Hannah Updates!

Gross Motor Skills:

Well Hannah is straight up sitting now - before her first birthday! Yaaaayyy! Reaching this milestone is so awesome! I can’t sit her down and leave the room just yet, but girlfriend can stay up for a long time. 

We’re now working: 1. having her reach for toys at her sides to work her lateral core strength [check!] and 2. arm strength. Hannah can’t yet support herself with her arms while on her tummy, so we help her out and do exercises on adult exercise balls. 

I can tell she’s starting to support herself, but, again, it could be a bit of a long road. Arm strength is the next step to crawling. Hannah already pulls her knees up underneath her, we just need to put the pieces together. Today I had her arms up and she pulled her knees below and got MAD! I’m not sure which part hurt or was just too much work - ??

Fine Motor Skills/Eating:

Hannah had already started to grab and eat Baby Mum Mums which are awesome - just large, flat rice crackers that are easy to grip and melt in her mouth. She is now grabbing puffs and eats them whole. She can’t do a pincher grip, but rather palms them : )  Her chewing actions are really good. The bits of fruit/veggies seem to do well and the purees are still pushed out... I’ll be talking to Speech Therapy about these strange differences...

We continue to have speech therapy appointments... no one seems overly concerned - still - and this lesson in patience is a long one. How long will my baby get her nutrition through a tube? I imagine a year down the road if she’s still tube-fed and we can’t hire a babysitter because she’s tube-fed ... : (

Nutrition:

Lordy me. Typically babies would be off bottles and eating food by now. We have not achieved that. Yet formula is now behind us... Next step? We’re starting on Pediasure... First, it’s more expensive per serving than formula. Second, it’s a straight up milkshake with added nutrients. Granted, I know formula isn’t awesome. The first ingredient is brown rice syrup [sugar]. Pediasure is: water, sugar, etc. Ugh. I know my baby can’t eat, but I’m tired of giving her yucky nutrients. 

First, the Cardiology Nutritionist asked HOW we were getting our formula. “Um, Kroger?” She said she thinks we could have had some of it covered by insurance since it’s a medical need. GREAT - thanks for letting me know that eleven months ago! This Nutritionalist is new, so now she’s going to look into getting our Pediasure covered... fingers crossed: a 6-pack is $12 and Hannah would “consume” about 3 a day - !! 

On the side, I’ve asked about a whole-food option. There is; we have to be referred to the Feeding Team at Children’s. It’s a recipe of whole foods plus sugar, oil, etc. It’s obviously more work, but I just want Hannah to get real food. On top of this, I need to call our insurance to see if they’ll cover a blender - ! We don’t have one and if formula could HAVE been covered, I’d think a blender could be for medical purposes. 

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So things are going very well here... Hannah is doing great and it’s just continuing her therapies... She’s doing great!

Milestone Nearly Reached!

Tonight after dinner, Tim had Hannah on the floor and was practicing her sitting... she sat unassisted for about five minutes!! Yay Hannaahhhh! 

It’s so interesting experiencing a typical baby’s milestones versus a baby who is a bit delayed; what you took for granted now feels like an even bigger deal with Hannah. I try not to keep tabs on the typical babies her age who are already standing and walking... I mean, that was Nora! We are taking huge pleasure in Hannah as her own person today.

In addition, she’s started to really get the hang of “chewing” - she’s swallowing more food bits. My Mom had the girls this past weekend and even she noticed the difference. 

I really have to hand it to my amazing babysitter - without her and her kind/open heart and dedication to our girls, I’m convinced Hannah wouldn’t be nearly this far along. 

Perhaps she’ll meet our “goal” of really sitting by one year old : )

*Also, these photos show the chaos of a weekday post-dinner blur. Literally.

Words & Language

Sticks and stones? Sometimes words can sting.

I feel like I’ve written about this before, but those words/language have been popping up again.

I’ve caught a few of our medical professionals lately saying the term “Down’s babies” or peers who say the same phrase. It rubs me the wrong way. I’m still not sure whether to correct people or not. The medical professionals are who surprise me most - I just assumed they were trained in people-first language - ?!

