Bandgeek update - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#1 of 70 Old 10-16-2007, 08:13 AM - Thread Starter
 
happyfrog's Avatar
 
Join Date: Aug 2004
Location: on a lily pad. . . where else?!
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Princess charlie has had many ups and downs recently - things got real scary yesterday morning. she's off feeds and back on oxygyen. bandgeek and her dh had a long meeting with the med people re: what to do for her. The med people told her that she might be ok but have delays, but they don't know for sure. she may or may not need a trach and feeding tube her whole life. again, they just don't know yet. the med people wanted to know what bandgeek and her dh wanted to do for her care. they decided they want princess charlie to have the care she needs to live. I can't even imagine the pain and heartache that they are going thru having to make such decisions.

the docs do seem hopeful that she'll be ok, though - just delays and she may or may not talk and walk but again it's just one of those things. some babies come thru and are typical in every way, others have some residual effects.

the docs are also still working on the seizure cause and the feedings as princess charlie is not tolerating food well and is going to be back on iv only feeds for a while.

bandgeek gave me the impression that charlie will be in hospital for a while. i keep hoping and praying that she'll be home soon.
happyfrog is offline  
#2 of 70 Old 10-16-2007, 08:15 AM
 
IntuitiveJamie's Avatar
 
Join Date: Jun 2006
Location: Mississippi
Posts: 3,812
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
:::

Mindful Spirit Expo is on April 21 and 22nd. Raise your consciousness!

Intuitive Encounters business merger means discounts for a limited time.

IntuitiveJamie is offline  
#3 of 70 Old 10-16-2007, 09:41 AM
 
mighty-mama's Avatar
 
Join Date: Sep 2005
Location: wanting a normal life
Posts: 2,437
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thank you for updating us. I am at a loss for words.. Please let bandgeek and her family know they are in my thoughts and prayers.
mighty-mama is offline  
#4 of 70 Old 10-16-2007, 11:29 AM
 
beemama's Avatar
 
Join Date: Mar 2004
Location: once upon a time called Right Now
Posts: 2,289
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
::
beemama is offline  
#5 of 70 Old 10-16-2007, 12:57 PM
 
*jeanine*'s Avatar
 
Join Date: May 2005
Location: In the dark
Posts: 2,148
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
: : :

Mama to three  
*jeanine* is offline  
#6 of 70 Old 10-16-2007, 01:01 PM
 
sunshine's mama's Avatar
 
Join Date: Mar 2007
Location: off coveting palm trees and sea air
Posts: 1,932
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
::



lit a candle in the chapel at the hospital last night while visiting mom....dd did one too....
sunshine's mama is offline  
#7 of 70 Old 10-16-2007, 01:04 PM
 
lactivist's Avatar
 
Join Date: Jun 2005
Location: in abundance
Posts: 2,707
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thanks for keeping us updated. I think of them all the time and keep checking for updates. I am holding out hope that Princess Charlie will defy all with her strong spirit. Keeping you all surrounded in love.
Wendi
lactivist is offline  
#8 of 70 Old 10-16-2007, 04:09 PM
 
SortaCrunchy's Avatar
 
Join Date: Nov 2005
Location: OKC
Posts: 539
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh, my heart just aches for Bandgeek and her husband. Sending many, many prayers for Charlie's health and future and for Bandgeek and her DH to have the wisdom and strength they need . . .

Megan - SortaCrunchy mama to blahblah.gif Dacey (7) and energy.gif Aliza Joy (5). Expecting mo-di twin boys baby.gifbaby.gif February 2013!

SortaCrunchy is offline  
#9 of 70 Old 10-16-2007, 10:09 PM
 
mighty-mama's Avatar
 
Join Date: Sep 2005
Location: wanting a normal life
Posts: 2,437
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
still thinking of you and your family..
mighty-mama is offline  
#10 of 70 Old 10-16-2007, 10:35 PM
 
stacyg's Avatar
 
Join Date: Oct 2004
Posts: 1,714
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Bandgeek~Still thinking of you and your family. If there is anything we can do please do not hesitate to ask us. : :
stacyg is offline  
#11 of 70 Old 10-17-2007, 12:31 AM
 
greenmagick's Avatar
 
Join Date: Jun 2006
Location: St. Louis, MO
Posts: 2,496
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Nicole - )0( unschooling mama to Lilahblahblah.gif (12/21/05) and Cianwild.gif (9/21/07) as well as 3 dog2.gif 2 cat.gif,  4 rats, chicken3.gif and ducks
 
 

greenmagick is offline  
#12 of 70 Old 10-17-2007, 07:47 AM
 
Plaid Leopard's Avatar
 
Join Date: Sep 2003
Location: UK
Posts: 2,618
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Bandgeek-

I think of you and Princess Charlie every day.
I hope and pray that she will be all right. I am picturing you taking your sweet, healthy baby home soon.
Stay strong mama!
Plaid Leopard is offline  
#13 of 70 Old 10-17-2007, 11:24 AM
 
AllyRae's Avatar
 
Join Date: Dec 2003
Location: Ohio
Posts: 6,391
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We're still thinking and praying for sweet Charlie....

