Gi’s Journey

Go Giselle Go – An Update

As I mentioned in my  previous post, there are some new things that Giselle is doing and I wanted to take this opportunity to share all of our recent victories, emerging skills and some challenge areas.

VICTORIES

  • Mama Is No Longer a Milk Factory!
    • After almost THREE LONG YEARS Giselle is no longer nursing! {cue the confetti} Never thought I would say those words since I tried and tried and tried some more to wean her for the longest time but apparently a little congestion did the trick and she hasn’t been able to or want to nurse since!! October 24th will forever be marked as Mama’s Freedom Day !
  • Up She Goes!
    • Oh, Giselle is pulling up on everything! It’s like she’s doing her own physical therapy these days with all the ups and downs she does. For now, she’s using the couch and low tables, but all that exercise is not going in vain for all the bigger things hopefully to come. She’s even going up the stairs, so we have to keep an extra eye on this little one!
  • Stepping Up Her Game!
    • The quality in her steps is improving every day. We are no longer having to help her shift her weight to put those feet forward because she is taking some nice steps in an organize pattern and most importantly she’s moving forward. In other words – SHE IS WALKING (almost)!!!! Not by herself, but this is where it all begins – the fine tuning of the quality before she takes off one day.
  • Eating for Two
    • In a previous post I spoke candidly about our fear of her lack of weight gain and how intervention was on the table of discussion. Eating was a nightmare – a chore for not only for her but for the whole family. I am SO pleased to say that not only does she eat, but she eats SO MUCH now!! Not only does she eat, but she’s not a picky eater, which is another blessing. Even more, she’s self-feeding with yogurts and similar foods! An even bigger milestone in this area is that after almost 2 years with no significant weight gain, she went from a -stagnant 18-19 lbs to 25.5 lbs in the last few months! I could seriously cry over how happy this makes me!!!

EMERGING

  • P is for Phone
    • Anyone who knows Giselle, knows how sacred the phone is to her – and us. ABC Mouse songs have changed our life but it’s a love/hate relationship. It’s a huge motivator for her to move and gain those skills all the while make her more and more dependent on it. I would like to see her no longer need it, but it’s so important in her therapy that it remains an area that needs work in finding the balance. We have however, reduced the time she has it and sometimes just play the music so she can hear it but not watch the videos which has been ok so far.

CHALLENGES

I share these last because unlike most medical professionals, I focus primarily on all that Giselle CAN do and then go to what still needs work.

  • No One Puts Baby In A Stroller
    • Giselle is not a fan of strollers or gait trainers and the only way for her to tolerate being in either is to have ABC Mouse videos playing as a distraction. This is obviously not going to translate well into a school setting, so I’m going to leave it up to the experts because I’m not sure how we are going to work that one out, while making everyone happy (yet). No phone while in the stroller = screaming bloody murder and my girl can scream for hours upon hours!
  • Crowd Control Patrol
    • Crowds to Giselle can simply be a few people or kids and it’s enough to be overwhelming and scary for her. We are still trying to incorporate play dates on a smaller scale and some days it works and other days we fail miserable in finding that balance for her. This is the area that’s been the hardest to understand because of communication barriers, so it’s become our top priority to figure out how to work things out. Overall, socializing has been a challenging part of her daily life, so we are always trying to find a way to figure out what works.

SO WHAT’S NEXT?

If you follow us on IG then you know the upcoming IEP meeting that’s next week. As I tell my family, I like to take things one heart attack at a time! We are still in the process of getting her specialized chair delivered and hopefully get it in time for us to get Giselle used to it prior to her starting school. Other than that – we are just surviving and chugging along! We are on the brink of a new season and there are lots of emotions that will need to be posted separately, but as always we move upward and onward !!!

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