September 28, 2024

 So, this will probably be my final update.  Also, it will talk of the passing of Katharina and the steps she went through so if you don't want to read about that, please feel free to skip this entry.

On Sunday Katha's specialist stopped by to check on Katha.  He said her heart was steady but weak and he was afraid that she would start having seizures.  He wanted to make sure we had medication if that happened.  He also felt like we had a few days to a few weeks left.  Definitely not a month.

After he left Amory's parents and niece came to stay a few days and say goodbye to Katha.  Rosie, who is 2 years old was very interested in Katha and why she slept all the time but we tried to keep her out of Katha's room as much as possible.

Katha's eyes were very dry because of the dehydration, so Amory ran out to get eye drops and we applied them and they seemed much better.  Also, her lips were very dry so we would take the sponges on a lollipop stick and put apple juice or water around her lips.  

On Monday we got something for Katha's lips because she hadn't drank anything in days and was so dehydrated.  Anytime I tried to put something on her lips she would open her mouth as if she wanted to drink it.  So, thinking I could moisten her tongue as well, I put the sponge into her mouth and she chomped down on it.  My first instinct was to pull it out but I ended up with just the stick, the sponge was still in her mouth!  I got her mouth open and I tried to sweep her mouth like I had been taught when she was choking.  But, she clamped down on my finger and almost took the tip of it! She was definitely still fighting.

On Monday afternoon, I ran out to get Jay from volleyball practice and get a couple things from the drug store.

When I got home, we had a house full of visitors.  One of whom was an old homecare worker of Katha's.  She had the best stories of Katha and definitely brought a lot of cheer into the home.

After everyone left and the in-laws and I were about to go to bed, Katha started breathing funny and was no longer responding at all.

Her breaths came out in little puffs, and when I called Amory in, he rested his hand on her stomach and could feel her heart beat, strong and fast.  In fact, when we pulled back her covers, you could even see her heartbeat.

I immediately called my mom and told her that I thought that Katha could pass away in the night.  She started getting ready to come over.  

Less than an hour later, I noticed a dear friend who has helped me so much was up (she is a nurse and a mom of a kid with special needs, not to mention an angel on earth!) and I asked her if I should call homecare. She said she was driving by and would drop in.

She came in, took one look at Katha and told us she is entering the final stages of life.  She then proceeded to tell me what I could expect step by step as Katha's time came to a close.  

When mom got there we sat for a few hours with Katha and she started slightly responding again.  Because Katha doesn't know the meaning of the word quit, mom said she would stay up with her while I got a couple of hours of sleep.

I slept until 7 the next morning and went and checked on Katha.  When I left her breathing was very loud and when I came back you could hardly hear it.  I told the boys that I didn't think Katha would make it through the day and that they were welcome to stay home.  They both chose to go to school.

As the day went on, Katha's breathing got more and more quiet and shallow as well as her heartbeat got slower.

I tried to move Katha legs into a more comfortable position but she was too close to the end of the bed so I asked Amory to move her up in the bed.  

After he did, a couple minutes later, she started gulping air, which we were told would be one of the final steps before she left us.  I got my mom to quickly call my sister and my niece who wanted to be there and Amory called the boys to come home and Amory's dad went to pick them up.

Then, with Amory, my mother and I all surrounding her and loving her, she winced a few times and was gone.

My sister came in a few minutes later, followed by my niece a few minutes after that.

Dom and Jay came and saw her but didn't really feel comfortable so they went downstairs pretty quickly.

A nurse came and confirmed she was gone, then the funeral home came and took her body.

It's hard to remember everything, and I'm sure I've missed several details, but that is pretty much Katha's last moments.

I just want to thank everyone for their outpouring of love.  We never truly realized the community we have behind us and we have been so touched.

Life without taking care of Katha is going to be a huge adjustment.  Amory and I keep catching one another going to check on her.

We are so thankful she is in a place where she will be able to laugh, sing, shake her booty and tell stories again.

We have a funeral mass planned for November 1st at 1 PM at St. Mary's Church and a celebration of life planned for 3:30 PM at Alix Hall.  If you can make it, we would love for you to join us. This may still change but it is the tentative plan.

Thank you again to everyone for all the love, prayers and hugs that have been sent our way.  It is very humbling.

Sending my love to you all, and in Katha's language "Na-Foo" which she said instead of I love you because it was the sound of blowing a kiss.

