The 5th Year

Every passing year wasn’t easy, but we still made it with a thankful heart. This year, we are very very thankful that we have seen so much improvements on Hazel. No matter how small, it is very significant for us.

Hazel is (still) on 3 medications. Blood test has shown a slight abnormality in her liver. We are monitoring closely with the neurology team, and also I have been applying Juvacleanse on her liver as well. I couldn’t just stop her medication, and really, other than chanting for the best, there is really nothing much I could do. I often get so frustrated at such things that is beyond my control. I wished I could do more for her, but certain things are just out of my reach.

Anyway, on a happier note, Hazel has been more responsive and cooperative in school now. She loves to hum along with the music, and her favorite song now I believe is the goodbye song that the teacher sings with the children when class ended. It means she can go home! She started to munch biscuits, teeny tiny bit but good start. She still gives that disgusted look when she accidentally bite a chunk out of the biscuit and landed in her mouth, but all of us were clapping and praising her. She must be thinking why there’s this bunch of weirdos cheering at her when she hates the food. She gets all excited when she hear we pull her baby chair to the dining table. She responds to words like porridge, milk milk, go room and sleep and bao bao (carry). Hazel looks at us when we are talking to her, sometimes she will smile, sometimes she chuckles, and I think she does understands. Oh, and she walks more and is more steady in her steps! Although most of the time, she just gets lazy and simply refused to even stand on the floor. We are simply over the moon on her many small achievements.

Yesterday was her 5th birthday. We celebrated a day early as her daddy needs to work on national day eve and national day itself. But really, might as well say that we are celebrating for ourselves. Every year, I put in some thought about which cake design I should get for her. Many people might find that I am wasting too much money on a cake. Yes, all her cakes cost $100+, considering that the birthday girl herself isn’t eating the cake, and it is just a small family celebration, yup it is indeed costly. All I am going for is just a photo. In the hope that in future, when she can understand, I can show her pictures of the cakes I have got for her on her birthdays, birthdays that she had missed and no memories of.

I envy children who can celebrate their birthday in school, with their friends and classmates. Not saying that CPAS doesn’t allow, but really, what is the point when Hazel doesn’t enjoy and understand the whole process? This year, I wanted to throw a party for her at a chalet. Hubby was saying why do we need to throw a party when Hazel has no friends? How true. So this year, it is a small celebration with family, after taking pictures of the birthday girl and the cake, Hazel is back to her comfort area (the sofa) to play her toys and the adults ate the cake.

I hope the timeΒ  will come soon that Hazel will really enjoy and be involved in her birthday celebration. I am waiting for the day that when she sees the cake I get for her, her eyes will glow with excitement, and her face filled with a wide smile. That will truly be a Happy Birthday. πŸ™‚

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Ordered her cake from Bakers Heart again this year. One thing I like about Bakers Heart is that their cake can be a cream cake with design instead of fondant. Very impressed with their effort and work. Customer service is excellent. Fell in love with the cake instantly when I lift up the lid of the box. This year theme is Twinkle Twinkle Little Star, one of Hazel’s favorite song, and if you watched the Super Simple Song, these are the 2 main characters in it. Very very nicely done by Bakers Heart. Thank you so much.

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A decent family picture with all of us looking at the lens is never easily taken with Hazel. But I do love the candid shot of her smiling ever sweetly at her daddy.

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Simply refused to look in front LOL.

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Just us, lazing on the sofa.

So, with the launch of Pokemon Go, I thought I wasn’t one to be going after the craze. I was so wrong. Next thing I know, Im addicted to it, and keep finding chances to get out of the house. Duh.

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So, on her birthday morning, I brought Hazel to the park trying to catch some pokemons. Haha. She will be visiting the park with me very often now.

I’m so ecstatic that my estate has 8 swings built! It is usually occupied but happy enough that there are finally some swings around my area! Looking forward to bring her play swing more often!

On a side note, I am logging in Facebook lesser, and also didn’t post much about Hazel in Facebook now. If you are still following updates about Hazel, find me on instagram if you have one. πŸ™‚

My Birth Day!

Yea, so I am trying to write this post before the strike of twelve, when it is still my birthday that is. Sounds so childish. LOL

Anyway, so many updates that I want to share!

