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Lainey Lou is no Longer Two
This was one of the first pictures we received of Lainey or Lan Lan as they called her.
Lainey – we were told she has a sweet, bright, and welcoming spirit and loves to cuddle.
Her name has evolved over the last 7 months. She gets called Lan Lan, Lainey Lou (even though her name is Lainey Rae), Lambie, and Lainey Lambchop. Her animal has become Lambie from Doc McStuffins. Which works out pretty good because everyone in our house loves the Doc McStuffins song, “I feel Better” and on the show, Lambie is so very cuddly.
Lainey knows how to cuddle. Lainey loves to lay her head on your shoulder. When we were in China, that was the only place that brought her comfort.
We have come a long way since those days in China. I have spoken often about how trying those days were. Lainey was very happy at New Hope. We sponsored her and had many pictures and reports of how happy she was. She had individualized care and people who knew her well. I do believe she was happy there. The problem began when she was transferred back to the orphanage two weeks before we arrived in China. She had a 14+ hour train ride. She was with people she didn’t know and they didn’t know her triggers. If Lainey starts throwing a tantrum and you don’t stop it within the first minute, it turns into a full blown rage. I’m sure she was left alone to rage quite often. By the time we got her she was a mess. She was raging and angry and scared and in constant meltdown mode. There was no eye contact. She was non-verbal. She couldn’t calm herself at all.
Within just a few weeks at home, things got better. We knew what was going to upset her. She was smiling and playing and happy. She still loves to cuddle on your shoulder.
She especially loves daddy. Daddy has an office in the basement. We have a gate at the top of the basement stairs. As soon as she hears that gate click, she runs to her daddy and lays her head on his shoulder. It’s her very favorite place to be.
Now we know her triggers well. We can head off most problems. Instead of being upset most of the time, she is rarely upset. She has purposeful play. She is trying to vocalize. She has said, “Ma, hi, Gee (Grace), Dad, and yeah.” You should have seen her daddy’s face the first time she said, “Hi Dad!” so clearly. She plays around the kids and wants to be part of the play even though she really doesn’t understand how to play with them. She loves to run. She loves to laugh. She loves the wind blowing in her face. She loves water and will play in any amount of water anywhere. She runs to the backdoor gate whenever anyone comes home. She puts her arms up to be picked up.
Her PKU has been relatively easy to control. She doesn’t really want other foods so we have been lucky that way. She loves rice cereal, baby food – squash, green beans, sweet potatoes, and pears. She does ok with her weekly finger stick. We have been staying within the range most of the time.
We still have a ways to go with the sleep issues. She routinely wakes up every 90 minutes to 2 hours. Although, she slept for 4 hours in a row the other day. IT.WAS.AMAZING!!!! We still have to take shifts and big sister Cassie routinely cares for her. I’m not sure what I would do without big sisters help. Lainey rarely rages, except at night, when she wakes up with what seems to be night terrors. Her seizures are much more controlled now. It took forever to get into see the neurologist. When we finally did, they weren’t sure they agreed with what Dan thought were short seizures but they decided to schedule a video EEG to check. No one wanted to put her on medication until we knew for sure what was going on. It took a while to get the appointment for the VEEG in the hospital.
I was so worried they wouldn’t be able to do the EEG. Lainey does not sit still and she certainly doesn’t like things on her head. It took an hour of holding her down to get the leads on. She fought so hard that she slept for an hour after the leads were attached – so we got a great baseline EEG. Then she had 6 seizures in the next hour that we saw and there were many more subclinical ones that they caught. We didn’t end up staying over night because she had so many seizures in that hour that they got a good reading. The good thing about her seizures are they are very short lasting and they don’t seem to affect her in any way afterwards, but I still can’t imagine having ten or more seizures every hour and functioning very well. Poor baby. It was no wonder she was having such a hard time.
We started her on medication and have seen definite improvements. She is calmer. She is more focused. As Dr. Noble says, “She has great potential for making wonderful strides in the next couple years.” We were thrilled. The truth is she will never be “normal”, but she has come so far already.
I remember my fear in China of what would happen to the family when we got home. Would we be able to handle the tantrums and no sleep? Would it even make a difference? Would Lainey ever be happy? Would she understand love and family?
Well, everyone loves Lainey. She understands family and love. She plays and dances and laughs and sings. I have no clue what the future holds for her but the last 7 months have been pretty amazing. She’s made such wonderful strides and there is real hope for her to communicate and get better. All in all a pretty good year. Praying next year brings even more strides forward for our little girl.
Happy birthday little Lambie.
