Day 2: Random Photo of My Day

We spent the weekend with my mom and dad, and today we came home a little earlier than planned.  A lot of our day was taken up with driving home, and a nap for me (Claire didn't sleep well last night, so neither did I), but we were still able to get some play time in.

Claire's OT brought some new toys over for her.  My favorite thing about new toys is to see which parts she really enjoys and picks up right away.  This is a toy where you hit the ball from the top, it rolls through the toy and comes out the bottom. 

Right away Claire has figured out that the pink ball is the easiest to drop down and she goes for it right away.  Her other favorite part of the toy is the first ball.  It's clear ball, with smaller ball inside and makes quite a racket when she shakes it.  She takes all of the balls off the top of the toy, shakes them, and throws them aside until she finds the one she wants.  It's a small thing, but I love seeing how her mind works.  She is one smart cookie!

PT with Pat Winders

Claire has been getting OT through EI since she's been about 6 weeks old.  And while I like our OT as a person, I don't know that she's really been all that helpful.  I feel like she is working on things that Claire already knows how to do, like tummy time and playing with her feet, instead of trying to stay a step ahead of her.  There have been times that I've had to suggest working on different things, like supported sitting and using the exercise ball, because she just wasn't doing it.  One of the downfalls of living in a small town is the limited availability of services.  While we don't have to wait to see providers, there also isn't really an option who to use, unless we travel out of town.  Which we are now going to do...

On Tuesday, Claire saw Pat Winders at Children's and it was a great appointment.  We started out with the usual history information, then talked about where Claire was at developmentally and if I had any concerns.  Claire breezed through all the basic skills, and Pat said she should be working on supported sitting, kneeling, and side to side weight shifts, which confirmed what I thought.  While I've been reading Pat's book, it was so helpful to be shown EXACTLY how to hold Claire's back, or the correct position for kneeling. 

Clarie is a mover (seriously, she is never still!) and Pat said that some of the skills she's missing, like pushing through her arms, isn't for lack of strength, but because you can't play with your toys if you are leaning on both hands.  Pat said that lifting the chest off the ground may not be a skill she ever does consistently because it just doesn't fit with her personality. 

In all her years of seeing kids with Ds, Pat has found that there are certain skills that give an indication of when a child will master gross motor skills.  For example, she said that if a child can pull to sit from flat ground without any assistance by eight months, it indicates that the child will probably be on the early end of the range for sitting, standing, etc.  Claire is already doing this at 6 months, and at first I didn't think she was going to show off her skills for Pat, but she came through in the end.

So, we go back in two and a half months (that's how long it takes to get an appt) and then monthly after that.  This will mean extra expense and time (it's a 4 hour round trip drive), but since I don't feel confident in our OT right now this is worth it to me. I hope that once Claire is sitting and working on OT skills, that I will feel better about the services available locally. 

Next up is educating our SLP about Talk Tools (she's never heard of it), or finding services out of town for that too...

Sorry no pictures, I was too busy absorbing all the great info.  And Aimee, hopefully next time we are in town it will work to get together!

Off Oxygen for Good!

On Wednesday I took Claire into her doctor.  The appointment was meant to check her oxygen levels while she was sleeping.  I keep her awake until right before we left the house for the appt (the clinic is literally 5 minutes from our house) and of course the little stinker woke up about 2 minutes before they called us back.  Even though her nap lasted all of 15 minutes there was no way she was going back to sleep again.  Her doctor wasn't comfortable just taking her off the O2 without knowing what her levels were so he had a monitor sent to the house for her to wear overnight. 

She fell asleep in the living room with us, so we got her moved into her room and hooked up.  She has really ticklish feet so it's always a trick getting the monitor on her toe.  While we were getting her settled she kept dropping into the high 80s and I had to keep adjusting the alarm so it wasn't going off.  I was afraid it was going to be a long night, but once she quit moving around she was a steady 92-94% all night long.  This is a little lower than she is when she's awake, but the doctor was happy with the levels and she is officially off the oxygen!

We are still on a therapy hiatus right now.  I let her spend all the time on her tummy that she wants, but I haven't really been pushing any of her exercises, and it's been really nice.  When we are playing I still think about how I should do things with her, but it's not as all consuming as it was before her surgery.  The break has showed me that she is still going to learn new things (she's starting to pivot on her tummy) without me pushing all the time.  I still have some mommy guilt that I'm not doing enough for her, but the surgery has been a nice reason just to sit and cuddle.

