Weight: 40 pounds!
Height: She's so tall now! She's 3'6" and growing like a weed it feels like.
General Health: She's averaged a cold / month since preschool started back, but - BUT - she's only needed antibiotics for three of those 5 colds! Prior to this year, she's NEVER gotten over a cold without a long, lingering sinus infection and a healthy round or two of antibiotics. Being able to use cold medicine has been a game changer for us! We're in the thick of sick season (read: Philip and I aren't sleeping much or well, always waiting for the next crisis) so my mommy spidey senses are on overdrive trying to catch the first signs of a germ invading our otherwise happy days. As you all know, this flu season is not being kind, and we're on cleaning overdrive to keep ourselves and the house germ free. We're not in full on lockdown.. but it's pretty close. We've skipped Little Gym this week, OT was canceled (our OT was sick), and as much as we would love to play with friends, we're staying close to home. Last February was so so bad... we're praying and doing our best not to repeat it. PTSD is real.
General Health: She's averaged a cold / month since preschool started back, but - BUT - she's only needed antibiotics for three of those 5 colds! Prior to this year, she's NEVER gotten over a cold without a long, lingering sinus infection and a healthy round or two of antibiotics. Being able to use cold medicine has been a game changer for us! We're in the thick of sick season (read: Philip and I aren't sleeping much or well, always waiting for the next crisis) so my mommy spidey senses are on overdrive trying to catch the first signs of a germ invading our otherwise happy days. As you all know, this flu season is not being kind, and we're on cleaning overdrive to keep ourselves and the house germ free. We're not in full on lockdown.. but it's pretty close. We've skipped Little Gym this week, OT was canceled (our OT was sick), and as much as we would love to play with friends, we're staying close to home. Last February was so so bad... we're praying and doing our best not to repeat it. PTSD is real.
PT/OT: We've just started PT back after a lengthy hiatus. Her Little Gym time has sort of worked like PT but in a more fun, less structured way, but it's time to dig in and really focus on some of our lingering gross motor challenges (stairs, we are going to master you!!!). OT is still going really well! We adore Ms. Megan! We've been doing lots of Hand Writing Without Tears to get a jump on handwriting for kindergarten next year - it's slow going, getting that motor planning and coordination to click, but slow and steady wins the race! We're doing a little less sensory work since Addie has been doing so well in that area. Truly, most of our OT time looks very kindergarten-y as far as writing, counting, learning letters and numbers! It's really, really neat to watch her learn and really, really crazy to think our little 1.5 pounder is this big person now.
Speech: She's doing so, so well! We're mostly just maintaining and tweaking at this point, making sure she keeps up as her peers are naturally learning and growing so that she doesn't fall behind. Feeding - I don't want to jinx it, but.. she's killing it! I can actually tell a difference on days when she's not hungry / not feeling well versus your average day - meaning, I can tell when she's hungry! And because I can tell when she's hungry, I can follow her cues and feed her less on the days she's not as hungry and more when she is. I can trust her body to let her know more and more what she needs!! This is HUGE! It's really the biggest part of the battle (minus everything else we've conquered) because hunger is now a motivator. So, basically, every day, she's eating all of her calories. Not in appropriate for her age food, but she's eating it! Lots of peanut butter, baby food pouches and apple sauce pouches, Kraft cheese slices and some good old Chef Boyardee are our mainstays. Oh, and popcorn. ALL.THE.POPCORN. There are no less than four gallon bags of partially eaten and now stale popcorn in my car at this very moment (Philip, I'll clean them out before you get home...promise). She even eats at school now! Just a snack, but... she's eating at school! A slice or two of cheese and some ritz crackers/a crescent roll/popcorn. The carb changes each day, but cheese is our protein/fat of choice. She's drinking more but still not enough, so we'll keep working on bumping up her volume there. She'll keep her tube until she can eat and drink everything by mouth for several months AND get through a sickness without needing the tube. So... there's a light at the end of the tunnel, but we won't get there until she tells us she can do it. I learned a looooong time ago that it does no good to push her before she's ready. We'll all live to regret it. So, I respect her body and what it can / can't do. She'll get there but on her own terms.
