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Amelia Rose: 3 Year Update

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Amelia Rose: 3 Year Update

It’s been a pretty good year for Miss Amelia Rose, aside from being sick on and off from October to February and needing tubes twice in 8 weeks (mid December and early February). She recently had a full speech/developmental evaluation done at CHOP and she tested at a 4 1/2 year old level… this girl is smart! She LOVES to read, is very observant, and also very absorbent. Every day I look at her and can’t believe she’s mine! She is growing up to be such a beautiful girl with the prettiest blonde hair and the deepest blue eyes and such delicate features. She has a gentle and nurturing nature and at any given time she is either a princess, a toy doctor, or a super hero! She’s definitely my girly girl- she wakes up asking for a tutu or a princess gown- but she also loves to play outside and doesn’t mind getting dirty- she loves playing in the dirt and planting and picking flowers.

Amelia, there are so many things I want to remember about you at this age. Your temper is starting to come out quite a bit and I worry that you’re learning a little too much from my quick temper. But you are just the sweetest thing. You love to cuddle and fall asleep with me every night (I seriously hope this never changes!). You’re still not totally potty trained but we’re working on it. You’re 30 pounds but you’re tall and you’re turning into somewhat of a picky eater. You LOVE to be outside, you LOVE the ocean and to pick flowers and when we go for walks we look for fairies, mermaids, and all kinds of animals. We took you and Joseph to the aquarium for the first time last month and you both loved it! I think if I could keep you this age forever, I would. But something gives me the feeling I’m going to say that about all the ages…

For some reason, 3 years old has been hard for me to process. As wonderful as 3 year old Amelia is, it also means she is one year closer to beginning her surgeries, one year closer to going to school full time, and one year closer to just being grown up. Every time I tell her that she’s growing up too fast she says, “I know, I know… but I have to get bigger and grow up…” (insert crying emoji here). She is sweet and sensitive, gentle and kind, beautiful and smart, and she’s seriously my best friend. She and her brother make me want to be a better mom, wife, daughter, sister, friend, and human every day and I couldn’t be more grateful for them.

There are so many things about her that I want to remember forever, particularly her little voice saying “mama” and telling me I’m her best friend and asking me for eyelash kisses! We love you so, so much Amelia Rose!

We had a very small birthday party this year as we were pretty much keeping her isolated until her second round of tubes were put in (well, one tube) but we had fun having donuts and watching her open her presents. She is THE most grateful girl, for which I’m beyond grateful. On the morning of her birthday, we blew up balloons and put them in her room and then sang to her with a candle in a donut and gave her a princess tiara when she woke up. Her eyes lit up and she looked at us with the biggest smile and when we were done singing she blew out her candle and told me this was the best birthday ever!

on Britt: dress: WAYF via Nordstrom (similar print here but also comes in 8 other colors & is one of my favorite dresses!), cardigan: Nordstrom (I sized up for an oversized look & it comes it 5 other colors!), mules: Nordstrom (on sale & comes in 7 other colors!)

on Amelia: dress: Gap Kids, cardigan: Gap Kids, shoes: Janie and Jack c/o, socks: Gap Kids, bow: Wunderkin Co

Thanks so much for reading! I hope you all have a great day and an even better weekend! Tonight is my youngest sister’s junior prom so we’ll go to see her for pictures and then I think we’re going to walk into town for their food truck festival. I’m pretty excited about it! We’re still house hunting and dealing with everything that comes with it so keep your fingers crossed for us (if you have an extra set of hands, haha!)!

Additional medical updates:

She did really well at her second Craniofacial clinic (such a long day for the kids) and was told by Opthomology that they don’t need to see her anymore. However, her Plastics Dr. recommended that we see another plastic surgeon that specializes in reanimation. We went at the end of January and it was a pretty intense consult- he said she was a candidate for the surgery but we haven’t made any decisions on that front… it is a two part surgery and they’re both really serious surgeries and recoveries (the second one requires an ICU stay).

We saw Orthopedics over the summer for her fused C2 and C3 and missing piece of her bridge in her C1 and though he said she looks really good, she’s not allowed to participate in any contact sports, do gymnastics, any sort of tumbling, no trampolines, or anything that would strain or put pressure on the neck. BUT it could be worse and we’re making the best of it! Thinking about starting golf lessons as soon as she can and maybe even Irish dancing and/or ballet!

We transitioned from Early Intervention to the Intermediate Unit, only keeping her teacher of the deaf and she still goes to school one day a week.

We’ll see Pulmonology in April and hopefully she won’t need another sleep study, but we’ll see. We just saw cardiology and they said she looks great! She was incredibly brave and good during her echo and EKG and was cleared for two years! She was also recently cleared by ENT for audiology so we see them next week to possibly talk about getting a hearing aid. And we saw OT (occupational therapy) to see if that would be an option to help her facial palsy- they think it could help so we’ve added some facial stretches to our daily routines. It’s been a busy couple of months to say the least!

Sincerely, Britt