Tuesday, April 10, 2018

Hannah’s Annual Cardiology Appt

That time of year - annual Cardiology appointment. Last year’s appointment threw us for a loop so the past 24 hours have made my stomach flip.

We were up at 5am, out the door at 6am. Echo was at 7am - we decided to roll the dice and not sedate her this year. Hannah was quite cooperative - woo! Tim held her arms while I tirelessly sang songs for a good 20 minutes straight. The room was dim and twinkle lights moved on the ceiling so that helped. 

Her EKG was quick and easy and Dr. Kimball came on in around 8:15am. He has a very straight face - which I imagine most Cardiologists learn - and after listening to her heart, he started out “Well, I’m very happy with how things look...” THANK THE LORD. I said “Oh thank goodness, I was so anxious,” and Dr. Kimball looked very sympathetic and said “Oh I’m sorry!” It was reassuring that he was concerned about my comfort : )

Hannah’s valve leakage is stable at “moderate,” even a slightly bit better. Dr. Kimball thinks a re-repair is unlikely, but not guaranteed. If the leakage stays stable for years, then we would likely be in the clear. If that path was constant, we could also consider going off her blood pressure meds. 

SO - a very good morning with lighter shoulders. 

It’s Always March: Hannah’s Dehydration

I can always guarantee I - or someone in our home - gets sick in March. Not in December - February when most people get the flu. WHICH thankfully we did not get, but nevertheless, no illness is a ball of fun.

Sunday evening, as Spring Break was ready to start, Nora was feeling yucky and had a small fever. Monday she woke with a 101˚ fever and cough. I stayed home that day. Tim stayed home Tuesday. Wednesday she was fair to get back to the sitter’s (whom I already had to pay a full week to watch BOTH girls). 

Thursday late morning I get a call that Hannah has thrown up. Son of a gun. I pick the girls up by 11am. Hannah threw up a bit of blueberries. She didn’t seem too down, only slightly clingy, no fever. “Only” threw up some peas once more at 6pm. She slept fine all night. 

Friday then went to my parents and had a pretty regular, fun day. Saturday we woke up and something was off with Hannah. Could not even lift her head up and continually asked for water.  

Regular fun day at Grammy’s!

After watching her for a while, we realized she was most likely dehydrated and took her to Cincy Children’s Liberty Campus (we did this on purpose because it’s much quieter) by 9am. We got right in and after some bloodwork - which she didn’t even fight - her labwork showed definite dehydration and her glucose levels were down to 38 - real bad. 

Nora was a champ after being gone for nine hours : (

They hydrated her through an IV and the next set of numbers was better - glucose up to 110. Her third reading unfortunately went back down to 68 which was cause to keep Hannah overnight to monitor since her blood sugar wasn’t stabilizing. The on-duty pediatrician said if it kept at a level of concern, an Endocrinologist would need to get involved - that set me on edge. She had no growth concerns, but in the back of my head I thought “Diabetes?!”

Better, but not enough to be released.

Heading to our room for the night.

Since I did the sleep study, Tim said he’d stay the night with Hannah. I took Nora home after hitting Kroger for snacks for both Hannah and Paleo Tim (that’s till an epic tale for another day). I took Nora home and tried to settle for the night. Oh, and get Easter baskets ready because Sunday was Easter. 

Thank heavens Hannah’s evening glucose level went back up to 110. That number stayed steady through the next morning. I dropped Nora off at Nana & Papa’s so I could hop to Children’s for Hannah’s hopefully-soon-discharge. 

The poor thing had an IV in her hand for over 24 hours, her hair was greasy from eating veggie straws, and her PJs were dirty. The RN did one last glucose read after being OFF fluids and Hannah was stable - we were out the door in under 30 minutes! Happy Easter!

I hope we never go through that again and have learned our lesson to keep the girls hydrated after illnesses, too ! 

Wednesday, March 21, 2018

WDSD 2018

So much to share : ) 

Lea Goes To School

World Down Syndrome Day 2018

March 21st, tomorrow, is World Down Syndrome Day. Three copies of the 21st chromosome. A lot of parents may visit classrooms to teach about Down syndrome, or about celebrating our similarities/differences at a more basic level. Many celebrate by wearing mismatched socks to again promote that while we share similar abilities, we can also celebrate differences. 

I personally side a bit more with celebrating that those with Ds are more ALIKE than different. Some year I may gather my thoughts and find a way to educate my daughters’ classrooms when the time feels right. I just don’t think preschoolers will grasp Hannah’s differences - and why point them out?