Last saturday, Hubby bought me a Swensen’s ice cream cake! Had a small celebration at my mom’s. Just look at how excited Hazel is over the candle. Seems like her birthday!! lol

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Today, Hubby took leave to accompany me! *Touched*
After we dropped Hazel in school, we went to chill in a cafe.

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My birthday waffle πŸ™‚

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Pak-tor-ing while Hazel in school.

Back to school to fetch Hazel, and the teacher showed me what Hazel has done during school today. Oh my, my heart is swelling with pride and happiness. This is the first work I have seen from Hazel done in school! Back in AWWA, she wasnt cooperating at all, we can hardly made her do anything. But today, I saw her improvements! Best present!

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And of course I have to end the day with a picture taken with my warrior.

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Best pictures taken cuz I dont have a very good photographer. Just have to make do with it. But he did capture some nice shots of Hazel. Good enough. πŸ™‚

Some updates about Hazel:

Hazel has started school again in March at CPAS! Although she still fuss and cries, at least she’s awake for that 2 hours!

She has started on porridge! And is loving it! All of the sudden she loses interest in her milk. Which is not a bad thing really. πŸ™‚ We are still using syringe to feed her, and hopefully the next step is to be able to feed her using spoon.

I am hopeful about her seizures condition, as I hardly see much of it now. I am not sure whether is it too subtle till I can’t catch it, or it is really gone for good, or her brain is still having seizures, but we choose to believe it is gone for good. Staying positive!

 

 

Roller Coaster

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During this 2 months, I saw Hazel’s behavior and emotions with a 360 degree change and for us, a real roller coaster ride with her.

From early Jan, with the spike in seizures and the starting dose of steriods, she had gotten less active, and uncomfortable. Not a smile on her face.

Hospitalized for 4 days, went home in a super drowsy state. She doesn’t play, doesn’t make any sound, just sleep and sleep and sleep.

Early Feb, she started to get better, less drowsy and more playful. She keeps laughing and smiling at the slightest thing. No crying at all. Even when we brush her teeth.

Gradually, she started to scream in her super high pitch voice (probably she is very fascinated by it), throughout the day and started to sing along with the children’s songs. And she sleeps at wee hours.

Current state, she does not laugh or smile that easily like before, still screaming, still singing, and more crying. Still playful, and talks in her baby language more.

She also started her food fussing. Refused to cooperate during feeding time. Earlier on was the worst, she cried non stop, refused to drink her milk and we had to pour it away with the medicine in it.

Have no idea what is wrong or where she is not feeling well. Oil her, and put her to bed, thinking she might be too tired. Hopefully tomorrow will be a better day.

 

Day 10

10th day into steriods, Hazel isn’t reacting very well to it.

We increased her dosage on Tues as per Doc’s instruction. Her stomach started to bloat, stretched until her skin is so tight I could see the veins, and when I tap her tummy, is just like tapping on a drum, its all gas. She is so uncomfy. She can’t nap well, she will sleep for awhile and wake up, sleep and wake, for the whole afternoon. She will suddenly cry for no reason, no matter what position I tried to carry her, she will struggle. She will sit, or lie down, or lie down on her tummy. She just keeps changing position, trying to find one that makes her comfortable.

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Really pains me to see her like that and I started crying again.

Crying doesn’t solve anything. But the tears just flow.

Religiously applying Digize and peppermint oil on her tummy, made Fennel tea to rid the wind. Massage her, pat her back, anything that will make her feel better.

She doesn’t smile nowadays. I really miss her smiles, her laughter, her chatters. Her seizures isnt getting any lesser as well. Probably the only good thing is I have not seen any spasm on the 2nd day since we started steriods. She has recovered from her cough and flu as well.

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The one thing I love hearing now is her fart. The more she fart, might just means she will feel less bloated and more comfortable.

Can’t wait for the time to pass faster. Every minute now is just like an hour. Every hour is just like a day.

Hope tomorrow is a better day.

Fight on. Both of us.

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Happy New Year

Counting down at home (not exactly), watching TV, and oiling the sick baby.

Day 3 into Steriods and her immunity plunge down. Having a runny nose and cough, very cranky and easily agitated.

