Tag Archive | milestone

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!

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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. 

Two Years Adjusted

LMM turned two years old (adjusted) yesterday. Her birthday is in May, but since she was due in August, we adjust for her prematurity when assessing her development. 

She’s up to 23 pounds and is pretty much on track for all of her developmental milestones. Her therapists are working on her speech one a week right now, with physical therapy being moved to twice a month. They want her to say more individual words and then we will move to two word phrases.  Physical therapy is focusing on getting her to clear the ground when she jumps, plus balance on going down steps. 
Not much else going on right now, so I’ll keep this short and sweet, just like Little Miss Minion. 🙂

More Mayhem

The last few weeks have been full of Minion Mayhem, but in a good way. Lots of changes and lots to talk about! Where to begin?
A couple weeks ago, we moved into a real house. We had been in a townhouse previously, which was nice enough but didn’t really have a yard or garage and was basically the perfect home for two people, not a family. We had been looking for new houses casually and then got an offer we couldn’t refuse. Mr Minion’s grandfather was moving into a retirement home and gave us a deal for his house. Mr GrandMinion’s house is perfect: there is a garage, which will be nice in the winter since we won’t have to scrape ice and snow off the cars, there is a big front yard and a fenced backyard that Little Miss Minion already loves. We have great neighbors (although we had this at our old house as well). It’s a better school district than what we were in before, and we are looking into some programs they offer for preschoolers. Thank you Mr Grandminion!!!!
Which brings me to my next development: we moved to a neighboring county, which means that Little Miss Minion’s early intervention team has to be changed to people in the new county. It’s looking like her speech therapist will stay the same, but her physical therapist will be someone new and we will have new coordinators. 
And on the note of speech, it’s been a word explosion over here! Objectively, she still isn’t where she “should” be, but she’s getting much closer. At the end of January, she had maybe three true words and several approximations (she would say kee instead of kitty, that sort of thing). Now, she has lots of true words and lots of approximations. Off the top of my head, she says mama, dada, milk, no, table, key, toe, elbow, foot, cat, cow, phone, ball, bubble, outside, poop, get down, light, thank you, and several more. The one word she refuses to say is “please,” but she signs it instead. She knows more words than she will say herself, because if you ask her to bring you (random object), she will grab it and bring it to you. 
Her favorite things to do include playing outside, chasing bubbles, coloring/scribbling/making modern art, and eating. She loves splashing in the bathtub and throwing her clothes into the hamper. She’s happy and cheerful 95% of the time, unless she is tired or hungry. 
She will have her two year old checkup soon, so I’ll have official measurements then, but according to my fancy digital scale, she weighs right around 21-22 pounds. She is growing out of 12 month clothes and into 18 month stuff. 
She also gives the best hugs ever. When I pick her up, she puts her arms around my whole head and squeezes as hard as she can. If I don’t pick her up, she runs at me and doesn’t slow down as she crashes into my legs, arms out to squeeze. It’s adorable. 

NICU Development Clinic

Yesterday was Little Miss Minion’s third NICU clinic. This is the big appointment where she is evaluated by physical therapists, occupational therapists, speech therapists, a neonatologist, and a NICU nurse. We don’t have her official write up yet, but I have the rough numbers. She did really well!

For those who are unfamiliar, her age is measured by two numbers. One is her chronological age-this is how old she is based on her birthday. The other is her adjusted age-this is how old she is based on her due date. So, by her birthday, she is 22 months old. By her adjusted age, she is only 19 months old. This doesn’t really seem like much, but in terms of early development, it is a big deal. 

Her speech was scored at eighteen months, which is a HUGE improvement. This score technically means that she is no longer considered delayed in speech, which is amazing since she’s only had about a month of speech therapy. They gave us some tips on how to encourage her to talk, but said that she is so close to really talking.

Her cognition was scored right at her chronological age, which is also fantastic. This means that she is scoring three months ahead of her adjusted age, which means that she is pretty much caught up for now in that area. With her early birth, the hydrocephalus, and the brain damage she incurred as a result of either the meningitis or the initial pressures of the hydro, this is really a best case scenario. The doctor told me he had to double check her chart to make sure she was the right kid. 

She’s pretty much on track with her adjusted ago with regard to her fine and gross motor skills. They looked at how she walks, how she holds things, whether she can stack blocks, how she picks things up. 

All in all, I think her average score was twenty or twenty one months, which is great, great news. I’ll post more details once we get the official results in a few weeks. But for now, yay for LMM!

Moving Up Again!

We got the news today that Little Miss Minion will be moving up another level in classroooms! She will be in this new room until she turns two, and then it will be into the room where they start potty training! Not sure how that will work, since she will be two chronologically, but only 21 months adjusted. The new room will have mats instead of cribs for nap time, and they eat lunch at a little table with toddler sized chairs. 
We also have our bi-annual early intervention meeting coming up on Monday. This will include our case manager, the physical therapist, and the speech therapist. We will be adding speech therapy sometime in February, since LMM seems to need a little extra help with that. She is babbling more, since we started implementing the suggestions from our speech assessment, but no words. 
In non-LMM news, I have decided to volunteer in the NICU grad parent group at the hospital that LMM was born at. This is a group of parent volunteers who have had a baby in the NICU. They host monthly dinners, special events, and other things for the families in the NICU. They have two days of orientation and the first one is next Wednesday. I’m excited to be able to help out others who might be in the same boat we were in. There weren’t any micropreemie parents in the group, and I heard about their four and five pounders born at 34, 35 weeks and wished I knew someone with a preemie closer to LMM’s situation. The world of the NICU is so different from a full term, healthy birth, but within that, the world of a preemie vs micropreemie is vastly different. 

Preemie Christmas Part 12

It’s finally here,  albeit a little off schedule. 
On the 12th day of Christmas, the NICU gave to me: 12 feeds to freedom, 11 silver linings, 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 
In the NICU, we never said “when is Little Miss Minion going to have her next bottle?” It was always “her next feed is in an hour.” Nicu jargon seeped into our lives so much, people actually thought I had medical training, with my talk of vents and shunts and tpn and csf. 
When things were starting to look like she would be coming home soon, the nurses talked to us about what she would need to be able to do in order to leave the nicu. The easy parts, the parts that she would either do or not do, included passing her car seat test (90 minutes in her car seat without setting off her monitors), a hearing test, going a week without setting off her monitors, and maintaining her body temperature without the help of the isolette. The big one was that she had to drink all of her milk by herself for about three days. 
From the time she started getting milk, she took it via a thin, flexible tube that went from her nose to her stomach. When she started taking bottles, it was very tiring for her, so they would give her a little bit from a bottle and “gavage” the rest through the tube. As she got better at drinking from the bottle and her mouth muscles got stronger, she took more and more at each feed. 
In order to leave, she would have to drink all her milk by herself for 24 hours. At that point, they would pull the tube. If she could keep it up for two additional days, or 12 feeds, she would be out the door. 
About a week before she was actually discharged, when we were playing a game of “so close, but not enough,” she pulled the tube out herself. The nurses decided to leave it out and see if she still needed it, which she did, but for those 2 hours, we could see her face without nasal cannula, without tubes, without duoderm tape on her cheeks. We had seen her face without some of these things when they would redo the tubes and tape, but never all at the same time. She looked like any other baby, even though she was almost 3 months old and only 5 pounds. We could really see her face, her expression. It was wonderful.