September 22, 2024

 Hi Everyone!

I didn't expect to update so soon, but things are happening fast now.

Last Monday I contacted Katha's specialist.  I told them how little she is eating and drinking.  They recommended that I take her back to ER with a letter from them explaining the situation.  I informed them that we would like Katha to pass at home.  So, they sent an urgent referral for a palliative team to come to our home.  They were also worried that Katha wouldn't make it through the night.

I had some friends come over that night and while we were talking Katha tried to get out of bed and walk.  She took a pretty nasty spill but didn't react at all.  There was no crying or yelling, she just sat there and waited for us to pick her up.  That was the first time I believed she wasn't in pain at all.

On Tuesday the palliative team came in.  They gave us a bunch of information but couldn't do much for us.  The most important thing they did was make it legal for Katha to pass at home and for us to be able to contact a funeral home rather than EMS when she does pass.

On Wednesday we found a funeral home that we liked and contacted them and they are on call for when Katha passes.  We also called a priest to do her last rites.  Katha was sitting at the table when the priest came in with food sitting in front of her.  So, when we started we took all the food and the drink away as well as taking off her bib.  When we bowed our heads to pray she pulled a piece of bacon out!  I spent the rest of this time that should have been very sad trying not to burst out laughing.  It was just so Katha. However, she started gagging at just the thought of eating.  She would put food up to her lips and gag without ever putting anything in her mouth.

The aide Katha had for years in school also came on Wednesday for a visit.  As soon as she went into Katha's room, Katha's eyes lit up and she immediately put her arms out for a hug!  Katha giving an uninitiated hug is unheard of, I cried.

On Thursday Katha tried to walk again so we had to put the rail back on her bed to make sure she stays in it!

On Friday we had some sippy cups that Katha can use in her bed delivered so she can just constantly suck on the sippy cup because she hadn't drank in a couple days.  We also decided to stop giving her insulin at all.

Saturday I was pretty scared would be her last day because she hadn't drank anything and her blood sugar was getting really low.  It occurred to me that if she has a low, there is no way for us to get any sugar into her.  Jay also had his first high school volleyball tournament and I wanted to be there for her.

Saturday morning her blood sugar was at 10 (normal is between 4 and 8) and I could watch her on video so I decided to go to the tournament and she was fine all day.  In fact, she drank two glasses of water (which totaled about 8 oz. of water)!  I still called her doctor for advice on whether or not we should give her medicine if her sugar gets low.  He advised that we should simply because watching her having seizures would be harder on us than it needs to be.

We tried giving her chocolate milk in her sippy cup just to help keep her blood sugars up and she refused to drink it.

Last night her glucose alarm went off at 5 in the morning and I jumped out of bed to see what was wrong.  She was having a high and was at 15!  Then, when I woke up at 8:30, I went to check on her and she was at 22.

What I have learned over the past week is that Katha survivors instinct is strong.  We have to watch her like a hawk.  I have had to tell her to get back into bed several times.  She smiles at me when she does something that she would get in trouble for normally.

I have decided to write down some of her progress in the same manner I wrote her symptoms.  This part may be a lot harder to read so please feel free to stop reading here.

Weight:  Katha has lost about 100 pounds now.  Her bones protrude and the port that we use to have to search for now sticks out and you can see the entire thing.

Lips: Katha's lips are so dry they are bleeding.  My friend gave us some ideas how to keep them moisturized so that she can be more comfortable

Skin: Katha bruises so easily.  I'm scared when changing her because the slightest touch causes bruising.  She also get sores really easily.  The skin on her feet was peeling off but the nurse told me to put some vaseline and socks and her feet and that cleared it right up.  Her pressure ulcer had healed really well.

Eyes:  Her eyes are blood shot and dry.  She keeps having goop come out of them.  They have also sunken in quite a bit.

Breathing: Katha's breathing is very shallow.  I often have a hard time telling if she is still breathing

Comprehension:  Katha is with it.  She still understands what is happening around her even if she can't communicate at all.  She still tries to help me while I change her.

Fingernails: Her nail beds are just a little bit blue.

I can't think of anything else for now but will add more next time if I do.

September 15, 2024

 So, when I first started this blog it was because I had a lot of questions after Katha was diagnosed.  I went to the internet for answers.  My biggest question was what is our journey going to look like?

What I found was a lot of medical sites but not a lot of personal experiences.  So, I figured I would start a blog that could keep all of my loved ones updated while hopefully giving another parent some answers they were looking for.

