Hannah & Preschool: Part 3

Monday was a busy Hannah day - all for good. 

At 8am we had our final Help Me Grow appointment with our coordinator and PT - the two we’ve spent the most time with. They’ve helped Hannah since she was an infant! We gave the two women a Hannah Banana shirt and a note thanking them that had photos of Hannah growing up. 

I teared up a bit saying farewell. Hopefully not the last time we see them - I promised to update them with how Hannah does in preschool. 

Which was our next appointment - 11:15 at the preschool to go over Hannah’s IEP (Individualized Education Plan). 

In the room with Tim and I were the school psychologist, director, two Help Me Grow reps, the ST (the PT and OT could not make it) and Hannah’s teacher, Ms. Booth who seems super sweet. 

Her IEP is fairly straightforward - preschool level development. PT includes learning to jump and managing stairs up and down without holding an adult’s hand. ST includes two-word phrases and expressive communication. OT includes following through with tasks like a 4-5 piece puzzle. 

Ms. Booth took us to her classroom where we saw Hannah’s name on a cubbie. That’s when I nearly started crying - ! Reality is setting in. 

Because Hannah is on an IEP, she is allowed to be picked up and dropped off by the bus at our sitter’s house (this was not an option for Nora in Kindergarten). This is incredibly helpful because I’m not sure with all the schedules we could have done anything else. She will be picked up at 8:50am and dropped off at 11:48am. I wonder how tired my little boot will be??

She’ll ride a full size bus which has 5-point harnesses in. I believe an aide rides the bus to assist kids who need help. If I remember correctly, even a typical kid has trouble getting up those huge bus steps!

I’ll come in late to work that morning to see Hannah onto the bus. I’m already anticipating bawling my eyes out - my baby!

Hannah & Preschool: Part 2

*I never posted Part 1 - it was essentially the preschool Psychologist coming to our home to get general information and let me know the process of how to get an IEP and the steps we’d be taking to evaluate Hannah.

This morning we took Hannah to the preschool to be observed. We sat in a classroom while the school psychologist asked us questions - mostly behavioral/communication. There was a teacher, an OT, PT and ST in the room to play with Hannah while they observed her, took notes and asked questions. 

It was a good hour - Hannah loved playing with them all and checking out the room. 

They all enjoyed her. Hannah waved bye and asked for hugs. The teacher even said, “We may have to fight over this one,” - as if she wanted to keep Hannah in her class : ) (Hannah does not have a teacher assigned yet)

So we are excited but nervous. Hannah will love school! It’s just hard to see my little nugget out of her safety bubble; home and the babysitter! Thankfully we know many other parents whose kids with Ds attended and loved it. One little girl has already been attending and Hannah has a friend, Joe, who is her age and enrolling, too. So we’re glad we have our network! 

On Aug 28th, we’ll say goodbye to Help Me Grow - I will bawl. They have been with us since nearly Day One and I’ve leaned a lot on them. Early Intervention is “only” for three years. 

That afternoon we’ll go to the preschool and write out Hannah’s IEP (Individualized Education Plan). 

So many changes!

Nitpicking

Of all that is holy in this world, I never, never, ever wanted to deal with lice. Now I have. I lived - barely.

*This is a long saga, so get comfortable.

Last Tuesday evening - just as we’re getting back into the swing of routine after our busy two weeks, Nora was laying her head on my lap and I randomly combed my hand through the back of her head. I saw them. Them. Lice. Absolutely minuscule bugs chilling in my child’s hair. And eggs.

I pride myself on a clean house. Bugs don’t really bother me. Bugs in my child’s hair freak me the hell out. I knew not to freak out in front of Nora so I silently screamed at Tim and he ran out to get a lice kit. Specifically, we got Nix Ultra - which claims to kill both lice AND nits (eggs).

We didn’t even think or question and immediately doused Hannah’s head first - only because it was already her bedtime. I found about 5 (now dead) lice on her head. No nits. I kept Nora in the kitchen and threw a tarp down ( I didn’t know what I was doing ). Doused her head with the treatment and waited the 10 minutes while frantically texting a college friend who had been through this twice.

Once Hannah was asleep, Tim started stripping beds, throwing stuffed animals in garbage bags (either wash them or seal them for 3 weeks). Vacuuming furniture, spraying mattresses...

The directions said to next shampoo. Then we got to combing. Each swipe of the comb had some dead lice. I was horrified. HOW could I have let this slip by - and for how long??

