IFSP = I Find Some Problems, and Early Intervention

Ok, IFSP does not stand for "I Find Some Problems." It stands for Individual Family Service Plan.  An IFSP is a summary of services for a child who has developmental delays before the age of 3. This is to assess her eligibility for services, but she is automatically eligible because she has Down Syndrome.

Once she turns 3, she will get an Individual Education Plan (IEP), which is geared towards preparing Evie for school. There are an awful lot of acronyms in the world of special ed,  and I am still learning.

Basically a team from the Early Intervention program comes to our house, and they have a checklist of developmental skills to assess. She gets a score in each category at the end, and then they tell us how Evie is doing compared to her peers.   Last time we did this, she was 3 months old, the questions cracked me up, because she was only 3 months old and couldn't do most of the things listed (but who can?).

3-month old Evie (and Violet)

14 month old Evie!

This year, the IFSP did not crack me up, but I am trying to take it with a grain of salt.  We knew Evie would have some developmental delays, but it's still hard to hear scores assigned to my baby girl.  Hence the "I Find Some Problems." There are several categories:

Fine motor
Gross motor
Perceptive language
Expressive language
Social/emotional
Cognition

Her lowest is gross motor skills at a 5 month level, and her best is social/emotional at an 11 month level.  The grain of salt part is that Evie is not a fan of showing people what she can do when she's not feeling comfortable with them.  If she doesn't do something during testing, she doesn't get that point. The team was quick to reassure me that Evie is making tons of progress, especially since she had 5 months of dealing with 3 holes in her heart, so she couldn't develop as quickly when she was working so hard to just "be."

I am proud of Evie for getting this far.  She may not have extraordinary gross motor skills, but she is extraordinary in so many other ways to me!  Thank God for a great team of people (5 awesome ladies!) who come to our house each week to help Evie become stronger and more well-rounded. Seriously--it's actually pretty amazing that we have people who come to help me make sure that Evie is developing well.  I definitely wouldn't know to pay attention to all of these things as a first-time mommy!

Our awesome Team Evie! (and a grumpy Evie, and even Violet made it in the pic!)



Today's post brought to you by the letter R...and S...andV

After five days in the hospital for RSV, we are home!   I never knew what RSV was until we were in the NICU.  RSV stands for respiratory syncytial virus. Most kids get it by age 2 and get better in 1-2 weeks. But kids who are preemies or have respiratory issues are at higher risk of getting bronchiolitis or pneumonia. Evie got bronchiolitis. Hence the fast breathing that alarmed me and brought me to the ER.  Our other little friends with Down Syndrome had RSV, and I guess we joined the club. 

I'm pretty skittish about being around people with colds now. I used to not care, but now if I get sick, there's a high chance Evie will get it, and it is so sad when she is sick. I also do NOT want to spend more nights sleeping in the hospital, as fun as it is to see our friends there! 

So please don't be offended, friends, if you lean towards Evie and then I ask you if you'd like to use my handy Purell hanging from my purse. I'm protecting my young. :)

Here is Evie after her bath to cleanse her from all the hospital germs.  Clean and happy! 



Evie lost a pound during her hospital stay, which was a bummer since we were hoping to decrease the amount of food we have to give by g-tube.  But the good news is that if we can get her back on an upward trend in weight, then we will have a new Nutrition plan to help her to eat more by mouth. Here is Evie at a GI follow up and clapping for her eating log where we record how many bites she eats each meal! 


Summer School and Evie's G-Tube Update

When I was growing up, I thought summer school was only for children who didn't do well academically.  Now that I have a child with spec...