Archive for the 'Orthopedic Issues' Category

15
Jul
13

Getting Started with EI: Routines

Our second in-home Early Intervention visit was this past Friday. They sent a prep sheet about our daily and weekly family routines.

I was curious about this meeting. Our family routines are the heartbeat of our daily/weekly/monthly life.

I wasn’t expecting how I’d feel at the end of our hour long interview. Drained.

Being asked to rate how your child’s medical conditions/behavior/gross motor & fine motor skills affect your daily life really starts to bring out the little issues. The ones you ignore day to day because you’re the mom and you would go to hell and back for that mini human.

The questions about my me time and when I get stuff done also caught me off-guard.

The one that kept me up Friday night was “What are your concerns for your child that worry you the most? What keeps you up at night?” Are you really sure you want to open that bag of worms, lady? I’m awesome at worrying something to bits. 🙂

I’m very happy with 9 preliminary “goals” that came out of the meeting. I think it will do a TON for D’s quality of life to start working on these things.

I learned how hard it really is to think that your care/teaching isn’t enough for your child. You would think that lesson would have been made abundantly clear to me in NICU days. I am by no means a “kid” expert. I didn’t babysit. My youngest sister is only 4.5 years younger. My only kid experience was being one. I really appreciated our coordinator taking the time to point out that I was doing great with him and his needing additional therapy was no reflection on my teaching/guiding abilities as a parent.

I’m still a little sad that this is all necessary for him, but I am hopeful that I will enjoy this team and our work together for D’s well being as much as I enjoy working with his NICU follow up and medical team.

Initial recommendation is PT twice a month and Speech/Feeding once a week for the next six months, and then a follow up evaluation to see how things are progressing. We also received a list of where he’s at with various development and some goals and exercises to work on ourselves.

Our next meeting is scheduled for the end of this week and it will be the “goal setting” meeting.

 

 

 

25
Jun
13

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

07
Jun
13

One Step At A Time

Never again will I post BEFORE we go to an assessment or appointment.

So we have the good and the not so good.

1. Low muscle tone and hyper flexible joints are holding back his gross motor skills like walking. The team also thinks its causing pain/discomfort when sitting still, so it’s why he has trouble focusing on things like eating.

Suggested: Get enrolled in Early Intervention and if he’s not walking solo in 3 months (18 actual/16 adj) we need to consider AFO options after a consult with PT.

2. His verbal skills are awesome. 11 words and going.

3. His weight/height are on his personal curve and increasing at a rate that pleased the neonatologist.

4. They want him in the follow up clinic program until at least 2 actual. Next appointment in 6 months.

5. We toured his future preschool today. He has to be off the bottle completely and walking independently for the half time 18-24 mo class. The will give him his extra calorie formula in a cup as needed and have cared for preemies previously. Plus, Asst. Director is a family friend.

So now to set up the EI evaluation, and hope.

07
May
13

Ask, Don’t Stare

While checking out my newsfeed over my morning coffee, I came across this gem from Bar Bumpers.**

Says any parent with medical equipment or a unique kid.

Says any parent with medical equipment or a unique kid.

**I asked permission from Bar Bumpers prior to posting.

We have always used the sleep sacks to keep Drake warm in his “nite-nite” shoes, but I absolutely love these. Bar Bumpers will custom embroider a bar bumper and shoe covers.

I should take a picture of our changing table, cradle, and crib to show the damage that is wrought on wooden furniture by a kicky baby with an large metal bar.

D in his "boots & bar" at 6 months actual.

D in his “boots & bar” at 6 months actual.

I love the craftiness and the practicality of these sets, but the message of this one is what really stopped me in my tracks this morning.

Last summer, Drake was on his last 2 rounds of casting for his clubfoot correction just as we came out of RSV isolation post- NICU discharge. I was still in the fragile, guilty new preemie mom stage. We decided to go to a popular brunch restaurant early one morning. Of course, I felt like people were staring me down as I carried my newborn-sized infant with a hip to toe cast on his left leg. The looks you get make you feel like social services is going to jump out and grab your child any minute. After casting, the Ponseti correction method continues with 23/7 bracing for three months.

4th Cast Mother's Day 2012

4th Cast Mother’s Day 2012

Ask, don’t stare, ladies and gentleman. Most parents are going to be willing to educate you if asked politely and having a good day.