I'd like to start taking more pictures of Claire, but I really need and new camera and can't decide what I want to buy.  Hopefully I'll decide soon, because these posts need pictures!

Awesome PT appointment

When it come to Early Intervention and living in a small town, there are definite advantages (like being able to get into the program right away), and disadvantages (not having a PT locally available).  Since there isn't a PT in town, one comes up from Children's once a month, and the other 3 weeks a PT assistant travels our direction.  Claire has been seeing her OT since she's been about six weeks old. I really like her, but wanted to have the PT see her too as we are getting close to surgery.  Since her tummy time will be restricted for 6-8 weeks I wanted to make sure she has a solid foundation going in.

I really liked the PT.  She was friendly and knowledgeable.  I would describe my concerns, or areas we needed to work on, and she jumped right in with Claire, moving her around every which way.  I've been a little concerned that Claire has been favoring her right side. She really prefers to keep her head turned that way, and will look at nothing instead of turning to the left to look at us or her toys. I could tell the PT loved her job.  She would get so excited when we found an exercise that would work well for Claire. 

We have some great new ideas for working with Claire, and goals to try and reach before we see the PT next month.  I hope to get one more appointment in before the surgery.  The PT we saw today also works closely with Pat Winders, and will keep her updated on Claire's progress as we are set to meet with Pat in July.

Appointments

Claire was supposed to have her three month cardiology appointment yesterday, but it was cancelled due to a scheduling conflict.  The cardiologist is comfortable waiting until next month to see her, and I am still trying to decide if I am comfortable waiting that long.  She is doing very well, so I think it will be fine.  She's happy and eating well.  She's not struggling to breathe and is gaining weight, so I'm inclined to wait.  I think going to Denver with her by myself would be hard logistically with feedings and pumping, and I'd like to avoid it unless it's necessary.

We met with the nutritionist yesterday, and the OT today.  We checked Claire's weight and length and she is growing right along.  She is 10 lb, 4 oz and 22 inches, which is between the 50th and 75th percentiles on the girls with DS chart.  I'm thrilled with her weight gain (almost an ounce a day!) and that's one reason I think waiting to meet with cardio is ok. 

Her OT appt today was at her baby sitter's, and I think it was helpful for Sharon to see some of the things we do with Claire.  None of the "exercises" is all that different than you would do with a typical baby, but I think it's helpful just to have them demonstrated.

This weekend will be full of traveling to the grandparents, and I'm hoping I don't forget anything.  I'm also having Claire's three month pictures taken while I'm there, so new pictures next week!

Hope you all have a great weekend!

Early Intervention and vaccinations

Claire had her first Early Intervention (EI) meeting with providers today. I had met with the service coordinator last week, but it was mostly to go over the program in general and to set up this meeting with the providers.


Today we met with an Occupational Therapist and a Registered Nutritionist. They came during Claire's morning feeding so the first half of the meeting was mostly just chatting and getting acquainted. Once she was done eating the OT showed us a few things we could be doing with her tummy time to help strengthen her neck. She said that her the amount of movement of her head and strength in her neck was very good. She also mentioned that her muscle tone in her arms and legs was good. The OT recommended that in addition to tummy time we prop her up on her sides to allow her to work with her hands at her mid line.

The nutritionist did a bunch of calculations based on Claire's weight to make sure she is eating enough. She is eating an average of 3-3 1/2 oz per feeding and that is over what her caloric needs are. The nutritionist said that she thought we could stretch Claire's 1 am feeding out a bit, which would allow me a little more sleep! We go back to Claire's Dr on Friday for her 1 month check-up so I'll ask him what he thinks about this too. Before the nutritionist left she weighed and measured her. Her length is 18.75 inches and her weight is 6 lb 15 oz! Claire weighed 5 lbs 12 oz at her Dr appt less than 2 weeks ago, so I am thrilled that she is gaining so much weight.

For Claire's appt on Friday I also need to decide what I want to do for vaccinations. I want to do a delayed schedule, but don't have a specific schedule in mind. Did any of you do a delayed schedule and was there one that you would recommend?