So, we've had a couple of appointments in the last couple weeks. The first one was not fun. It was the appointment with the ophthalmologist. It would have been no big deal, but they had to lean Katha's head back to put drops in her eyes to get them to dilate.
For those of you who don't know, Katha can't look up. For some reason tilting her head back causes her to go into a panic attack. So, at first the nurse and I tried leaning her chair back and that didn't work. So, then we tried laying her on the floor but she didn't like that either. Finally we laid her down on the chairs with her head in my lap.
We ended up holding her down while she kicked and screamed and had a look of sheer terror on her face. All the while she was screaming "I want my mommy" while I'm trying to hold her down.
After we had finally got some drops into her eyes we were told to go back out into the waiting room to wait for the drops to take effect. While we were waiting I realised that Katha had bit into her lip so hard that she was actually bleeding. Once I realised this I broke down in the middle of the waiting room. Luckily, they were having a pre Stampede parade parade for the kids at the hospital and it was going by the windows in the waiting room. Everyone was so pre-occupied with that that I was able to have myself a little cry while everyone was watching the parade.
Once we got all that done the doctor told me that Katha's eyesight has gotten slightly worse but nothing bad. Also, there is some damage done to her ocular nerve which is the reason her eye movements are so slow. She also said there is nothing they can do for that. However, they want to see her again in October when the school can voice their concerns for Katha's eyesight as well. The doctor also recommended we get an I-Pad so we can enlarge it or put it up to where Katha can see it for school.
The other appointment we had was a physio assessment. That went really well because it was basically an adult playing with Katha. She loved it. They let me know to keep her active as much as possible, gave me a few exercises that we can do with her and told me that she is very good at knowing her own limits, but don't be afraid to push her a little. They also probably won't be able to get her into their regular cycle until after school starts.
Other than that we have just been enjoying summer. We had a trip out to Manitoba to see Amory's dad, Don and we will be going to Montana next month. We are very excited for that trip!
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is running more, which is nice to see. She doesn't fall down too much but is still has a very heavy walk.
Dysarthria (slurred speech): I find most of the time people need me to help them understand Katha. Even with myself I get one or two words and can figure out from there what she is trying to say.
Dysphagia (trouble swallowing): Katha is choking more on water and other liquids. We should hopefully be hearing from Occupational therapy in the next few months so that we can get a swallowing assessment done.
Basal Ganglia (holding limbs at awkward positions): I haven't noticed a lot of this lately, although she has started turning in her feet almost all of the time.
Dementia (memory loss): I find Katha forgets things fairly quickly now. When we go out to a restaurant and she has to go to the bathroom, by the time we get out of the bathroom she will have completely forgotten where we were sitting. She also forgets people she's only met once or twice or hasn't seen in a long time pretty quickly as well.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): We are always looking out for this. It still happens mostly when she is tired.
Sleep related disorders: She still has a hard time going to sleep. Although, she tends to be able to wake up not to badly.
Sensitivity to touch: I haven't noticed any signs of her being sensitive to touch in the last few weeks.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Some days are better and some days are worse. However, even on her good days she can't look up as high as someone normally would.
Sunday, 21 July 2013
Sunday, 30 June 2013
June 30, 2013
We had an appointment with Katha's neurologist on Thursday. Katha was having a bad day and was finally able to show the neurologist her Cataplexy. However, she also looked up really well. The neurologist was extremely pleased with Katha's progress since starting the medication. She is walking better, even her reflexes are better. She said that she believes that mentally Katha is stable and she doesn't need to see us for a year.
The bad news is that she is transferring hospitals and is not allowed to take any patients with her. Which means, that by the time we go back (as long as there continues to be no seizures) we will have a different neurologist. The reason this is bad news is this is the one doctor Katha would be excited to go see. I hope her new doctor will be as awesome as this one was.
Katha has finished school for the year along with Dominik. On Wednesday Katha and I went on her field trip. She had a lot of fun, but is definitely excited to be done school.
She has also been getting up really early and not going to sleep again until late. I thought this was straightening itself out as insomnia is a side effect of the medication like lactose intolerance which has been going away slowly but surely.
Katha is able to eat pizza again, along with pancakes and bagels. She is a very happy girl. I would like to try ice cream, but am a little worried on how her stomach would react. However, if we could do this, she wouldn't really have any eating restrictions anymore. It would make her very happy.
We leave for Manitoba on Friday or Saturday. Last year right after we got back from Manitoba was when they started testing for NPC. It will be the first time Don and Patty have seen her since she was diagnosed. We usually would let them come here this year, but we figure this will probably be the last time Katha will be able to make such a long trip, so we'd better do it while she still can.
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is still Katha. She falls down, and she gets back up. Her walk, I don't think, will ever be normal, but she makes do.
Dysarthria (slurred speech): Katha has good days and bad days. Sometimes, people seem to understand her, other times I have to translate for her.
Dysphagia (trouble swallowing): She still chokes on water. She has an appointment in mid-July with the people who will be doing a swallowing assessment.
Basal Ganglia (holding limbs at awkward positions): She still does this and still, unless your looking for it, I don't think you would ever notice it.
Dementia (memory loss): Same. We're continuing to play memory games, but her memory will still slip a lot.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens quite a bit, especially when she is tired.
Sleep related disorders: Like I said before, she has trouble going to sleep and is often up early
Sensitivity to touch: Katha doesn't show much signs of this other than the puppy. His general fluffiness doesn't sit well with Katha, but she does try. She still likes to cuddle Oreo if he is wrapped up in a towel or something.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing fairly well with this. She looked up at an air balloon the other day and said there was two of them. So, even when she can look up, she sees double. She FINALLY has an opthamologist appointment in July.
Hearing: I still wonder if she has sensitive hearing. When I get the opportunity I will have this tested.
The bad news is that she is transferring hospitals and is not allowed to take any patients with her. Which means, that by the time we go back (as long as there continues to be no seizures) we will have a different neurologist. The reason this is bad news is this is the one doctor Katha would be excited to go see. I hope her new doctor will be as awesome as this one was.
Katha has finished school for the year along with Dominik. On Wednesday Katha and I went on her field trip. She had a lot of fun, but is definitely excited to be done school.
She has also been getting up really early and not going to sleep again until late. I thought this was straightening itself out as insomnia is a side effect of the medication like lactose intolerance which has been going away slowly but surely.
Katha is able to eat pizza again, along with pancakes and bagels. She is a very happy girl. I would like to try ice cream, but am a little worried on how her stomach would react. However, if we could do this, she wouldn't really have any eating restrictions anymore. It would make her very happy.
We leave for Manitoba on Friday or Saturday. Last year right after we got back from Manitoba was when they started testing for NPC. It will be the first time Don and Patty have seen her since she was diagnosed. We usually would let them come here this year, but we figure this will probably be the last time Katha will be able to make such a long trip, so we'd better do it while she still can.
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is still Katha. She falls down, and she gets back up. Her walk, I don't think, will ever be normal, but she makes do.
Dysarthria (slurred speech): Katha has good days and bad days. Sometimes, people seem to understand her, other times I have to translate for her.
