Archive for the 'PT' Category

14
Mar
16

Spring Specialists

On this day four years ago, the lid came off and little guy was able to hold his temperature. The A’s & B’s and weight gain were all that stood between him and home. We started focusing on his special foot and what he would need when he came home.

Foot stretches and PT have been part of D’s life since week 2. On Friday, we got the good news that his clubfoot correction still looks to be holding and his year off from braces didn’t seem to impact his structure. We are to keep doing the stretches and his doctor added a new one to strengthen the outer left side. We love his orthopedic surgeon, and it was awesome to hear some good news. It’s hard to believe he was only 4lbs, 10oz at his first visit with her.

At the four year old well visit, he’s taken a big hit on his weight and BMI curve which we were expecting to hear. He only gained 2.5 lbs over the past year. The good news is he did make a jump on his height curve up to the 20th percentile, so despite the trouble with weight gain he IS growing. His doc and I discussed the measures we had taken moving him to a private sitter instead of preschool for the winter to give him a break from all the sickness he had last year. His dad and I were hoping to prevent the hunger strikes. We went over a meal plan, and we need to follow up quickly if he stops eating. Last year, it felt like we were through the eating and weight gain hurdles so it’s disappointing, but at least we weren’t blindsided with it.

With very little prompting, I was able to get the referral for the other thing that I am determined not to think about until our April 5th appointment. His doc even recognized one of the authors of the research study that I brought to the appointment as someone he knew from our children’s hospital.

 

 

 

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16
Dec
14

Treading Water, but Ok.

We’re all ok.

We went on vacation to Florida in October. I didn’t post about it. Drake had a horrendous bout of croup while we were in Florida. I almost took him to the emergency room, but his pediatrician on long distance listened to him over the phone and advised hot steam in a bathroom instead. Not breathing well is never a state you want for your kid. He was well the first night and we went to Mickey’s Not-so-Scary Halloween Party. That was a blast. The rest of the week. Not so much.

He has been on antibiotics every 3 to 5 weeks since April. Within 2-3 days of the start of the sniffles, it goes straight to both his ears. Our follow up from the last Sunday urgent care visit is tomorrow. I’m going to push for him to visit his ENT. His mouth cyst could use a check anyway.

We are nearing the end of our EI, First Steps journey. Our final IFSP meeting was last week. The week prior he had his evaluation with his future elementary school if he qualifies for preschool at 3. His PT is pretty sure he will. She, and our coordinator are going to come to the January meeting about his assessment results.

I am torn, and so is daddy. Obviously, we want him to have the services he needs, but we really like his private preschool. Flip side, we could really use the economic break of a half day of free school. Ugh choices. And if we don’t start him on IEP’s now, if he needs help later what will the battle be like to get it?

He’s just not there yet gross motor wise. We’re operating in the 20-24 month range, which is great for where he started from, but I KNOW he needs the PT services to continue. I joined a Hypotonia parent group on Facebook.

We are worried he may have had a seizure after spending the night with his Gammy. She said he spaced out for a long time and touching him and speaking to him she couldn’t get him to answer. When he came out of it, he just said Hi Gammy like nothing was wrong and she took him to school. Pediatrician is having us keep a journal and taking a wait and see approach. He’s never done anything similar to me.

I have been asked to teach an associate’s level class next semester now that I have completed enough graduate hours. I am really excited and I hope it is a good experience for myself and my students. It will be a small business finance class.

And then…Christmas. And then…3. What the heck? Where did my tiny baby go?

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.

06
Mar
14

Follow-Ups and a Bit About Me

Today we have our annual follow-up with Orthopedics at Cincinnati Children’s. This will complete our round of follow-ups that run December to March. The only other appointments D will have until next December will be his therapy visits and any sick visits. Talk about an awesome milestone!

I am nervous about today. He will get x-rays of his feet to make sure that all the bones are still growing in the right direction and that we are using his “nite-nite shoes” properly to maintain the correction. I’m also going to have his Ortho surgeon check out the recommendations we have from his physical therapist so we can see what move she thinks we should make about his low tone and hypermobile joints. He’s getting around much better these days, but PT is worried about injury or too much stretching to his ankle ligaments without support now.

When prematurity first struck, I went into salvage mode. For a while, I was just slammed with hormones, with emotions,  medical issues,  insurance issues, and dealing with the rest of the world issues. Then the first year was medical thing after medical thing worse than the NICU for us. The second year was about growth. I found my groove. Things with D got exponentially better with the right medical and development team.

Recently, with D going to school two days a week, I have increased my work hours and started remembering that I love my job and I was really good at it. I am so thankful that they allowed me the flexibility both to bring him to work on occasion or work from home as needed. I didn’t have to make some hard choices my work was as great a support system as my family.

Now, I’m ready to get back to some things I had planned for during my medical leave that I put on hold. I’m investigating some Master degree programs that will allow me to continue my current work in higher education while possibly preparing me for involvement with curriculum development or even classroom training.

I feel more ME than I have in a long time, and I think that is as good for my family and its future as it is for me.

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.

 

11
Jan
14

New Year, New Goals

Happy New Year! What is it about almost two year olds that make it so hard to carve out blog time?

Last week, was a huge week for us. Well, it was half a huge week. We were supposed to have our second to last NICU follow up clinic, but Drake was sick and coughing so no way was I taking him to the same floor the NICU he stayed in is on. I called and rescheduled. I hated having to do it because the next slot available was March 11th. Those appointments go fast and you schedule them about 4 months in advance. I was also hoping to have his Neonatologist and Physical Therapist’s input for his IFSP meeting last week.

We reviewed old outcomes with both therapists and his coordinator for Early Intervention. I am extremely happy with how much he progressed in the past six months. I am sure he would have done some of it on his own, but the guidance I received to help him has been invaluable to me.

Last goals were to sit up without support and without using “W” leg placement, to use gestures to indicate wants and needs, sign or use words to label objects, stop throwing food and utensils in frustration and eat solid food regularly, and transition from cruising to walking without support for several steps. These goals were set last July at 17 months.

This time we’re working on walking fast without balance isssues, his flat feet, chewing and swallowing more solid foods, learning to reach for objects on tip toe in preparation for jumping, and the strength of his left hand/arm which he refuses to use. He’s being switched from mostly developmental visits to mostly PT and some occupational visits.

Drake’s first day of school is scheduled for this Wednesday. I am worried about how sick he’ll be at first and excited to see how he is with other children. I know I’ll be both proud and weepy and can’t wait to take first day pics.

I also learned last week that this is as north as I ever want to live, and that my house was built in the 60’s and is drafty as hell. -48 windchills are too much for this Louisiana girl to handle! Today it is 100 degrees warmer. This 51 degree day feels like May.




Drake’s 3rd Birthday

February 20th, 2015

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