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. 

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.

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. 🙂

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.

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.

 

 

 

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!