Armed.

Give me a flipping break - that Mom ain’t smiling, dummies!

In early June, Olivia, who is watched by our sitter, unknowingly brought lice into our sitter’s home from camp. When we returned from vacation, end of June, our sitter said they had battled lice in their own hair. So I thought it was resolved. Shame on me for not even checking Nora! Not only was Nora infested, but we gave it to the sitter and her daughter again : (

Tuesday night I combed through Nora’s hair from about 8:30pm until she fell asleep on the living room floor at 11:15pm and I finished up in tears of exhaustion and lower back pain at 11:45pm. Then we vacuumed the floor and I tried to go to sleep at 12:30am. And of course Hannah wakes up at 1:30am. She went back to sleep and I think I finally calmed my head by 2:30am. Only to have Hannah wake up at 5:30am.

Needless to say I was a zombie on Wednesday. Tim and I took off work to keep combing through Nora’s hair and clean the house. I did two more comb-throughs of her Wednesday and continued to find a few nits.

Thursday the girls went back to the sitter and Thursday night I still found nits. The reason I’m the only one checking her head is because the combs in those kits are nearly worthless and Tim doesn’t have long fingernails. Those combs do not pull nits off hair strands - I was finding and pulling by hand! *Nits don’t just flake off in your hand - they stick to the hair stand, so you have to scrape it down/off the strand with your fingernail - or a professional comb.

My nerves had had enough and the weight of just ME finding and ridding all the nits was too much. I made an appointment at Lice Slayers on Friday at 4pm - the earliest we could get in.

It was in an old building, one employee was there and the space was very nice and simple - resembled a salon which I appreciated - made for a more comfortable experience.

Hannah’s head was clear, thank heavens. Nora still had nits and the employee proceeded the the treatment. First, she used what looked like an old vacuum with a brush head and spot-heated Nora’s head. Not sure how this is any better than just using a hair dryer at home... ?
AirAlle

Then she sprayed Nora’s hair down with some cream and got to combing - she used this comb that I thankfully ordered on Amazon. I saw other professionals use this comb and I watched her rake Nora’s entire head and that thing found all the tiny hiding nits!
Terminator Nit Comb

She ended spraying Nora’s head with a mint oil mixture and a shower cap - we were to wash her hair with Dawn when we got home. I felt a huge weight off my shoulders having a professional do a deeper dive on Nora. I don’t care that it cost $165 - worth it for my sanity. We have to keep checking Nora every 4 days for the next two weeks.

I’m anxious for my comb to arrive. I also purchased Fairy Tales Repel Spray as a preventative measure as school starts. From what I’ve read, lice are clinical proven to stay away from mint oil. Now that I can pause and think, I won’t use chemical OTC kits again - if we have another occurrence! It seems natural oils have their way with lice. The technician said many lice are becoming resistant to pesticides and chemicals - of course.

I did a check on Nora last night and she appears to be free. Once my comb arrives, I’ll do two thorough comb-throughs and hope we never have to deal with this again... !

Tim and I still appear to be clear. I use hair product every day and anecdotally have heard that will keep lice away. A teacher I know was told to wear product in his hair every day simply to ward off any lice threat - !

Hindsight is 20/20. I’m still mad at myself for not checking Nora’s head back when we learned the sitter had dealt with it. I also know to be more preventative - teach Nora “If it touches our hair, don’t share.” Do regular checks and use preventative products when a lice alert happens!

NOW I know the true meaning of “nitpicking” and will never use that word without shuddering again.

Professional Help:
The Lice Slayers
Simplicety
Lice Doctors

Too Busy

The past two weeks have been a bit much - in a good, social way.

The Sunday I took the girls up North was nice, but the day extended longer with some friends over which was nice, but left me completely run down.

The weekends are usually time for Tim and I to take care of “things;” running, groceries, mowing, errands, cleaning, etc. Then squeeze in the social things between. I wish I had the benefit of completing the household items during weekdays. I do a lot of small pickups at Kroger at 7:30am on my way into work!

Then the following Tuesday, Tim and I worked a half day to scoop up the girls and take them up to my parents. We were seeing a band at Nutter Center and my parents were kind enough to extend their house for us to spend the night. It was - of course - a late night and I didn’t sleep well, maybe five solid hours.

