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!

6 Month Stats

Claire had her six month well baby appointment last Wednesday, and she is a growing machine since her OHS!

She weighs 13 lb, 12 oz.  (50% on Ds chart, 10% typical) and is 24.5 inches long (35% Ds, 18% typical).  She weighed 11 lb, 8 oz before her surgery just 6 weeks ago. While I am absolutely thrilled with all this weight gain (she didn't gain anything in the 2 weeks prior to OHS), it means that I bought WAY too many size 1/2 diapers!  I knew she would take off after surgery, but I didn't expect an almost 2.5 lb gain in 6 weeks. 

Claire got two shots at the appointment and did as well as can be expected with them.  There were the usual tears, but I was able to get her calmed down pretty quickly.  One of her poor little legs still has a knot in it from the shot, but it doesn't seem to be bothering her.  The appointment wore her out and she crashed on the floor after just a couple of minutes.

Other six month stuff:

• We tried cereal for the first time last week after her well baby appt.  It went ok and I have lots of cute pictures to share.
• Claire's favorite toy is her Octoplush.  She clutches him to her chest causing him to cycle endlessly through his songs.  Some other favorite toys include her Oball Rattle and Crinkle Book.  Links and her mirror are still hits as well.
• I'm going to have to move Claire out of our room soon.  The weight limit on her bassinet is 15 lbs, so I probably only have about a month left before she's at that weight.  Our house is a bi-level, so she'll be on a different floor, and I think she's going to sleep on her stomach in her crib, neither of which I'm crazy about.
• Claire is eating about 20-24 oz a day. She still sleeps through the night (9-5:30), but isn't on a good nap schedule.  Some days have one nap, some days four naps.
• We had a follow up appt with an eye Dr a couple of weeks ago to talk about her nystagmus.  The Dr did a VERY quick exam, said everything looked perfect with no peripheral vision loss like we were concerned about, and sent us on our way.  Yes, I'm thrilled her eyes look great (back in a year for a check up), but I wasn't excited about a 4 hour round trip drive for a 15 minute appt...We still need to do a swallow study and hearing test to finish up her 6 month appts.
• Gravity has finally worked its magic on her hair and it no longer stands straight up.  I'm going to have to get used to putting barrettes in her hair though because it's long enough that it's ALWAYS in her eyes.

Whew, I think that catches me up for now!

Comparisons

As a first time parent, I have the big milestones loosely in mind.  Sitting around 6 months, then crawling after that, and walking sometime around a year.  That is how things are 'supposed' to happen.  I also know that Claire will probably not follow this same timeline.  And honestly, I'm ok with that.  I know that this may change, that I may get discouraged with what may be seen as a lack of progress, but for now, I revel in what she can do. 

I love that she rolls onto her belly and can happily spend what seems like forever playing with her toys.  I love that when she sees me come around a corner, or into her line of sight, her entire face lights up.  I love that she is a hard worker.  She wants so badly to sit up, and will try and try until she is all tuckered out.  I love that she sleeps through the night, and wakes me up in the morning to a foot waving overhead and soft coos.

There are plenty of opportunities for comparisons.  I have a niece that is three weeks older than Claire, and she goes to daycare with a little boy one week younger than she is.  They are doing things she is 'supposed' to be doing.  And yet, when I look at them I'm not sad.  Instead, I see what we have coming up, the next steps we have to look forward to.  And I thank God everyday for keeping me focused on what is, instead of what is 'supposed' to be.

These are the days...

I love.  The days where laundry, dishes and work don't take over.  Where we can enjoy a walk in the morning, some time in the hammock, and simply laying on the floor playing.

6 Months!

How is it possible that my sweet girl is six months old today?  It's seems like just yesterday we were waiting for her arrival. And now, six months and two surgeries later, she is perfectly healthy, changing and growing right before our eyes.  Every time I look at Claire I am amazed by her, and by how my life has changed for the better.

10 Years and 3000 Ounces!

Today, I'm going to celebrate a couple of my milestones, instead of Claire's!

Ten years ago today, I started working for an insurance agency, and while I enjoy my job, I never really figured I be in the same place for ten years!  The anniversary kind of surprised me since we'd been so busy with Claire's surgery, but now that I think about it, it almost wouldn't surprise me if I'm there for another ten years.  We don't have any plans to move, and in a small town like ours, there really isn't any where else I'd rather work.  It's a small office and it's been pretty much the same staff for all ten years.  After this long we're not just co-workers, but friends too.

While ten years at a job is impressive, I'm even more excited about my 3000 ounces...of breast milk in the freezer! Claire has never nursed.  She's always had a great suck, but wouldn't latch well.  I could get her latched and sucking for only a few seconds before she'd let go.  The doctors really wanted her to gain weight well, and with her OHS looming, pumping was the best solution for us.  I'm very thankful that I've been able to exclusively pump and provide her with milk, but man, it's a lot of work!  I could have done without the extra steps of pumping and washing bottles. 

My original goal was to pump for six months, and I've made that.  The milk in the freezer should get me through about three months, and now my goal is to get Claire through her first year on BM.  While I'm looking forward to the end of pumping in the next few months, I'm almost not sure what I'll do with another three hours a day!  ;)

This small freezer in our house held all of the small bottles from her NICU stay when she was born.  I've used most of them up since she'll be six months old next week.  We have more space with the small bottles gone, but we did have to purchase another chest freezer to hold all the milk!

Sitting Pretty and Cardio Update

Before Claire's OHS we tried to use her Bumbo a couple of times and it just didn't work.  She didn't have the trunk strength even though she had the desire to sit.  We were only able to put her in the chair for a few seconds before she leaned forward and became a big ball of baby.  Now, a month later, it's a whole different story!

Claire has been trying to sit up for so long.  She refuses to lay flat, and always has her head up and abs flexed.  We tried the Bumbo again last night and she loved it.  She could sit up, look around and play with her toys.

Yesterday, we had Claire's one month OHS followup.  The Dr did another echo, and while they can see some minor leakage with the valves, they can't hear a murmur.  She has a normally functioning heart and no restrictions at all!  We are so thankful to have her surgery behind us and are praising God that her repair is perfect.

And, just a final couple of pictures because her expressions just make me laugh!

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!