I love these whimsical boot and bar covers. I really need to reach out and see if she’s willing to ship to the US.

You can view all the Bar Bumper offerings on their website  http://www.barbumpers.co.uk/.

Love, love, love the site motto, also. “Bringing fun and fashion into the world of Boots and Bars. “

02
Apr
13

The Posts I Didn’t Write

It’s been a busy few weeks. I thought I would want to write a big, emotional post for the anniversary of Drake’s NICU graduation, 3/24, but it was a Sunday and we just took a walk and baked and decorated cookies. It felt like such a NORMAL, family hanging out day. The kind of day that makes last February feel so far away.

I did make a picture collage from go home day to now at 13 months. What a wonder to see how much he’s grown.

gradiversary collage

Two memories really stick with me from that day. We decided we didn’t want to be separated so the three of us left by way of the parking garage elevator. The same route his father and I had taken every day when leaving Drake behind. I avoided the lobby like the plague. Being wheeled out by my mom on my discharge day next to the lady with the newborn in her arms was still too fresh. The second memory was of the 30 minute drive home. He looked so miserable and tiny in that car seat. He kept his eyes shut the whole way, and I rode in the back with my finger a few inches below his nose once in a while to check his breathing.

Unlike his birthday, that was a day of joy. We all definitely felt the difference in the celebration of the anniversary.

Then last week was our 1 year clubfoot check up. We all got to wear lead aprons and do stand up x-rays at Children’s. They looked AMAZING! You could tell no difference in the structure of his left foot from his right. Yay Drake, Yay Cincy Children’s Orthopedics, Yay PONSETI, and Yay Mom & Dad for strict bracing protocol! We got the verdict that right now we only need to do 12 hours a night, and it should end at 4 years old. We are 25% done with treatment!

Easter was a bittersweet day. We so wanted it to be the day of his baptism, and that wasn’t going to happen due to RSV isolation. Then our church was going to have an outdoor 8am service that we were going to brave, but it was cold and rainy so they couldn’t have it. Mom and Dad were very disappointed. Drake loved his THREE Easter baskets, and didn’t know the difference. What a difference from last year when he was smaller than his bunny!

Will I always have those moments that make my stomach roll over? A family friend asked if we would consider more children. I said a quiet, “I prefer not to answer right now.” Unfortunately, someone overheard and it went to a situation I’d hoped to avoid. What no one knows is I’m actually on blood pressure meds that don’t even allow us to consider it right now. I have to take care of me, first. Not to mention it’s not a discussion for a family/friend Easter dinner. Sigh.

We are so blessed, and despite some bumps on the road we are so very, very lucky. Right now though, I’m not sure I’d want to consider another child who could have very, very different outcomes. Even if I could which is another whole emotional/health thing to work through.

Winter though, can go and take the yucky germs. We’re ready to play tug-of-war with his baseball allegiance (My Cubs vs. His Reds) and go to the Zoo!

Follow ups are coming in May and June for feeding, wellness, and NICU developmental clinic.

 

 

07
Mar
13

The Other Side of the Coin

A search term of “Mitchell brace” recently directed a visitor here. Sometimes my issues and his issues of prematurity overshadow Drake’s journey in his clubfoot treatment.

Our course in some ways has been very straightforward,  and so far this first year has gone as well as can be expected. Our start in his treatment was a bit different due to the circumstances of his early birth.

From my research into this condition,  a diagnosis is usually made sometime during ultrasounds that occur after 30 weeks. Because Drake was born at exactly 30 weeks, we did not receive the early diagnosis that allows parents the time to select a specialist and make a treatment plan.

On Day 2 of his NICU stay, I was waiting for my wheelchair ride to take me down to the NICU. I was starting to feel a bit clearer as the medicine used to unsuccessfully halt my early labor was leaving my system. Although still a bit shaky from the emergency c-section and unexpected birth of my son, as well as those fun hormones.

My husband and some of the grandparents had gone down to the NICU to see Drake and give me some privacy for my doctor’s rounds. Suddenly, I overheard “they don’t know what’s wrong with his foot yet, but they had a hard time straightening it for the footprints.”

Say what? I LOST IT.

