Wednesday, October 28, 2020

Hannah Labwork

Hannah has annual lab work to keep eyes on her thyroid, celiac, iron, and white blood cell count (WBC) - these specific items can be more likely in people with DS. The high white blood cell count can at times be a lens to possible leukemia. 

We had her blood drawn this past Friday. The phlebotomist was a woman we see every year. We both restrained Hannah a bit and got the needle in Hannah’s left arm. The phlebotomist didn’t hit the vein well enough (!!) and kept trying to maneuver the needle back into a vein - for the love of God woman, it’s your ONE job!! Hannah was wailing and I was very close to barking at her. She finally stopped, removed the needle and gave Hannah a break. She called in some help and the three of us held Hannah steady while she successfully got Hannah’s right arm. 

Hannah thankfully bounces back quickly and we were on our way. 

By the midday Friday, her WBC had been reported - normal range is 5-14.5 and Hannah’s was 2.93. Now, if I wasn’t informed and didn’t know low WBC can be quite common with kids who have DS, I would have freaked out. BUT all of Hannah’s other numbers were in normal range, so I knew she was okay. 

Her pediatrician knew this and agreed Hannah is probably fine, but we have to get lab work done again in two weeks - wah wahhhh.

Also of note - my last trick for digging into Hannah’s sleep was her iron/ferritin levels - which were also normal. 

So now we know it’s 100% behavioral. Ack! 

Tuesday, October 27, 2020

Oophorectomy Update

Quite a word, eh? “An oophorectomy (oh-of-uh-REK-tuh-me) is a surgical procedure to remove one or both of your ovaries.”

My parents graciously drove down to watch the girls while Tim took me to my surgery at Christ - about 30 minutes away. Arrived at 8:30am. 

I had a pre-op COVID test the week prior. It wasn’t far and a testing site for only pre-op needs - which was nice, I was the only patient at 8am. The swab was gentle, she only went a bit into my nostril, not as far up as the other tests.

Tim and I went into a triage room. Got my IV and gown on. The new warming blankets were pretty bizarre - they hooked up to a small vacume-sized machine that blew hot air into a hollow blanket. It was actually quite cozy and warm. 

They rolled me back close to 10:30am. I’ve never been in an operating room - it was bonkers - didn’t realize how many people would be in there - so many lights and instruments and I think I even saw the laparoscopic robot! 

They put the oxygen mask on me, and I was out in 5-10 seconds! 

The next thing I knew, my eyes opened in recovery. The RN next to me asked how my pain was. I muttered that on a scale of 1-5, my pain was a 2. It was strange laying there, coming out of anesthesia. I kind of enjoyed just laying and resting. 

Surgery only lasted 45 minutes! Dr. O spoke with Tim at 11:15am. I opened my eyes around 12pm, was wheeled back to a room around 12:30. I think we left near 1:45pm? 

I have three incisions; one in my belly button (I can’t even detect it) and two on each side of my pelvis. 

I needed extra strength ibuprofen the first three days, never needed the big gun painkillers! I’ve mostly just been sore. I didn’t realize how much I used my ab muscles throughout every day. I did take stool softener too because.... I needed gentle help!

Recovery has been much easier than anticipated. I’ve been enjoying the down time, taking care of odds and ends, running errands - like renewing my drivers license! I’ve been taking walks every day while I listen to podcasts - it’s been relaxing! 

My follow up is this Friday. Dr. O called me last week to see how I was doing - she was happy that I’m doing well and said my health and physique helped the ease of recovery. 

She advised I take two weeks off which I questioned. At first I was irritated I had to use so much PTO. However, if we don’t use it, we lose it. So.... in a way I’m glad I was able to take advantage and use all my PTO that I had! Luckily we’re headed into November so Thanksgiving is approaching and then a good break for Christmas. 

Wednesday, September 16, 2020

Labor Day Weekend 2020

 At first I was bummed out we had a long weekend but no plans because we (and I wish this was everyone) don’t do groups of people during a pandemic. However, the weather cooperated - no humidity and nice temperature meant a lot of exploring our Nature Center. 

We finally checked out a smaller property of the Nature Center that is members only and further out in Goshen, OH. Much smaller amount of people. Some nice trails, and one that wove in and out of a creek. 

Meanwhile, Hannah does not have stamina on hikes which is a bummer. Tim and I love hiking and I will make Nora love it too 😄. We borrowed a carrier from a friend, but it’s not cutting it. Hannah is too tall and heavy (35lbs) for this carrier. 