We were home Wednesday with the girls. Back to work Thursday. Then Friday evening the girls went to Nana’s house so we could attend another concert. I know. We knew it was too much, but purely coincidence that two shows we wanted to see were the same week. Yes, I could have not attended one. But I take what social outings I can get.

Both nights were fun, but not sure they were worth the effects the following days. Zzzz. And I do realize that Tim and I are incredibly lucky that both our parents are so close and happy to watch the girls so we can have adult time.

I had crammed in my weekend run on Friday after work which may have been a bad decision. It wasn’t humid, but it was warm and I’m not used to long runs on week evenings. I only made it six miles because my feet were lead and clearly didn’t hydrate enough after I was done. I felt like garbage on Saturday AM. 

So we packed up Saturday and I took Hannah to swim class. We drove up to Miamisburg to pass off the girls to my folks. Then turned around and went back down to Kentucky for our annual Adult Day at our close friend’s lakehouse. It’s an annual event that’s been happening since before we had Nora at our friend’s Williamstown lakehouse. I enjoy the grown-up discussions and sitting in the sun! 

It’s just a bummer because it eats up our entire Saturday and half of Sunday - very little weekend time with our girls. We kept our Sunday fairly lazy and still crammed in grocery shopping and cleaning. 

So in summary - I’m tapped out on adult fun for the summer - ha! Though truly grateful that we have these opportunities. 

Hannah Updates:

Speech: 

Hannah still does not say “Mama.” 

What she does say: 
Daddee
Go
Boyee [her word for dog]
Snacks
Color
Nowuh [Nora]
Papa
Down
Cackuh [cracker]
Something with S’s and a claw hand which means she wants to watch Trolls. 

One of three speech therapists thought she might have a physical issue causing the delay - like her adenoids were causing the problem. This therapist has seen Hannah the least. I was leery of the comment. I followed up with our original ST at the Thomas Center as well as our Children’s ST - both of them did not agree. They just think Hannah isn’t saying M’s yet. 

Just to tick all the boxes, we brought up the adenoid comment with her ENT. Since Hannah really doesn’t snore or have consistently snotty nose, he also did not think Hannah has a physical impediment causing the lack of M-sound. She just... isn’t yet!

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Eyesight

No news here - she had her bi-annual checkup this morning and nothing to report except - keep patching! Wheeeeeee!

Hannah’s new behavior - floor planking.

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Eating & Drinking


Hannah is behind on feeding herself with utensils. It’s a struggle. She just doesn’t care. She’ll eat a few bits [enough to get her heart meds in] then pick up her plate/bowl and hand it over. I struggle with teaching her proper behavior and actually getting her to gain weight. 

Last night I gave her what I thought she’d eat; eggs and toast. She ate three bites of eggs and signed “all done.” I was so mad. I made her sit there while I ate. No Trolls after dinner and no “snacks” - if she wanted a snack, she had to eat her dinner! She was grumpy and turned out to be pretty tired. I think we just have to keep tough with her... she knows how to eat. I just get anxious because her whole life has been about gaining weight. 

I’ve also been thinking we need to get her trained on a regular cup. We’ve been on straws for a while. Hard spout tips are not recommended for our kids because straws promote better muscles for speech. Another item to practice with!

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Toilet Training

The DSAGC informed us all that Cincy Children’s was opening their Developmental Disabilities Toilet Training class to other “needs” - i.e. kids with Down syndrome. A team did a study with approximately ten boys with autism from ages 3-7 years old. After this “intense” training, seven were trained within 7 days. Two were trained within 9 days. One dropped out for timing purposes. 

There are some parents whose kids with Ds have tried this training program without results. So I’m not going to expect an immediate miracle. 

I went for two hours last Thursday night to get an overview. I go back this Thursday night from 5-8pm to get the tools on HOW to train Hannah. 

Three things I’ve already learned:
1. We have to set aside 7 days for the training - ! For real? Looks like Christmas is going to be pee-tastic. 
2. We have to withhold her “reinforcements” for two weeks prior to training - ! She’s gonna get pissed with no veggie sticks!
3. She’s gotta be nekked. 

Looking back, training Nora was easy! She was pretty trained - even at night - before age three. Hannah is a new ballgame - we shall see! 

Hannah’s Medical Updates

Hannah had a hefty day Tuesday April 25th. It started as her rescheduled annual echo/EKG and added on her PE tubes - not due to constant infections, but due to held fluid that was affecting her ears.