Mostly, I wanted to know what the end is going to look like.

Well, in this latest update, we're experiencing what I wanted to know about at the beginning.

For months now, Katha has not been eating or drinking a lot.  Currently, she has a couple of bites of food a day, if any food at all.  She also has about 10 oz. of fluid.

Katha's weight has dropped significantly.  At Katha's highest weight she was just over 200 pounds.  Currently, Amory and I guess she's around 120 pounds.  Her bones are sticking out and I can lift her again.

I believe Katha's blood platelets are low causing her to bleed and bruise easily.  

She is getting pressure ulcers from the way she sits.  We went to the hospital for this a couple weeks ago because I was worried it was infected.  It wasn't and the doctor informed us that it would heal by itself.

Katha is tired all of the time.  She still gets out of bed every single day.  Mostly, I think because she is too stubborn to stay in bed.  She gets up between 1 and 4, usually, falling asleep at the table by 8 and can be convinced to go to bed around 10.

She has also started to have absence seizures.  When most people think of seizures, they think of falling on the floor and flopping around.  That's not what happens to Katha.  She spaces out and it looks just like when anyone spaces out.  However, when you call her name and touch her, she doesn't "come back".  It usually lasts 2 or 3 minutes.  One night, while I was putting her to bed, she had an absence seizure and I noticed I couldn't hear her breathe.  So, I put my ear to her chest and I still couldn't hear her breathe.  As I lifted my head she started breathing again and looking around, then she fell asleep.  I was so worried she wouldn't be breathing the next morning but she continues to be the warrior princess I know her to be.

Dom and I were discussing Katha and he was saying he just wants one more Christmas with her.  I'm not convinced she will make it to Christmas so, this weekend, we are going to set up the tree.  I figured, why wait?

I don't know when I'll be able to update next, it's emotionally difficult right now but I do want to record this as it happens so that I remember everything.  I also know, it's awkward to know what to say during a time like this so I have a request.  Please, feel free to message me on facebook with some memories you have of Katha or favorite stories of her or a way she has touched your life.  I'm finding myself very sentimental and it's helping to remember the good times.

Thank you everyone for your continued support I truly love and appreciate all of you.  Onto the symptoms:

Enlarged liver and spleen: They are large but not overly.

Dysphagia:  I believe this is part of the reason Katha doesn't eat.  She chokes on everything, and badly.  It freaks people out when they are around her.  I think she's partially scared to eat because the choking is so bad.

Basal Ganglia (holding limbs in awkward positions): Whenever I wash Katha's hand I have to pull them straight and it's stiff and sore.  

Dementia:  Katha shows a lot of signs of dementia now.  About a month ago she was sitting on the toilet watching me go about my business.  I looked at her and suddenly a look of recognition came across her face.  I believe that she actually forgot who I was for a minutes.  But, being completely non-verbal now, it's hard to know for sure.

Seizures: As stated above, Katha has absence seizures.  The frequency, I would say, is every few days.  Which, for a person who has seizures is still quite rarely.

Gelatstic Cataplexy (falling down in response to a large emotional outburst): When Katha passes out now, it lasts about 45 to 60 seconds.  Her breathing can get really shallow during these spells.  

Sleep related disorders:  Katha sleeps on and off most the time.  She always seems tired but refuses to stay in bed.

Hearing Loss: I haven't noticed any significant change but again, with her being non-verbal, it's difficult to assess this.

Diabetes:  Katha has been on 2 types of insulin since her diabetes diagnosis.  Fast acting insulin is for when she eating and helps control her blood sugar quickly.  Long lasting is for keeping her blood sugar stable consistently.  Katha hasn't had any fast-acting insulin in a few days.  We also try to keep her blood sugar slightly high because we often can't get her to eat or drink anything and lows can be quite dangerous.

January 26, 2024

 Hello, folks!  It's only been 3 years since I last updated.  I am so sorry for those who have been wondering how Katha has been.

Katha has been doing spectacular!  She has deteriorated, she has almost no weight baring abilities at all anymore and she is almost completely non-verbal.  In fact, I have said in the past that she is the most communicative non-verbal person you'll ever meet.

We usually have to communicate with by giving her two options and holding out a hand when giving her options.  Then, she will pick a hand.  For example we will say "Katha, do you want to watch netflix (and put our left hand in front of her face) or Disney (and put our right hand in front of her face).  Then she will touch either our left or right hand.