I did some digging and found this: The Freeloader. It has a lot of good reviews from special needs families too! Although super expensive, we think it’s worth a shot. If it doesn’t work, we know we could resell it easily. 

Friday, September 11, 2020

Great Hannah Health News!

 Hannah had her ... 5th (?) sleep study last Friday evening. It was Tim’s turn up to bat. I was glad - after the first week of remote learning, donating blood that morning and just having a general heavy workload, I was able to have one-on-one time with Nora. 

We actually ate at a local Thai restaurant - we went right at 5pm and sat on the patio - the only customers! 

Hannah did fairly well and slept enough to get a good reading. 

The results came back already this week - Hannah’s apnea episodes went from 3 an hour down to 1! That’s huge - and without any changes in behaviors, surgeries, etc from last sleep study! 

We won’t go over the specifics until mid-October, but we can breathe easy. 

Now to try and focus on why she still gets up once a night... whether it’s behavior or what. We wordlessly walk her back every night and walk straight back out. 

I have added ferritin labs to her annual blood work. Low ferritin can cause sleep issues. 

So for now - good news!


 I was super bummed the pandemic halted plans for Hannah’s birthday - I was so excited she’d made friends this past year and had planned on having Hannah’s first “friend” birthday... 

I tried to get creative, but nothing is the same as Hannah having a social birthday because that’s how she operates. 

So - it was just a quiet birthday at home. Nana & Papa stopped by the weekend before to drop off some baby doll accessory gifts that Hannah (and Nora!) loved. 

Hannah’s new classmate, Jordan, came down this week to play a little. Molly (the Mom) reiterated how happy she is we are around the corner. The girls enjoy each other and Jordan doesn’t know Hannah has Down syndrome. 

So Happy Birthday Hannah Banana - every year you grow and blossom and prove you can meet expectations! 

Thursday, September 3, 2020

First Week of School

 Lots of learning and flexing and more adapting this week as we step our toes into remote learning for the semester. 

Nora will be sitting with us in our bedroom (WFH office 👎) so that we can oversee her work and help her as needed. Why our bedroom? Only the bedrooms have doors to close. We have a 3rd floor but it’s hot as Hades during the summer. (Our HVAC isn’t strong enough to cool all three of our floors which is a story for another day) Tim is okay working in the unfinished basement - I am not. I need daylight.

Our caregiver and Hannah will be on the first floor and we don’t want to be a distraction. 

On the first day, the neighborhood Moms wanted to take their annual 1st Day Photo. We aren’t bus riders, but I appreciated the inclusion! I’ve enjoyed slowly getting to know all the other elementary families and like feeling included. 

Learning Nora’s new school platforms (Schoology, Flipgrid, etc), where to find her assignments, Google Meets, gathering passwords, has been a learning process this week. We have Facebook groups for all our district’s remote grades. It’s actually quite helpful. 

Our caregiver is taking Hannah to her house for afternoon Kindergarten. Again - less of a distraction. Mentally, if Hannah is in a new space, she understands it’s time for school. So far it seems like it’s going well. 

Monday afternoon we had a knock at the door. A woman, Molly, from down the street came over with her daughter, Jordan. They wore masks which I totally appreciated and thought was very polite. Molly had run into Tim and Hannah on a walk not long ago. On the Kindergarten video class, Molly saw Hannah and was excited to see her. She walked around the corner with Jordan to re-introduce themselves. It meant so much to me. I’ve worried that Hannah would have no classmates/playmates in our neighborhood and it makes happy to know there’s a girl in Hannah’s grade a few houses down. 

The following morning, Molly texted to say Jordan woke up happy and excited she met a new friend 😭

Learning curves, getting used to new schedules, but slowly getting our footing.

Wednesday, September 2, 2020

Christine’s Health - Special Edition!

To start, I’ve been very clear two children was my cap. My ObGyn was one of few “natural” OBs in the Cincinnati area - also in Springdale. Since I’m done having children, it felt unnecessary to travel that far, plus I can give up my “spot” for another patient. 

I found a great new Gyno closer, also close to my age. 

I brought some flags up to her: 

  1. I’ve been having hot flashes for approximately a year and 
  2. I haven’t had my cycle since Halloween 2019

We did some lab work and it turns out my estrogen is barely in normal range. So turns out I’m a rare case of early / premenopause! Bonkers. 

