Posts Tagged ‘developmental assessments

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.

 

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.

06
Jun
13

NICU Follow Up

In a few hours, I take Drake for his second NICU follow up clinic. There’s a chance that this time he will be discharged from it. I don’t know whether to feel happy he’s doing so much better than last November or scared that if something develops over the next year it will be that much harder to get him help. I think I just need to learn to not borrow trouble. I’m hoping since we agreed to be part of a study last visit that they’ll bring him back one more time at 2.

We’ll start with a hearing test. He wasn’t sitting up on his own yet at the last appointment, so they couldn’t do part of the test. He was 8 months actual/6 adjusted. The last visit was just 3 weeks after his hernia repair surgery, and he really took off in December developmentally.

We still struggle with weight gain. He was 17.8 lbs at his 15 month wellness a few weeks ago. My biggest fear is that he’ll get sick and lose the hard fought ounces. He has some foods he likes, and is still on 32 ounces of 26 cal/oz formula a day. At the slightest bit of discomfort from teething or any kind of overstimulation, he just stops eating altogether. Maybe I can get the clinic neonatologist and therapists to give me some advice about combating that. It doesn’t seem to concern his pediatrician.

I am very interested to see what they have to say about his hypotonia, and whether that is affecting his walking/lack of walking. He’s got several words he uses sporadically. I think he’s going to do very well on most of the gross and fine motor stuff.

I have some anxiety over this appointment, but my worry and anxiety has been a lot more manageable since RSV isolation ended. At the November appointment, I really hated both being in a hospital and the fact that he was playing with toys other kids had touched. Yuck!

I’m just really thankful I was able to get him down for an early nap. He was half asleep last time, and very angry by the end of the clinic.

6/3 was our scary anniversary. The day he stopped breathing and went blue. I went in the ambulance in a pair of jeans, a nightgown, and a pair of flip flops. I was weirdly calm. The paramedic was freaking out because he expected a 3 month old not a 7 lb newborn sized baby. None of the oxygen masks in the ambulance were small enough. The EMT and paramedic were surprised that I wasn’t freaking out on them. D was very prone to A&B’s in the NICU. I had seen that before just not without a monitor to show me his saturation level. We are so lucky that it was GERD, that he was fine, and that that was our worst day.

 




Drake’s 3rd Birthday

February 20th, 2015

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