Little Ladybug Hugs

I really can’t believe it’s October already.  I feel like I just announced that we’re expecting our third child and then bam I’m now 30 weeks into the pregnancy.

The past few months have been really great.  In August we went on a family road trip to the east coast.  It was a fantastic and well needed holiday.  I think I was most impressed with how well the kids did during the drive.  We were able to visit with family, made several trips to the beach, and even managed a bit of shopping in Maine.

This picture was taken at Summerville Beach – one of our favourite spots along the coastal drive down from Halifax, Nova Scotia.

Shortly after returning from our family adventure, Ladybug started her second year of school.  We were super excited to learn that she would have the same teacher as last year, my little princess adored her and I knew it would make the transition back to school an easy one.

Here is a very sleepy little bug all ready for her first day back at school.

We nearly made it 3 whole weeks before Ladybug caught her first virus.  This may not seem like a lot but last year she was out sick after only 2 weeks.  When she started preschool it was after the first week.  That right there tells me she is getting stronger.  The downside is that these crazy viruses are also becoming harder to fight off.  We managed to keep her out of the hospital this round, mostly due to being well prepared with our own suction machine, extra inhalers, and a cool mist humidifier.  Our next investment will be a nebulizer which should remove short trips to the er for Nebulizer treatments.

I’ve also now experienced the domino effect when it comes to a child getting sick. It is pretty much inevitable that siblings will also fall ill with these nasty viruses too.  My little man has been down for the count for the past week with croup and a super high fever.  Luckily I’m extremely experienced in dealing with this and we persevered through the worst of it with a lot of snuggles.  This morning his fever had broken, and although quite congested was starting to show signs of his adorable mischievous ways again.

I, (touch wood) was fighting off mild cold symptoms when Ladybug first got sick – but have managed to stay strong and healthy throughout the phlegmy, croupy epidemic.  Like I mentioned above I’m now in my 30th week of pregnancy and feel unbelievably fantastic! I’ve got less than 10 weeks to go before our newest addition arrives and as much as I’ll miss being preggers, I’m really looking forward to meeting this little one.  Now if only we could agree on a name, everything would be perfect.  We have a girls name already picked out, but suggestions for a boys name are more than welcome at this point.  🙂

This is such a monumental post for me.  It’s pretty hard to believe that 99 blog posts ago my little bug was fighting for her life in the hospital.  Starting this blog has not only been an amazing source of therapy for me, but it has also become a way to look back on all that my little girl has overcome.

Over the past few months I set aside a bit of time each night to reread all 99 of my posts starting at the very first one.  It was titled Beginnings and was published on August 23, 2010. It was basically a brief background of Ladybugs grand entrance into this world, and truly was the beginning of a whirlwind roller coaster that would soon become our next 5 years.

In this time Ladybug has grown stronger, has had less hospital stays, is beginning to use sign language to communicate with us, and has become even more of a diva then she was 5 years ago.  She also became a big sister for the first time last August.  Ladybug’s not so little, little brother now weighs the exact same as she does.  (He’ll be 1-year-old on August 1st) He is walking around like a sweet gentle giant, and loves to give Ladybug snuggles.  He is also very curious about her Mic-Key button, feeding tubes and the syringes.  The great thing is that he now understands not to chew or pull on the feeding tube extensions, and as he gets older will be blessed to have a wealth of medical knowledge under his belt when he applies for med school.  Only of course if he that’s the career he wants to pursue…..you never know.

It is an incredibly amazing feeling to watch these two little munchkins interact with each other, and although very busy at times I couldn’t be happier.

Or could I……

As I mentioned earlier Ladybug became a big sister for the 1st time last August.  Well, this coming December Ladybug will be a big sister for the 2nd time and my not so little, little man will soon be a big brother.  That’s right – our family of 4 will be a fantastic family of 5 very soon, and we are all unbelievably excited for this new addition to arrive.

Just a quick update to let everyone know that Ladybug is now home.  She’s still pretty weak but otherwise getting better everyday.  On the down side, my little Monkey and I are now fighting whatever virus caused Ladybugs pneumonia.  It breaks my heart because I know how crappy I feel, and it must be a million times worse for the little ones.  At the very least we can all recover in the comfort of our own home.

Now I just need to get better so I can stock up on bleach and disinfect this entire germ infested house.

On Friday morning Ladybug was admitted to the local children’s hospital. She had been battling a bad chest cold for nearly a week and it just kept getting worse. She had a high fever that wouldn’t go away and a very high heart rate. Some how she ended up with pneumonia and was given a cocktail of antibiotics. 

Sunday – I wanted to thank you for all the prayers and positive thoughts. The antibiotics finally have Ladybugs fever under control, and her heart rate is back down to normal. On top of the pneumonia she now has an ear infection and between the two is in a lot of pain. On the bright side she was smiling today when I suctioned her dribbles. It is now a game to see how fast she can chew the tube. 😀

Monday – At around 02:00 she had a coughing fit and couldn’t breath. This obviously freaked her out which made her cough even more. It was a vicious cycle. The RT (respiratory therapist) came in and gave epinephrine and saline via a Nebulizer. You could instantly see and hear it working. She fell back asleep and was smiling. So nice to know she’s having sweet dreams. 

