Apr 15, 2021

Growing Up

If you have been following my blog for a while, you know that I tended Teach's two little ones from the time they were born while she taught 4th grade (and 5th and 6th). Her little guy, Twizzler, from the previous post, was only 6 months old when the pandemic pulled Teach out of the schoolroom and allowed her to teach online classes with her babies at home.
Twizlet was all mine during the day (except for summers) until she was 3 1/2 years old. She and I had built a strong bond and she always wanted to tell me everything.
Then Teach and Twiz moved their little family to New Jersey; a move that has been an amazing thing for Twizzler's health and for Teach. She is going back to school now and working on her MA. 
But it hasn't been a great thing for me and my relationship with my little granddaughter. She and I have drifted apart and other than a portal call every day or so and a few Marco Polos, I am not nearly as important in her life as I once was. As you can see, she would rather hang out with Baby Doll and Scout. She is a big girl now!
I'm happy for her and the growth she has made over the last 9 months. She is so young, she probably doesn't even remember.
But it is a time in my life that I will never forget.

Apr 13, 2021

Guest Blog: Mowat Wilson Syndrome by Teach

When Teach was with us last week, she received the call from the genetics team. Her lttle guy was diagnosed with Mowat Wilson Syndrome...

We received genetic testing results back this week and we were not shocked to discover that Twizzler had a missing portion of the ZEB2 gene on his 2nd chromosome (I think...?) He has been diagnosed with Mowat Wilson syndrome. 

The geneticist mentioned this specific syndrome back in January so I have already done a lot of research - we are happy to hear the answers for everything that has affected Twizzler so far. I included a link if you’re curious to know more. Here are some highlights: 
🎈His facial features are very similar to other MWS kids. The ears are just so adorable! 
🎈It is considered a rare disease with only about 350+ documented published cases, but researchers believe it is under diagnosed. 

🎈Similar to a genetic syndrome like Downs, there is not “cure” and he will require aid and support forever. 

🎈His heart and urology problems as well as reflux and constipation are all explained by the diagnosis. 
🎈Most of the kids with MWS have seizures. He had another one this week. There is little research on if they outgrow them because the disease was only discovered 23 years ago. 

🎈It is a spontaneous chance at conception - but Andrew and I will be genetic tested just to make sure. 

🎈He will hopefully learn to walk between 3-4 yrs of age, but because he pulls to stand and cruises, they think it could be sooner! 

🎈Many MWS children never talk, have limited speech or use augmented systems like sign language. We will wait and see. 
🎈He will be closely monitored by neuro-genetics and pediatric development teams at CHOP Children’s Hospital of Philadelphia. It is the second best pediatric hospital in the country. 
🎈Twizzler will continue his three hours a week of therapy and potentially that will be bumped up depending on what Development thinks he needs. 

I will be documenting his (and our) journey on a blog I am in the process of setting up for him. Heavenly Father told me that Twizzler would be special and He was so right. ♥️ We are not sad or angry about this diagnosis. We feel peace and hope in knowing that we have a very special son. 

He is wonderful. I hope all of you, my friends, will be able to meet him at some point, because he has brought something special with him. ♥️ We sure love our little guy. 

https://mowat-wilson.org/living-with-mws/mws-genetics/

Apr 12, 2021

Hogle Zoo

Although Teach and Twiz left town a few days ago to head back to New Jersey, I still want to tell you about our trip to Hogle Zoo. 
Last year, before COVID-19 hit, we spent many happy hours using our membership to take the kids and grandkids to see the animals. Now that things are opening back up, we were excited to contine that tradition.
Not everything was completely the same, but it was pretty close.
The kids loved the baby zebra and the little monkeys. The lions stretched and yawned for us. It was a beautiful day.
So glad to be back in the wild!

Apr 11, 2021

Happy Car Day to Me🎶

It seems like my life has been incredibly crazy this last week or so, and one change that became necessary was getting rid of my car. We have had a gray SUV since I wrapped my white Lexus around a tree in December 2019. It has caused me nothing but trouble.

After pouring thousands of dollars into it, my sweetie finally found me a car that we both liked. It's not new, but it is a 2014 Buick.

🎶 Happy car day to me...🎵