Dysphagia (trouble swallowing): She still chokes on water. She has an appointment in mid-July with the people who will be doing a swallowing assessment.
Basal Ganglia (holding limbs at awkward positions): She still does this and still, unless your looking for it, I don't think you would ever notice it.
Dementia (memory loss): Same. We're continuing to play memory games, but her memory will still slip a lot.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens quite a bit, especially when she is tired.
Sleep related disorders: Like I said before, she has trouble going to sleep and is often up early
Sensitivity to touch: Katha doesn't show much signs of this other than the puppy. His general fluffiness doesn't sit well with Katha, but she does try. She still likes to cuddle Oreo if he is wrapped up in a towel or something.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing fairly well with this. She looked up at an air balloon the other day and said there was two of them. So, even when she can look up, she sees double. She FINALLY has an opthamologist appointment in July.
Hearing: I still wonder if she has sensitive hearing. When I get the opportunity I will have this tested.
Tuesday, 11 June 2013
June 11, 2013
So, we had an ultrasound yesterday. This morning the G.I. clinic called to tell us that Katha's Liver is a normal size and more importantly functioning completely normally. With NPC it often effects the liver and spleen, and although Katha's spleen is still slightly enlarged, this is really good news. Hopefully her liver remains functioning properly.
I also had a meeting today with a nurse for the Lacombe Health Clinic. She is AADL (Alberta Aids Daily Living) approved. We will finally start getting some assistance with Katha's pull-ups. We now have to go to the Shopper's Drug Mart in Lacombe for pull-ups but considering how many she is going through, it's worth it.
For those of you who follow me on facebook, you will already know, but we got a dog as well. He is really small and only 9 weeks old. We've only had him for just over a week but it's going well so far. One of the main reasons we got our dog (Oreo) was so that he could be someone for Katha to cuddle with when she becomes bed ridden. We wanted to make sure to get the dog now so that they have time to bond while Katha is still doing well.
Onto the symptoms:
Enlarged liver and spleen: Her spleen is slightly enlarged, while her liver is completely normal. Both are functioning normally.
Ataxia (unsteady gait): Katha is walking pretty well. Her cataplexy causes problems once in a while, but she is very stubborn and enjoys walking as much as she can. In fact, if she can jog a little, she generally will. She had her "fun day" at school. Which is what we used to call track and field day. She really enjoyed it and when she got home she spent half an hour showing me what kind of activities they were doing. Just while showing me she fell on her face and hurt herself, but she keeps a great sense of humour when these things happen.
Dysarthria (slurred speech): Katha is still quiet and often needs me to translate for her when talking to people she doesn't know. But, with the dementia that she shows, she often talks in bits and pieces. For example in one sentence she might have 3 different thoughts about what happened in her day and will try to express that all at once.
Dysphagia (trouble swallowing): I have received and filled out the form. I'm just waiting for them to call and set up an appointment. I have already called them to tell them that I am ready whenever they are.
Basal Ganglia (holding limbs at awkward positions): She does this, but it's not noticeable unless you are looking for it.
Dementia (memory loss): This has remained the same. It is affecting her, however, she deals with it well, and if you remind her of what she was trying to remember, she generally will remember.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens probably once every couple days.
Sleep related disorders: Katha sleeping has evened out. She is still quite tired in the morning but gets over it quickly. Having the dog has helped with this by having someone new to play with she won't go lay down instead of playing in the afternoon.
Sensitivity to touch: Katha REALLY doesn't like it when the puppy nips at her (of course!) so this does effect them bonding (which I'm sure will happen eventually). However, she will pet Oreo if he will sit still long enough to let her. They generally just ignore each other right now. I got her to cuddle him after his bath last night. I'm thinking this might have to be Katha's job right now as it's the only time he's calm enough for her right now.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing pretty good with this lately. She still has trouble looking up but sometimes she is actually able to look up slightly.
Hearing: Although her test came back normal, the doctor put in his last set of notes that he believes that she may have sensitive hearing because of all the times she complains that places are too loud.
I also had a meeting today with a nurse for the Lacombe Health Clinic. She is AADL (Alberta Aids Daily Living) approved. We will finally start getting some assistance with Katha's pull-ups. We now have to go to the Shopper's Drug Mart in Lacombe for pull-ups but considering how many she is going through, it's worth it.
For those of you who follow me on facebook, you will already know, but we got a dog as well. He is really small and only 9 weeks old. We've only had him for just over a week but it's going well so far. One of the main reasons we got our dog (Oreo) was so that he could be someone for Katha to cuddle with when she becomes bed ridden. We wanted to make sure to get the dog now so that they have time to bond while Katha is still doing well.
Onto the symptoms:
Enlarged liver and spleen: Her spleen is slightly enlarged, while her liver is completely normal. Both are functioning normally.
Ataxia (unsteady gait): Katha is walking pretty well. Her cataplexy causes problems once in a while, but she is very stubborn and enjoys walking as much as she can. In fact, if she can jog a little, she generally will. She had her "fun day" at school. Which is what we used to call track and field day. She really enjoyed it and when she got home she spent half an hour showing me what kind of activities they were doing. Just while showing me she fell on her face and hurt herself, but she keeps a great sense of humour when these things happen.
Dysarthria (slurred speech): Katha is still quiet and often needs me to translate for her when talking to people she doesn't know. But, with the dementia that she shows, she often talks in bits and pieces. For example in one sentence she might have 3 different thoughts about what happened in her day and will try to express that all at once.
Dysphagia (trouble swallowing): I have received and filled out the form. I'm just waiting for them to call and set up an appointment. I have already called them to tell them that I am ready whenever they are.
Basal Ganglia (holding limbs at awkward positions): She does this, but it's not noticeable unless you are looking for it.
Dementia (memory loss): This has remained the same. It is affecting her, however, she deals with it well, and if you remind her of what she was trying to remember, she generally will remember.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens probably once every couple days.
Sleep related disorders: Katha sleeping has evened out. She is still quite tired in the morning but gets over it quickly. Having the dog has helped with this by having someone new to play with she won't go lay down instead of playing in the afternoon.
Sensitivity to touch: Katha REALLY doesn't like it when the puppy nips at her (of course!) so this does effect them bonding (which I'm sure will happen eventually). However, she will pet Oreo if he will sit still long enough to let her. They generally just ignore each other right now. I got her to cuddle him after his bath last night. I'm thinking this might have to be Katha's job right now as it's the only time he's calm enough for her right now.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing pretty good with this lately. She still has trouble looking up but sometimes she is actually able to look up slightly.
Hearing: Although her test came back normal, the doctor put in his last set of notes that he believes that she may have sensitive hearing because of all the times she complains that places are too loud.
Thursday, 16 May 2013
May 16, 2013
Katha had her first appointment with the G.I. clinic in two years today. So, obviously, this was her first appointment with them since her diagnosis. They had really good news.
We had taken an ultrasound of Katha's liver and spleen back in October. Her liver was a normal size and her spleen had shrunk 2 cm. Katha didn't start her medication until December so that means we were seeing positive results even before her neurological symptoms were improving.
