Posts Tagged ‘pt

17
Aug
14

Back to School, Work, Life

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

02
Apr
14

Night-Night Shoes and new Daytime support

Our orthopedic follow up on D’s Ponseti treatment was awesome. His nurse and doctor couldn’t believe that he was the same 4 pounder they met in April 2012. 6 rounds of casting, 3 months of 24/7 brace wear, and 2 years of “night night shoes” and we are halfway done. His flexibility and bone structure looked good, and I got a mommy gold star for being a good patient and practicing good brace protocols.

From the crying 1 year old who took games, songs and both parents to get his shoes on properly, we now have an amazing two year old who gets his brace and brings it to me when he wants to go to bed early. He insists on attempting to do the buckles himself, and gives himself “mustaches” with the center bar. Daddy’s amazing game that got us through the 12-20 month old period.

I am excited about finding out the next step in his daytime orthotics from his physical therapist at PT on Friday. I think we’re going to be going with sure steps, and hopefully it will give him the support and stability he needs to continue making gross motor progress.

I feel a little guilty that he will have a new set of orthotics to deal with. My husband and I spent a long time debating it, but if we can help him avoid the pain that ruining his ankle ligaments would cause as well as be able to run with his school friends it will all be worth it.

13
Feb
14

Final Discharge

We had our final NICU follow up clinic visit this week. The child I brought to this visit was a little on the skinny side, but was so completely different development-wise when compared to last June that I think his team was shocked. Thank you, Early Intervention! Last June, we weren’t walking, gesturing or talking. And the results from that June visit had this mama really scared.

This final visit was a great visit. I’m really going to miss his Physical Therapist, Christy. She taught me how to do his exercises for his hips and legs, and navigated me through the diagnosis of his clubfoot and what treatments and outcomes to expect in our NICU days. I didn’t realize how much I’m going to miss his neonatologist and the rest of that team. They’ve scared me and reassured me, and gotten us through moments we never expected.

We are going to be getting him fitted for orthotics soon. In addition to the left clubfoot, he’s having a lot of issues with balance and transitioning still. We’ve increased his PT visits with EI from once every 3 weeks to once a week, and decreased his DI visits from once a week to once a month. If we can’t get his feeding habits to improve, we’re to do an eval with OT through EI in the next 60 days. The neonatologist warned me that the low tone would follow him for the rest of his life, but that it shouldn’t stop him from any physical endeavors he wants to pursue.

So goodbye, birth hospital. The rest of Drake’s follow-ups will all be with Cincinnati Children’s from now on. Posters for March of Dimes in April are usually made at his birth hospital, and once the restricitions of cold and flu are lifted we plan on taking a trip back to the NICU.

I’ve been thinking alot about that whole “catch up by two” thing as his birthday looms next week. I’m not sure about Drake, but I’ve certainly been in a better place emotionally in the past few months. I’ve done a better job of taking care of me and my family. I let my health go pretty far downhill in the first 6 months after his homecoming. It’s nice to feel more like ME.

 

01
Oct
13

Battling for Medical Procedures

I really respect our PT from Early Intervention. Drake has made huge strides and we have lots to work on, but he soaks it up like a sponge. 

Yesterday, he was tired so he kept bringing her books to read and climbing into her lap. We still made a little headway on stairs. 

We have been having a lot of trouble with him favoring his right hand for doing fine motor activities over his left hand. Apparently toddlers usually don’t choose this early. I just assumed prior to EI that it was normal preference for a stronger side. 

His physical therapist strongly suggests we try to get approval for an MRI pushed through to check things out. D only had one head ultrasound in the NICU, and she’s concerned that if anything happened to cause the generalized weakness on his left side it was missed. 

Apparently trying to get approval for an MRI for a 19/16.5 month adjusted kid is a big deal because they have to put them under general anesthesia for it. So it’s advocating time again. I’m going to try his pediatrician first, and then I’ll move to the NICU follow-up clinic Neonatologist if I don’t get anywhere with him.

To be perfectly honest, I hate the idea of him going under again, too. It took us weeks to get him back to eating properly after his hernia surgery when it sounds like most kids aren’t phased by it at all. 

I guess I’m wondering if other preemie families have had later diagnostics MRI’s done? Were you glad you did? Did it make a difference in the treatment/therapy avenues you pursued? This is my new “research paper” stuff I’m obsessing over. 

