Friday, July 17, 2020

Plastik alas tempat tidur Emma

Tanggal 5 Juni 2020, tanggal bersejarah. Plastik yang selama in dipakai Emma buat alas tidur (melapisi di atas sprei), bisa dilepas. Plastiknya plastik meteran yg tebal, mirip dengan plastik untuk taplak meja. Buat apa? Supaya kalau Emma gesek-gesek muka dan lehernya selama tidur atau saat terbangun; yang pasti terjadi setiap malam, ga hanya sekali, multiple times; kulitnya nggak luka.

Papanya Emma dapet ide ini dari blog seorang bapak yang juga punya anak eczema. It was amazing to realize that we were not the only one struggling with finding solution to keeping our baby from making new wounds every night. It was THE BEST idea so far, and a life saver.

Sebelum pakai plastik, kami pakai scarf mama saya yang bahannya paling halus, ukurannya panjang jadi cukup untuk menutupi tempat tidur dari ujung ke ujung, lebarnya dari sekitar pinggang sampai ke atas kepala. Karena cuma 1 yang sehalus itu, scarf itu kami pakai cuci kering. Kalau hujan dan malam hari scarf itu belum kering, deg-degan.. Harus dikeringkan dengan hair dryer. Pernah juga mbak lupa nyuci dan baru ingat sore hari. Deg-degan.. Pokoknya, gimana caranya, scarf itu harus dipakai setiap Emma tidur. Ga kebayang tanpa itu. Dengan pakai alas saja, pagi hari mukanya banyak lecet, apalagi lehernya waktu parah-parahnya, setiap bangun tidur basah lagi, basah lagi. Ini sudah kami jagain sebisanya, setiap Emma gesek kami pegangin, usapin area yang gatal, kasi krim, kompres air dingin, etc. Apapun caranya biar nggak gesek-gesek, biar nggak luka. Kami nggak bisa jaga 100% selama dia tidur, karena kami juga butuh tidur.

Sejak pakai plastik, tidur kami lebih tenang. Nggak lagi khawatir ada luka-luka parah baru di pagi hari. Lecet sedikit-sedikit ada. Karena di saat gatal, Emma akan gesek sangat keras dan berulang-ulang, terus menerus. Jadi kalau area yang digesek ada rash yang dalam keadaan basah, atau kulitnya belum tumbuh sempurna, pasti akan kebuka lagi karena gesekan, walaupun sudah di atas plastik.

Saya memberanikan diri buka plastik Emma setelah beberapa kali tidur siang saya perhatikan dia nggak gesek-gesek lagi. Tanpa plastik pasti lebih nyaman, nggak panas. Saya bukan nggak tahu kalau tidur di atas plastik itu panas (seperti mungkin beberapa orang kira ✌). Saya cuma nggak tahu alternatif yang lebih baik buat kondisi yang ada. Menurut saya, plastik dengan segala pros dan consnya, adalah pilihan terbaik selama ini.

Sayangnya waktu buka plastik itu, saya lupa ambil foto tempat tidur Emma saat masih pakai plastik. Bittersweet memory. Bitter karena it wasn't a happy time when we were using it. Sweet karena plastik itu penolong hidup kami dan Emma. 

Waktu ubek-ubek foto di hp, nyari siapatau ada foto plastik tempat tidur Emma, ternyata saya nemuin satu-satunya foto tempat tidur Emma lengkap dengan plastiknya, persis tanggal 5 Juni 2018. But the picture is too heartbreaking to share. I keep it in a separate folder, with many other heartbreaking pictures. It's tough to see. But I need to revisit it from time to time to remind me that it was that bad, but look at where she is right now. Praise the Lord.

Tuesday, May 5, 2020

New clothes for Emma


Looking at this picture of her, it feels like a dream. I have been keeping this dress for quite a while, waiting for the miracle to happen.

In March 2019, she developed a trouble spot at the back of her neck. Some days it disappears, the other days it reappears with a vengeance.
Around April, it spread even farther to her upper back. It was so itchy that she would rub it to anything that comes into contact with it, her clothes, the bedsheet, the wall when she leans againts it; making it weeping and wider. We tried to put bandage on it, to keep it from getting rubbed, especially during sleep, but she always managed to take it off. 

I took the following picture in June 2019. It's still painful for me having to look at these pictures again.

It got more troublesome that we had to cut the neckline of all her clothes, making it wide enough so the fabric doesn't come in touch with the trouble spot unless she would be so irritated. We turned all her clothes into off-shoulders-like. 

Off-shoulders have to be tailored to make it fit around the body and not drooping while worn, and her clothes were not. So all her clothes would drop down, uncovering her skin more than we would like to show. Whenever we go out, people would make comments like "Why isn't she wearing any clothes? Is she hot?" (Literally, orang nanya "Kok telanjang???" padahal jelas-jelas dia pakai baju).

As time went by, she got more used to not being covered around the neck, upper back, and shoulders. Eventhough there were no prominent rashes on her shoulders, she would be so irritated and panicked if her clothes touch them. So we had no choice other than giving her the "off-shoulders". Even tanktops are still uncomfortable and painful for her to wear.

This March, the trouble spot suddenly disappear. She went from this on March 12th, 2020 :
to this on March 26th, 2020 :
At first, she still couldn't tolerate any fabric. I tried to put her on an uncut t-shirt, she panicked and started pulling the neckline wider to uncover her back and shoulders, so I took it off again. The next time I tried, she wore it comfortably for 5 minutes and then started panicking, I took it off again. I forget how many days after that, but I think it was still in the same week, she managed to wear a normal clothes and didn't panic at all.

I have been keeping so many clothes for her in a box. Pretty dresses and t-shirts that I haven't got the heart to cut yet. Everytime I put clothes into that box, I say to myself "There will come a day when she will be able to wear this.", and I pray to God to make it happen someday. And now it's really happening. Praise the Lord!