Also, her blood work showed that her liver is functioning near normal. So, her doctor feels that the disease is probably not affecting her liver and spleen at this point. It may in the future, so they will keep her file open, but for now they are completely handing us over to the metabolic specialist.
Then we saw the metabolic clinic. Her gaze has improved slightly, her speech is quiet and slurred, and she wasn't as interactive with the doctor this time. However, she had been sleeping in the car, not to mention she had some cataplexy in the parking garage. That always freaks her out quite a bit. Also, I had mentioned to her that she may have to get blood work because the G.I. clinic had ordered some to keep track of her liver functions. So, she wasn't really into trusting doctors right at that moment. (I find if I warn her she's getting blood tests she handles it better).
The metabolic doctor also advised us that Katha can slowly start re-introducing lactose into her diet. He said that a good place to start would be things like cooked cheese. He suggested pizza. THAT made Katha happy. She hasn't had pizza for 6 months. So, when we stopped for supper she almost jumped out of her seat when she saw pizza on the menu. I've decided to keep her home tomorrow just in case it was too much too fast. She ate most of the individual sized pizza.
Enlarged Liver: Is a normal size and functioning close to normal.
Enlarged Spleen: Is currently 13 cm and functioning well.
Ataxia (unsteady gait): Katha has started to walk without turning in her feet which has resulted in fewer falls. She has also started jumping on the trampoline again and running.
Dysarthria (slurred speech): Katha speaks very quietly and slurs. She is often very difficult to understand. However, she has started getting louder, sometimes even yelling.
Dysphagia (trouble swallowing): A clinic from Lacombe called to say that we have been referred to them for a swallowing assessment. They are sending out a bunch of forms to fill out before we can be booked in for an appointment.
Basal Ganglia (holding limbs at awkward positions): This is definitely one of the problems that the medication is not touching. Katha does this a lot.
Dementia (memory loss): Katha has recently started playing games that require some memory which has helped improve her memory.
Seizures: Katha still has not had a seizure. In fact, as I was unpacking our suitcases from Disney World I realised we had accidentally packed her seizure medication in the suitcase instead of the carry-on. Thank goodness she didn't have a seizure on the plane.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens quite a bit. The doctor offered us medication to try to control this but I declined because it doesn't happen often enough for it to be a big enough concern.
Sleep related disorders: Katha has been sleeping in a little bit. Hopefully this is a sign of her getting back to her regular sleeping patterns.
Sensitivity to touch: Katha is not big on people touching her but that could just be her because as soon as an employee at Universal asked if she could hug her Katha hugged anyone who would stay still long enough to accept a hug.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): I have failed to mention this symptom before. Katha has trouble looking up. In fact, there are days she can't look up at all. Today, she looked up farther than I have seen her able to in months. Even the doctor was impressed.
We had taken an ultrasound of Katha's liver and spleen back in October. Her liver was a normal size and her spleen had shrunk 2 cm. Katha didn't start her medication until December so that means we were seeing positive results even before her neurological symptoms were improving.
Also, her blood work showed that her liver is functioning near normal. So, her doctor feels that the disease is probably not affecting her liver and spleen at this point. It may in the future, so they will keep her file open, but for now they are completely handing us over to the metabolic specialist.
Then we saw the metabolic clinic. Her gaze has improved slightly, her speech is quiet and slurred, and she wasn't as interactive with the doctor this time. However, she had been sleeping in the car, not to mention she had some cataplexy in the parking garage. That always freaks her out quite a bit. Also, I had mentioned to her that she may have to get blood work because the G.I. clinic had ordered some to keep track of her liver functions. So, she wasn't really into trusting doctors right at that moment. (I find if I warn her she's getting blood tests she handles it better).
The metabolic doctor also advised us that Katha can slowly start re-introducing lactose into her diet. He said that a good place to start would be things like cooked cheese. He suggested pizza. THAT made Katha happy. She hasn't had pizza for 6 months. So, when we stopped for supper she almost jumped out of her seat when she saw pizza on the menu. I've decided to keep her home tomorrow just in case it was too much too fast. She ate most of the individual sized pizza.
Enlarged Liver: Is a normal size and functioning close to normal.
Enlarged Spleen: Is currently 13 cm and functioning well.
Ataxia (unsteady gait): Katha has started to walk without turning in her feet which has resulted in fewer falls. She has also started jumping on the trampoline again and running.
Dysarthria (slurred speech): Katha speaks very quietly and slurs. She is often very difficult to understand. However, she has started getting louder, sometimes even yelling.
Dysphagia (trouble swallowing): A clinic from Lacombe called to say that we have been referred to them for a swallowing assessment. They are sending out a bunch of forms to fill out before we can be booked in for an appointment.
Basal Ganglia (holding limbs at awkward positions): This is definitely one of the problems that the medication is not touching. Katha does this a lot.
Dementia (memory loss): Katha has recently started playing games that require some memory which has helped improve her memory.
Seizures: Katha still has not had a seizure. In fact, as I was unpacking our suitcases from Disney World I realised we had accidentally packed her seizure medication in the suitcase instead of the carry-on. Thank goodness she didn't have a seizure on the plane.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens quite a bit. The doctor offered us medication to try to control this but I declined because it doesn't happen often enough for it to be a big enough concern.
Sleep related disorders: Katha has been sleeping in a little bit. Hopefully this is a sign of her getting back to her regular sleeping patterns.
Sensitivity to touch: Katha is not big on people touching her but that could just be her because as soon as an employee at Universal asked if she could hug her Katha hugged anyone who would stay still long enough to accept a hug.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): I have failed to mention this symptom before. Katha has trouble looking up. In fact, there are days she can't look up at all. Today, she looked up farther than I have seen her able to in months. Even the doctor was impressed.
Sunday, 12 May 2013
Disneyworld
Well, we're back. What a week!! We were treated like royalty the entire week. Give kids the world was amazing. Just to warn you, there isn't much for Katha's symptoms in this one, this is simply a run down of Katha's wish coming true and then some. It was an incredible week. Please, don't feel bad if you don't read this one, it's mainly just me reminding my future self of everything I can think of.
May 4th:
We landed at the airport and after meeting Roger from Give Kids the World, we started off for the resort. When we got there we were all very tired and hungry. So, we were sent to breakfast. I've got to say, I've never been so pampered in my life.
They treat you so well at Give Kids the World. They cook, they clean, and they see to your every wish. It was truly touching that everyone who works there (both employees and volunteers) top concern was our comfort and happiness.
The place was amazing! We stayed in a two bedroom, two bathroom villa. Even with 7 of us, it was more than enough space. Once we were settled in we decided to have a quiet day at the resort. They were having horseback rides when we got there. But, by the time we were ready to go, they were over. It was SO hot and muggy!
The kids and I decided to go for a walk and get to know the area. We found Amberville. It had a massive train set and you could push buttons to make trains go, or buildings light up. We sat there and played with that train set for probably 30 minutes. Then we played in the arcade with all of the old video games. We could have spent all day just in Amberville. There were also boats in a real moat outside that had the remote controls to inside, so you could race the boats.