A very sweet friend never forget that I love her Shepard’s Pie, and she made one for me and gives 2015 a sweet closure.

2016, a brand new year, more challenges coming, but am still looking forward to much more improvements and milestones from Hazel. Most importantly, I hope she will be seizures free.

2015, be it mistakes, regrets or unhappiness, it’s all in the past. Of course we have loads of happy moments with Hazel.

I look forward to 2016 with an optimistic heart, hope to be a better person, have the wisdom to overcome whatever obstacles that may come.

And Be Happy.

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4 weeks of Steriods Battle

Day 1

Officially started Prednisolone today for Hazel. Its going to be a 4 weeks course. As much as I hate it, I have to endure the pain. Praying, hoping and chanting hard that after this 4 weeks, her seizures can really be controlled.

Making her happy and comfortable as much as I can, as I know the high dosage of steriods will churn her stomach, causing bloatedness. Oiling her as often as I can, not only does the aroma calms her down, it helps to clear her airways, and soothe the tummy.

She’s going to get grouchy, sleepy, drowsy, and i’m going to miss her smiles and activeness for a month. I hope that after this course, she will still remember how to walk, take steps, play & smile, and all the dangerous stunts she has been giving us.

Reason to give steriods one more shot is because Hazel has tried almost all the meds she can try. And her spasm and fits are still not controlled. Every attack breaks my heart.

Keeping my fingers crossed.

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Old Memories. New Memories

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Often, I see many toddlers started learning to stand, and walk eventually because they have the curiosity in them and I wonder, why Hazel doesn’t have?
Often, I see children wanting to eat and try food that they are curious in, and I wonder why Hazel doesn’t do the same?
Often, I see so many normal kids around me and I wonder, when will be Hazel’s turn to be a normal child again?

I met a lady few days ago and we happened to chat. Such a coincidence that her kid also had Shaken Baby Syndrome when he was 5 months old. And the sad thing is, it was also caused by the nanny taking care of him. His condition wasn’t as serious as Hazel, and at 4 years old now, he is running around, talking and almost like any other normal kid. He will be attending kindergarten, and go mainstream primary school, that Hazel does not have the luxury to do so.

Reliving the old memories while chatting with the mom, the days of running to ICU everyday, started crying whenever I walked near the hospital bed, seeing Hazel hooked up with so many wires, not even opening her eyes to look at us, the heartache, the pain, everything came back as if it was just yesterday. She can totally understand what I went through and how I felt, and I felt the sudden relief.

Hazel may not mean anything to the world, but she means the world to us.

I give thanks that she is behaving very naughty now.
I give thanks that she knows how to throw a tantrum.
I give thanks that she is picky in her food and gives us hell lot of work when feeding her.
I give thanks that she is so clingy to us and this shows she knows us.
I give thanks that she is afraid of loud and noisy things that startles her.
I give thanks that she will laugh when we tickles her, or when we make weird sounds beside her ears.
I give thanks that she will cry when she falls while standing or walking that few steps.
I give thanks that she is lazy and how she bend her knees refusing to stand straight to avoid walking.
I give thanks that she knows where I am sitting at and always come crawling to me when I am at my busiest.
I give thanks that she recognizes words like gai gai, milk milk, tu tu, bao bao, as these are her favourites.
I give thanks that she behaves like a baby and seeks that sense of security from us.
I give thanks that she likes me applying essential oils for her, and can lie on her tummy for me to apply that 10 bottles of oils for raindrop on her.
I give thanks that she likes playing with her saliva and my guess is she finds it therapeutic for her. LOL
I give thanks that she will try to balance herself when she is about to fall down while standing, though most of the time she failed to balance. Well at least she tried.
I give thanks that she broke my Aria Diffuser, unhurt, and just sits there waiting for us to clear the glasses.
I give thanks that she always attempts to walk to the TV console and giving me a heart attack everytime.
I give thanks that whenever she starts to flip her arms, it either means she is gonna start walking or wants to be carried.

Other than the frequent fits and spasms she is having everyday that’s challenging us, Hazel is a great joy. The moment she smiles, we smiles.

So what more can I ask for?

We are definitely making much better & sweeter memories with her.