Hello Everyone,

It’s been a really long time since we’ve done an update on Miss Paige.  She is now 4 years old and will turn the big 5 on April 27th. She weighs 25lbs and is about 37 inches.  She isn’t talking, but she always manages to let us know what she needs.  She isn’t crawling or walking, however she does get around the house by rolling.  Her sitting was really good around the age of 3, however, she has decided that she doesn’t really like sitting.  She can do it, it’s just really hard for her and she’s STUBBORN! She isn’t eating anything by mouth and is still taking feeds through her tube once an hour during all her waking hours.  We feed her once an hour, because she is so volume sensitive and likely to throw up if we give her too much food for her belly.  She has no interest in taking tastes of any food.  She will bat away any spoon headed towards her mouth.  Tooth brushing is a challenge.  She hates it.  It’s tough to do a good job, but we do the best we can while avoiding getting bit!

Paige loves visits from her grandparents.  She has many special connections with them.  I am just happy that she seems to know and remember them each time they visit.  They all have their own special relationships, which is very encouraging.  Paige loves a program on Netflix called Little Baby Bum.  One of her favorite things to do is listen to music with her dad.  She prefers country music, but also likes Train and Maroon 5.  She will definitely let you know if she’s not digging the music.  She also loves cuddling with her dad at bedtime and watching shows with mom and dad.  We watch Wheel of Fortune together almost every night.  She always falls asleep in her daddy’s arms.

She has been going to the local public school for half a day since she turned 3.  Paige seems to really love school and riding on the bus to get there.  She has a wonderful teacher, aid, and therapists that help her be the best she can be.  Her first year in school was tough as she seemed to get sick often.  She was hospitalized three times – once for RSV (with seizure), once for pneumonia, and another time for a bad tummy bug.  She has not had a big seizure since November 2019.  This school year, she has become sick, however, it has not been serious and we have not had to take her to the hospital.  She seems to bounce back quicker, too.  She started the human growth hormone shots about 6 months ago.  We haven’t seen major improvements in gross motor or cognition, but we are going to stay on them for at least 6 more months just to see if they can make a difference.

Paige has an amazing therapy team at home.  She sees OT once per week where she is learning to maneuver different toys, use her hands, and practice in her stander.  She sees PT twice a week, and she works on bearing weight on her legs, walking (she knows the motions, but can’t seem to bear weight for too long), sitting, and being in a crawling position / putting weight through her hands and arms.  I am proud for how much she tolerates each week as she gets stronger and smarter.

Overall, Paige is a very happy and (for the most part) healthy child.  She is a joy to be around and can make anyone smile.  I’m proud to be her mommy.  🙂

Paige enjoying her new Special Tomato chair. It’s still a little big for her, but she’ll grow into it!




Paige exploring the kitchen in her new gait walker. She’s not quite walking in it yet, but she has moved it, so that’s something, lol.

Paige waiting on the bus to go to school. We spend a lot of time waiting on buses it seems.


7 Responses to Update on Paige

  1. Marie Jules says:

    It is amazing how our children can forecast their personality and make known their like or dislike without having to vocalize it. Great article, thanks for sharing

  2. Odell says:

    I really LOVE this!!!! ♥️

  3. Sheila Bullington says:

    What a beauty! She reminds me so much of our granddaughter ❤️

  4. Kelly Rasmusson says:

    Oh my goodness Paige is so absolutely precious!! Our Bethany who has wolf hirschhorn is also almost 5 years old!! I loved reading your update, I will pray that the Lord strengthens sweet Paige day by day. You are doing a wonderful job.

  5. Kelly Rasmusson says:

    I forgot to add that I LOVE that Paige loves little baby bum, that is Bethany’s favorite show too!!! How funny is that!? She is just a beautiful little girl ❤️.

  6. Anitra says:

    Paige! Your smile brings me, and so many others, so much joy! You are such a hard worker, girlie, and I’m thrilled to hear that you’ve been able to stay pretty darn healthy, too. No easy task. Elsa also still struggles with reflux, so we take omeprazol daily. We’ve tried to get her off it, but with no luck so far. My girl loves Little Baby Bum, too! How funny! I was dying laughing about spending so much time waiting for buses. We feel you over here, Paige! Thanks for the awesome post. Sending hugs to you and your family, Elsa & Anitra

  7. MichaelMarini says:

    Keely….Thank you for your kind words about Lisa! Paige has such a beautiful smile!!! I look forward to reading more updates soon 🙂

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