It has been a crazy 10 months since our last update and we have lots to share!  The pandemic “stay at home” orders in VA started right after our last neuro appointment for Maddie in March and we are so grateful the tests came back clear.  Since early March, our household have been under very strict lock-down and Maddie has not been outside of the neighborhood for any therapies, only required doctors/specialist appointments (e.g., vaccines/flu shots, etc. ).

(This blog was written in parts over many months, so please excuse the disjointed tenses and timeline!)

Due to Maddie’s complex medical history and the unknown impacts of COVID-19, we decided to play it super safe to avoid any possible exposure.  In preparation for the stay at home orders, Bill bought a ton of food and we were able to spend 12-14 days at home between shopping trips.  Maddie’s medicine prescriptions were also changed to allow for up to 3 months instead of the usual 4-6 weeks.  We stocked up a quarantine room replete with food, water, a tv and a workstation, just in case one of us (Bill) were to get infected.  As of the writing of this blog, everyone in the family is still healthy!

March/April

Maddie’s steroid weaning went very well and she was almost completely recovered from the lethargy and overall sluggishness.  Here she is getting ready for bed, but daddy put the leg into the wrong sleeve.  She thought that was hilarious.

She also started tolerating the walker and leg press again, which is great news as her development depends on consistent physical activity to develop those brain connections.

Bill original built the leg press to help with evening out her legs in terms of strength, but Maddie’s left leg is so strong, it can basically push her up without using much of the right leg at all, hence we have to hold both legs down.

As Maddie has grown, we’ve had to make a lot of upgrades to the house in order to adjust to her size.  One problem has been getting her in and out of the bath each evening.  With her being around 45 lbs, it required lots of bending and as she got stronger, the risk of an accident increased as well.  A while ago, we built a changing table that fit over the toilet and could be removed for cleaning/guests.  The right side had a pull out that extended over the tub as Maddie grows longer and could be retracted when she’s in the bath chair.  This helped with the constant bending and lifting and has helped prevent injuries to both of us.

Another recent upgrade has been the installation of a stair lift!  We had explored many options, including moving her bedroom downstairs to the main floor, building an elevator shaft outside, and even reorganizing the garage to fit another room.  However, a curved stairlift was the easiest solution that could be removed if she were to learn to climb stairs in the future.  Unfortunately, we signed the contract right before the VA stay at home orders and the installation didn’t happen until April, so we had to take a lot of extra precautions (including taping up and sectioning off the foyer where the installation team worked (with masks and gloves)).

The stair lift was customized to fit our stairs and was built to keep as low a profile as possible so that it wouldn’t impact normal stair usage.

The final product runs very smoothly and we ride it every day with Maddie in our laps for now.  Eventually, we think she should be able to ride it by herself, but she seems to enjoy it.

(update 11/22 – she rides up everyday seated on the chair with older sister either standing or sitting next to her – definitely not the intended use for this chair, but they are way under the weight limit of 350 lbs).  The stair lift has greatly decreased the risk of catastrophic injury were one of us to take a tumble with Maddie in our arms.

Older sister has also been helping a lot.  With everyone being at home, she’s helped us with Maddie’s food, toys, and overall care.  We are so grateful for such a helpful sibling!

Here is a fort built by the older one to prevent injuries when Maddie is rolling around on the ground.

Maddie enjoying a walk during the height of the spring cherry/pear blossoms in our neighborhood.

May

Maddie continued to improve her motor functions and we saw consistent progress across all areas, including walking, sitting, fine motor control, and problem solving.  The biggest improvement was her learning to pick up a piece of cracker from  bowl and feed herself.  She has been doing well when we give her a puff or cracker directly into her hand, but now she’s repeatedly going back to pick up pieces when she’s done eating.

Sitting and being able to balance on a chair or bench has also been an improvement.

As the weather got better, we were still observing the stay at home orders in VA, but got to get outside more.  Here we are enjoying some time on the lawn.