However, tonight, the real meaning of World Down Syndrome Day hit me. Hannah and I were at her preschool celebrating Moms. We were gathering our crafts and about to get our coats on when another 3-year-old came up to Hannah and with a huge grin, waved and said “Hi Hannah!” Hannah said “Hi” and waved back. The little girl said she was in Hannah’s class. Her Mother came over and said she hears about Hannah all the time.

The emotions on the drive home hit me like a wave - THAT is what acceptance and awareness are. Simply acknowledging, accepting and welcoming those who are just a bit different than you. Granted, the girl was only three and probably didn’t even think Hannah WAS different than her - which makes it that much more pure.

So again, friends - simply educate your young ones, your friends, and challenge yourself; empathy, compassion and acceptance. Not turning a blind eye when you see someone could use kindness. I can only hope that Hannah continues to have friends who want to engage with her. THAT means more to me than mis-matched socks.

Thursday, March 1, 2018

That Time We Almost Moved

So from about mid-January to mid-February we nearly moved – within Milford. 

This wasn’t totally out of the blue. Over the past year or so, we jokingly (?) said we should move for a few reasons. 1. The yard is not great. There’s no level point. It’s probably half landscaped. Keeping up with mulch every year isn’t even an option. Trees are great for privacy, but when you have to cut them down or they fall on your house - no bueno. 

2. The house has really been more of a fixer-upper than we anticipated. New dishwasher, new A/C, new water heater, lots of wall painting, and new siding. I miss having 1st floor laundry like our first home. The furnace will need to replaced in the near future. The larger patio slider needs replaced. Some day the decks need refinished.

So for all these reasons - less time and money on the house, more time and money for the family - we seriously considered moving within the district. We’ve got a lot of equity in the house and met with a realtor friend who said we could sell for a really good price. So it felt like if we were going to do it, now was the time. 

So for about four weeks, we started getting the house ready, talking to lenders, and seeing what our options were. We quickly ruled out making a lateral move - there are a lot of homes similar to ours... and with two small children and a large dog, we weren’t willing to risk selling and not finding the perfect fit. 

So then we thought about building - except... there’s no where to build in Milford. The newer neighborhoods are too far North or East. Our commutes are enough as they are now. We found one plot on a nice street, still in our elementary zone, but it was a corner lot with a 50-ft setback and the HOA looked like a pain in the ass. 

The second plot we found was a different elementary zone, less desirable neighborhood. We even went to Schumacher Homes and “built” a home at the top of our budget and we still feel like we settled on some choices - not a “dream” home. 

We drove around Milford an frankly, we didn’t really like anything. We realized how desirable our mature, private neighborhood is and we actually like all our neighbors; a mix of quiet retired people and families with young ones. It’s a pretty drama-free area. 

And deep-down, Tim and I both felt like we would regret leaving our home and our location is prime. 

SO - after tons of swirl, we’re deciding to Love It, not List It. Get a home equity line of credit and make some necessary repairs and updates and continue to build value. I think we’re just at a time where we’re very busy with small children and can’t focus on keeping our property top notch - and we have to be okay with that. 

Plus, getting some fresh paint and updates makes you love your space more : )

The busted-up corner where the 80s built-in lived.

Meh putty color

90s (?) Pear Green

Light grey in progress

Tall ceiling = scaffolding

Calm grey! Except now the trim needs painted white - DOH!

Patched corner! Now my cozy chair looks baaaaaad. Haha!

Much cleaner!

Monday, February 26, 2018

Sleep Study Results!

Took Hannah for her sleep study results with a bit of trepidation. No one made it sound like there would be any worry, but I had to keep my mind open that something could show up. It did. 

The test itself went well - Hannah slept 8 hours so the team was able to gather a lot of information. They did record “episodes” of shallow breathing/obstruction. Anything above 1.5 episodes is considered having apnea. Hannah had about seven per hour. So - moderate sleep apnea!! Not severe, but enough to take action. (Her friend, Joe, had 8 per hour and had his tonsils & adenoids removed. Another friend’s son had 52/hour at birth - went home with O2!)

I was surprised - was not expecting that summary at all - she had no signs or symptoms! Our next steps are to meet with her ENT to confirm he wants to move forward with a Tonsillectomy & Adenoidectomy : ( Blergh! Not super, but it’s minor in the grand scheme of things. 

I swear no kid with Ds even has their T&A anymore. The other Moms have warned how rough recovery can be... getting kids to eat and drink despite their discomfort. 

I just want to get it over with... I’m so over all the procedures, man. I still have Hannah’s annual cardiology appointment looming in the back of my mind... praying praying praying that her valve is either stable or lessened leakage... I’m not sure I can emotionally handle another heart procedure - !

