Tag Archive | speech therapy

Brain Surgery #5

First of all, Little Miss Minion is doing well and we are home. Don’t let the title of this post scare you. 
Monday night, we noticed that LMM was acting like she had a headache. She still doesn’t really talk much, but she was rubbing her head and crying off and on. She had speech therapy that night and seemed ok except for the head rubbing and generally seeming a little “off.” Tuesday was more of the same, but the problem with hydrocephalus is that the symptoms of a shunt malfunction are very subtle until they aren’t anymore. Irritability, being cranky, headaches…but when it happened for the third day, we listened to our guts and took her to the ER. They did a “shunt series” X-ray, which takes pictures of the shunt in its entirety to make sure that all the pieces are where they should be. Sometimes the distal catheter (the end where the extra fluid drains from) gets moved or blocked. Sometimes the system gets disconnected. Everything looked ok on the shunt series but they couldn’t explain the crankiness and headaches so the neurosurgeon wanted a CT scan to see the ventricles. Sure enough, one of her shunts had stopped working so the cerebrospinal fluid wasn’t draining like it should have been. 
They admitted us to the PICU (pediatric intensive care unit) to monitor LMM and decide on the timing of the surgery. As soon as we knew the shunt wasn’t working, surgery was a certainty. There is no other way to “fix” hydro. So we were taken to the PICU to spend the night. 
LMM is now two, and she knows a little bit more about what is going on. She handled it really well, and fell asleep on me while we were walking down to the surgery suites. They gave her a little bit of a sedative to keep her calm while they took her back to get prepped and while it was kicking in, she started cracking up laughing. It was a nice stress reliever. 🙂
The neurosurgeon came out after surgery to talk to us and said the surgery had gone well. We got to come back and see her in recovery while the anesthesia wore off soon after. After a few minutes back in recovery, we were cleared to go back up to the picu. As they were wheeling her out, the nurses at the central station all waved to her and she waved back from her bed. 
Within an hour, she was chugging water. An hour after that, she was onto jello, and soon after that, she was cleared for real food. Everyone was impressed at how fast and how well she was coming off the anesthesia. Last time, she was groggy and slept for most of the day. That was also about 23 months ago, so she was much smaller. 

We were discharged the following afternoon and LMM has been back to her regular happy self. 🙂
Many thanks to the incredible nurses we had this time. This hospital is not our first choice, but it is the one that her neurosurgeon primarily works out of. Our nurses were hands down the best we’ve ever had at this hospital. 

Advertisements

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. 

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. 

Neurosurgeon Follow Up

We had our semi-monthly follow up with Little Miss Minion’s neurosurgeon a couple of days ago. Every few months, she goes in for an MRI and a follow-up office visit to make sure that her shunts are working and that everything with her ventricles looks good. At our last visit, we were cleared for six months instead of three. At this week’s visit, we were cleared for ONE FULL YEAR!

Everything on her scan looked perfect, and the neurosurgeon even said that this is the best scan she’s ever had. The small area we were watching, near her ETV, is draining properly and has gotten smaller.

So, hopefully, it will be another year until we have to see this particular specialist again. She could, of course, have a malfunction or failure in either of her shunts or the ETV, but barring something like that, she is in good shape!

He also said that the speech delay we are seeing could be due to the PVL (periventriculoleukomalacia–brain damage), or due to just having hydro, or from being a Preemie, or she could just be wired that way. We are still super early in dealing with the speech issues, and she has actually improved a little since we started following the speech therapist’s suggestions. More on that in another post.

 

18 months

I’m a little late, but Little Miss Minion is 18 months old chronological! This is a big deal for a couple of reasons. First, it means we are halfway through adjusting for prematurity. We will adjust for one year per month of prematurity. Since LMM was born three months early, we will adjust for three years. The other reason is that she is able to be evaluated for speech therapy. Our early intervention explained that 18 months is the absolute earliest that they will consider speech assessments, simply because there is a wide range of normal development. Luckily, they go by chronological age for therapy purposes, so we had our first meeting with the speech therapist today. 

I have been pushing for speech therapy for a couple weeks because LMM isn’t really talking yet. She says Mama, Dada, and that’s pretty much it. She “should” have around five words by now. She uses sign language and pointing to communicate, which is really good, but she needs to vocalize as well. There are a multitude of reasons why she might not be talking yet. She could be working on another skill, she could be closer to her adjusted age in talking, or she could have hearing damage. I’ll be talking to our NICU follow up team regarding this possibility at our next appointment in the spring. LMM had meningitis in the NICU, which in itself can cause hearing damage. The drugs used to treat it can also cause hearing damage. On top of that, she has frequent ear infections, which can cause hearing damage or leave residual fluid in the ear that can obstruct sounds.

 The speech therapist mostly asked us questions about LMMs birth, complications, and what she is usually like. We played with LMM while the therapist asked us things about hydrocephalus, what sounds LMM makes, etc. After the assessment, she has to write up a report and submit it to the team. She did say that she thinks LMM will benefit from twice monthly visits from a speech therapist, and gave us some “homework” to do in the meantime. No baby talk (which we don’t do anyway), no noisy toys (so she has to provide her own noises), and lots of talking by Mr Minion and myself. We will be reading to her more, talking more, and the part of the homework that LMM already dislikes: making her work for things. Usually, she would point or sign for something and we would briefly say something like “here you go, here is your ball/banana/puffs/etc.” Now, she will have to vocalize in order to get things that she wants. She will point or sign, and we will be asking her what she wants, if she wants the ball/banana/whatever. She doesn’t get it until she makes an attempt at saying it. 

I went through her library this afternoon and pulled out some new books that will be good for this. There is a book with 100 sight words in it, another that is rhyming with sight words, and some board books. 

I should have the report by next week, so I’ll update when I know more. In the meantime, we will be talking ourselves silly!