Two Days Home + Hannah Evaluations

This past Saturday was lovely; haircut, Little Mermaid at Taft with Nora, then out for a friend’s 40th birthday dinner.

Little Mermaid was awesome. Way better than Snow Queen. Nora’s favorite part was the eels’ glowing tails. 

Had dinner at Sprout in Mt. Adams - I couldn’t even remember the last time I’d been in that neighborhood! At 11:30 party buses were dropping off hoards of drunk youths in costumes. It was nuts. 

I took Monday/Tuesday off to not only take Hannah to an appointment, but to organize my basement. The girls would still go to the sitter. Oh yes.

It was great - I was giddy getting those plastic bins at Target! Mainly I wanted to shift the girls closets; seasons + sizes. Just BIN everything up! I also piled up all the baby gear - goodbye! Hello space! Very satisfying. 

Monday AM was Hannah’s annual evaluation for Help Me Grow. A full house of therapists to ask questions and work with Hannah. She’s behind motor skills even for kids with Ds, but they and we know it’s due to the heart surgery setback. We just continue to work on strengthening those arms. 

We need to work on communication; learning basic signs and commands such as “Give it to me, Hannah.” 

Her eating and straw drinking improves. Hannah actually lifted a “loaded” spoon and ate it on her own! Everyone was very excited! We will continue to get her to eat on her own and try all foods with her. 

On Tuesday, we had a 10am evaluation at the Thomas Center [for Down syndrome]. 10am is a really awkward time; it’s Hannah’s second feeding then nap time. Ugh. Of course she fell asleep 10 minutes before we arrived and I sat in the back of the car in the garage to give her half a feeding before going in.

We didn’t see anyone until about 10:20am. The physician was very nice and didn’t have much to say since we’ve been on top of everything. I did bring up Hannah’s new fluttering tongue; I thought it was involuntary. It’s sporadic. The physician was concerned, but felt we should check in with a Neurologist. Great. 

During this consult, Hannah was tired and cranky with a cold - I knew she needed a nap. For the first time ever, she constantly reached for me and wanted to be held. Poor baby.

Closer to 11am, we moved to the large play room where I was asked questions by ST [speech therapy], PT [physical], OT [occupational], and a nutritionalist. I answered all their questions. They wanted to know if Hannah was always cranky with PT and thankfully the ST knows Hannah and could verify she was NOT herself; cried on her belly, cried on her knees, wouldn’t drink from her cup... it was frustrating and I just wanted to be done for Hannah’s sake.

The team felt we may need a swallow study to see if Hannah has anything preventing her from eating. She can sound phlegmy even when she doesn’t have a cold because it’s just sitting in her throat. 

“So who are you seeing with ENT?” Sigh. “No one. We haven’t had a reason.” What’s another appointment with a specialist, right??

We finally left and I felt deflated. I felt like we had been in a good groove... I dropped off Hannah by 1pm to finish my house work. I spent a good 45 minutes making more appointments [as well as for Ailo’s dental cleaning] and re-arranging double-booked therapies. 

A typical month of therapies/appointments.

I know it’s all for good and it won’t always be this way... it doesn’t help that she’s on her 3rd cold in about a month. 

We’ll manage!

Hannah’s Fluttering Tongue

Within the past two weeks, Hannah’s tongue has been sporadically fluttering. I hadn’t seen a connection to anything; hunger, sleepiness...

Until yesterday when I paid more attention and Tim and I thought - we think she may be doing it on her own - when she’s happy/content - ??

Nora’s tongue did it a bit when she was an infant ... it seemed to just be a reflex thing. Hoping it’s the same for Hannah.

*We did have a referral Tuesday from a Children’s physician to see a neurologist just to rule anything out. 

Hannah Updates

First, our sitter informed us she’s had Hannah up on her hands/knees for about 10-20 seconds a few times now! Was happy to hear this... I just feel like she’s really struggling with her arm strength. We all keep at it and I just thought maybe she’d be mobile by now... I’m hoping for some type of mobility at 18 months... we’ll see.

The bigger news is that Hannah just started drinking out of straw cups on her own! Woo hoo! I feel like this is a big step for her. Her eating is progressing, but just a bit... roasted potatoes are great - mushy with some thick texture and she actually swallows it. Fruit tends to not work - it just pops back out with her tongue.

Mmm Baby Mum-Mums! (She looks so old in this photo!)

One of the three speech therapists we’ve seen said she expects changes by 15 months - that’s the age when development starts to ramp up. Sigh. I hope there’s some truth to that.

Finally, we picked up the glasses this week! They have a band on the back to keep them on. Getting them on is a bit hard and Hannah gets mad - ! She does okay keeping them on for the two days we’ve used them. We think she can actually see better - she seems to be looking around more and intently. It’s interesting. We just hope it can help her left eye straighten out a bit!

Extended Family Visit

A few weeks back my Mom’s family had an annual picnic and due to our schedule and distance [almost two hours] from them, we rarely get up North. I was able to make it work, but knew Tim would appreciate the alone time to get stuff done. Don’t all parents? So he got a pass. 

