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.

 

 

 

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.

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!