Neurology: We're still plugging along on her original seizure medicine (Keppra) but at what feels like a crazy high dose. She metabolizes it faster than most people, so she gets a higher dose - it seems to be working if you compare last winter with this winter so far (knock on wood!!!!). She had a seizure in September and again in early December, but so far this year... we won't speak of it. If you spend any time in a hospital you know, you never speak of how things are going unless you want to see them tank. ;) We adore Dr. Van Poppel - she's so great with Addie and she puts her quality of life first, which is what any parent wants to see. She's more than worth driving to Charlotte every 4 months or so. I can't recommend her highly enough!
Eyes: Her eyes still look pretty good!! We know that she'll eventually need surgery to tweak her left eye, but her ophthalmologist doesn't want to do that until she feels like she has no choice. For now, Addie compensates and corrects her eye when it wanders - except when she's tired. So, even if she insists she's NOT TIRED... her eye gives her away every time. It's cute and pitiful and sweet all at the same time.
Hearing: We have been discharged by her ENT and are just doing hearing checks with an audiologist every 6 months! The bad news with hearing is that it can still change / disappear with no clear reason, so we have to keep tabs on it, but, for now, we're stable.
Addie loves: The "obstacle course" at The Little Gym! Our sweet girl who can't keep her balance standing still, LOVES the balance beam and doing flips on the mats and doing flips over the uneven bars (all with lots of help, but still!). It makes my heart so so happy to watch her!! She loves her teachers there and her friends. She loves watching British cartoons these days: Peppa Pig, Hey Duggee, and a couple of others. It's pretty cute, and bonus is that I love British humor, even in cartoon form! She's still obsessed with Skye from the Paw Patrol and is already planning her Shimmer and Shine birthday party for the end of May! She loves rolling her Blaze and the Monster Machine trucks all around the house, arranging them in "patterns" and making them jump down the step in the kitchen. She also loves going to eat in restaurants (mostly because she gets to watch Philip's phone after she eats all of her food when we go out) and she loves going to visit "Daddy's Charlotte Work House" aka going to stay in a hotel (Daddy's work-house when he travels to Lexington) in Charlotte for her neurology check ups. She also loves going to her eye check ups and always asks to stay with Dr. Schmitt (she's so sweet with Addie AND she uses toys as part of the exam #winning). She also loves holding hands! It's the sweetest thing, especially since she's not a big cuddler. She may not snuggle, but she'll hold your hand all day long. <3
Addie DOESN'T love: Following directions or waiting her turn. Ugh!! But.. typical kid problems! So, I'll take it. Except when it drives me crazy. ;) Having her screen time limited - which is hard this time of year when we're stuck inside more than ever. I get it. No one wants her to have all the screen time more than I do.. but it also makes her a monster just like it makes any of us if we watch too much TV or iAnything. So, limiting screen time. What doesn't kill us makes us stronger. She also doesn't love crafting at the moment and it makes my heart sad... but, that's ok! I'll keep trying and win her back over to the crafty side eventually... ;) She's also still leery of office buildings and anything that looks like it "could" be a doctor's office or a school... she's so much better anxiety-wise than last year, though, and I'm really proud of her!
Addie loves Ms. Megan and spinning in OT!
Eating her first peanut butter sandwich!!! She's slowly eating more appropriate foods..
Neurology: We're still plugging along on her original seizure medicine (Keppra) but at what feels like a crazy high dose. She metabolizes it faster than most people, so she gets a higher dose - it seems to be working if you compare last winter with this winter so far (knock on wood!!!!). She had a seizure in September and again in early December, but so far this year... we won't speak of it. If you spend any time in a hospital you know, you never speak of how things are going unless you want to see them tank. ;) We adore Dr. Van Poppel - she's so great with Addie and she puts her quality of life first, which is what any parent wants to see. She's more than worth driving to Charlotte every 4 months or so. I can't recommend her highly enough!
We try to make the most of our Charlotte trips: shopping, Maggiano's, and coins in the fountains!
