Posts Tagged ‘EI

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. 

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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.

 

 

 




Drake’s 3rd Birthday

February 20th, 2015

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