Whoops - that was terrible posting almost a month ago without follow-up! Very quickly: Hannah’s bloodwork was fine!
It took over a week for Hematology to call me back.
They want to do another round of labwork in 6 months and see Dr. Ware in a year. Fingers crossed by then we are all about and about a bit and our immune systems are up and running again : )
Children with Down syndrome get regular blood work to keep up on their health and any hidden illnesses.
The labs cover; celiac disease, thyroid, red and white blood cells, and iron levels. We have friends who have celiac, low iron, and various autoimmune disorders.
In 2018, Hannah’s white blood cell count was about 5.3. Normal range is about 5.5-15.5.
In 2019, Hannah was at 6.45.
In early October, her WBC was 2.93 which prompted a call from our pediatrician. However, the rest of Hannah’s labwork was in normal range, so it’s not as critical as, say, other wonky numbers that point to leukemia. God forbid.
We had a 2nd draw last Friday and her WBC was still hovering around 2.87.
Our pediatrician is stumped and therefore referring us to Hematology... which sounds daunting and I am slightly nervous just because *something* could be slowly causing her WBC to drop over the years. Those of us who have kids with DS know that low WBC is very common.
We’re headed into Children’s this Friday morning and will keep everyone posted - keep fingers crossed and prayers up.
Many in the DS community have been following Chris Nikic - a man who is training for the Ironman on Nov 7th in the Gulf Coast - and happens to have Down syndrome.
He is shattering assumptions of what people with Down syndrome “won’t” be able to do. He didn’t walk until age 4 or eat solids until age 5.
I appreciated this blurb:
“Though Chris will swim and run while tethered to his Special Olympics partner and receive help transitioning between sports, he will be tasked with following the rest of the Ironman rules. “We don't make any accommodations for anyone around the core elements of racing,” explains Andrew Messick, CEO of Ironman Group. All athletes must complete the same distances and meet the same cutoff times. That means if Chris crosses the finish line in less than 17 hours, “it'll be the same accomplishment as everybody else,” Messick says. “And that’s awesome.” It’s also damn impressive.”
GO CHRIS!!
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!
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 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.
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.
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!
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 ðŸ˜
Learning curves, getting used to new schedules, but slowly getting our footing.
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:
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.
