It's Spring!!

Hello and Happy Spring!
Life has been full of chaos and bliss (Is that even possible?), hence the long delay in writing an update! Can you believe our precious Jules is 21 months old?! Time flies when you're busy as a bee, conquering therapy goals and of course, having lots of fun in between!
Life is such a blur some days. Sometimes, I find myself stuck in 2015, on that cold December day when our baby had her first seizure. Why though?  Why do I always go back? Is it anxiety? Fear of going back down that long, dark road? Or is it a reminder of how much she has accomplished? I'll go with the latter!

SHE has come so far since then. We have worked so hard for HER and with HER over the last year and a half. SHE is our top priority and SHE, in return, has given us so much hope, joy, love and PROGRESS! My hubby jokes that PROGRESS is HER middle name!!
Today at therapy, I held a dear friends precious baby boy in my arms as he had a seizure/episode of infantile spasms. I had a roller coaster of emotions and this numb feeling entered my body. As I held this sweet 8 month old boy, I couldn't help but track back to the days before Juleyana was started on anti seizures meds. It was a traumatizing time in our life and I  am so glad we haven't experienced it since. This sweet boy's mom is working on getting his seizures under control, and I hope they get relief soon.

RARE GENE DAY 2017

Jules may be our top priority, but brother and sister are just as important. My husband and I try our hardest to keep life in all of our kids. Yes, Jules needs some extra TLC, but we don't let that interfere with our oldest two, simply being kids.
Jaylene started recreation soccer a few weeks ago. Recently, a club team has had an eye on her also. Needless to say, we signed her up! Why two teams? Because she loves it! She is busy with practice four days a week and games on weekends. She continues to excel in school. She is the master of sight words and received a Reagan reward, among many others.
Dylan is playing t-ball for the Boston Redsox! He gets better everyday and is quick to scoop up grounders! He also enjoys riding his bike with no training wheels! Dylan is doing very well in preschool, passing all of his tests at rapid speed.
Back to Jules. At this moment we are still waiting for results from the Mayo Clinic for her Urine and blood tests. I will update the blog with results as soon as we get them.
Last week we had our 6 month progress/evaluation report from Inland Regional Center. Let me start by saying, I cannot believe how time has flown by. Six months already! Are you kidding! Our progress report shows that Juleyana has met some of her goals (sitting stable on her own, transitions from sitting to quad, and crawling for 5 feet or more) and continues to develop the others. We will have another evaluation/meeting when she is 2 years old.

We were also notified that at 3 years old she will go into the school system. This makes me very nervous, but I have heard nothing but good things from those who are currently in or have been in the program. This will be a trying time for me (Jules too) as we don't do well apart. However, I will always do what is best for my baby girl. I want her to constantly progress and smash goals for the rest of her life.
We are still currently getting two home therapy sessions per week and five therapy sessions at Jump and Schout, per week. Between the seven sessions, Jules receives occupational therapy, physical therapy and speech therapy.

Therapy Update
We are still continuing our rigid therapy schedule. She has recently started to stand with only holding on with one hand, and sometimes she gets brave and lets go.
Juleyana's physical therapist is looking to get AFOS (leg braces) for her pronation (feet roll in when standing -though not a whole lot). Having her wear shoes has been helping  a lot. She is also considering a walker to transition to walking. We all know and have high hopes that Juleyana will be walking with or without the help of a walker.

We have found that Juleyana uses clapping to sign the word more. She can't physically do the sign for "more" due to her fine motor delay, but we continue to work with her each day.
As always, thank you for reading and for your support in our little girls journey.

Bee Buzz
•Weight: 21lb 9oz
•Head: 41.5oz
•Length: 34in
•She is no longer on a bottle. She drinks from a straw sippy cup.
BIG GIRL!
•She has increased her diet, though we still give her 2 pediasure shakes a day.
•Still loves her avocados!
•Loves to be chased and get rowdy!
•Enjoys being outside in the sun and fresh air.
•Loves to be in the water, kicking and splashing water everywhere!
•Juleyana continues to progress, provides tons of kisses and love and be amazing!

Keep a look out for our next update!