Maddie has grown too big for the small bike trailer that we used for older sister, so we upgraded it to fit a full sized car seat and still have roll over protection. Probably not street legal, but it works well for going on family bike rides and picnics!

Ever since the steroid regimen ended, Maddie has not been taking consistent naps. But one good side effect of going on a bumpy ride in the bike trailer is that it lulls her into a light sleep (and gives Bill some much needed exercise).

As the weather got warmer, we tried to let Maddie explore more activities outside. Here we are trying to have some water time since the pools were not open yet due to working through COVID procedures.

Maddie was able to sit and play with the water – it was a new experience for her since we don’t give her full baths.  She repeatedly splashed the water with her hands and expressed her desire play more.  It is a big step in her cognitive development.

For her legs, we started doing more with a small trampoline a neighbor gave us. She wasn’t able to stand on it herself, but with some assistance, she could jump a little bit but more importantly, she could balance while sitting, which works the core muscles.

We also have a larger trampoline outside and as the weather got cooler in the fall, Maddie spent some time on it as well, creating more of a challenging exercise regimen. Everyone thoroughly enjoyed the PT session!

Another development that we’ve noticed over the summer is her increased cuddliness.  Maddie has never liked to hug or be held very long and even if you hold her hand she pulls away or bats at you.  Only rarely could we really hold her and cuddle (most recently during her steroid regimen, when she was very lethargic).  But over the summer, we noticed she would like to lean on us or seek out contact (but only a foot or leaning, no hugging yet).  Here you can see she’s found older sister and is leaning all over her.

She’s also been able to tolerate some cuddling in the early mornings when Bill sometimes joins her in her bed so she can get a few more minutes of sleep.  It is extremely rare, but she did sleep a little bit tucked into his arms.

 More recently (Nov) older sister has been reading a few pages of her books to her right before they both go to bed. Maddie is starting to realize that snuggling and being comfy is actually really great!

(She even fell asleep one time and Bill had to wake her up to put her in her own bed).

Maddie’s 5th Birthday!

In August we celebrated Maddie’s 5th Birthday and marked 4 years since she came back home from her surgeries.  She helped open some presents and was very engaged with the new light up toys.

The requisite family picture took quite a few more takes than usual with a much more mobile Maddie (who also has a lot more opinions now).

We also got her a little cake and with the darker background, she was able to see the candle!  It was a rare sweet treat for Maddie!

In the late summer / early fall we started transitioning to the fall school year and continued to do more activities outside.

Fall walks in the neighborhood were much better with the cooler weather. Here’s Maddie enjoying the babbling water of a stream.

Maddie’s core is also strengthening more, and we’re so proud of her progress with sitting straight. Here she’s sitting on the bench and we’ve distracted her with a tambourine so she doesn’t focus on the difficulty of balancing.

To create even more of a challenge, Maddie can also sit well on the small rotating chairs we purchased for older sister’s virtual classes. We have been extremely thankful for all the progress she’s made with sitting up.

We also had to venture out to the pediatrician and cardiologist’s office and Maddie did very well sitting up on the examination table.  Both the doctor and cardiologist were amazed at her progress since it had been about a year since either had seen her. Everyone was in masks and we tried to minimize the exposure time but Maddie would not keep her mask on very long, so we tried to stay separated as much as possible.

Here she is exploring her surroundings at the doctor’s office.

And here she is showing off her multi-tasking abilities at the cardiologist’s office. Her heart doctor at first was very nervous about her sitting because he simply could not believe her progress over the last year. He kept jumping forward to catch her when she shifted her weight before realizing how much stronger she was.

She got a clean bill of health from both the pediatrician and the cardiologist visits.  Her heart function is very strong and the enlargement of one of the chambers was small enough to be within a healthy range, not requiring any further intervention.  She was very brave for her 5 year old vaccine booster and flu shot at the doctor’s office.

As fall weather came in, we ventured out to a park for the first time all year and Maddie enjoyed her car ride (by falling asleep) as well as the walk through Burke Lake.

On the way home, she showed off her sitting again by having snack in a parking lot without having to use her car seat.

