Tuesday, December 17, 2013

Reaching 4 The Stars

Isay just turned 4.

I was just looking at her past photos and realized, not only how much time flew, but also how much things have changed.  In spite of that forever feeling when waiting in between developmental milestones, 4 years passing seem to take us by surprise. Her face has changed so much, her activity has changed a lot, but her persevering spirit lingered on.

Here’s a quick journey of the first 4 years in Isabella’s life…

Year 0 to 1: This was an emotional year for the whole family. The diagnosis brought us for quite an emotional roller coaster ride of sorts, but we pulled through. This year, we had to deal with feeding issues and a lot of throwing up. We had to deal with having a child with a cleft palate. We went from having an NG tube to a G-tube (@ 4 months).  The docs said she has brain fluid and brain cysts, she can’t hear, she has kidney problems, she has acid and kidney reflux, and a heart murmur. We had cleft palate surgery and 2 major seizure episodes. BUT in spite of all that, Isabella was able to learn how to hold her head up, and that one thing that came right on time, was her social smile.  Early intervention services (Infant Specialist, Educ OT, Feeding OT, and PT) started when she was 3 months old.

Year 1 to 2: This year she started to eat more, but we still give her a bolus from time to time during the day. Her throw ups were erratic and almost nonexistent. Her kidney reflux resolved itself and her kidney function went up to 95%. A sedated ABR was done together with ear tube placement surgery. Her hearing issues were resolved, and as it turns out she can hear us. She started to make noises. We We dealt with 2 more major seizure episodes this year. BUT, in spite of all that, she learned how to sit with support, to without support, and managed to learn how to crawl.

Year 2 to 3: We found out that she has sleep issues and so another surgery to remove her tonsils and adenoids were done, and her 2nd set of ear tubes were placed at the same time.  This year all her daytime feeds are by mouth, but she still requires an overnight feeding pump.  We battled with insurance and the regional center and eventually we got a nurse to take care of her during the daytime. Her heart issues were resolved. We had one seizure episode but need not take a trip to the ER nor call 911. BUT, in spite of all that, Isabella learned how to pull herself up, and started cruising. She also figured out how to climb up the stairs and scoot her bottom to come down safely.

Year 3 to 4: This year, Isabella has been making more noises. She grunts, makes sounds, and squeals. She started school this year and seems to be really enjoying it there. She has shown signs of receptive language skills. She was weaned off one of her seizure meds (phenobarbital) and is only currently on Kepra, multivitamins, and nothing else. She is seizure free for a year. We are currently tipping the scales at 24lbs! We are also anticipating surgery to replace her ear tubes (again) soon, as well as an MRI just to follow up on her brain fluid and cysts. When literature said 50% of WHS cases may never learn how to walk, she went against those odds and has been walking and walking and walking everywhere!  

With all that Isabella has achieved in the last 4 years, isn’t it only apropos to have a “Reaching 4 the Stars” themed birthday party?

We love you Isabella and we anticipate for you to grab more stars!  

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