It’s an all-day thing; traveling up, spending time, then traveling home. Worth it, though - it’s hard to keep up with 27 [?] first cousins and their kids - I admittedly can’t remember cousins’ kids’ names. It was a nice day and Katherine travelled with the girls and I. 

Beautiful day... Hannah’s eyes were unfortunately goopy as this was the first day [unknowingly] of our two weeks of viruses - ! Hopefully it didn’t pass to other family members. 

Mom’s family + spouses

Mom with her Mother + siblings

The girls with their Great-Grammy

The Cough That Didn’t End...

Wow, sick season came with a vengeance, eh? I’ve been told more than once that Tha Sickness is around Cincinnati already... our house is proof. 

The supposed 10-day virus that was supposed to wrap up last week... Nora kicked it, Hannah’s cough lingered. 

This past weekend was pretty busy which probably didn’t help things, we saw many people. 

Sunday we tried a 2nd time [1st time was a rain-out] to go to Shaw Farms... Nora didn’t seem like herself; very quiet, reserved.

We got home and both girls slept in the afternoon [!]. 

Nora woke up and was just not herself... and sluggish. Said her stomach hurt. 99˚ fever. She spent the rest of the day not saying a peep and laying on the couch. Went to bed around 7pm.

She woke up Monday saying her legs and arms “hurt” - achey? She didn’t have a fever. I thought I had a 10am meeting with a crunch deadline, so I made the decision to take the girls to the the sitter. Hindsight, they should have stayed home : (  Making those calls that fast before getting out the door sucks. I already take off enough times for Hannah, so if the girls aren’t super sick, they’re fine going to the sitter. 

Well, Nora wasn’t great and then later that AM my sitter called to say Hannah had a 102˚ fever - what?? Curveball! It spiked again that PM  to 103˚ while I was trying to wrap up work and get a pediatrician appointment.

I got to the girls around 4pm and headed to the Ped for a 4:30 appointment. The waiting room was a zoo - I’d never seen it that crowded; people sitting on the floor. It was warm in there and all I could think about were the germs floating around. 

We finally got back around 5pm. Hannah’s ears and chest were fine - “just” another virus to maintain symptoms. 

Monday made me feel like a crap Mom... I’m almost 4 years into this and I still second-guess myself all the time. I did not have that meeting nor pressing work on Monday; I could have stayed home ... but I didn’t know Hannah had another creeper. 

Tim stayed home Tuesday thankfully so the girls could rest. Nora was back to herself with a vengeance. Hannah’s fever hasn’t reared its ugly head. And I was able to sleep from 10pm-4am today which is a good stretch lately. 

I * think * we’re on the mend. 

Tiny Dancer

For those who don’t see Nora on a regular basis!

Sorry Mom, but I had to post this even though your lovely ballet moves are in it : ) 

Preschool Update

We’ve already missed two days of preschool due to two separate viruses - more about that later : P

This is all new territory to me so it’s fun opening her backpack folder to see what comes home.

And our first piece of homework! I realize homework basically goes downhill from here : )

Note: I’ve never seen Nora brush Ailo. 

Baby Glasses Here We Come!

Today was Hannah’s first eye appointment - another on the list of items for kids with Ds to check off their list : ) 

I was a little nervous; her left eye has turned in for as long as I can remember. Her tear ducts  are small and eyes can be goopy. I always wondered if she was able to focus on us too; it seems to take her a while to see who comes into a room. 

After 15 minutes of waiting, we went back and I answered her medical history. The nurse [?] checked out Hannah’s eyes while she sat on my lap. Dr. Motley came in, took a look, then Hannah got some dilating drops. 

We had to wait 30 minutes [!] until they called us back again. 

We had a super-entertaining wait; I think it was a Grandma and her Grandson... He was “jolly” and loud with a flat-billed hat, maybe seven years old. Grandma was all about Hannah; “Ooohhh she look like a livin’ DOLL! She don’t even look REAL!” Um... thanks?? Hahahaha! She just gushed over Hannah, I loved it. Later, as her and her Grandson were leaving, she waved him over to look at the “Dollbaby Girl.” 

The little boy came over, looked at Hannah and loudly said, “She don’t look like Chucky!” I could not control myself; I bust out laughing, “Well I hope not!” He went on a bit of a ramble about seeing Chucky in the store and running away, then telling me not to let Hannah watch Chucky and that she should only watch Disney Jr. ... it was a HOOT. Made my afternoon. 

Dr. Motley took another look at Hannah’s dilated eyes... 

In summary; Hannah’s left eye does turn inward and she has a bit of far-sightedness. To correct the turning, we’ll start with baby glasses! Which is what I prepared for and am totally fine with - not sure how Hannah will do with them - ?? In 6-8 weeks we’ll go back and see how her eyes are doing. If they are straightening out, all good, probably stick with glasses part-time. If not, we’ll do a patch over her strong right eye to let the left eye straighten out and strengthen. 

The glasses are flexible plastic with a band around the back:

Whew! So baby glasses - all good. Let’s hope it can help her out a bit. Surgery would be a last-ditch effort, but Dr. Motley didn’t see that as necessary - whew! Lord knows I don’t need another surgery - am I right? 

For your viewing pleasure: Hannah smoking a veggie stick. Don’t smoke, kids.