Wednesday, February 14, 2018

Ds Coverage

Lots of great stuff out there recently despite the Tom Segura special on Netflix. I’ll let you read that upsetting story on your own and not waste my blog space on him or his intelligent audience :: sarcasm ::

The 2018 Gerber Baby has Ds! Wahooooo! Our community was bursting with pride and joy when he was announced. We all felt like Lucas’ parents that day. Kudos to Gerber for Changing the Face of Beauty! Marketers are slowly coming around to making sure all families know their children are valued! 

Second, another story covered by Today Parents - #theluckyfewtattoo. I’ve been privy to this for some time since I stay connected to the community. I definitely want to get it - just need some time and a decision on where to put it : )  

This is a more complicated design a Mom in Australia came up with, but man, it’s pretty awesome! 

Monday, February 5, 2018

Hannah’s First Sleep Study

I’ve talked about routine exams kids with Ds need: eyes, thyroid, and sleep studies to name a few. While we were tackling g-tube and heart issues, our other friends tackled oxygen and sleep apnea issues. Again, low muscle tone = sleep apnea. 

We’ve never had symptoms (snoring, stopped breathing) but Hannah needed a study before age four. I figured winter time was the best lull to get it over with. All the other Ds Moms have painted a difficult picture for me and age 3-5 is the hardest age for cooperation - ack! 
Hannah and I arrived at the Children’s Liberty Campus around 6:40pm - we didn't go back to our room until maybe 7:10pm? I chased Hannah around the lobby - I think most people there were also for sleep studies. All the Moms told me to go to Liberty Campus b.c it’s more quiet than the main campus in Clifton.

Hannah slept for 10 minutes on the way there, too, of course. 

After getting settled, our tech and another clinician came in to start applying sensors. Thankfully they had a TV in there so Hannah watched SING which kept her distracted. 

Two sensors on each leg to see if she had restless legs. I think she had at least 3 on her torso. A pulse oximeter on her toe to watch her oxygen/heart rate. One under each eye to measure her REM. One on each side of her jaw and one under her chin for any grinding. I don’t even know how many were on her head - at least 5? And then the oxygen cannula as the cherry on top. 

Hannah shockingly went with the flow. Didn’t even fight the cannula! I laid in bed with her at 8:30pm and once I got her comfortable on her side and spooned her, she was asleep fast - probably by 8:45pm. 

I tried to get settled in my awful “bed”/chair - I’m not sure I had it reclined all the way? Hannah was coughing from about 10:30 - 11:30pm and trying hard to find a good position. She’s a stomach sleeper, so she was restless. She tossed and turned a lot - I woke up every hour. The tech would come in now and then to adjust sensors or the cannula. 

Finally the tech got the wires in a good position by 2am so I had my biggest block of sleep from 2-4am. Hannah slept fair the rest of the night. 

At 6:15am the tech came in to wake us up - ugh. Sleep study over! She didn’t say anything about how it went - she isn’t who would tell us anyway - the physicians have to assess all the data to see if anything is disturbing Hannah’s sleep - we have our follow up on March 3rd which feels like a long time away!

I felt like a zombie all day Sunday... it was the type of exhaustion where even if I did lay down, I’m not sure I would have fallen asleep. Glad it’s behind us and hoping nothing shows up on her study!

Commercial Love

I’m not a big user of P&G products, but man, their agency sure nails their olympic ads! #loveoverbias is just amazing and I can’t watch without choking up!

Love Over Bias

Additionally, kudos to Toyota for sponsoring the Paralympics and bringing awareness to limb differences!

Good Odds

Friday, January 12, 2018

Holiday Summary

Our holidays were fairly uneventful... Christmas was below average in that Tim had a sinus infection with stomach cramps due to too much Alka Seltzer (which actually wasn’t “too much,” it was just not good for his clean Paleo stomach). 

He literally slept through Christmas dinner at his parents (sad trombone).

Thankfully he felt fairly good enough for Hannah’s pottytraining

So by the time he felt better, Christmas break was over and we were headed back to school and work. 

Nora had her annual birthday movie + lunch with Nana & Papa - I always love the experiences over the stuff!

Nora gone @ Nana & Papa’s, Daddy sick and sleeping - just the two of us!

New Year’s isn’t terribly important and I think we were asleep by 10pm - a six-year tradition : )

Hoping 2018 brings us good things... we have Hannah’s annual ECHO and EKG in April - really hoping for stability in her valves or even improvement. I hope her sleep study shows nothing. I hope our house can stay upright (remember the fallen tree debacle?). All I really hope for every year is our health - without that you have nothing, in my opinion!