Originally we were scheduled for an 11am echo, 12pm EKG and 12:10 Cardiology follow-up. 

We were given instructions to arrive at 7:15am - ! I didn’t understand why so early, but who am I to question the medical schedule? 


The morning went well and I was really more anxious about her lack of food & water before the procedures than the procedures themselves. 

Hannah was pretty good - she was so distracted with where we were, I don’t think she cared about thirst or hunger. [Nothing after 4:15am - right.] Literally every nurse exclaimed how cute Hannah was - I think the glasses have a lot to do with it, but I mean come on - she is adorable : )

Loves putting on socks!

Passing the time!

Around 8:45 we took her to the side room of the OR with the anesthesia team. We all sang Old MacDonald Had A Farm while I held her down... she was out under 30 seconds - it was crazy. And rattling seeing her go floppy so fast.

We grabbed our items and shuffled out to the waiting room. The same waiting room we were in almost two years ago for her heart procedure. I was surprised at the emotions that bubbled up being in that waiting room... sheesh. 

Tim and I grabbed a quick breakfast and headed back up - we weren’t even gone 45 minutes when we were told she was done. Dr. Shott said it went just fine and the fluid in Hannah’s ears was the consistency of rubber cement! I’ve been told by two other Moms that she described their sons’ ear fluid the same : )

Seeing Hannah afterwards was difficult. First, a nurse was holding her and once we arrived, I took her and my poor girl was inconsolable. Probably confused, scared, foggy and a painful IV in her hand. We sat for 20 minutes until she calmed down. 

We went to the cafeteria and the poor thing was exhausted - she slept a good hour in her stroller which was fine - Tim and I could grab some food before our 12:10 Cardiology follow up. 

Poor little ragamuffin with her skinned knees.

By the time we got to Cardiology, you’d have no idea she’d been sedated for a minor procedure just hours before:

We had a nurse and the Cardiology fellow stop in to see us and didn’t see our Dr. for an hour and a half past our appointment time. Apologies just aren’t worth it. 

What I thought would be a routine “everything looks great” - was not. Nothing serious at the moment. Hannah’s left heart valve is leaking/regurgitating more than it was a year ago. So right now she’s going back on a pill 2X a day to control that regurgitation. We’ll follow up in one year.

Will the leaking get better or worse? Her doctor can’t predict - it’s very subjective. Could get better, worse, or stay the same. If - heavens forbid - it continued to worsen, surgeons would have to go back in and repair again. 

Not at all what I was expecting to hear. I guess I blindly thought - and was told - Hannah’s type of repair was typically a one-and-done repair. Just the thought of even a slight chance of going through that procedure again makes my body start to shake. I have been through that battle and I am not sure I could muster myself to power through it again. I had put all those feelings aside and now they are creeping back.

I know many kids who have - or will - go through multiple procedures but I can’t swallow the possibility when I thought we weren’t supposed to go back. 

I know this may not even happen... I plead and am desperate for the pendulum to swing back. So please, please - if you believe in a higher power or any cosmic persuasions, I beg you to put Hannah’s health in your prayers, chants, dances, what have you. 

Photo Dump - Spring '17

Ragamuffin with no pants, dirty shirt and unique “shoes.”

Hannah’s April Fool to Nora - wearing her swimsuit.

This is unnecessary. It’s preschool. I refuse to pay for “graduation” photos. :: eyeroll ::

Successfully donated last Friday. Popping iron pills for a few days prior helped me out!
My blood flow is super fast [?] and the technician commented how I was faster than both the men before me.

Mini Christine vacuums under the couch cushions - YEESSSS!

Hannah rocking Aunt Molly’s overalls from the 80s!

My awesome sisters watched the girls while Tim and I had a date night dinner at 50 West.

Delicious beer flights! 

The cutest cutie pretending to ride her tricycle. Another physical challenge we’ll conquer.

 

Nora, Chicken. Chicken, Nora.

Baseball & Bedtime

Unlike a stereotypical Monday, I was in such a good mood yesterday - not only did I feel good, but it was Opening Day! 

For those not in Cincinnati, it’s a Big Deal. Historically, the Reds have always been the literal first game of the MLB season until a few years back [?] when we were pushed to the 4:10pm time slot, so now we are not. The Cincinnati Reds were also the sport’s first professional team. 