We also went to see the ice cream palace that served ice cream from 7 AM to 9:30 PM. They even had lactose free ice cream for Katha! She was in seventh heaven! They also had a huge water park with a swimming pool and a mini-golf course. However, the kids really enjoyed the park that had a life-sized Candyland board in it. Katha immediately jumped up and ran the entire board. In fact, we had quite a time keeping her in her wheelchair all week. It was great to see considering in November she rarely left her wheelchair in Disneyland.
We were all still so tired that night that we ordered supper in and went to sleep.
May 5th:
We went to Universal Studios' Adventure Island. We started off with Dr. Seuss. Katha loved 1 fish, 2 fish, red fish, blue fish. It was a ride just like Dumbo only there was fish on the sides that sprayed water on everyone. Katha thought it was hilarious to get Mommy all wet. Every time we went through a sprinkler I kept covering up Katha so she wouldn't get wet. When I realised she was trying to get me wet I thought I should let her get wet, but it was natural instinct to cover her.
We also went on the Cat in the Hat ride. It spun around and Dominik HATED it. In fact, he was done with Seuss Landing altogether. But, we talked him into going on the little train through the rest of the island.
Then we walked through another island, but there wasn't anything we wanted to see there. We did end up stopping for a magic show that turned out to be a very long commercial for some Magic kits.
Then we got to the Magical World of Harry Potter. Anyone who knows me knows what I was like here. We went into a couple stores. I took more time taking pictures of everything than buying anything. I ended up getting a chocolate frog and some Bertie's every flavoured beans. Then we stopped at the 3 broomsticks for lunch. I tried butterbeer, which I expected to be disgusting but it was delicious. Even Mom liked it!
Then I bought some shirts for me and a friend who is just as obsessed with Harry Potter as I am, if not more, then we moved onto Hogwarts. Amory and I took a ride through Hogwarts and it was really good! Amory wanted to go back, but because of the type of ride it was, I wasn't feeling very good after that.
The rest of the family went on a Spider-man ride then we actually met Spider-man. He was awesome, in fact when we saw him a little while later, he remember Katha's name and told her to always be amazing.
It was very crowded at Universal and Katha and I weren't feeling that well, so we decided to call it a day after that.
May 6th:
We went to the Magic Kingdom. We headed straight for Dumbo, Goofy's roller coaster, Tomorrowland's Speed way, then the Ariel ride. We soon realised just how fearless Jay is. We could take him on any ride he is tall enough for. We got Katha a stuffed Dumbo that turns into a pillow. The way she latched onto that thing, it was the best thing we may have ever bought her. We stopped at Story time with Belle where kids act out the story with Belle. Katha got to be Maurice, Dom was silverware and Jay got to be the Beast.
Then we stopped for lunch, then proceeded to the Pirates of the Caribbean, Country Bears, Mickey's Philharmagic, Aladdin's Magic carpets, the Haunted Mansion, Space Mountain, Buzz's ride, Astro Orbiter, Monster's Inc Laugh Floor, and the Carousel. We also went on Stitch's ride, Dom got so mad at that ride he was near tears. We also stopped for a Dole Whip because I had read on several blogs that they are the must have food of Disney world. We had to wait over an hour in line for them. So, they weren't all they were cracked up to be.
Then we headed back over to Dumbo and the Speedway. Then we got on the train, went to the front of the park and watched the electrical parade. By that time it was pretty late so we went home.
May 7th:
Katha had her makeover at 1 so we slept in a little. We went to downtown Disney, got Katha's makeover where she was the "window princess". She got her makeover done right in the window of the store. It was pretty cool. She was originally going to be Princess Aurora (sleeping beauty) but they didn't have a dress in her size. So, she decided to Merida (Brave). I was glad because she looked awesome in the Merida dress.
After that we headed back to Universal Studios. We got there and went to the Despicable Me ride first thing. All 3 of the kids loved it. Dom and Jarrome loved the actual ride and Katha loved the dance party afterwards. Then we went on the Shrek ride. Then back on the Despicable Me ride where we saw someone else from Give Kids the World. Dom had watch E.T. at school so we went on that ride. We talked Dom onto the Woody the Woodpecker roller coaster. He was not Daddy's biggest fan after that. Barney was closed and we tried to go see the Blue Man Group but we would have had to pay extra for that. So, instead mom and dad took the kids back to the Despicable Me ride while Amory and I went on the Mummy ride twice because it was so much fun. I was so glad we did this because we seriously thought about skipping the Universal Park altogether.
May 8th:
We had the character lunch. We got to Epcot first thing and took the Test Track. Dom actually liked this ride which was a miracle all in itself. Then we headed over to the restaurant. We had to wait so we went on Maelstrom because it was right beside the restaurant. Katha got to meet Snow White, Ariel, Aurora and Cinderella. All the kids got to do a Conga line through the restaurant with the princesses. Katha wore her Merida dress and all 4 princesses commented on how much she looks like Merida.
Then we went to Soarin', the Nemo ride, Universe of Energy, Spaceship Earth. We tried to go on the 3 Caballeros ride but we couldn't find the entrance. Dad and Amory went on Mission: Space. They both seemed to like it.
Then we headed over to Hollywood Studios. We had a whole bunch planned but everything was closing or closed by the time we got there. So, we went on just the rides but not most of the shows. We went on the Toy story ride, saw Ariel's show, Star tours, the Muppet Show (we saw Phineas and Ferb but they took a break just as we got into line), and went to the Honey I Shrunk the Kids playground which all three of the kids loved!
By that time we were all wiped and went home.
May 9th:
We went to the ocean. To Cocoa Beach to be exact. The kids were in their element. We pushed the wheelchair out onto the beach but because it wasn't built for the beach that was a BIG mistake. Amory had to practically pick it up and carry it out to where we were sitting. When we left Give Kids the World it was 94 degrees and muggy. When we got to the ocean it was only 87 with a beautiful wind. We swam, we collected shells, it was perfect. The kids didn't want to leave but I was worried about being out in the heat too much with my little red-heads.
After that we went to a pirate dinner show. The show wasn't too bad. It was loud, overly expensive, and the service was horrible. However, the kids really liked it so it was definitely worth it.
May 10th:
We went back to Hollywood studios and went on all the things we couldn't a couple of nights before. This included the Beauty and the Beast show, the Indiana Jones show, the Lightening McQueen stunt show, the Toy Story ride again, Disney Junior Live on Stage. We also went back to the Honey, I Shrunk the Kids playground.
After that it was so hot we decided to go home and take a swim. Once the sun set and because it was Friday, and the park was open later, we decided to go back to the Magic Kingdom. This was one of the best decisions we ever made.
We walked into the park just before the parade started and it was wall to wall people. We cringed and talked about turning around and going home. As soon as we turned the corner to Adventureland it was clear of people. We got on all the rides we wanted to do again. We even got to go on Dumbo twice without even having to get back in line.
