Archive | August 2016

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!

Early Intervention and NICU Follow Up

Last night, we had our yearly meeting with the early intervention team and today, we had an appointment today with the NICU development team to see how Little Miss Minion is performing with her chronological vs adjusted age. Short story: she’s doing really well and everyone is happy with her progress. 

So yesterday was the Early Intervention meeting. Our case manager, the physical therapist, and the two of us discussed her goals from this time last year and made new ones. These are things like walking unassisted, talking more, using utensils, etc. We have these meetings every six months. She met all of her goals from last time, which is great. 

Today was the NICU follow up, which is more in-depth than the early intervention meeting. They get her measurements (weight, length, and head circumference), and then a physical therapist and an occupational therapist take turns playing with her and watching how she interacts with toys, how well she can do activities, what her skills are at the moment. They measure in five areas: gross motor skills (big movements like walking, crawling, sitting, standing), fine motor skills (picking things up), cognitive skills, receptive communication (identifying objects, such as pointing to a book when you ask for it), and expressive communication (imitating words, playing peekaboo or other games). 

Because of her prematurity, we use her adjusted age for milestones. This means that she should be measuring around 12 months for these areas of skill, even though she is 15 months old chronologically. 

Gross motor: 13-15 months. 

Fine motor: 11-12 months.

Cognitive: 12 months.

Receptive communication: 9 months.

Expressive communication: 11-12 months. 

Overall, these are really good scores. She’s always scored higher in motor skills and lower in communication, but she is progressing at a good pace. Especially given her history of prematurity and her hydrocephalus, she’s doing excellent. They also explained that the skills don’t all grow at the same rate. Since she’s been doing so well with motor skills, they would expect the other areas to suffer a little. The important thing is that they are all improving compared to last time, which they are. 
Another huge milestone: she walked about six feet tonight! 

Back to the NICU

Little Miss Minion had her ophthalmologist appointment on Thursday and I’m happy to report that she had no issues related to her prematurity! She’s probably going to get my eyesight, but hers aren’t bad enough to do anything about yet. And the doctor said she “doesn’t look like her chart” in terms of being a 28 weeker with hydrocephalus. Her eyes look remarkably good, especially considering her rough start. 

Before the eye doctor, we went to the hospital cafe for breakfast. On the weekends, we would usually get breakfast and sit outside for a while before heading back in to the nicu. It was so strange to have little miss minion with us as we walked the halls. 

After breakfast and her eye appointment, we stopped by the nicu. It was surreal. Neither of us had been back since the day she was discharged, but it was like we had never left. We got off the elevator and the first picture we saw was the one I saw every day last summer. We walked down the same carpeted hallway. I stopped to use the bathroom and washed my hands with the same soap I scrubbed up with for 84 days. We checked in at the desk where we had to sign in each day in order to see our daughter and waited for one of our primary nurses to come out and meet us. As we stood together in the hall, I watched the people coming and going from the nicu. There were grandparents coming to see their new grandchildren. There were mothers in all states of the nicu process: brand new ones who could barely walk from their c sections, ones who had been there for a while, ones who were bringing guests to see their fragile babies. 

I wanted to hug them, to tell them that one day, they will get to walk out the doors with their babies. To show them little miss minion and tell them about her start. That they shouldn’t lose hope. 

One Year Later…

This time last year

It’s been a year since Little Miss Minion came home from the NICU. She’s 12 pounds heavier, has three more brain surgeries under her belt, and made it through RSV season. 

Exactly one year ago, Mr Minion and I were driving home from the NICU for the 84th day in a row…except this time, we weren’t alone! I’m still so thankful for the amazing care we received in the hospital and NICU. I’m especially thankful for our nurses, who took such wonderful care of a giant chunk of my heart when I  couldn’t be there with her. Our 1 pound, 14 ounce 28 weeker is now a whopping 17 pounds and almost walking. Preemie power!!!