Opening Day @ The Banks

Loads of people take the day off to enjoy the parade and festivities. The parade always starts at Findlay Market and goes down Race Street - the street I worked on for 11 years at Landor and now 3 years at goDutch. And every year I look longingly out my office window wishing I could have a day out. 

My coworker Mike captured my FOMO. 

At least we have a festive lunch full of baseball staples - NOM! So much bread and nacho cheese : )

On top of feeling great, we’ve been getting more sleep! The transition to a full size mattress has helped keep Hannah asleep at night! Our theory was right. However - getting her to fall asleep is the real challenge. 

We aren’t ones to lay with our kids until they fall asleep - we believe our girls need to learn how to fall asleep on their own. However, with this transition, we are taking time to settle Hannah down. 

Phase One: have a walkabout in her room, play with curtains, dolls, etc. 
Phase Two: lie down and toss and turn until she sleepily starts babbling
Phase Three: hear her breathing slow and finally fall asleep

This process averages one hour but we’ve both had 1.5 hours of this process also. I think once we get into a groove, we need to start leaving her in there to figure out she needs to lie down without our assistance... We’ll see how long it takes us to get there - !

Walkin', Rollin' & Sleepin'

What a week!

Wednesday evening I was blindsided with aches and chills. Second time this “winter?” I missed work Thursday and Friday which I’m not sure has ever happened in my entire 15 year career?? Aches, chills, fever, fatigue. No stomach issues - thankfully? 

*I’d also worked from home the previous Friday because we woke up and the thermostat was at 58˚ - ! I stayed home for Recker & Boerger to arrive only to find out we simply needed to change the batteries in our thermostat - !! #adultlessons

Saturday AM I woke up with Hannah at 6:45am. I thought I was good... we *had* to get Hannah a mattress at IKEA. But the aches and fatigue were not leaving. I powered through [because that’s what women do] and we made it through the hell that is IKEA on a Saturday. 

I was pretty much laid out the rest of Saturday. It was over 70˚ outside and I was shivering from the chills/100˚ fever. Popped an ibuprofen which I love... once it kicked in I started overheating! Felt so much better - ! 

Woke up Sunday much better - good start for our annual World Down syndrome Day 5K! The past two years have hovered around 30˚ and dry. This year: 60˚ and rainy. I think most preferred this year’s weather! 

I chose not to run obviously because I was getting over the flu [?]. I didn’t mind, I enjoyed the time with my sisters. The rain held out until halfway, then it started sprinkling. Everyone was a champ and I smartly packed everyone extra clothes. 

Our afternoon was spent transitioning Hannah’s room! Out with the crib, in with a full mattress on the floor. Girlfriend rolls a lot at night, so we knew we’d start on the floor.

She did great! Lots of rolling, but no waking!

I, on the other hand, slept like garbage and woke at 3am with chills again - noooooo! I felt good Sunday - !? So this is probably Day Five of the flu... I will be going to see if Tamiflu is administered this late in the game : (

Lately - March

Things seem to have been somewhat calm [?] recently. 

Tim and I ran the Bockfest 5K - about 30˚ and snowy. The night prior Nana and Papa took the girls so Tim and I were able to have another date night - wow! That’s like two in one month - thanks family! Since it was such a magical time, I went to Target by myself and thought a basket would control my urges. It did not. I still ended up spending $80. Doh!

We also went to our favorite local joint, MJ’s, and got some appetizers and beer flights. I tried Great Lakes Chillwave for the first time - a double IPA that was super smooth [and 9.4% ABV!] - yum! 

I ran the Heart Mini 5K this past Sunday - about 30˚ and dry. We have the World Down syndrome Day 5K in about two weeks. I’m hoping it’s a BIT warmer - ! I think next year I’ll just add in the West Chester Shamrock Shuffle 10K and round out my March : )

The appointments with Hannah have eased up a bit. Working on stairs, steps, slides and uneven surfaces.

Little girly got a new prescription and lenses - Daddy picked a more obvious pink this round. 

Hannah is trying to say more - cracker, or “kah-kuh,” is a fun one. She’s calling Ailo “boyee” because that’s what Daddy calls him. She’s following directions but also clearly disregarding when she wants. 

Zero progress on home damage. Not sure when the contractor will start because Champion will not fix the siding until the deck is fixed. Sweet. 

And a few more photos to round out the boring post:

Made Nora her own craft drawer.

Delicious!

Every now and then I get glimpses of myself. Case in point: meticulous lining up of Memory cards.