May 11th:
We had to be out of our Villa by 11 AM. It was also another horseback riding day. Everyday at Give Kids the World, while we were out at the parks a gift fairy would come in and leave the kids gifts. They left so much that we had to go out and buy 2 more suitcases to be able to get all of our stuff home. So, while Amory was buying suitcases, I took the kids on horseback rides. All three of them like it a lot. Also, they gave them cowboy hats which hardly came off for the rest of the day.
Once we checked out Amory went mini-golfing with the boys and Katha and I played some video games at Amberville. Then we all went mini-golfing (on their really cool, dinosaur themed, interactive mini-golf course), and then for ice cream.
After that we went swimming one last time then headed for the airport.
This has been just a not-so-quick review of some of the things we did for our week. Other things worth mentioning, Katha was constantly dancing and running. Every time we were in the car she made sure we were either playing I spy, thinking of words that began with certain letters, telling jokes or guessing who each other were (mostly we were Disney princesses). It was amazing to watch her try to keep her brain active.
When we went to Disneyland in November Katha was all smiles, but that was about it. This time, this trip, she was the life of the party. At least 5 times a day I would have to remind her to sit down. She would laugh with everyone else when we were making fun of Amory's navigating skills (he would get us lost every time he sat in front). I posted SO many photos and videos on facebook because I never want to forget this week. This blessed week that will leave me with so many memories for so long.
Every time I was holding Katha and thinking "just close your eyes and remember this moment with everything you have" she would feel me getting emotional and crack some kind of joke. It was awesome. I thank God for giving me this week, it was so much more than I could have ever expected or prayed for.
If you've stuck with me for this long, thank you. I can't believe you read this entire blog that is pretty much a list of rides! If you are ever looking for a charity to give to I highly recommend Give Kids the World and Make a wish. They both really go above and beyond!
May 4th:
We landed at the airport and after meeting Roger from Give Kids the World, we started off for the resort. When we got there we were all very tired and hungry. So, we were sent to breakfast. I've got to say, I've never been so pampered in my life.
They treat you so well at Give Kids the World. They cook, they clean, and they see to your every wish. It was truly touching that everyone who works there (both employees and volunteers) top concern was our comfort and happiness.
The place was amazing! We stayed in a two bedroom, two bathroom villa. Even with 7 of us, it was more than enough space. Once we were settled in we decided to have a quiet day at the resort. They were having horseback rides when we got there. But, by the time we were ready to go, they were over. It was SO hot and muggy!
The kids and I decided to go for a walk and get to know the area. We found Amberville. It had a massive train set and you could push buttons to make trains go, or buildings light up. We sat there and played with that train set for probably 30 minutes. Then we played in the arcade with all of the old video games. We could have spent all day just in Amberville. There were also boats in a real moat outside that had the remote controls to inside, so you could race the boats.
We also went to see the ice cream palace that served ice cream from 7 AM to 9:30 PM. They even had lactose free ice cream for Katha! She was in seventh heaven! They also had a huge water park with a swimming pool and a mini-golf course. However, the kids really enjoyed the park that had a life-sized Candyland board in it. Katha immediately jumped up and ran the entire board. In fact, we had quite a time keeping her in her wheelchair all week. It was great to see considering in November she rarely left her wheelchair in Disneyland.
We were all still so tired that night that we ordered supper in and went to sleep.
May 5th:
We went to Universal Studios' Adventure Island. We started off with Dr. Seuss. Katha loved 1 fish, 2 fish, red fish, blue fish. It was a ride just like Dumbo only there was fish on the sides that sprayed water on everyone. Katha thought it was hilarious to get Mommy all wet. Every time we went through a sprinkler I kept covering up Katha so she wouldn't get wet. When I realised she was trying to get me wet I thought I should let her get wet, but it was natural instinct to cover her.
We also went on the Cat in the Hat ride. It spun around and Dominik HATED it. In fact, he was done with Seuss Landing altogether. But, we talked him into going on the little train through the rest of the island.
Then we walked through another island, but there wasn't anything we wanted to see there. We did end up stopping for a magic show that turned out to be a very long commercial for some Magic kits.
Then we got to the Magical World of Harry Potter. Anyone who knows me knows what I was like here. We went into a couple stores. I took more time taking pictures of everything than buying anything. I ended up getting a chocolate frog and some Bertie's every flavoured beans. Then we stopped at the 3 broomsticks for lunch. I tried butterbeer, which I expected to be disgusting but it was delicious. Even Mom liked it!
Then I bought some shirts for me and a friend who is just as obsessed with Harry Potter as I am, if not more, then we moved onto Hogwarts. Amory and I took a ride through Hogwarts and it was really good! Amory wanted to go back, but because of the type of ride it was, I wasn't feeling very good after that.
The rest of the family went on a Spider-man ride then we actually met Spider-man. He was awesome, in fact when we saw him a little while later, he remember Katha's name and told her to always be amazing.
It was very crowded at Universal and Katha and I weren't feeling that well, so we decided to call it a day after that.
May 6th:
We went to the Magic Kingdom. We headed straight for Dumbo, Goofy's roller coaster, Tomorrowland's Speed way, then the Ariel ride. We soon realised just how fearless Jay is. We could take him on any ride he is tall enough for. We got Katha a stuffed Dumbo that turns into a pillow. The way she latched onto that thing, it was the best thing we may have ever bought her. We stopped at Story time with Belle where kids act out the story with Belle. Katha got to be Maurice, Dom was silverware and Jay got to be the Beast.
Then we stopped for lunch, then proceeded to the Pirates of the Caribbean, Country Bears, Mickey's Philharmagic, Aladdin's Magic carpets, the Haunted Mansion, Space Mountain, Buzz's ride, Astro Orbiter, Monster's Inc Laugh Floor, and the Carousel. We also went on Stitch's ride, Dom got so mad at that ride he was near tears. We also stopped for a Dole Whip because I had read on several blogs that they are the must have food of Disney world. We had to wait over an hour in line for them. So, they weren't all they were cracked up to be.
Then we headed back over to Dumbo and the Speedway. Then we got on the train, went to the front of the park and watched the electrical parade. By that time it was pretty late so we went home.
May 7th:
Katha had her makeover at 1 so we slept in a little. We went to downtown Disney, got Katha's makeover where she was the "window princess". She got her makeover done right in the window of the store. It was pretty cool. She was originally going to be Princess Aurora (sleeping beauty) but they didn't have a dress in her size. So, she decided to Merida (Brave). I was glad because she looked awesome in the Merida dress.
After that we headed back to Universal Studios. We got there and went to the Despicable Me ride first thing. All 3 of the kids loved it. Dom and Jarrome loved the actual ride and Katha loved the dance party afterwards. Then we went on the Shrek ride. Then back on the Despicable Me ride where we saw someone else from Give Kids the World. Dom had watch E.T. at school so we went on that ride. We talked Dom onto the Woody the Woodpecker roller coaster. He was not Daddy's biggest fan after that. Barney was closed and we tried to go see the Blue Man Group but we would have had to pay extra for that. So, instead mom and dad took the kids back to the Despicable Me ride while Amory and I went on the Mummy ride twice because it was so much fun. I was so glad we did this because we seriously thought about skipping the Universal Park altogether.