However, I can’t begin hormone therapy until after they remove .... the 6cm cyst found on my left ovary! Ta-da! So come Oct 16th, I’m headed in for laparoscopic surgery to remove the cyst and ovary. 

Recovery is two weeks which is a lot. And takes up essentially all my PTO for the rest of the year 😕I’m not used to being the one in our family who is admitted for a procedure. Nor am I ready to rest for two weeks. Everyone knows I’m a busybody, so this will be interesting. 

And I have to get a COVID test pre-surgery to boot. Boo.

Mini Getaway

 Our caregiver took a week off so to ease the balance of taking care of the girls while working, we took two days of the week off and headed to my parents for an escape to the woods and river. 

We took a trip into downtown Tipp City, which I’m not sure I’d been to since maybe my 20s? We enjoyed seeing a few shops and played in the town playground. 

The second day we got on the river for the 3rd year in a row. This year Nora and I shared a double kayak. Nora did a great job helping paddle - soon she’ll be able to maneuver on her own! 

Friday, August 28, 2020

The Parents Are All Stressed

For those who don’t have children in school, it’s the only subject any parents can talk about for the past month. 

It’s been very stressful - more so with a child who has interventions / IEP.

Our district decided on offering 5 days in person or all remote learning. We decided on remote for various reasons:

  • health
  • stability/consistency (with infections and symptoms, people will be in and out and the school could shut down quickly)
  • we stay “clean” to continue seeing grandparents and extended family
  • we stay “clean” to play with other kids who are doing remote in the neighborhood

However. Spring remote therapies was a bust. I had to schedule them into my already busy work schedule and small kids just can’t hang. PT was okay. Speech was fairly okay. But OT just isn’t possible remotely - that was all on us to facilitate. 

Our district netted about about 80% going back in person 5 days a week, 20% remote. 

Leading up, there has been a lot of complaining, impatience, emails, etc. - all from parents of course. 

Our entire district learned at 2pm last Friday that school is being delayed a week. Teachers were not prepared - they have been learning updates the same time parents have - ! They have been told they are teaching remotely right before the deadline hit, people are already switching over to remote learning before in-person started - it’s already been a mess. Frankly, I feel more time and planning has been spent on getting kids in school versus a solid remote plan. And why not, right? Schools get state funding by how many are enrolled :: sigh ::

We did learn a few weeks ago that our summer caregiver is taking the year off from her Early Education major - it was supposed to be a student teaching year. SO - that’s good news - she will be sticking with us to manage Hannah’s remote learning and transporting her to and from therapies. Although this wasn’t in our budget, and we’ll have to tighten up, it will be worth our sanity. 

Nora will be setting up shop with Tim and I in our bedroom “office.” Whenever this pandemic is under control and we get to leave this bedroom, I’m giving it a full makeover so it feels fresh and wash memories of working from home here. 

We received their schedules on the Friday before remote learning starts. Hannah’s therapies are all scheduled. Chromebooks are set up. Let’s roll. 

Wish all parents good luck and be gentle with us - emotions will be high! 

Tuesday, August 4, 2020

New Dentist, Same Result

I tried out a new pediatric dentist last week, a little farther away - it’s a larger practice with more rooms, even a “sensory” room. Our visit was merely an exam, not a cleaning. 

I had my phone ready with Hannah’s favorite show, but we still went through the same sh*t. 

Let me go over what we’ve tried practicing with Hannah:
  • Electric toothbrush against her skin
  • OT exercises to get her comfortable with hands in her mouth
  • Laying down and counting her teeth
  • Dentist visit books
  • Dentist visit videos
Hannah was cooperative at first... we hung out in the parking lot until a staff member escorted us in. They took our temps and we walked through the office. We came to a room and Hannah immediately was reluctant to even get up in the chair. 

I got her up in the chair and she FOUGHT to lay back. 

The dentist, myself and the hygienist tried out best to no avail. The dentist said Hannah needs to first practice just laying down in the chair - which is the most vulnerable position which is probably why Hannah fights it so much. AHA! No one has ever explained that to me. 

Tim took Hannah to a 2nd “Happy Visit” and she did a bit better, but did lay back for a second and let the hygienist show her the tools and look in her mouth a bit. 

I want to continue regular Happy Visits. A gal at the front desk made some comment about “Oh after one Happy Visit, kids are usually good.” I wanted to give her the biggest eyeroll. It’s not that simple, lady. 

I’m hoping with monthly Happy Visits, we can get to an actual cleaning in January.