Today we celebrated my mom because it's her birthday!
Annelise has also been working on some new skills😊
She seems happy and playful, even while the VP shunt in her brain might not be working as it should.
Her neurosurgeon alerted us that her last MRI showed her ventricles have gotten bigger... which raises the question of why are they bigger? She will have a shunt study done to find out if her shunt is malfunctioning, and if it is, a little brain surgery will be scheduled. Will keep you posted!
Happy Halloween! We somewhat participated this year and left out a few buckets of fidgets and play-doh for the trick-or-treaters 🎃 I'm still a little too sleep deprived to trust myself to make good choices with a plethora of candy in the house... so toys for treats it is!
We are on Disney Princess #4 here. FOUR!🥳🙌 My favorite part of her costume this year is that we really did lose one of her Cinderella slippers somewhere between the pediatrician and the house!🤣
She tolerated her costume and yarn hair this year.... but definitely showed us with her real smiles right after she changed out of her costume that she prefers her t-shirts to dress-up clothes!
Around this time is when we bring out the pumpkin pants and cuddle up with the Nebraska pillow that we bought in the hospital gift shop. 🥰
We got here one day at a time from those days of wires and lines and tubes and sensors. By God's grace, we will praise Him for all of our days! Look what He has done here🎉
Yesterday was the 3rd anniversary of Annelise coming home from the hospital for the very first time!🥰
Here are some quotes from my past posts on this day:
10/2019 - Thank you Jesus, Amen.
10/2020 - "Tired and exhausted and ecstatic for each day we wake up to this sweet face. Thankful for the never ending love of our God, and for the encouragement from our people in all our hospital and home adventures."
10/2021 "There aren't words to truly describe how I feel being her mom, so I'll use terrible grammar to make my point... being her mom is the most hardest.... and at the exact same time, the most best incredible ever thing in the world times ten. It isn't like some days are hard and other days are wonderful. The feelings go together, all the time."
I see Annelise all day, everyday... so her gradual growth sneaks up on me until my jaw drops at seeing the ways she has grown since that first year! 🥰
Yesterday Annelise was pretty miserable, but throughout today her rash has significantly faded. And she kept nearly all her food and water down today! That's a big win, and it is soooo nice to see her more playful. We put some aloe from a plant that my sister gave me on her from the fridge. She wasn't sure what to think of that!😆 Sensory play and cool off the hives at the same time😁👍
We're having a bit of a struggle today. I'm hoping a good night's rest will bring calm to Annelise's body. We've been on the hunt for the culprit behind the elevated heartrate that has stuck around, off and on since we went to the ER last month! Bloodwork finally showed that our sweet kid is anemic, and her thyroid stimulating hormone is way high.... both things that have been well within normal limits for much of her life, so we have high hopes that Annelise can return to her baseline and all the smiles will return too! She has been quite a bit more serious lately. I wouldn't mind a bit if she had a serious personality.... but she's known to be a cheeseball, so her lack of smile makes me think things don't feel quite right for her❤
That's not even the big issue that overtook Monday though. We started Annelise on an iron supplement 2 days ago, and last night she started to get a red rash around her neck. This morning there have been big splotches that disappear and then show up on other parts of her body, all day long. She seems to be having an allergic reaction to the iron supplement! She was having a hard time keeping down any food or water, puke galore, so we were about to pack up and head to the ER.... when we decided to wait a little bit and see what the next round of benedryl would do... praise God she was able to keep little amounts of pedialyte down, and it continued for the rest of the night, so she is well hydrated! Thank you Jesus! Also wonderful news that she has been breathing just fine, but she has been so uncomfortable and in a benedryl fog all day. I just want her to feel better!
Our weekend was so fun at home together, it's weird to think that was just the day before all this started! We'll be looking to add more iron rich food to her diet and foods that help the body absorb iron too. This is where having a gtube really makes life easier. I fed her water slowly all day while she slept. Meds went in without her tasting them, and it doesn't matter if the iron rich food tastes good at all, because it will just be blended up and put through her tube! I'm extra thankful for the people who worked