My infant son who still had seriously high jaundice levels, who was still on CPAP, and who I hadn’t been able to TOUCH yet had something wrong with him. Not to mention other people knew about it, but I didn’t. My husband had to send everyone away to calm me down.

I have pictures of Drake that show his foot as it looked in the NICU prior to the stretching exercises that PT had us and his nurses doing with every diaper change (6-8 times daily) as part of his cares. For now, they still feel really intimate so I’m going to keep them private.

We didn’t receive a diagnosis of clubfoot until my discussion with PT just prior to his NICU discharge. We left with a referral for an Orthopedic surgeon, and instructions to continue his stretching exercises 6-8 times a day.

Drake is being treated by Cincinnati Children’s Orthopedic team under the Ponseti method of treatment. He received serial casting, heel tendon release, a final three week cast, and 23 hour/7 days week bracing. He’s now in the sleepy time only phase of treatment that will last until he’s 4 or 5.

He is in the John Mitchell Shoes with Ponseti Bar manufactured by MD Orthopedics. It’s the 3 buckle sandal type of shoe. As a wiggly 1 year old, he is much less fond of laying still for his shoes to be put on, which has led to a “Night Night shoe” song and a double team bedtime shoe routine.

There were a few things that were very hard for me during the casting phase.

1. Seeing my newborn in a cast. Even after the NICU, I sat in my car with him in his carseat and just cried after that first cast. I had to call my mama.

2. The looks from other people who realized my tiny infant was in a cast. Ask don’t stare people! That goes for any child with a medical condition. Ask POLITELY, and most parents will gladly educate you unless we are having a very bad sort of day.

3. Soaking that thing off and keeping it wet during the hour drive to the doctor’s office!

The following are the resources I use to gain knowledge about his treatment and support from other parents. I hope this helps other parents on their journey with this congenital birth defect.

Ponseti International – Named for Dr. Ponseti who developed this treatment, and trains medical professionals worldwide

Russell’s Feet – A Parent blog

No Surgery for Clubfoot Parent Yahoo Group  To discuss non-surgical methods of treating clubfoot (also known as Talipes), but specifically the Ponseti Method. We are here to get the word out and to support each other through the various stages of correction.

Clubfoot Shoe Exchange (a facebook group network of US parents who share gently used shoes if insurance refuses payment for these medically necessary AFO’s)

 

4th Cast Mother's Day 2012, 2.5 months old/12 days adjusted

4th Cast Mother’s Day 2012, 2.5 months old/12 days adjusted

12
Nov
12

Developmental Assessment

I’m a weird mixture of scared and excited about this appointment. I’m definitely not an expert on infant/early childhood development as my education and work experience tends more toward the financial world. I can see where Drake is and what I think needs improvement.

His pediatrician believes him to be making good progress as of his 6 month wellness checkup. That is good progress for a 6 month old who is really barely 4 months old. He’s still got a tendency to be a picky eater, and some family members are trying to make me force him to sit up on his own (like I have control over that). I’m very careful not to use “Dr. Google” or make comparisons to a friend’s baby who was born 3 days after what should have been our due date.

Just like the NICU, this is unexplored ground for us. I’m so thankful my husband was able to take a half day on Thursday to go with us. He may think of things that I would miss.

So at 8 months, 3 weeks/6 months 2 weeks adjusted, he is

1. sitting with support

2. grasping object and stuffing them in his mouth

3. stealing his feeding spoon

4. eating 4-6 tbsp of pureed food/28 to 30 oz of 24 cal formula

5. getting up on his hands and knees and rocking but not crawling

6. laying on his belly and kicking and swirling arms like he’s swimming

7. on the growth charts for height, weight and head circumferance (1% baby yeah!)

8. wobbly standing if I set him on his feet

I think he may need help with:

1. a week core? the not sitting thing does bother me with the amount of tummy times he gets

2. talking/communicating – he’s good with various cries and has some babble, but he’s not exactly following the ga ga, baba, mama, dadada thing to me

3. his leg muscles especially calves are pretty underdeveloped looking after the clubfoot casting and treatment

 

I think he is an amazing miracle. I want to make sure he gets help if he needs it.

Remember World Prematurity Day, November 17th!!! All babies deserve a healthy start!




Drake’s 3rd Birthday

February 20th, 2015

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