Giving

After having Hannah and all our experiences with DSAGC and Cincinnati Children’s, I have a strong desire to give back to those who took care of us. 

Thankfully there are many ways!

Not all families can keep up with the needs of their children with Ds - DSAGC accepts donations all year, but specifically during the holidays they have Giving Tree:

Giving Tree

So after our awesome Buddy Walk donation through our family and friends, I donated more for this season. 

Second, you can do something as simple as buying toys for the children who are at Cincy Children’s for an extended time:

Cincinnati Children’s Gifting

Cincinnati Children’s Wishlist

I might not be able to give a lot, but if a few toys can bring some cheer to those who have weeks if not months there, I’ll do what I can!

I’m a grown up with a steady income, so if I need something, I just buy it. I’m stubbornly practical and don’t need gifts - so Tim and I felt so good helping people who really need cheer this season!

One of Hannah’s stays: Child Life brought in a mobile and crib attachments to keep Hannah entertained.

Slight Eating Success?

Tim took Hannah to a double therapy session on Friday; PT [physical therapy] and ST. [speech therapy]. He said she had a great day!

The PT noticed Hannah is stronger in her core than last visit [she can stretch/bend while sitting all the way to the floor]. 

Hannah did very well with ST, too. The ST actually suggested holding back a feeding per day to make Hannah hungry. My immediate thought was, “Well the doctors will LOVE that [sarcasm].” But it makes sense.

SO - Saturday it just happened that Hannah fell asleep in the car close to 10:30am - when she’d typically have a feeding. When she woke up, she had a snack and her “smoothie” at 11:30 - so basically we pushed her feedings out and she only had two afternoon feedings. 

We had dinner at a friend’s house and Hannah was hungry and we were astonished at how much she ate that didn’t come out; probably 1/4 cup of food in one sitting - that’s crazy for Hannah! Mashed taters for the win!

So maybe this skipping a feeding is the key?

I tried it again today... it seems to work. At dinner she was shoving bread pieces in her mouth and kept opening her mouth for beans. 

If she’s getting her calories from this extra food that’s staying in, it should balance out calories she’s “missing” from her smoothies. 

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Tim and I reviewed the reports from Hannah’s Thomas Center evaluation... it’s hard reading about your delayed child... especially when she’s even delayed among her peers. [And they report that way to make sure insurance covers therapies!]

There are little ones younger than Hannah with Ds who are even standing on their own. It’s not easy. You can tell me “Hannah will get there in her own time” until you’re blue in the face - it doesn’t make it any easier for me. 

I truly don’t think of her Ds on a daily basis. When I get sad about her delays, I “blame” it more on her stomach and heart defects - I feel like those are the hurdles that have made it more difficult for her at this point. 

But darn it, she’s still the cutest 14-month old I know!

Our Fuzzy Buddy

There’s never much to say about Ailo because... he's so easy! We rescued him on St. Patrick’s Day, 2010. He’s a mix of more than 7 breeds but most resembles a flat-coated retriever with brindle pattern. Pretty boy : )

He’s been a patient of Banfield [at Petsmart] since we had him. Since he’s mixed breed, he’s been very healthy [knock on wood] and within the past 2-3 years we only get dinged on his teeth. We tried dental treats [$$] but they just didn’t do the trick. 

So of course we were convinced to up our health plan on Ailo which would cover a dental cleaning. 

This first dental cleaning - in six years - was this past weekend. I took him in at 7:30am. He had to go under anesthesia. He was up around 1pm and they monitored him for two hours after. 

As soon as Tim brought him home I could tell the poor dog was out of it. He’s the happiest, goofiest dog I know and poor guy hasn’t lifted his ears, hasn’t had a happy pant... I’m sure the anesthesia takes time to wear off and his mouth is probably sore. 

We got him some soft treats because he won’t touch his hard food. Banfield said he’ll be this way for up to 24 hours... hopefully poor buddy shakes it soon, it’s hard seeing your fuzzy love so unhappy. 

At least his tail is still wagging, but his whines are hard to hear : (

* Fist Bump *

Nora asked me to read the note in her backpack this evening. I almost choked up! 

This is what makes all the tantrums, attitude, sass, and frustrating times worth it:

Just as Thankful, Just as Blessed

Things here have been GOOD. Even with slight runny noses and a busy schedule, we’re really good!

Tim and I went out twice [what??] in the past three weeks with friends. We were able to celebrate Tim’s 40 1/2 birthday since Hannah was in heart recovery on his 40th back in early May.

