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Bandgeek update - Page 2

post #21 of 70
Still sending strength and love...........
post #22 of 70
sending blessings......
post #23 of 70
sending love and healing to you Princess Charlie!
post #24 of 70
Thread Starter 
latest update from bandgeek - i'm just going to copy and paste her email to me:

I saw the therapist today and asked about an SLP and she said she does that too? She seems to know what she's talking about, so who knows. She's actually an OT though, not a PT. I have NO idea the differences between these, so if anyone knows, by all means, explain it to me. LOL

She said she thinks Charlie is doing very well. Her muscles don't seem tight at all and she's not worried about her thumbs being tucked in because they aren't stiff and she CAN open her hands just fine. So basically, she's not stiff, and she does have good muscle tone. She's just a tired baby who prefers not to move much. LOL I knew she was strong. She can already lift her head off my chest and turn it completely to the other side. It was nice to hear it from someone else though.

She's not sure about her gag reflex. She's going to talk to a doc about it. She seems to think it's a good sign that she can cough though. And when the nurse suctions her, sometimes she does a little cough/gag thing, which is also good. Charlie actually fights the nurse when she's being suctioned. It's too cute! She puts up her little fist and hits the nurse.

A doctor asked if we'd have Charlie participate in a study having to do with gag reflex. It's simple, they just replace her feeding tube with a special one that sends back data. And it only takes about 3 hours and they do it at her bedside. I was reluctant at first because they wanted to put APPLE JUICE in her! I told them I was *very* uncomfortable with that because of our family history of allergies (MIL is actually allergic to apples), so they said they'd just do the breastmilk part and skip the apple juice. I double checked and made sure they wrote it in huge letters and I'm also going to go in while they do it to make sure there's no mistakes.

After they do that (I think on wednesday), they want to start putting her at the breast. They don't expect her to do anything right now (she doesn't suck, swallow, or even move her tongue at this point), but they want her to be familiar with the breast and associate it with feeds. We'll also be stroking her lips and tongue during feeds too.

There's a lady here at the ronald mcdonald house who's baby girl is in a very similar situation. They've been here over a month and her baby is just starting to move her tongue. But that gives me a lot of hope because Charlie has only been here two weeks and is already doing what this other baby is just starting to do (moving her limbs and starting to track with her eyes).

I think that's about it.
post #25 of 70
Thank you for the update, Happyfrog..

Someone correct me if I'm wrong here. Occupational therapy is used in "life long" situations. For instance ones with long standing disabilities. For instance those who may be paralized, or etc.

Physical therapy is for those with short term problems that will eventually go away..

Thanks for keeping us in the loop, we've all been thinking of Princess Charlie.
post #26 of 70
Happy Frog, Thought I'd respond to your questions about various therapists. An OT is an occupational therapist. In young children, this means that they would work with fine motor skills, (using your hands or eyes) as well as issues like balance and sensory awareness (if the child is sensitive to lights or sound or certain textures, for example).

A PT, or physical therapist, works with gross motor skills, such as rolling over, sitting up, crawling, and walking.

An SLP, or speech language pathologist, works with speech, both understanding and talking.

My own daughter was enrolled in an early childhood special education for a while. I had a great experience with it and really appreciated the additional support and ideas I received from the program. In fact, I went on to get a master's degree in Early Childhood Special Education and work in the field myself!
post #27 of 70
thanks for the update

thinking of you every day, princess charlie
post #28 of 70
Thread Starter 


Charlie's getting a gtube placed tomorrow.

she's sucking 5-7 sucks on a finger before stopping with exhaustion. She's also starting to show a gag reflex.

All good stuff!
post #29 of 70
I was thinking of her the other day. Glad to hear the good news. Give Bandgeek our love.
post #30 of 70
Yay! I hope things continue to improve.
post #31 of 70
I've been wondering, too- thanks so much for the update. Glad to hear some good news about Princess Charlie!
post #32 of 70
Glad to hear some good news! Thanks for the update. Continuing to send love.
post #33 of 70
Sending Bandgeek and her family all the best. I think of her so often. Many prayers for continued good news for Princess Charlie!
post #34 of 70
post #35 of 70
Thanks for keeping us posted. This is all good news and I hope there is more soon.
post #36 of 70
Great news!

: for Princess Charlie!
post #37 of 70
Awesome!! Way to go Miss Charlie!!
post #38 of 70
I actually just popped into the ddc to check up on her! Still thinking about them on a daily basis!
post #39 of 70
Thread Starter 

UPDATE! and pic links!

I got to meet Charlie in person today! She is the cutest, most precious princess you have ever seen! OMG, I am in LOVE!

She yawned today!! I missed it - A and I were playing on the playground then, but she yawned multiple times!! She also had her feeds increased today 15ml thru gtube. AND she sucked on mommy's finger quite a few times - I think the longest was 9 sucks in a row! isn't she awesome?!!!

Wanna see her?


<a href="http://photobucket.com" target="_blank"><img src="http://i12.photobucket.com/albums/a212/happyfroggy/Princess%20Charlie/IMG_1805.jpg" border="0" alt="Photo Sharing and Video Hosting at Photobucket"></a>



The previous links are all to the same photo, but I have no idea what will show up properly.

isn't she just the cutest?!!!

post #40 of 70
Oh...How sweet!!! So happy she is doing well! Go Princess Charlie! She is the cutest!

Thanks for sharing and updating us!
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