She also will still say things but only when she's really upset and it usually is just a yes or a no.

Katha spends all of her time in bed or at the kitchen table watching shows (most of the time The Little Mermaid in every form it comes in).  When we leave the house she almost immediately falls asleep in the van and is very tired the next day.  So, we try to limit outings to essential appointments.

For the past 2 months Katha hasn't eaten more than a meal a day.  In fact, 3 days ago she ate the same plate of food for 13 hours.  She likes to graze the food we give her and would rather drink most of her nutrition in the form of chocolate milk.  The last time I updated the blog we had decided to not have a g-tube put in (which would be a tube directly to her stomach that we would put formula in).  We wanted her to be able to enjoy whatever time she has left.  

Because she has been doing so well but has seemingly lost interest in food, we spoke with her doctor about re-visiting the idea of putting in a g-tube.  He said that because she has definitely deteriorated (she has a hard time holding up her own head now) that no surgeon would be willing to do the procedure to put in the g-tube anymore.  It was honestly a relief to hear this because it took the decision out of our hands.

As I briefly mentioned above Katha is having some trouble holding up her head.  We are waiting for a new wheelchair that has the ability to tilt and with a head support.  This would not only shift her weight in her chair so that she does not get bed sores but would help with her having to hold her own head all the time.

We have also been through several home care workers now.  In fact, we haven't had any kind of in home support since August.  We have a new worker coming on Monday, so we are very excited about that.  Well, I am.  Katha isn't great with strangers, hopefully she'll like this one.

Other than that Katha is doing really well, she still chokes a lot so we have to look out for her aspirating which could cause pneumonia which the doctor is worried she wouldn't recover from but all of her organs are still in really good condition.  Also, she can still move her limbs fairly freely rather than them being stiff which for how progressed her disease is is amazing.

 She still eats by herself and mostly refuses to let anyone help.  She tries very hard to be as independent as possible.

 Since I last updated Katha turned 18 (almost 19 now!) so, technically, she did it.  She survived a fatal childhood disease.  We are so blessed to have her and all of her Kathatude.

 Onto the symptoms:

Enlarged Liver and Spleen: They are still large but are not to the point that they are troublesome.

Dysphagia (trouble swallowing):  It's bad, she chokes several times a day but is always able to recover herself.  She scares other people but we as a family have a gotten used to it.

Basal Ganglia (holding limbs in awkward positions): Katha has almost no small motor skills anymore.  She cannot walk and her feet turn in.  Her legs get tangled and her feet hurt to stand on.

Dementia (memory loss): Katha doesn't have much use for memory.  The other day she was having a really good day and said she wanted to go outside (it was -50 degrees out) I said she was crazy and it was too cold.  She replied that she was cold and I asked if she meant she was hungry and she said yes.  So, I think if she could communicate more clearly that the dementia would be quite advanced.

Seizures:  Katha did have one seizure last year.  It lasted 15 minutes which for a seizure is a really long time.  We went to see a neurologist who told us it was a focal seizure and not something we really had to worry about.  She has not had any other seizures since then so it is being viewed as a fluke.

Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens every time Katha finds something funny.  In fact, she doesn't even usually have time to laugh before it happens anymore.  Now it looks like she faints for 10 to 30 seconds and then regains consciousness.  It is also not unusual for her to stop breathing for these episodes so we try not to trigger them to often but it can be difficult.  She is a very funny girl and she finds her mom quite hilarious!

Sleep related disorders: Katha still has weird sleep schedules.  Right now, she usually goes to bed between midnight and 3 AM then doesn't get up until 11 to 1 PM.  During the night she will wake several times, turn on her tv and then go back to sleep. We still encourage Katha to sleep as much as possible to avoid seizures.

Hearing Loss: It is still hard to believe that Katha has any hearing loss because quite often she will tell a silent room to be quiet.

Diabetes:  Katha has type one diabetes which can be quite difficult to control.  We have an endocrinologist who is very strict.  Katha has never showed any symptoms with high or low blood sugar and would often have lows during the night that didn't seem to affect her at all.  The new endocrinologist was quite worried about these lows so we have to make sure Katha goes to bed with high blood sugar to guarantee she won't have any lows before she's ready to get up.  

April 15, 2021

 So, today we had Katha's yearly check up.  As expected, we decided it was best to stop her medications.  The only medication she has now is her fast acting and long lasting insulin
plus an anti-nausea medication for her vertigo which she rarely takes.