We also decorated for Halloween and Thanksgiving with lots of pumpkins and new lights for the front of the house. One thing we’ve been very thankful for during this pandemic is the extra time we’ve been able to spend with her. She’s grown more sensitive to being left alone and actually seeks out human contact more.

Another improvement that Maddie has made is the ability to hang on for piggyback rides! She loves to ride on Bill’s back while he chases older sister around the house. As she’s grown stronger, Bill’s back can be straighter without fear of her falling off.  Her balance has also gotten better, so she can stay on even when turned 45 degrees to either side.  Her love of piggyback rides is very clear because she will push herself up from a prone position in order to climb onto Bill’s back. This is our new sit up training technique where we lay her down on the couch and Bill sits in front of her legs to entice her to sit up and grab a hold of his shoulders for a short ride. Then they repeat the whole process.  She loves it and we love that she’s getting more exercise.

Maddie also started kindergarten this year! Due to COVID precautions, FCPS started the fall semester fully remote for all students including Maddie’s special needs kindergarten class.  The remote classes include a morning meeting and individual sessions with the teacher or specialists throughout the day.  It took a while for her to get used to the schedule, but now she loves the songs in the morning and can tolerate longer sessions with the teacher.

Her lack of eyesight severely limits her participation in the class sessions, but with music and sound effects, the teachers have been able to create a curriculum that at the very least keeps her attention on the iPad or laptop.  We’ve also received a lot of take home items from toys to CVI friendly books with shiny pages. These have been useful in order to follow along during specialty sessions since the tiny screen is very hard to distinguish for her.

With the virtual sessions being so hands-on, Jen and Bill have had to juggle meetings, feedings, older sister’s virtual school needs, and meals for the past few months. It has been a trying time with lots of late nights working to make up for lost time during the day. Please continue to pray for wisdom and physical stamina as we will probably have to continue this schedule for the foreseeable future.

Towards the end of the fall leaf peeping season, we did a socially distanced family photo shoot and wanted to share some pictures.

More News! 

As some of you might know, we’ve got more news this year:

We are expecting a little boy early next year!  Jen is weathering the pregnancy well and the baby passed all his tests and check ups. There are still some lingering issues with nausea and fatigue, but overall it has been an uneventful pregnancy. We ask that you pray for the baby, Jen’s comfort, and the upcoming changes for our family. Much depends on the availability of vaccines, the safety of the hospitals, and the overall situation in Northern Virginia. We hope that everyone stays prudent and we aren’t faced with delivering a baby in a short staffed hospital with overflowing COVID wards.

On the work front, Jen’s job has been less busy after a hard winter and spring. The workload is more manageable and she can actually log off at a more reasonable hour.  Bill’s work is related to RV’s and with the pandemic has seen a drastic increase in workload. He was promoted and has been busier than ever all summer, but still has flexibility to make sure Maddie and older sister are taken care of. We are extremely grateful to have both started full time jobs more than 6 months prior to the pandemic, giving us time to adapt to remote work. It shows how God’s plan is more perfect than whatever we could imagine and gives us hope and faith for what’s to come.

Maddie’s progress this year has been both cognitive and physical. She’s improved in areas we did not anticipate and has stayed relatively steady in others. Her vision has not improved as much as we would have liked and her right leg is still far too weak to walk smoothly.  However, she has made huge strides with her sitting, balance, and overall strength. Her cognitive growth has been more noticeable when she’s lonely or hungry. Her previous protests were limited to vocal cries while now she can babble a few consonants and burst into full on tears if left unanswered.

We are also SO DELIGHTED that her seizures have not returned all summer and fall.  She does have occasional fluttering of her eyelids, but no full force tonic seizures as before. We ask for continued prayers that her seizures do not return and she can continue to improve/heal without another steroid treatment.

Please continue to pray for her development, her healing, and for our family as we juggle all the needs during this extraordinary time.  We look forward to seeing everyone again once this is all over but in the meantime, we wish you and your families a safe, happy, and food-filled Thanksgiving holidays!

Bill, Jen, and family