May 8th:
We had the character lunch. We got to Epcot first thing and took the Test Track. Dom actually liked this ride which was a miracle all in itself. Then we headed over to the restaurant. We had to wait so we went on Maelstrom because it was right beside the restaurant. Katha got to meet Snow White, Ariel, Aurora and Cinderella. All the kids got to do a Conga line through the restaurant with the princesses. Katha wore her Merida dress and all 4 princesses commented on how much she looks like Merida.
Then we went to Soarin', the Nemo ride, Universe of Energy, Spaceship Earth. We tried to go on the 3 Caballeros ride but we couldn't find the entrance. Dad and Amory went on Mission: Space. They both seemed to like it.
Then we headed over to Hollywood Studios. We had a whole bunch planned but everything was closing or closed by the time we got there. So, we went on just the rides but not most of the shows. We went on the Toy story ride, saw Ariel's show, Star tours, the Muppet Show (we saw Phineas and Ferb but they took a break just as we got into line), and went to the Honey I Shrunk the Kids playground which all three of the kids loved!
By that time we were all wiped and went home.
May 9th:
We went to the ocean. To Cocoa Beach to be exact. The kids were in their element. We pushed the wheelchair out onto the beach but because it wasn't built for the beach that was a BIG mistake. Amory had to practically pick it up and carry it out to where we were sitting. When we left Give Kids the World it was 94 degrees and muggy. When we got to the ocean it was only 87 with a beautiful wind. We swam, we collected shells, it was perfect. The kids didn't want to leave but I was worried about being out in the heat too much with my little red-heads.
After that we went to a pirate dinner show. The show wasn't too bad. It was loud, overly expensive, and the service was horrible. However, the kids really liked it so it was definitely worth it.
May 10th:
We went back to Hollywood studios and went on all the things we couldn't a couple of nights before. This included the Beauty and the Beast show, the Indiana Jones show, the Lightening McQueen stunt show, the Toy Story ride again, Disney Junior Live on Stage. We also went back to the Honey, I Shrunk the Kids playground.
After that it was so hot we decided to go home and take a swim. Once the sun set and because it was Friday, and the park was open later, we decided to go back to the Magic Kingdom. This was one of the best decisions we ever made.
We walked into the park just before the parade started and it was wall to wall people. We cringed and talked about turning around and going home. As soon as we turned the corner to Adventureland it was clear of people. We got on all the rides we wanted to do again. We even got to go on Dumbo twice without even having to get back in line.
May 11th:
We had to be out of our Villa by 11 AM. It was also another horseback riding day. Everyday at Give Kids the World, while we were out at the parks a gift fairy would come in and leave the kids gifts. They left so much that we had to go out and buy 2 more suitcases to be able to get all of our stuff home. So, while Amory was buying suitcases, I took the kids on horseback rides. All three of them like it a lot. Also, they gave them cowboy hats which hardly came off for the rest of the day.
Once we checked out Amory went mini-golfing with the boys and Katha and I played some video games at Amberville. Then we all went mini-golfing (on their really cool, dinosaur themed, interactive mini-golf course), and then for ice cream.
After that we went swimming one last time then headed for the airport.
This has been just a not-so-quick review of some of the things we did for our week. Other things worth mentioning, Katha was constantly dancing and running. Every time we were in the car she made sure we were either playing I spy, thinking of words that began with certain letters, telling jokes or guessing who each other were (mostly we were Disney princesses). It was amazing to watch her try to keep her brain active.
When we went to Disneyland in November Katha was all smiles, but that was about it. This time, this trip, she was the life of the party. At least 5 times a day I would have to remind her to sit down. She would laugh with everyone else when we were making fun of Amory's navigating skills (he would get us lost every time he sat in front). I posted SO many photos and videos on facebook because I never want to forget this week. This blessed week that will leave me with so many memories for so long.
Every time I was holding Katha and thinking "just close your eyes and remember this moment with everything you have" she would feel me getting emotional and crack some kind of joke. It was awesome. I thank God for giving me this week, it was so much more than I could have ever expected or prayed for.
If you've stuck with me for this long, thank you. I can't believe you read this entire blog that is pretty much a list of rides! If you are ever looking for a charity to give to I highly recommend Give Kids the World and Make a wish. They both really go above and beyond!
Friday, 3 May 2013
May 3, 2012
Today I had a meeting with a huge group of people. It was with everyone that works with Katha. Her doctor from the metabolic clinic even took the morning off and came to the school to discuss strategies on how to work with Katha. Most of the information was stuff we already knew. Mostly, what was said is that the more active we keep her, the better she will do.
There were also several other things discussed. Her doctor was saying that she is the mildest case of NPC he has ever seen. He also doesn't expect her to go downhill very fast with how well she is responding to the medication. He kept saying how he expects her to be okay for the next year. He can't guarantee anything, but from what he has seen, he feels that Katha will have a fairly slow progression of the disease.
There was a lot of good things that were brought up. I guess the biggest change is that because Katha is still loosing weight we are going to start supplementing her with some formula for her drink at meals so that she might gain a little of it back.
Also, he recommended not to try any kind of supplements without checking with him first because we don't know how it will effect her neurological symptoms as well as how it will react with the medication she is on.
The school has noticed her gelastic cataplexy is getting worse again as well. The doctor specifically asked about it and her aid wasn't sure what it was. When I explained it's when she falls down because of a large emotional outburst you could see the light bulb go on in her aid. She even said "That's what that is?!" So, I'm glad to have confirmation that it is getting worse. But, according to her doctor, that doesn't necessarily mean her decline is becoming more apparent. It's just that the miglastat doesn't treat the cataplexy. Which, was good to hear.
Her teachers said that Katha's reading is improving. I don't see much of that, but I'm still glad they think so. She is still learning and according to her doctor, that is a big deal.
They also mentioned how Katha has been using a walker to get to and from the bus at school. The doctor was very supportive of this so the physio therapist said she would start proceedings on getting Katha fit for her own walker which would be great.
Onto the symptoms:
Enlarged liver and spleen: According to the doctor some of Katha's mobility and weight loss issues could be caused by this. With mobility, if she has to lay on her stomach, it could be harder for her because her liver and spleen could actually get in the way. Also, some of the weight loss could be from her liver and spleen getting smaller.
Ataxia (unsteady gait): Katha continues to struggle with this. Although, I watched her run voluntarily for the first time in what seemed like forever.
Dysarthria (slurred speech): Katha continues to be hard to understand as well as slow in her speech but she tries hard. She is getting a new speech therapist who is looking into a communication device to help her when she looses her speech altogether.
Dysphagia (trouble swallowing): I mentioned to the doctor today that Katha has started choking when eating and drinking. Her teacher and her aid immediately said they had noticed that she will usually choke when drinking as well. The nurse coordinator said they would set up a swallowing assessment through the children's hospital.
Basal Ganglia (holding limbs at awkward positions): Katha does this quite a bit again. Usually whenever she is sitting, she is holding her hands awkwardly.
Dementia (memory loss): Katha still needs cues to remember events but once she does she loves to tell stories to anyone who will listen. Katha having a wonderful sense of humour was mentioned by almost everyone who works with her. The doctor was encouraged by this because it means Katha still has a lot of cognitive function.