~Brandon Michael (11/23/03), Jocelyn Lily Nữ (2/4/07, adopted 5/28/07 from Vietnam), Amelia Rylie (1/14/09), & Ryland Josef William (9/7/05-9/7/05 @ 41 wks). 
AllyRae is offline  
#14 of 70 Old 10-18-2007, 08:35 PM
 
lula's Avatar
 
Join Date: Feb 2003
Location: currently you mean?
Posts: 1,164
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I haven't been online and just saw this now. My thoughts and prayers are with you guys. Thanks for the update. I will keep this on my radar now.

Best wishes. btw Princess Charlie is a great name.
lula is offline  
#15 of 70 Old 10-18-2007, 11:42 PM
 
allbrightmama's Avatar
 
Join Date: Aug 2004
Posts: 468
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thinking of Princess Charlie every day. Prayers for the family...
allbrightmama is offline  
#16 of 70 Old 10-19-2007, 09:35 AM
 
mighty-mama's Avatar
 
Join Date: Sep 2005
Location: wanting a normal life
Posts: 2,437
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Still thinking, praying, & wishes you all wonderful thoughts, each and every day..
mighty-mama is offline  
#17 of 70 Old 10-19-2007, 10:54 AM
 
stacyg's Avatar
 
Join Date: Oct 2004
Posts: 1,714
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
: for Princess Charlie!
stacyg is offline  
#18 of 70 Old 10-19-2007, 12:23 PM
 
beemama's Avatar
 
Join Date: Mar 2004
Location: once upon a time called Right Now
Posts: 2,289
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Our thoughts & prayers are with your family.
beemama is offline  
#19 of 70 Old 10-19-2007, 12:51 PM
 
bhawkins's Avatar
 
Join Date: Jun 2005
Location: middle TN
Posts: 775
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thinking of you and your little one, Bandgeek.
bhawkins is offline  
#20 of 70 Old 10-20-2007, 04:58 AM
 
Plaid Leopard's Avatar
 
Join Date: Sep 2003
Location: UK
Posts: 2,618
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Still thinking of you.
Plaid Leopard is offline  
#21 of 70 Old 10-20-2007, 11:05 AM
 
mighty-mama's Avatar
 
Join Date: Sep 2005
Location: wanting a normal life
Posts: 2,437
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Still sending strength and love...........
mighty-mama is offline  
#22 of 70 Old 10-20-2007, 11:49 AM
 
sunshine's mama's Avatar
 
Join Date: Mar 2007
Location: off coveting palm trees and sea air
Posts: 1,932
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
sending blessings......
sunshine's mama is offline  
#23 of 70 Old 10-20-2007, 05:29 PM
 
stacyg's Avatar
 
Join Date: Oct 2004
Posts: 1,714
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
sending love and healing to you Princess Charlie!
stacyg is offline  
#24 of 70 Old 10-20-2007, 05:47 PM - Thread Starter
 
happyfrog's Avatar
 
Join Date: Aug 2004
Location: on a lily pad. . . where else?!
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
happyfrog is offline  
#25 of 70 Old 10-20-2007, 07:45 PM
 
mighty-mama's Avatar
 
Join Date: Sep 2005
Location: wanting a normal life
Posts: 2,437
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
mighty-mama is offline  
#26 of 70 Old 10-20-2007, 08:24 PM
 
miamira's Avatar
 
Join Date: Sep 2007
Location: Far North
Posts: 12
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!
miamira is offline  
#27 of 70 Old 10-21-2007, 12:28 AM
 
*jeanine*'s Avatar
 
Join Date: May 2005
Location: In the dark
Posts: 2,148
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thanks for the update

thinking of you every day, princess charlie

Mama to three  
*jeanine* is offline  
#28 of 70 Old 11-01-2007, 12:40 AM - Thread Starter
 
happyfrog's Avatar
 
Join Date: Aug 2004
Location: on a lily pad. . . where else?!
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!
happyfrog is offline  
#29 of 70 Old 11-01-2007, 04:59 AM
 
Plaid Leopard's Avatar
 
Join Date: Sep 2003
Location: UK
Posts: 2,618
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I was thinking of her the other day. Glad to hear the good news. Give Bandgeek our love.
Plaid Leopard is offline  
#30 of 70 Old 11-01-2007, 10:20 AM
 
greenmagick's Avatar
 
Join Date: Jun 2006
Location: St. Louis, MO
Posts: 2,496
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Yay! I hope things continue to improve.

Nicole - )0( unschooling mama to Lilahblahblah.gif (12/21/05) and Cianwild.gif (9/21/07) as well as 3 dog2.gif 2 cat.gif,  4 rats, chicken3.gif and ducks
 
 

greenmagick is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off