Eyes: Her eyes still look pretty good!! We know that she'll eventually need surgery to tweak her left eye, but her ophthalmologist doesn't want to do that until she feels like she has no choice. For now, Addie compensates and corrects her eye when it wanders - except when she's tired. So, even if she insists she's NOT TIRED... her eye gives her away every time. It's cute and pitiful and sweet all at the same time.
Hearing: We have been discharged by her ENT and are just doing hearing checks with an audiologist every 6 months! The bad news with hearing is that it can still change / disappear with no clear reason, so we have to keep tabs on it, but, for now, we're stable.
Addie loves: The "obstacle course" at The Little Gym! Our sweet girl who can't keep her balance standing still, LOVES the balance beam and doing flips on the mats and doing flips over the uneven bars (all with lots of help, but still!). It makes my heart so so happy to watch her!! She loves her teachers there and her friends. She loves watching British cartoons these days: Peppa Pig, Hey Duggee, and a couple of others. It's pretty cute, and bonus is that I love British humor, even in cartoon form! She's still obsessed with Skye from the Paw Patrol and is already planning her Shimmer and Shine birthday party for the end of May! She loves rolling her Blaze and the Monster Machine trucks all around the house, arranging them in "patterns" and making them jump down the step in the kitchen. She also loves going to eat in restaurants (mostly because she gets to watch Philip's phone after she eats all of her food when we go out) and she loves going to visit "Daddy's Charlotte Work House" aka going to stay in a hotel (Daddy's work-house when he travels to Lexington) in Charlotte for her neurology check ups. She also loves going to her eye check ups and always asks to stay with Dr. Schmitt (she's so sweet with Addie AND she uses toys as part of the exam #winning). She also loves holding hands! It's the sweetest thing, especially since she's not a big cuddler. She may not snuggle, but she'll hold your hand all day long. <3
They get cute little stamps after her gym class, and this day, she made sure I got one, too!
Addie DOESN'T love: Following directions or waiting her turn. Ugh!! But.. typical kid problems! So, I'll take it. Except when it drives me crazy. ;) Having her screen time limited - which is hard this time of year when we're stuck inside more than ever. I get it. No one wants her to have all the screen time more than I do.. but it also makes her a monster just like it makes any of us if we watch too much TV or iAnything. So, limiting screen time. What doesn't kill us makes us stronger. She also doesn't love crafting at the moment and it makes my heart sad... but, that's ok! I'll keep trying and win her back over to the crafty side eventually... ;) She's also still leery of office buildings and anything that looks like it "could" be a doctor's office or a school... she's so much better anxiety-wise than last year, though, and I'm really proud of her!
Prayer Requests:
- Continued progress in her gross motor skills - stairs, jumping, and overall balance are still biggies on our list right now.
- That something will click and she'll start drinking more and more and more.
- Health. We're in the thick of a nasty flu season, and I'm so scared a big sickness will derail all of the good things we have going on. We've been so blessed so far this year... I just would love to see it continue.
- Wisdom as we are barreling towards kindergarten! We have LOTS of decisions to make between now and next fall, and our girl never fits an existing mold, so we're going to have to create something that will meet her where she is, while setting her up to continue to grow and succeed. We have an IEP to update, homeschool coops to visit, a great public school to talk to and we covet your prayers as we sort through a big transition year.
In the meantime, here are some more pictures!
This link should take you to the Little Gym's Facebook page, and if you scroll down, you'll find a quick little video they did of Addie! Addie Little Gym Video
Since it's sick season, we're talking a LOT about how we feel, does anything hurt, etc.
Dr. Addie in training!
Practicing letter identification and fine motor skills - and having fun!
She's becoming a big helper these days!
Lining up all her toys.. there are "parades" of toys all around the house (watch your step!)..
Working on the bar for their midseason show!
Holding hands.. we get to see who all the helpers are in all of her classes..
They always find her and do their best to help her balance, climb, etc.
That's just dust in my eyes..
This link should take you to the Little Gym's Facebook page, and if you scroll down, you'll find a quick little video they did of Addie! Addie Little Gym Video
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