I'm finding less time to write my thoughts down, but I'm so forgetful and sleep deprived, that I think it's important to do, so I can look back someday and stir my memories up. These facebook/blog posts have served me well for processing feelings and organizing thoughts, as well as being so encouraged by the comments in response to Annelise updates. Thank you for walking through this with us! We are staying away from non medical outings, and it stinks to be back in town, but not able to go hang out with my friends and their kids. I love their kids, and I truly miss them! But kid germs are serious nowadays... I know Annelise will catch something at some point... but while she is so little still, the goal is to stay clear of congestion for as loooooong as possible!
Here are some updates!
Allergies: Now that Tiffany the cat is living her best life in Arizona with Jen, Annelise has had a big decrease in snot from her nose! I do think it helped to rehome our sweet kitty. I need to move the box on the floor in the hallway though, because out of the corner of my eye I always think it's the cat, and we miss her!
New allergies to cow milk protein and soy have shown up in the form of lots of tummy gas and diaper problems. I will take any perks that I can get from all of these medical devices... one perk is being able to hook up her feeding tube to "vent" her tummy, and let out the air bubbles!
She has had soooo many air bubbles bothering her though, that it was hard to get food into her, because so much was coming out of her through the tube that is meant to feed her! That's when we switched to soy formula... which seemed to make it a little worse... so now we are dairy and soy free... and seeing some improvement already! It has been a long weekend. Our night nurse called out on Thursday, so Kevin and I took turns napping and trying to comfort the gassy baby overnight 3 nights in a row. We were very thankful to see the nurse last night!
Home Nursing:
We have a possible daytime nurse! She came to meet us this morning, and seems nice and says she has experience with pediatric patients with trachs. Time will tell if she's a good fit to care for Annelise. She will start her first shift tomorrow, 7am-3pm.
Services:
My head is swimming with people to call back, services to advocate for, and forms to fill out for this babe! I have had some good role models while watching the moms of my kiddos with autism be the squeaky wheel that gets the services after a lot of work on their part. Not my strongest suit... but if I must change my personality and become a list maker in order to get stuff done and not lose my mind... well, hello check boxes and calendar that I actually write on! The things we do for our kids!
I have a kid! This is actually a very gradual thing that is sinking in😆 How many times have I started writing my mom's info on the doctors office forms when it asks for "mother's name".... it's ME, not Grandma!
Overall, when there are no tummy pains, our girl is a happy sweet little love bug! We have been working on tummy time when she feels up to it... it's so awkward right now with the trach and her lack of muscle tone, but little by little we will get there!
Pictures!
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