Happy Birthday Little Man!! This week for your birthday you get to finally meet your Grandma Suraiya. She flew in tuesday night late, so you had to wait until Wednesday after daycare to meet her. You get along very well! She thinks you're a pretty great baby, of course!
You had your first daycare incident this week. Your friend Jaya was a little jealous while Faye was feeding you and comped your arm. Her mom was embarrassed and she got a long time out, but you seemed ok when I picked you up. Faye said you only cried for e few minutes. Rightly so, I say! Ouch!
You're talking a lot this week and you're very smiley. I think your tooth is finally gonna break the surface soon. You've got anything you can get your hands on in your mouth these days and when I look in there I can see a little spot where it seems like something is on it's way. You have bitten me a few times while you're eating, but it's not a habit yet, thankfully (you sometimes just suck an extra long time when we're both sleeping). I am proud of myself for exclusively breast feeding you again this week. One more week and I'll beat my record!
Your rash is doing well. Truer tummy is much better and your legs are getting there. I have been putting your yeast powder on since it's been three weeks. The creme seems to be healing up the eczema slowly. I've even been putting it on your head sometimes because your scalp is super dry. You pull out your hair when you're tired or eating, so you've got some bald spots. Hopefully the moisture will help that heal too so it won't be so itchy for you.
You're getting good at sitting up with support. Grandma has been holding you while sitting at the table and you like to play with whatever's in front of you. You especially like the hungry caterpillar book you got from TT. You have a great little personality and n love to laugh. Today Grandma held you in front for the mirror land you laughed and laughed and laughed at your reflection for a long time. Everyone in the room was smiling! I have a feelings that laughter will be one of your great gifts in life. You're such a happy boy that other people can't help but be happy around you!
Today we tripped it to Brainerd to see Dr. Kiesling. The jeep was a little cramped, but we made it. Grandma sat in the back with the kids until Amir started getting hungry so we stopped and then switched places.
The visit went well. Sarah said Lyla has maintained her range of motion seems stronger than last time she saw her. She watched Lyla walk and run and noted that Lyla is turning her leg in from the hip considerably more than last time. We'll have to wait and see what happens to her tone when/if she goes off chemo. The chemo acts as a relaxer for her muscles and as it starts to wear off, we might see some spasticity return. It will all be a waiting game. In the meantime, we're supposed to keep stretching and doing clam she'll exercises to strengthen her outside hip/butt muscles.
Sarah also came down on me for not scheduling an appointment with urology. She saw Lyla's last scan (the one where she didn't go potty before and was totally backed up) and said we really do need to consider toileting options for Lyla if she doesn't start going more frequently. Urine backing up into the kidneys would be extremely dangerous were she to get a uti and she is at increased risk for utis because she retains urine. Hopefully some time off chemo will get her back on a natural peeing schedule too.
In other news, Sarah also noted several spots on Lyla's skin that she deemed cafe au lait spots or aspen leaf spots. More than seven spot 1 cm in diameter can be an indicator for something called neurofibromatosis. It's a genetic disorder in which tumors actually cause the nerves to harden. Dr. Bendel specializes in neurofibromatosis of the ocular nerve and has noted Lyla's spots before but since she didn't have any other symptoms or enough spots to qualify, it wasn't a big deal. Sarah counted five today and said there's some kind of special light they could use to see if the spots are truly the indicator kind or just places where the change in pigment is from scarring (like where she is still healing from mosquito bites and her skin is lighter). We'll ask Dr. Bendel about it tomorrow an Sarah will send her a note too. She said if there's any thought that Lyla might have it we should do genetic testing since it's a genetic disorder. This freaks me out because Amir has at least two spots too. Good news is that if there is anything associated, it should show up in Lyla's scan tomorrow. Sarah apologized for always giving us bad news, but she's only being realistic. I get so wrapped up in Cancer land that I forget Lyla will always be a spinal cord patient, even if her tumor where to suddenly disappear completely.
I love these kiddos. I love them SO much. We're lucky for the times we share together -- even the hours in the car.
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