Seizures: Still no seizures. The doctor was telling us today that a seizure is a real sign of the disease progressing to the point that Katha may no longer be able to go to school.
Gelastic Cataplexy (falling down in response to a large emotional outburst): As I mentioned earlier, this is getting worse. It scares Katha and causes her not to laugh as much.
Sleep related disorders: Katha still has trouble getting to sleep. However, she is finally over her cold and will hopefully be less tired for a while. The doctor mentioned today that Katha will take a while longer than most kids to recover from illnesses. Both Katha's teacher and I have noticed how long it takes Katha to get over a simple cold.
Sensitivity to touch: Katha is still doing well with this. She allows people to hug her and still wants to cuddle as much as possible. Often, when just sitting near me, she will reach over and grab my hand.
The doctor recommended getting Katha's hearing checked again to see if it's overly sensitive. We are still waiting for the opthemologist appointment as well as the metabolic psychologist.
There were also several other things discussed. Her doctor was saying that she is the mildest case of NPC he has ever seen. He also doesn't expect her to go downhill very fast with how well she is responding to the medication. He kept saying how he expects her to be okay for the next year. He can't guarantee anything, but from what he has seen, he feels that Katha will have a fairly slow progression of the disease.
There was a lot of good things that were brought up. I guess the biggest change is that because Katha is still loosing weight we are going to start supplementing her with some formula for her drink at meals so that she might gain a little of it back.
Also, he recommended not to try any kind of supplements without checking with him first because we don't know how it will effect her neurological symptoms as well as how it will react with the medication she is on.
The school has noticed her gelastic cataplexy is getting worse again as well. The doctor specifically asked about it and her aid wasn't sure what it was. When I explained it's when she falls down because of a large emotional outburst you could see the light bulb go on in her aid. She even said "That's what that is?!" So, I'm glad to have confirmation that it is getting worse. But, according to her doctor, that doesn't necessarily mean her decline is becoming more apparent. It's just that the miglastat doesn't treat the cataplexy. Which, was good to hear.
Her teachers said that Katha's reading is improving. I don't see much of that, but I'm still glad they think so. She is still learning and according to her doctor, that is a big deal.
They also mentioned how Katha has been using a walker to get to and from the bus at school. The doctor was very supportive of this so the physio therapist said she would start proceedings on getting Katha fit for her own walker which would be great.
Onto the symptoms:
Enlarged liver and spleen: According to the doctor some of Katha's mobility and weight loss issues could be caused by this. With mobility, if she has to lay on her stomach, it could be harder for her because her liver and spleen could actually get in the way. Also, some of the weight loss could be from her liver and spleen getting smaller.
Ataxia (unsteady gait): Katha continues to struggle with this. Although, I watched her run voluntarily for the first time in what seemed like forever.
Dysarthria (slurred speech): Katha continues to be hard to understand as well as slow in her speech but she tries hard. She is getting a new speech therapist who is looking into a communication device to help her when she looses her speech altogether.
Dysphagia (trouble swallowing): I mentioned to the doctor today that Katha has started choking when eating and drinking. Her teacher and her aid immediately said they had noticed that she will usually choke when drinking as well. The nurse coordinator said they would set up a swallowing assessment through the children's hospital.
Basal Ganglia (holding limbs at awkward positions): Katha does this quite a bit again. Usually whenever she is sitting, she is holding her hands awkwardly.
Dementia (memory loss): Katha still needs cues to remember events but once she does she loves to tell stories to anyone who will listen. Katha having a wonderful sense of humour was mentioned by almost everyone who works with her. The doctor was encouraged by this because it means Katha still has a lot of cognitive function.
Seizures: Still no seizures. The doctor was telling us today that a seizure is a real sign of the disease progressing to the point that Katha may no longer be able to go to school.
Gelastic Cataplexy (falling down in response to a large emotional outburst): As I mentioned earlier, this is getting worse. It scares Katha and causes her not to laugh as much.
Sleep related disorders: Katha still has trouble getting to sleep. However, she is finally over her cold and will hopefully be less tired for a while. The doctor mentioned today that Katha will take a while longer than most kids to recover from illnesses. Both Katha's teacher and I have noticed how long it takes Katha to get over a simple cold.
Sensitivity to touch: Katha is still doing well with this. She allows people to hug her and still wants to cuddle as much as possible. Often, when just sitting near me, she will reach over and grab my hand.
The doctor recommended getting Katha's hearing checked again to see if it's overly sensitive. We are still waiting for the opthemologist appointment as well as the metabolic psychologist.
Tuesday, 23 April 2013
April 23, 2013
So, this past weekend we had Katha's Bon Voyage party. It was a pool party at the Collicutt Centre. This was put on by Make-A-Wish and we got to invite Katha's class. About 17 kids turned up, and it was snowing, so we were pretty happy with that. Katha went down the water slide twice by herself. She was very proud of herself and I was proud of her too!
At the end of the party Jaclyn and Kirby (the women in charge of making Katha excited for her trip) gave us a package for our trip which includes our itinerary. I spent the rest of the day looking through that package, that's how big it was!
I cannot say enough good things about Make-A-Wish. Seriously, the next time you're looking for a charity to donate to, I would recommend Make-A-Wish. They thought of everything and have been so kind and generous to us. I feel like we're taking advantage.
Last week, I finally started to get a hold of Alberta Aids Daily living to get some help with Katha's supplies. After calling 5 different people they told me I need to have another assessment done to find out Katha's mental age. The last assessment only told us what percentile she is performing at compared to her peers. I don't know if I mentioned it before so Katha has the cognitive ability under the first percentile in relation to her peers. So, that means, most kids her age are at about 50% she is under 1%. However, she currently performs between 20 - 25%.
The people that administered the assessment were actually amazed at how hard she tries to keep up. Which gave me some peace of mind, one of my biggest fears is I'm not expecting enough from her, and not pushing her hard enough to keep up.
Jarrome actually got an assessment done today to see if he will get into Pre-K. The results are not supposed to be in for another three weeks. But, after explaining our situation with Katha and being worried about Jarrome she let me know that he is doing alright. Pretty average for his age, he is ahead in some things and behind in others. She thinks he will get into Pre-K, which would be awesome because then Dominik wouldn't have to go to school alone anymore when Katha is sick.
Katha has a cold and I kept her home yesterday thinking that she would feel better with more rest. She woke up like she was going to get on the bus, and didn't have a nap all day. So, today I thought "that's it, you're going to school!" The teacher called by 10 AM to ask if I would come pick her up. Because of Jarrome's assessment she ended up staying at school and they told me when I got there that she was actually a lot better now. But, as soon as she saw me, she wouldn't leave my side.
We don't get on the air plane for Florida until 5 minutes to midnight. So, that afternoon I've booked a meeting with Katha's teachers and her doctor. He is actually driving in from Calgary for this meeting at the school. I must say, I was shocked that a doctor who has a 6 month waiting list would take off an entire afternoon just for us. Anyways, at this meeting I plan to ask him about supplements because Katha is still losing weight, and I think it's time we start seriously considering this.