The doctor wanted to know what we wanted to do if Katha starts having seizures.  He helped us decide that we only wanted to make her comfortable if that happens.  We pray that she will remain seizure free her whole life but she is deteriorating and it is a distinct possibility.  

He mentioned that he doesn't think that seizures will be a life ending incident but pneumonia from her choking. 

Speaking of choking, Katha now chokes at every meal, sometimes to the point of vomiting.  However, she is still able to eat unassisted and that includes assistance when choking.

Katha is no longer able to walk at all, she trips over her own feet.  If she has aid (either holding on to something or someone) she is able to stand by herself but can no longer move forward.

She also sleeps approximately 18 hours a day, waking only to eat, then go back to bed.

But, as the doctor said today, she's happy.  She sings, she laughs, she bosses her brothers around.  She's happy and that is our only goal anymore.  Although it's harder to understand her, she seems very content.

Onto the symptoms:

Enlarged liver and spleen: Apparently, they are quite large but the doctor doesn't seem concerned about this anymore.

Dysphagia (trouble swallowing): Getting worse and will continue that way.  The doctor figures she already aspirating into her lungs, it just a matter of time before she starts getting pneumonia

 Basal Ganglia (holding limbs at awkward positions):  Katha can no longer walk and has a hard time holding things because of the awkward position of her feet and hands.

Dementia (memory loss): Katha keep reverting.  She likes movies and shows she liked years ago.  She has trouble remembering much but there isn't much she needs to remember.

Seizures:  She still hasn't had a seizure.  We hope that this continues.

Gelastic Cataplexy (falling down in response to a large emotional outburst):  The doctor offered us medication to help control this.  We decided against it.  As long as we're careful to let her breathe when she has these episodes they don't seem to bother her.  Just like everything else, she has just learned to deal with it, because she's amazing like that.

February 13, 2021

 So, a lot has happened in the last few months.

We decided not to get a g-tube for Katha and just let her enjoy the time she has left.  Since the government doesn't know yet that Katha has deteriorated, they have not cut her off of her medication, Zavesca.  There is a good chance they will still cut us off in March when she has her yearly check-up and have to renew her prescription for it.

Then, a few weeks ago the drug company of Katha's other drug (VTS-270) announced that the risk to reward ratio is not good enough for this drug so are discontinuing the drug.  We have until October before they cut us off completely.  This is the drug that Katha gets put in her spine every other week.

So, after discussing it, Amory and I decided to take Katha off the VTS-270 immediately.  Katha was so happy she is doing better than she has in months.  As you can imagine, it is a very invasive procedure and she is very relieved to be done them.  When discussing this with the doctor he mentioned that because it's Katha's lungs that are the only organ essentially failing at this time, there is a good chance that this could stretch on for years.  Also, he doesn't expect that there will be a huge deterioration coming off of the medication but there will be a gradual deterioration the longer she is off of it. But when considering Katha's quality of life, we still felt this was the best option for us.

 She also was able to receive a hospital bed from AADL.  When the OT was coming to assess our needs she broke down saying she didn't want a new bed.  In usual Katha fashion, she wasn't taking well to change.  Well, the day after we told her she wasn't going to get anymore needles in her back, the bed was delivered.  

 I was expecting that we would have to fight her for a couple weeks about the bed.  In fact, before the bed was delivered, I refused to take apart her old bed frame just in case she refused to use the hospital bed. 

 Well, after it was set up I went to show it to her.  She immediately wanted to get into it and refused to get out until supper time!  The next day she woke up early and refused to get out until food was a must.  Then, after lunch, she decided she needed to lay down until supper time which is not part of her usual routine.  It's amazing and she just loves HER hospital bed.

 Onto the symptoms:

Enlarged liver and spleen: The same as far as I know. We will have an ultrasound in March that will let us know for sure.

Dysphagia (trouble swallowing):Getting a lot worse.  She now chokes at every meal but is able to get it up without assistance.  She also has begun choking at night, which means she having trouble swallowing her own saliva.  We are hoping the inclined hospital bed will help with this as well as helping her sit up.

Basal Ganglia (holding limbs at awkward positions):Katha is having a very hard time walking.  Walking more than 20 feet is impossible for Katha now.  She also trips over her own feet a lot.  We only walk her from bed to the bathroom each morning because usually she's so wet that she would immediately soak her wheelchair.  She also stands up to transfer to and from the wheelchair.

