Yui's Chubby Cheeks
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On February 27, 2002 at 0:08 am, our beautiful Yui was born. She weighed at 6.6lbs, 23.5" in height, at full term, she looked so healthy. We left the hospital 5 days later.She didn't put on weight too much at 1 month check-up, but nursed well and slept well. At 2 months, we started to get concern about her weight and took her to a pediatric clinic. They suggested to switch over to formula, and it worked! She started to gain weight and her cheeks were getting chubbier. I had to go back to work at a daycare, so Yui came along with me. She was having a bottle every three hours and had 5 oz or so every time.
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 I'm one day old!! |
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At 3 months, She was doing excellent, and everybody loved her at the daycare. She developed neck control at 4 months and started to laugh out loud, played with toys. She still didn't roll over at 5 months, but she was vocal, playful and very alert. It didn't worry me so much then to see other babies at the daycare rolling over by Yui's age. Her hands were fisting, but I worked on those fists to open up and seemed to have worked. Yui's fingers were also started to become more flexible. I was told thatbabies weren't coordinated well and fist often.
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At 5 months, we started her on solids. She was doing amazingly well and weighed at 12.8 lbs, 29" in height then. At 6 months, she wasn't lifting up her head and just cried when in stomach position. She probably lifted up her head three times without crying in her life. I just thought that was how she was developing and wasn't really worried. However, she started to become quite fussy. She would cry so hard and often nothing soothed her. No cooing, smiling much less in these days, showing no interests in toys, she hated not being held in my arms.
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 With mom and dad |
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We have very hot and humid summer here in Japan, so we thought Yui was just exhausted from the heat. She developed a high fever in September, and her doctor said it was a simple cold. The cold symptoms were gone in a week, but she was still looking out of it. This time, her doctor suggested to go to a bigger hospital to run some tests. We stayed at the hospital for a couple of weeks to do just that. Blood work, eye conduct, EEG, hearing, nerve conduct, MRI, just about everything. The MRI images showed white matter abnormalities, and they suspected one of leukodystrophies. One months after sending the blood sample for a enzyme test, we received the result which showed the Galactocerebrosidase activity level being only one tenth of normal range. It confirmed her diagnosis of Krabbe. (We also ordered test, but needed to wait 4-6 months to culture the cells sufficient for the test.)
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 My first bite |
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It took two months to get the all the results, but I guess it could be said only two months thanks to the doctors who suspected a metabolic disease early on. By the time we went home from hospital, she was like a 3 month old again. No smile, no response to toys, no cooing. She just cried and didn't eat much. We always had to hold her even through the night. However, she started to do better eating. She would take 6.5 oz of formula and few bites of her favourite banana and strawberry (she hates the feelingof a spoon in her mouths, though). Other than that, though, her motor development was stalled, and she never rolled over.
Her doctor told us she'd lose vision, no neck control, regress, and live no more than a couple of years. We were desperate to show something fun for Yui while she could, so off we went to Tokyo Disneyland. She was sleeping most of the time there, but when awake, she was very alert. I remember she was really enjoying their evening parade. She was sill making eye contact then. |
 I'm 5 months old! |
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It was almost new year's day 2003, that Yui had another high temperature and was hospitalized. New year's day being the most important holiday in Japanese culture, it was a big bummer for all of us and we felt so sorry for Yui having to spend this festive holiday on a hospital bed. Since she was gagging when drinking, her doctor suggested tube feeding, but we declined. We set our goal of her milk intake at 20 oz-26oz a day, and Yui did very well with this. So after a few months of this, now the doctor agrees, although he noticed some regression from Krabbe disease, at this point Yui doesn't need to be fed through a tube. Needless to say, we are ecstatic about this. On the other hand, her eyes don't seem to focus anymore. She just had her 1st birthday portrait done at a photo studio, but it took a while to get a right angle so that she's looking at a camera.
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 Wowing in Disneyland |
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The day we heard Yui had Krabbe disease, on our way home, I held Yui in my arms and cried so hard. My husband, Hiroyuki was driving and next to me was my mother. She told me to contain myself for the sake of Hiroyuki because he couldn't possibly cry like I did while driving. As soon as we got home, Hiroyuki and I burst out crying. We all cried for at least 3 straight days. When I went out and saw a healthy little kid around Yui's age, I had this awful "why Yui?" feeling. I still have on-going struggle with this feeling, and it is hard to get rid of.Luckily, we met other families whose children have Krabbe over the internet. I was comforted, and they gave me courage. Yui is one year old now.
Ayako Kobayashi April 4, 2003 |
 Yui's 1st birthday |
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