Happy New Year Everyone!

We’ll start off with some holiday pictures 🙂  With Maddie’s hi-low base, we were able to lower her seat to the ground so she could enjoy some present-opening Christmas morning!

We were so excited she tore the wrapping paper until she started to eat it…

Some self-portraits…

and some sister shots with Abby!

As promised in the last blog post, below are pictures of Maddie in her gait trainer.  The first week was more transitional, but since then we can see that she wants to move.  When she realizes that she can move herself, she really goes!  We’ve seen up to 6 consecutive steps!!!  Although there’s still a lot to work on (e.g., keeping her head up, arms up, etc.), it’s so encouraging to see that she’s interested in moving.

Maddie has also been spending more time on her stomach (without being forced upright).  Previously, she would turn onto her stomach and immediately try to roll back onto her back.  However, now, she’ll stay for a little while before rolling back.  See picture below for how high her head can get now!

We’ve continued to practice sitting as well.  Below is a different sitting position (instead of on the floor) where her legs can hang and her feet can prop against a surface, which gives her more support and can help straighten out her back.

From a fine motor perspective, Maddie has been using her left hand more and more purposefully.  Her hand reaches for the bottle more often than before and will stay up to hold the bottle for longer than before as well.  See below for her firm grasp on the bottle!

Another example of her left hand movement becoming more purposeful can be seen below.  Bill built her a little contraption to allow her to pull at a chew toy.  The wooden dowel is a good thickness for her to easily grasp so Bill cut the red plastic end from another toy to put onto the handle.  Before this contraption, she would hold a toy, put it in her mouth, and then throw it down onto the floor.  To avoid that, Bill attached the wooden handle to a retractable office badge holder so now when she lets go, it stays up and she’s able to grab again and again!  See how happy she is!

Being the middle of winter, it’s been hard to find soft fruit for Maddie to eat (other than pears and bananas) so I asked our feeding therapist if Maddie’s able to try berries.  We happened to have raspberries during our session and Maddie had no problems and really enjoyed eating them!  It’s a win when we can add new foods!

We saw the GI doctor (last seen in March for g-tube removal) in early December due to some concerns by our pediatrician since she gained two pounds in two months during late summer.  To give some perspective, a toddler gains on average, 4 pounds in their third year of life.  Immediately after the pediatrician appointment in August, I made some changes to Maddie’s diet (e.g., switched from whole to 2% milk, replace her rice with cauliflower) and her weight seemed to have steadied out within a few weeks so I wasn’t too concerned.  It was probably just too many calories without enough exerted energy.  I then shared a week long’s food log with the nutritionist that works with the GI practice and after analyzing her caloric intake along with her basal metabolic rate, was very happy with her current diet and said she was receiving all the nutrition she needed.  If anything, she needed a bit more fat in her diet (e.g., avocados, oils, nut butters)!  Also, they didn’t see a need to see Maddie regularly unless anything else changed, so I just added more olive oil and peanut butter (which she loved anyways) to her diet.  In the past week though, she’s made it very clear (through nonstop/almost angry vocalization) that she’s hungry, so I increased her daily caloric intake.  I’m not sure if she’s going through a growth spurt or the gait trainer is causing her to exert more energy, but let’s hope I can find a good balance of intake/output while maintaining a steady weight!  We have some upcoming follow-up doctor appointments so I should be able to monitor her weight fairly easily.

As mentioned in last time’s blog post, Maddie’s seizures were better and stayed better for a couple weeks, but the frequency/severity last week seems to have gone back to its previous state prior to the most recent dosage increase.  However, this past weekend, it’s gotten better again, so we’re not sure what it is.  We’ll just continue to observe and see how things go.

Thanks for all your prayers: Maddie’s cold (mentioned in last time’s blog) didn’t get worse and she recovered well, although the rest of the family took their turn fighting colds!

To end, I captured some photos during a particularly expressive laughing session where she fed off of my laughter, which in turn caused me to laugh louder and her as well.  I treasure these precious moments and am so grateful these are becoming more frequent as she recovers.

We hope that everyone is staying warm in this weather and had a great start to the new year!