Tag Archive | physical therapy

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. 🙂

Preemie Christmas Part 10

Having a cold can really derail things. 

On the 10th day of Christmas, the NICU gave to me: 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. 

Preemies are often “followed” by various specialists in the nicu. Depending on their specific health concerns, some babies could be followed by several doctors in addition to the normal neonatologists. 
Little Miss Minion had a very diverse medical team looking after her during her 3 months, so get ready to meet them! 

1. Neonatologist: a doctor who specializes in preterm/newborn babies. These are the main doctors of the NICU. Every baby in the nicu is followed by the neonatologists. 

2. Respiratory therapists. These people are assigned to babies who are using any kind of breathing assistance, whether it’s a ventilator, CPAP, or cannula. They come in periodically and check the settings, adjust hoses, and generally make sure that everything is working perfectly. 

3. Physical therapists.  Even in the nicu, physical therapy is a big deal. PT is there to create a plan to keep baby’s muscles developing properly. Babies in utero have the resistance of the womb to push against, while “outside babies” have nothing but the special beds of the nicu, which aren’t quite the same. PTs are also the main players in keeping the baby from developing a flat head and/or torticollis, which is imbalanced neck muscles. 

4. Occupational therapists. This one threw me a little at first. What could a Preemie possibly need with occupational therapy? Turns out, they serve a pretty important purpose: setting the plan for baby to learn to use a bottle. Many preemies find bottle feeding to be easier than breastfeeding, Little Miss Minion included (see my previous posts about the joys of pumping). The occupational therapist determines the best position for each baby to feed in, the size of bottle nipple, and they pin point the stress cues that each baby exhibits during a feed. Little Miss Minion was fed by “pace feeding,” which is when the baby is propped up like they are sitting in a chair and the bottle is only slightly inclined. This allows the parent to control the flow of milk. She used an Ultra Preemie nipple for several months before graduating to the regular preemie nipple, and then FINALLY the regular newborn nipple. 

5. Opthalmologist. This is a medical eye doctor. Many micro preemies develop ROP, or retinopathy of prematurity. This doctor’s job is to monitor eye development and see if ROP is occurring or if other issues are happening in the eyes. 

6. Pediatric neurologist. This is a doctor who specializes in the workings of the brain. They make sure that the brain is functioning correctly, that the messages are being transmitted and received. This doctor can easily be confused with…
7. Neurosurgeon. This doctor also specializes in the brain, but in the physical function of it. In Little Miss Minion’s case, the neurosurgeon monitors her hydrocephalus and makes sure her shunts are working. 
8. Lactation specialist. This is a person trained to help new moms breastfeed or pump. 

9. Nicu follow up team. This is a group of nicu personnel who test and measure the progress that the preemie makes once they graduate the nicu until they turn 2 or 3. 

10. Pediatrician. This is the doctor that the preemie will see once they graduate. 

Orthotics: Round Two

Little Miss Minion got fitted for her second pair of orthotics this afternoon. She’s on her toes much less, but enough to cause trouble down the road when she gets really good at walking. She’s toddling around in 10 foot bursts now, but sometimes, she will go up on her toes and lose her balance. The orthotics will make her muscles stretch so they aren’t so tight (hypertonia), as well as get her used to a correct gait for walking (not going up on toes). They took casts of her feet and ankles, which she did not appreciate. They send those off to be fabricated into the actual orthotics, and we should have them back in about two weeks. Then we have to find shoes to fit over them! Little Miss Minion is going to have shoes! She was hysterical while the measurements were being taken, until the physical therapist and I bribed her with food and the iPad. The PT said “she’s such a toddler now, wanting the electronics!” And she figured out how to open my phone screen…so if you get a weird call from me that sounds like a hyena, it’s not me. 

We got the official letter from the opthalmogist, which basically says the same things I already talked about. He sent a copy to her pediatrician and another copy to her neurosurgeon. Eye pressure and shunts can be related, so it’s probably a good idea to keep everyone in the loop. There were no concerns with her shunt, so this is a good baseline. Although, if her eyes are anything like mine, it’s just going to be a long, slow slide into glasses and contacts. But at least it’s hereditary and not a preemie thing! 

Other than that, there isn’t too much going on. Oh, she’s getting another tooth! So now she’s got her two front, two bottom, one canine, and the other one is coming in. And she starts a daycare center this week. We took her by when we signed her up (we visited a couple of times without her) and the other kids are soooo big. They are all between 14 and 12 months old, but they must outweigh her by five pounds and a couple inches. Small but mighty!

15 Month Check Up

Little Miss Minion had her 15 Month checkup this morning, so I have new stats, as promised. She is 17 pounds, 8.9 ounces,  which is about 9 1/2 times her birth weight. She is 27 1/2 inches tall, which is s little over twice her birth length. She’s at 7 percentile on the FULL TERM growth chart. Which is awesome. This means that if you took 100 girls born on her birthday at full term, she would outweigh 6 of them. 

The pediatrician is very happy with her. She’s doing great in terms of growth, and she’s doing really well developmentally, even using her chronological age. She got more shots today, so we can kiss chicken pox, MMR, and Hep  A goodbye. 

Next month will be a busy one. She’s got an opthamologist  appointment to check out her eyes, a nicu follow up clinic, her early intervention meeting, and probably a new orthotics appointment. Busy, busy, busy. Such is the life of a former micropreemie. 

And, we have an almost-walker!  She uses her walker to walk across the house. It’s her new favorite thing. 

Almost April

Little Miss Minion said her first word tonight! Drumroll….it was “Mama.” So exciting. 

In other news, we are looking at getting orthotics for her feet. Due to her small areas of brain damage, she’s at a higher risk for hypertonia, or high muscle tone. Basically, this means that the muscles would be in the stretched position instead relaxed. She does this with her toes, so we want to get them fixed before she starts trying to walk on them. What will happen if we ignore it is that she will walk on her tiptoes. Right now, she stands up on her toes whenever we pull her to standing, and when she’s sitting down, her toes curl in frequently. 

The orthotics will be custom made, and will look kind of like shoes. They will stretch her foot muscles while she sleeps, allowing her to stand and walk normally. They are similar to the ones I wear for plantar fasciitis. When I manage to remember to wear mine, my feet always feel so much better, and I hope hers do too.

She’s getting one more Synagis shot, since rsv is pretty bad this year. I’ll have an updated weight on her then too. 

Other than that, not much to report. She’s rolling herself everywhere these days, and starting to get into everything at floor level. Time to start putting things up.