We got a letter back from the government that we can now claim Katha as a disabled dependant on our taxes. We can also write off any medical expenses, and we can go back to when she was born and re-file her as being disabled. Hopefully, this will help with future medical expenses.
Other than that, I can't think of anymore updates, so onto her symptoms:
Enlarged liver: Still enlarged, still the same size, as far as I know.
Enlarged spleen: Same as the liver
Ataxia (unsteady gait): Katha still falls down a lot. The other day she fell onto her back and started SCREAMING "I DON'T KNOW WHERE I AM!" over and over again until Amory finally helped her up. The next day she fell on her side and immediately said "it's okay, I know where I am." It was in the middle of Jarrome's birthday party and I immediately burst out laughing because that was her greatest concern when falling. We went on a bike ride the other day and I have to push her from behind because her thigh muscles aren't strong enough to do it by herself.
Dysarthria (slurred speech): Katha's speech is still hard to understand but she tries really hard. Although, a lot of the time, she's just too quiet to understand. It gets frustrating when she won't talk above a whisper, but I think she does this because she is worried that someone won't understand her when she is speaking loud enough.
Dysphagia (trouble swallowing): She choked on a piece of steak the other night. I have been so worried because she won't cough properly. Luckily, she got it up all by herself. We have been cutting little bitty pieces for her ever since, and she hasn't had another problem.
Basal Ganglia (holding limbs at awkward positions): I noticed her doing this just walking down the stairs at the doctors office today. I think when she's doing something that is more difficult for her such as walking on ice or going downstairs, her limbs just tend to get held at awkward positions.
Dementia (memory loss): Her memory is affected, but it's not as bad as it could be. She was playing a memory game today and she kept picking the same tile over and over again because she wouldn't be able to remember what it was otherwise.
Seizures: Still no seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This is starting up again more and more. Hopefully, it will keep itself down enough that she won't need additional medication for it.
Sleep related disorders: Katha seems tired most of the time right now. Yet it takes a while for her to go to sleep. Any physical exertion seems to drain her. Although with her losing weight, the fact that she's not often physically coordinated enough to run without falling, and that she often just wants to be alone, I don't push her to get up and be overly active anyway. The boys on the other hand never stop moving.
Sensitivity to touch: Katha still enjoys her cuddles with both Amory and I. She will also shake people's hand and hug other family members.
A lot of these things will be bad one day and good another. Keeping track of her digression will not be as easy as I thought it would be.
At the end of the party Jaclyn and Kirby (the women in charge of making Katha excited for her trip) gave us a package for our trip which includes our itinerary. I spent the rest of the day looking through that package, that's how big it was!
I cannot say enough good things about Make-A-Wish. Seriously, the next time you're looking for a charity to donate to, I would recommend Make-A-Wish. They thought of everything and have been so kind and generous to us. I feel like we're taking advantage.
Last week, I finally started to get a hold of Alberta Aids Daily living to get some help with Katha's supplies. After calling 5 different people they told me I need to have another assessment done to find out Katha's mental age. The last assessment only told us what percentile she is performing at compared to her peers. I don't know if I mentioned it before so Katha has the cognitive ability under the first percentile in relation to her peers. So, that means, most kids her age are at about 50% she is under 1%. However, she currently performs between 20 - 25%.
The people that administered the assessment were actually amazed at how hard she tries to keep up. Which gave me some peace of mind, one of my biggest fears is I'm not expecting enough from her, and not pushing her hard enough to keep up.
Jarrome actually got an assessment done today to see if he will get into Pre-K. The results are not supposed to be in for another three weeks. But, after explaining our situation with Katha and being worried about Jarrome she let me know that he is doing alright. Pretty average for his age, he is ahead in some things and behind in others. She thinks he will get into Pre-K, which would be awesome because then Dominik wouldn't have to go to school alone anymore when Katha is sick.
Katha has a cold and I kept her home yesterday thinking that she would feel better with more rest. She woke up like she was going to get on the bus, and didn't have a nap all day. So, today I thought "that's it, you're going to school!" The teacher called by 10 AM to ask if I would come pick her up. Because of Jarrome's assessment she ended up staying at school and they told me when I got there that she was actually a lot better now. But, as soon as she saw me, she wouldn't leave my side.
We don't get on the air plane for Florida until 5 minutes to midnight. So, that afternoon I've booked a meeting with Katha's teachers and her doctor. He is actually driving in from Calgary for this meeting at the school. I must say, I was shocked that a doctor who has a 6 month waiting list would take off an entire afternoon just for us. Anyways, at this meeting I plan to ask him about supplements because Katha is still losing weight, and I think it's time we start seriously considering this.
We got a letter back from the government that we can now claim Katha as a disabled dependant on our taxes. We can also write off any medical expenses, and we can go back to when she was born and re-file her as being disabled. Hopefully, this will help with future medical expenses.
Other than that, I can't think of anymore updates, so onto her symptoms:
Enlarged liver: Still enlarged, still the same size, as far as I know.
Enlarged spleen: Same as the liver
Ataxia (unsteady gait): Katha still falls down a lot. The other day she fell onto her back and started SCREAMING "I DON'T KNOW WHERE I AM!" over and over again until Amory finally helped her up. The next day she fell on her side and immediately said "it's okay, I know where I am." It was in the middle of Jarrome's birthday party and I immediately burst out laughing because that was her greatest concern when falling. We went on a bike ride the other day and I have to push her from behind because her thigh muscles aren't strong enough to do it by herself.
Dysarthria (slurred speech): Katha's speech is still hard to understand but she tries really hard. Although, a lot of the time, she's just too quiet to understand. It gets frustrating when she won't talk above a whisper, but I think she does this because she is worried that someone won't understand her when she is speaking loud enough.
Dysphagia (trouble swallowing): She choked on a piece of steak the other night. I have been so worried because she won't cough properly. Luckily, she got it up all by herself. We have been cutting little bitty pieces for her ever since, and she hasn't had another problem.
Basal Ganglia (holding limbs at awkward positions): I noticed her doing this just walking down the stairs at the doctors office today. I think when she's doing something that is more difficult for her such as walking on ice or going downstairs, her limbs just tend to get held at awkward positions.
Dementia (memory loss): Her memory is affected, but it's not as bad as it could be. She was playing a memory game today and she kept picking the same tile over and over again because she wouldn't be able to remember what it was otherwise.
Seizures: Still no seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This is starting up again more and more. Hopefully, it will keep itself down enough that she won't need additional medication for it.
Sleep related disorders: Katha seems tired most of the time right now. Yet it takes a while for her to go to sleep. Any physical exertion seems to drain her. Although with her losing weight, the fact that she's not often physically coordinated enough to run without falling, and that she often just wants to be alone, I don't push her to get up and be overly active anyway. The boys on the other hand never stop moving.
Sensitivity to touch: Katha still enjoys her cuddles with both Amory and I. She will also shake people's hand and hug other family members.
A lot of these things will be bad one day and good another. Keeping track of her digression will not be as easy as I thought it would be.
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