling motivated to really make Hannah’s IEP unique to her needs instead of just the template special needs child.

But in the meantime, Hannah will always be my baby — whether she is at the 12-month level, 4-month level (in that one area), or if she progresses to the 18-month level…forever my baby, forever in my heart, forever making me smile.  And THAT is all that really matters to me.