Dementia (memory loss):This is about the same, she knows her family but not really anyone else.  

Seizures:  She still hasn't had a seizure.  We hope that this continues.

Gelastic Cataplexy (falling down in response to a large emotional outburst): We have to be very careful when we make Katha laugh now because she will quit breathing almost every time she does this. Often, Amory and I will just be interacting with each other and she will find something funny and "pass out" coming to with a gasping breath.  

Sleep related disorders:  Katha only stays up for about 6 hours at a time and can sleep up to 30 hours.  But generally she sleeps for 12 hours and is awake for 6to 8 hours.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Honestly, she has this but it rarely impacts her anymore.

Hearing Loss: She will probably have a hearing test in March which will tell us if hers has gotten any worse.

 

October 6, 2020

 So, in June, Amory finally got laid off.  He lasted longer than most and we were very thankful for that.  He tried to do dry-walling for a while but it was ultimately not a good fit for him.  So, at the end of June I got a job as a COVID screener/greeter at a Seniors Lodge in Lacombe.  I love it and it's been an amazing experience.  The people and the job itself is exactly up my alley and I have really been enjoying being able to get out everyday.

However, we did notice around this time Katha had started to decline.  We noticed in July that she started choking on solid foods.  I mentioned to her doctor at one of her procedures that she had started choking on solids.  He was immediately concerned and told us that if she is choking on solid foods, that was a significant sign of progression in her disease.  We needed a swallow test immediately which, if showed she was choking significantly, she would need a G-tube.  Even with a G-tube her life expectancy would be months rather than the years we had discussed back in March.

A G-tube is a tube that would be surgically implanted into her stomach and we would feed her formula through a bag into her port.  We feel that this would really be a bad thing to happen to Katha because she loves to eat and it is a huge motivation for her to keep fighting on this path she been on for her entire life.

So, we had the swallow assessment done and when I was in the room with them, the first time the technicians saw her swallow on the floroscopy, they all gasped.  So, I figured it wasn't good news.  As we were leaving the test (which took 15 minutes instead of the hour it usually does) they told me that the doctor should be able to give us the results later that afternoon.

The test results weren't in until the next day and they were worse than expected.  Katha can no longer simply swallow any consistency of food.  Everything gets stuck in her throat and the only reason she hasn't already asphyxiated is because of her voice box and they don't know how long it will be able to keep her from asphyxiating.  

Basically, they told us it was a miracle that she hasn't asphyxiated already, that she probably will soon and that they need to put in a G-tube as soon as possible.  

Even with the G-tube, Katha still has to swallow her saliva and she gets sick a lot at night.  We have been told that she is now medically terminal (which generally means less than 6 months).

As you can imagine, this has been a huge blow for the family.  We are just enjoying our time that we have left with her and being thankful for having so many more years than the doctors had originally thought. We will be putting in a G-tube so that we have to worry less about choking but know our time is short.

We will try to keep the blog updated as much as possible but it may get difficult in the coming months. 

Please keep Katha in your prayers.  

Now the symptoms:

Enlarged liver and spleen: The same as far as I know. We had an ultrasound but heard nothing from it and usually no news is good news.

Dysphagia (trouble swallowing): Obviously, bad.  Katha has been choking at least once a meal, we are just waiting for her to start asphyxiating.

Basal Ganglia (holding limbs at awkward positions): Katha has a hard time with washing her hands or anything where she has to hold her hands straight.  She also can't straighten her legs or her ankles anymore.

Dementia (memory loss): Katha doesn't know the days of the week, the month or even the year.  She knows her family, but doesn't really pay attention to anyone else to remember them.

Seizures:  Still none

Gelastic Cataplexy (falling down in response to a large emotional outburst):  Katha still "passes out" when laughing.  If she does this too many times in a row she will stop breathing as well as seem very confused when she regains consciousness.

Sleep related disorders: Katha will sleep for 30 hours then be awake for 30 hours.  There is no way to regulate her sleeping.  We just try not to have to wake her up very often.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):  This comes and goes.  She can sometimes look up a little but not very much.  Sometimes she can't look up at all.

Hearing Loss: Katha still refuses to wear her hearing aids but doesn't seem to have trouble hearing us when we are talking about procedures.  She will immediately start crying, even if she isn't anywhere near us.