Tag Archive | milestone

Three Years of Blogging

Three years ago, I started this blog as a way to update friends and family about what was going on with Little Miss Minion. Our cell phones were blowing up with messages and phone calls, all wanting to know the latest on our little family. It was nice that so many people wanted to know how we were doing, but cell phones are a NICU nightmare for germs. I created this blog as a way to update everyone at the same time, reducing our need to touch our phones while in the NICU, and cutting out the time it took to answer everyone individually. This let us have more time to spend together, sitting on the couch in our room in the NICU, staring at the tiny little human growing in the incubator.

To everyone who reads this, thanks for being a part of our NICU journey.

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Happy 3rd Birthday!

Little Miss Minion turned three about ten minutes ago. It’s hard to believe that we started this journey three years ago with a one pound fourteen ounce 28 weeker and now we’ve got a little kid who just graduated from all of her therapies and loves to give hugs and eat cheese its.

We are so lucky.

End of an Era

A few weeks ago, Little Miss Minion had a special education evaluation through our school district. They did a series of tests to see how she performed in several areas, like speech and gross motor skills. This morning, we got our answer. Little Miss Minion has been disqualified for further services. This means that, according to the school district, she is caught up with her peers on gross motor skills, speech, language, and cognition.

It’s a strange feeling to know that we don’t have to schedule weekly speech therapy and physical therapy anymore. We’ve had someone come to our home to work with LMM ever since she came home from the NICU. So many appointments, tests, clinics, screenings. Part of me is a little in denial. How can my one pound fourteen ounce 28 weeker NOT qualify for additional services? She’s had five brain surgeries! She has actual brain damage (called periventricular leukomalacia). She spent the first 3 months of her life under 24 hour care in the best NICU in our area.

She caught up. That’s how she doesn’t qualify. Not only did she have to consciously learn to breathe on her own, how to suck, swallow, and breathe while taking a bottle, how to regulate her own temperature, how to regulate her heartbeat, how to live in the world three months too soon, but she did all that and more. 36 months after her dramatic entrance, she’s caught up to where she should be. At this rate, who knows how far she can go?

Our next steps are to come back for another evaluation (if we feel like she needs it) in about 7 months and to continue to be utterly impressed by our little rockstar.

1000 visitors!

Whaaaaat?!

Yep, this little blog has reached over 1000 people. There’s something like 3800 views and 1000 unique visitors. Wow.

Thank you, dear readers, for coming by and seeing my little slice of life. I’ve had a ton of new email subscriptions and I don’t know any of you! Say hi!

Special Education Evaluation

Tomorrow is a big day for Little Miss Minion. Since she turns three in May, she ages out of the program that has been providing her speech and physical therapies. From here, she either graduates from therapies or she transitions into the local school district to receive services through them. Tomorrow is her evaluation. They will test her in cognition, expressive and receptive language, gross motor skills, and fine motor skills. There are a bunch of percents involved and she has to score below some deviation blah blah blah.

I don’t know the math involved but they take all her scores and compare them to where she “should” be. So basically this is where we find out if she’s caught up to her actual age vs her chronological. Since she was three months early, we adjust her age for three years. Theoretically, she should be caught up by her third birthday. Tomorrow, she’ll do the tests that will tell us how caught up she is.

If she doesn’t qualify, we could always pursue private therapies if we wanted her to continue. Or we could be done until she needs future evaluation. It’s a balancing act. Do we cut the cord and see how she compares to her peers in kindergarten? Or do we pay out of our pocket for therapy that the school district has determined she doesn’t need?

Or does she qualify to continue services through kindergarten? We’ll find out soon!

Reindeer & Santa

The Christmas Season has arrived and Little Miss Minion is learning new vocabulary to go along with it. Yesterday, she asked for “reindeer song” in the car on the way home from daycare and then asked “santa coming?” off and on for the rest of the evening.

She is talking much more since her surgery and my theory is that the fluid was slowly building up and pushing on the part of her brain that controls speech. Less pressure=more talking. Some of her delay could be due to the PVL (essentially, this is dead or damaged brain tissue) but it’s hard to know for sure.

This spring brings the expiration of her enrollment in the early intervention program that gives her physical and speech therapies. She probably won’t qualify for PT since she is pretty much caught up with her peers, so that will be one less specialist. Speech is a toss up right now. There is a big jump coming in expectations and if she doesn’t keep up, she might qualify for services through our local school district. I have a feeling she will still qualify but she’s improved so much over the past few weeks, it’s hard to tell.

Hoping everyone is having a cheery holiday season so far! Remember to wash your hands and keep the cold/flu/RSV germs away!

NICU Developmental Clinic

Every six months since she graduated from the NICU, Little Miss Minion has gone to the NICU Developmental Clinic for follow ups. Our first visit was nerve wracking. Only a week after graduating from the nicu, I had to transport my three month old to a medical center full of little kids (aka germ cesspools) and see how she was measuring up to her chronological age (spoiler alert:not very well, as was expected). We talked about her NICU stay…how she had come early due to my preeclampsia and HELLP syndrome…how she had stayed 84 days and developed sepsis, meningitis, and hydrocephalus…how she had endured brain surgery at 6 weeks old. They had me feed her, so they could see how she was handling the bottle and the Super Preemie sized bottle nipples. I left feeling like this was going to be our lives forever–shuffling her to and from various doctors and specialists. The weeks and months after that were as I’d expected. We saw pediatric neurologists, opthalmogists, hearing specialists, physical therapists, speech therapists, neurosurgeons, and our regular pediatrician. But as the months went on, the number of specialists began to dwindle as she “graduated” from their services. 

Today, LMM graduated from the NICU Developmental Clinic. I won’t have the official results for a couple of weeks yet, but here are some quotes from today’s appointment. 

“She’s absolutely perfect.”

“I can’t believe she has two shunts and presents like this.”

“I ran out of tests for this category. She blew it out of the water.”

“Didn’t she have some PVL (essentially, brain damage)? I am amazed at her development.”

The only thing we need to keep working with her on is expressive speech. The current theory is that she knows the words if they are given to her, but she has trouble “finding” them when she wants to use them. For example, if you give her a series of pictures and ask where is X, she will find it every time. But take those same pictures and ask “what’s that” and she has trouble. 

I’m happy to cross out another specialist from our list. If I’m not mistaken, this takes her down to just a pediatrician and a neurosurgeon, plus our early intervention team. She graduates from them this spring…and might even test out of the school district program that the early intervention shifts into at age three. 

All in all, it’s been a good day in the Minion household.