This afternoon she transitioned from pedialyte to formula. Providing she tolerates the feed, doesn’t aspirate, and her blood work is clear she might get to go home in a few days. Fingers and toes crossed. 

It is not only hard seeing my princess so sick and in the hospital, it’s also tough to be away from my little monkey. I’m sure he misses his big sis and mama too. I do however have complete solace in knowing that Daddy-o is doing a fantastic job holding down the fort while we’re here. 

We’re definitely a great team. 

A few weeks ago we finally got Ladybugs 48 hour EEG results.  It was a lot to digest, and I wanted to try to understand as best I could before I gave everyone the update.

Ladybug’s neurologist personally called me to give me the results, explain them, and answer any questions I had.  It’s these small gestures that remind how fortunate we are to have such a great team of specialists looking after my little princess.

The Coles notes version of the EEG result is that Ladybug has a very rare and severe form of epilepsy known as Lennox-Gastaut Syndrome.  Basically it consists of numerous different types of seizures that are extremely difficult to control and for the most part drug resistant.

Two of the many types of seizures that they were able to catch were Myoclonic which I’ve mentioned before and auditory triggered seizures.  The auditory triggered seizures were particularly upsetting for me.  In hind sight she’s been having these for quite a long time and we didn’t know they were seizures.  Ladybug typically startles when she hears a loud noise, however this past year she zones out for a few seconds afterwards.  During the EEG the door on our hospital room would make a horrendous loud bang every time it opened and closed which would trigger these episodes.  Just for my own peace of mind I pushed the button and made a note of the time and what happened.  I’m so glad I did because they were indeed seizures.

With the new diagnosis of Lennox-Gastaut Syndrome, our original treatment plan of the Ketogenic Diet has been put on the back burner.  Ladybug will be starting a new med which is known for helping LGS.  Like all seizure meds it is hit and miss, however we’ll never know if we don’t try.  We will start Ladybug on Banzel (Rufinamide) next week slowly increasing her dosage week by week, while at the same time slowly weaning her off the Keppra.

With the help of social media I’ve found several different LGS groups who have been extremely supportive and are always there to answer any questions I’ve had thus far.  I’m very hopeful that we will find some form of treatment for the Lennox-Gastaut Syndrome that works for Ladybug. It would be really nice if the new meds work – but, if they don’t I just keep looking and exploring different avenues. Just as I planned to do before.

On a brighter note –  Ladybug will be finishing her first year of big girl school in 2 weeks.  I’m already trying to find fun activities to keep her occupied this summer.  We’re planning a huge road trip in August so that will be an adventure on its own.  Ladybug’s not so little brother is now 10 months old.  He has 5 teeth and counting, is standing up on his own, and I’m sure will be walking unassisted in no time.  It’s certainly a busy house and I absolutely LOVE every single second of it.

Two years ago today March 26, 2013 was the first official Purple Day.

For those of you who aren’t familiar with Purple Day, it was created by a young girl – Cassidy Megan from Nova Scotia, Canada in 2008. Cassidy created the idea of Purple Day to share her own struggles with seizures and to get people talking about epilepsy.

You can check out my first blog post about Purple Day here.

This was Ladybug 2 years ago wearing her purple outfit to support epilepsy awareness.

Epilepsy awareness day comes at an interesting time for us, as Ladybug will be admitted into the children’s hospital on Monday for a 24hr-72hr EEG.  The neurologist requested this for several reasons.  The first being the night terrors.  They have been getting worse and are having a negative effect on Ladybugs day-to-day routine.  Neuro wants to rule out any possible seizure activity during these night terrors.  The second reason is to get a longer look at her Hypsarrhythmia patterns.  She has had this chaotic activity on her EEG’s since she was a newborn. To quote the neurologist when we were discussing the latest EEG, “It’s really bad.”

After our last neurology appointment, I began to research alternative treatments for Hypsarrythmia.  The longer a child has this activity, the more damage it can do.  Just like the night terrors I am open to every form of treatment for the Hypsarrythmia. We’ve already tried increasing and stacking on strong meds, neither have done a single thing to help in the past.  I talked with several other moms and two forms of treatment seemed to prove the most effective.  A Ketogenic diet and CBD Oil. The CBD Oil will be an entire blog post on its own.  Once we receive the detailed results of the EEG, and we get the go ahead, Ladybug will again be admitted into the hospital and begin the transition to a Ketogenic Diet.  The entire process is incredibly in-depth, there are a lot of tests and constant monitoring initially which is why it’s best to be done in-patient.  I’ll keep everyone posted once I know more.  If the hospital gods are shining down on us, everything will be done next week which will prevent a second admission in a couple of weeks.  We’ll see.

My sleepy Ladybug wearing purple today. Check out the new Hot Pink Sparkle wheels!!!
(It’s obviously far too early in the day for pictures for this princess. I received several dramatic sighs as I was taking this. )