Most of the community in North America winces a bit at “Downs baby/kid.” Would you call someone an “ADHD baby” or an “Autistic kid?” Probably not - they are still a baby/child - with a name! - who happens to have a condition. Like I’ve said; conditions do not define a person. It is a characteristic.

I’ve also read literature about “our kids with disabilities”... I know Hannah will learn gross motor skills a bit slower and may not be cognitively up to speed with her peers, but I truly don’t see her as “disabled.” She’s very able-bodied, just taking a bit longer to hold her head up, roll, and sit. 

I’ve mentioned before that the words “normal” and “healthy” have a new meaning to me. “I just want the baby to be healthy.” You mean without Ds or an organ defect like my baby? Shoot, I know I’ve said the exact same thing. I listen to people say, “Thankfully the baby didn’t have a genetic disorder...” My immediate thought is, “What - thank goodness that baby isn’t like my Hannah? Is Hannah NOT normal or healthy?” I can’t help it - Mama Bear bristling and protective of her baby. But I do know; everyone wants a “healthy” child. No one wants their child to have a condition to hold them back. 

I know intentions are never bad, nor directed. It’s just hard not to be sensitive to certain words and phrases that have underlying meanings. Though I’m sure most times people don’t realize it. I try not to be overly sensitive and don’t want people walking on eggshells with their words. I think Tim is probably way better at shrugging it off than I am. 

I also sometimes find myself with slight resentment - ugh : (  I hate it. I don’t want to feel that way. Not even from the Ds diagnosis - it’s more from not being able to really hold/snuggle for those first 17 days, not being able to nurse for medical reasons... All those picture-perfect images you imagine and see with a newborn. Those moments I gratefully did experience with Nora. 

We’ll have constant hurdles for Hannah. Eating. Walking. Schools... ugh, I can’t even think about the schools yet...

Well that was some rambling, eh? Sometimes you just need your train of thoughts out! 

I do have an awesome life! And so does Hannah, Nora, Tim AND Ailo! : )

Follow-up Echo: Post Heart Repair

Tuesday we had Hannah’s post-surgery sedated echo. This has been I think her 4th echo, 2nd sedated. The morning went very smooth and we were out earlier than we thought - win!

The anesthesia was given through her G-tube and she was asleep under 10 minutes. It was during her nap time, so that probably helped a bit. 

Waiting around 7:30am!

Again, the trippy lights to help kids asleep - !

More trips lights and calming “fishbowl” on TV.

While Hannah was asleep, I asked the sonographer and RN about her chest because its healed up a bit pigeon-chested, sticking out a bit. They both looked at me like I was silly - ! “Oh she looks great! We almost couldn’t tell she’d had a repair. We’ve seen kids heal much worse.” - ! Okay, well that eases my mind a bit. 

EKG while she was still asleep. Those are fast and easy.

You can’t leave the room until you force your child awake - ugh! The nurse SAT Hannah up and was tickling her neck, etc. I realize it’s for safety reasons, but who wants to wake a sleeping baby?? She woke up and acted like a drunk baby. Not kidding - it was funny/weird.

We made our way into an exam room to follow-up with Hannah’s Cardiologist. Nutrition came in first because I’m just not sure about Hannah’s “diet” - All. Formula. We’ve had two more speech therapy appointments with some slight tricks. We’re using puffs, thickened purees, Baby Mum Mums and yogurt melts. Anything and everything. Basically Hannah is pushing everything out with her tongue - she hasn’t learned to push food back and down. Everyone keeps saying “It will click...” It’s been 3 months of practicing. Talk about a lesson in patience for one of life’s most necessary skills : (

I digress - Hannah’s Cardiologist said Hannah’s heart looks great and we can come off her final medicine [blood pressure] next week! Woo - hoo! One less thing! We won’t need to see him again for 6 months - that’s a long time based on Hannah’s history. 

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In more fun Hannah news, she’s crazy rolling now, pushing her butt into the air while on her back and babbling a lot - we’ve got some “Da-Das” - yay! Her core is getting stronger so we’re not sitting yet but we’ll see if we make our 1-year goal : P