This winter will be a lot less anxious and stressful than last winter trying to prepare for heart surgery!

The holidays will be relaxing and I won’t be pumping! Woooo!

While many express their thankfulness and “blessedness” this season, I still feel a bit sensitive when others express comments about their children’s health ... Someone pinpointed my feelings well: I feel like a measuring stick to others. “Gosh, thank goodness I don’t have to deal with THAT.”

Just because my child isn’t typical or has medical hurdles and special needs doesn’t make me less thankful or grateful for what I have. Anyone with a child is blessed, no matter how much or little medical help they need. I’m just as #blessed as the rest.

...which I know is unfair and nearly never the case. Everyone is simply happy about their own situation. I admit I compare our life to those who have it harder than us [which is not hard anymore!].

I think we’ve just been through so much the past year and a half and I’m still haven’t shaken the “Why us?” My personality type is just to compare which I dislike... I can’t help it! “Comparison is the thief of joy” - this quote is seared in my brain now!

I also want to get better at gratitude.

I’m truly grateful for everything we have... I just need to get a little better and practicing it : )

“Grumpy” Nora

She can’t stay grumpy!

Halloween bowtie from Aunt Molly!

Hannah on her first wagon ride!

Hannah’s Neurology Appointment

Just to get it out of the way: we are in the clear with Neurology - which my gut had told me.

Hannah’s tongue had started quivering in the beginning of October... we thought it was involuntary. Then we observed she did it when she was happy/content. We’d seen 3 different speech therapists and an ENT who all dismissed it as a developmental “thing.” One pediatrician suggested we just go to Neurology to check all the boxes. 

They asked a lot of questions about behavior and development, when her tongue quivers happened. I even had video to show. 

The Neurologist was an older gentleman and after poking her and observing her, said “I don’t know what this is.” - !! For real?? I can’t believe he’d never seen something like this. Since she has no other symptoms/signs/behaviors linked to a neurological anomaly, he basically let us go and said to contact them if anything evolves! 

So I left happy knowing it’s one more appointment OFF our list and taken care of. 

:: thumbs up ::

Sad Story [not our own!]

I don’t listen to country music. I’ve never heard a song by Rory & Joey, but have followed them since Hannah was born because their daughter - who is 6 months older than Hannah - also has Down syndrome. 

Unfortunately, Joey was diagnosed shortly after Indy’s birth with stage 4 cervical cancer - they thought they’d rid of it, but it came back with a vengeance and she is currently in Hospice care at age 38. 

I think the reason their story makes me come to near tears every time I see a headline [as opposed to so many others I know who battle] is because I feel a connection with her having a young daughter with Ds. Which seems simplistic, but I don’t know how else to explain it. The photos of Indy resting on her Mom in a hospital bed don’t help the emotions stay down!

Joey & Rory

Oh Snap! Sick Mama!

I cannot remember the last time I stayed home sick from work... December 2012? 

Sunday night my stomach was upset - uck. 

Woke up Monday and things were Not. Right. I barely managed to get the girls to the sitter. I had already showered and dressed for work and drove straight back home to tell them my status. 

Nauseous/upset stomach, achey, chills, and... “bathroom trips.” It was rough. I was so thankful we have such a great caregiver so she could take care of the girls while I laid in bed to restore myself. I took two naps! Two! The last time I took a nap I think I was pregnant with Hannah! 

I couldn’t believe how bored I was! Typically when I’m home I’m cranking through house projects. Not yesterday; I could barely muster the energy to get upstairs to bed! Though I won’t lie; some catch-up on magazines and HGTV was pretty awesome.

So by dinner time I was feeling better, able to make dinner and tidy up a bit. I knew I was feeling better when I started cleaning the kitchen sink - ha! 

As I thought, it was a 24-hr stomach thing. Blech! Thankfully I could stay away from the girls and pray I kept my distance long enough so no one catches it! 

I felt like a million bucks this AM - back at it! 

Halloween 2015

After 3 years here, I finally realize I only need one bag of candy to hand out - can you believe it? I’ll take it. Makes for a chill evening! Nora only went to about 5 houses. Since her bucket is small, it filled up fast with mac-n-cheese, animals crackers and toys! 

Nora was Minnie Mouse for school, became a ladybug for beggar’s night and Hannah was simply a kitty. 

I'm all about using last year’s costume!

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!