The Best Summer Yet

 

So sorry it has been such a long time since we’ve done an update! Since Brooklyn’s finished treatment, we have been spending a lot of time having play dates, going to the Zoo, swimming and going to the park. This is the first summer in two years that we have been able to do all the outside things and we are LOVING it!

Once the warm weather hit, it’s been a never ending cycle of “ousside? Paap? Wing?” which starts after breakfast and doesn’t stop until we go to bed. Brooklyn loves going to the park and swinging. Surprisingly enough, she knows the way to the park, the local ice cream shop and the way to grammy’s house once we get into her neighborhood. Watching Brooklyn’s development change and grow is mind blowing and truly fascinating!

In our previous post I mentioned, Brooklyn had her first post treatment MRI the end of May and we were blessed to have another clear scan. She had her med port removed in June, just ten days before she turned two and handled the surgery like a champ. It’s shocking and sad at how small her port is, and the number of poke holes in the little jelly bean center, reminding us of every access, every treatment, and every other intervention she had through that little port.  

 

Brooklyn now has a new eye doctor. Unfortunately she will need to have her 8^th procedure in September in order to straighten her eyes so she doesn’t have such a side eye any more. It was determined that because of the way her eyes are set shes missing some of the field of vision in her right eye, which is why she turns her head and looks at things from the left side. The goal of the surgery is to help resolve this issue, and prevent any postural issues or muscle tightness. With how young Brooklyn, it was determined that she wasn’t a good candidate for formal vision therapy just yet.

Brooklyn has just started with Occupational Therapy and we are jumping head first in to the world of constraint therapy. What that means is that Brooklyn has been given a removable cast for her left arm to help her brain continue to re wire so she is able to use her right hand and really facilitate more neuro plasticity. So far, shes doing well with it and loves to try to use her “helpie” hand to swipe at things and help hold some snacks while shes eating. It’s truly amazing how the brain works. Brooklyn loves coming to therapy and we have loved her therapists- who graciously oblige Brooklyn’s desire to swing… all the time.

At the end of August, Brooklyn will have another scan. Scan anxiety seems to hit different out of treatment for me. We are so thankful to be out of the general anesthesia stage and moving to the light sedation stage because instead of handing her off to someone else for the scan, I was fortunate enough to be able to take her back to the MRI room, held her while she was sedated and lay her down for her scan. The crew of women that had her were so kind, and reassuring that she was going to do just fine.

We have started dabbling into the world of potty training as well! Brooklyn seemed resistant to it at first but now has figured out how to “flush” her potty which says “Hooray! You did it!” to which Brooklyn confirms “I did!” Several times we have had success with going potty on her potty and to watch her grin when we cheer cracks us up!

We have entered the phase of the picky eater and cheeky toddler. Brooklyn has discovered her love for Hebrew National hot dogs and basically refuses to eat any other brand of hot dog. The variety she had with food during treatment has seemed to dissolve but was replaced with a highly antioxidant rich fruits and veggies diet with a few main courses…like ‘dillas, hot dogs and occasionally tuna fish or turkey roll ups with cream cheese. She did try a chicken fry but only in an attempt to ditch the nap and go to the park instead. She continues to try to play in the dog water bowl, dump her sippy cup on purpose, and stare at you while she does it! This is the cheeky toddler! She also tries to curl up as small as she can to make it harder to pick her up when she’s been found out, or she goes limp and lays out flat like when I try to change her diaper… “you will NOT be changing my pants mom.”

 

To know what this little babe has been through, being able to watch her thrive is a blessing. Brooklyn is truly fearfully and wonderfully brave.