In other news, we are not on isolation this winter. It scares me, and we plan to be cautious but he’s had no respiratory issues and his medical team thinks it’s time. 

26
Aug
13

Buying Shoes and Well (weight) Check Week

I learned an important Mommy lesson this weekend. In my brilliance, I planned to go get D’s next set of shoes from Stride Rite on a Saturday during back to school time. What was I thinking? 

We needed this new pair for Monday’s PT session, and I knew we could drop Daddy at work and be there when the store opened. Apparently every other toddler family in Cincinnati had the same plans. 

Luckily, I was smart enough to take him to breakfast first so at least we weren’t starving. After what felt like an hour of trying to keep D from playing with the girl with that suspicious toddler hack cough, we got his feet measured. No DIsney or Sesame Street novelty shoes for us. We need the hard walking shoes. In two different sizes. His left foot is a little less than half a size smaller than his right which can be pretty typical in clubfoot. Apparently even before you are sure of your kid’s shoe size, you should call ahead and make sure a range of sizes is available. 

Four hours, two malls, 50 miles round trip, a tired angry kid, and the loss of a piece of breakfast quiche we’d picked up to take back to Daddy later we had our two pairs of shoes. Thanks to rewards coupons and BOGO it was only a little more than one pair usually costs. Yay!

Somehow I managed to schedule an appointment for every day this week. It’s also the week before students come back at work, so I have some events and big projects there, too. My two sitters, “the grandmas”, are both going to be out of town this week.

Even though the 12 month well visit went fairly well, I still can feel that anxiety rise. It annoys me. I want to fold it up and put it in winter storage and lock it there. 

Everything has actually been going really well. He’s eating more solids and trying different textures more easily. With the PT and shoe changes, we now officially have a toddler who’s not pulling his hip and ankle ligaments all out of whack (hopefully).

FInal thing – One of my cousin’s friends has a 32 weeker still in the NICU. This little guy has some big surgeries tomorrow and some big hurdles to going home still to get over. He’s 13 weeks old and giving it his best fight. I’ve been passing on some NICU parent sites to his parents in the hopes that it’ll help them when they are ready to talk and look around for that person to listen and understand. He’s having a trache, fudoplication, and g-button surgery Monday morning in the hopes that it’ll give his body the rest and help it needs to get home from the NICU. So if you have a minute at 945am CST, please spare a thought for this little boy and family.

30
Jul
13

Getting Started with EI: Developmental Intervention

Today we’ll have our first visit with our DI. She’s going to work on various things with D, and I’m excited about this meeting.

I have seen amazing changes in him just from the little bit of focus we’ve learned how to spend on some different things. I was really frightened about Early Intervention at first.

It made me feel like a failure that he’s requiring additional oversight, and it brought back all those old feelings from the start of our preemie journey. The actual experience has been very empowering. Even when I was stressed that he might not qualify after some areas of improvement were identified.

Last week, I had a huge set of meetings and projects at work so D spent a couple days with the “grandmas,” his Great Granny and my M-I-L. During that time, he had his first playdate with a little boy we know. This little boy and D had due dates within 3 days of each other. Drake is chronologically older by about 3 months. I had a rough weekend contemplating this conversations with my MIL. 

Me: So how did it go with, B?

MIL: They didn’t really spend much time together at the playground.

Me: Oh?

MIL: Well, B can run all over. D just can’t keep up.

Ouch, another one right in the preemie mama feels. Now I have to decide is more interaction with his peers a good idea? Do we hold back more and just concentrate on therapies for a while? He loves other kids, but I don’t want him steamrolled. I’m definitely having second thoughts about the 1-2 days of school we were planning on in the fall with other 18 month olds.

I think I’ll just plan on taking him on a tour when the year starts. If they have a spot left and being around the other kids goes ok, it’s meant to be. His pediatrician thinks healthwise it’s time to try him out. 

Preemie mama zen. I got this. 🙂

26
Jul
13

Exciting Times

I love the point we have reached. We’ve received our six month EI plan. August appointments have been set for therapy and other follow ups.

It feels good to know what we have been working on well and what could be adjusted.

It is hard to deal with those who assume we weren’t doing things right when there really is no right or wrong with developmental delays.

We can’t answer when he’ll be “fine” or “caught up” whatever that means anyway. But the three of us and our therapy/medical team are doing our best. And we’re going to enjoy learning together.




Drake’s 3rd Birthday

February 20th, 2015

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