Hello drinking from a straw! Nice to meet ya!!! I pulled out the Honey Bear Straw last night and Addy is loving it! She has never responded to it before! She has actually been able to suck a little by herself too!
Saturday, August 27, 2011
Yeah!!!
Hello drinking from a straw! Nice to meet ya!!! I pulled out the Honey Bear Straw last night and Addy is loving it! She has never responded to it before! She has actually been able to suck a little by herself too!
Soo much better!!!
I tried to get Addy to stand for a cute picture since it's been awhile since I posted a happy, smiley pic. in her new favorite shirt that she picked out. She kept walking off. That is definitely a good thing!
Addy had a good week considering she is fighting three different infections! I took her to the doc on Wednesday due to her g-tube had that lovely green gunk and her eye was red and she still had blisters on her mouth.
She was diagnosed with Stomatitis (the blisters around her mouth), g-tube infection and her eye was infected due to having an issue with her sinuses! She did NOT have hand/foot/mouth (which many people told me she did even though I kept saying it was not like it at all) or pink eye (which I also knew was not the issue) :) So she is now on Omnicef to help with the g-tube infection and an antibiotic eye drop for the eye. The Stomatitis could be caused by many things. Fortunately she just had her iron level checked last week and it was 13.1 so she is fine there. All of her nutrition doesn't change since her formula is her sole form of nutrition at this point. So not sure what caused it, we brush her teeth every day so I'm hoping that poor oral hygiene isn't the issue! She goes to the dentist soon so we'll make sure nothing is going on there.
On to the g-tube. I have found out that I think we are the only family that gets ONE g-tube per year. Yes you read that right, ONE! It is NOT an insurance thing, we can have 4 paid by our primary insurance. If we would need more, her supplemental Medicaid would kick in. It's the Nurse Practitioner that is in charge of g-tubes. She doesn't think tubes need to be replaced more than once a year unless it is broken. She has been with Addy since we brought her home. She was involved in all of Addy's surgeries (jg tube placement, analplasty, colostomy takedown etc.) I really trust her with the care of Addy. However, this whole one tube thing really gets to me. I know MANY of you change g-tubes yourselves at home all of the time!!! I have beyond capable nurses in my home all week that could change them too. Another thing... when Addy needs a new tube, we have to be checked into the hospital. Yes admitted! Then we go up to the PICU, yes the Pediatric Intensive Care Unit to have the button replaced. It takes forever sometimes and who knows what we are exposed to when we are in the unit. Fortunately we are a little separated, but still. When I took Addy to her pediatrician she didn't know who the NP was in charge of her tube because she's in a different network. She immediately got on the phone to talk to her about Addy's seriously infected stoma and the nasty looking tube. The water in her balloon is constantly turning a nasty yellow. The NP said that sometimes the water in the balloon can be black and it's fine. I totally don't agree with this. Fortunately my ped told the NP that since Addy has an infection she wants a few days on the antibiotics and then a new tube placed. So we will be going in next week to get it changed. I am praying for the day that we say bye bye to this tube :)
Addy had a great first week of school and is jabbering up a storm there! She didn't really say anything at school last year. Her teacher told me she's pretty sure Addy told her off about something :) Fortunately she couldn't understand her! I hear it's a real trip to watch Addy lead the Pledge of Allegiance, can't wait to video that! She loved music of course and is interacting more with the kids, being vertical is helping SOOO much! I'm so proud of my girl!
Look how well her hair is already growing back!
Tuesday, August 23, 2011
Random Addy issues
Well, so much to report! All of Addy's stool samples came back negative so she just had some sort of virus. No Rotavius, C-Diff, parasites, blood in stool etc :) She has been fine yesterday and today. Absolutely loving school of course :) She was line leader today. It was a very slow line :) She's walking well at school in the classroom. She needs a little prodding to walk but she's doing it :)
I had to work late but when I got home Nurse Kim had given Addy her bath (she is an absolute angel on earth!) and noticed that Addy's g-tube had some puss coming out of one side :( It's been really gunky lately and leaking some but now it looks like it may be infected :( So it looks like we'll be making a trip to the pediatrician tomorrow.
When I put her in her high chair for dinner I noticed that her left eye was red. I just assumed that I may have scratched it with her bib. However, it is still red over an hour later! Not sure what that's about!
I finally hung up Addy's backpack holder :) She's very proud of her "Punzel" backpack :) I had to hang it sooo low so she could hang it up by herself :) She is such a tiny little peanut!
I had to work late but when I got home Nurse Kim had given Addy her bath (she is an absolute angel on earth!) and noticed that Addy's g-tube had some puss coming out of one side :( It's been really gunky lately and leaking some but now it looks like it may be infected :( So it looks like we'll be making a trip to the pediatrician tomorrow.
When I put her in her high chair for dinner I noticed that her left eye was red. I just assumed that I may have scratched it with her bib. However, it is still red over an hour later! Not sure what that's about!
I finally hung up Addy's backpack holder :) She's very proud of her "Punzel" backpack :) I had to hang it sooo low so she could hang it up by herself :) She is such a tiny little peanut!
Monday, August 22, 2011
First Day of PreK
I am so happy to report that Addy felt well enough to go to school today! I got horrible pix, so sorry! She had a great day! She did a lot of walking but I didn't get any pix of that. I figured she would take a great nap but she didn't nap at all! Crazy! She is sooo sleepy, she's going to be out in the next half hour or so :)
Sunday, August 21, 2011
This is getting old
I wish I knew what was going on with Addy. She was cranky all day yesterday. Seriously ALL DAY. She rarely fusses and she was either whining or crying all day. She didn't nap either which made it worse. She slept well last night though. Didn't wake up with a smile but wasn't crying.
This morning she ate breakfast pretty well and asked to watch Signing Time and now she's folded over on the chair just staring around. She hasn't had loose stool since Thursday morning and no fever since Thursday either. She still has the one big blister on her bottom lip. She's supposed to start school tomorrow but if she is acting like this there's no way she can handle three hours at school. I guess I'll see how the rest of the day goes :( I haven't heard anything about the samples that the nurse took in on Friday. I imagine since it's a weekend I'll have to wait until tomorrow morning to hear anything.
Friday, August 19, 2011
Thursday, August 18, 2011
Because it is OUR problem
this post is copied from Adeye's blog, do not ignore this if you have no idea who Adeye is, this is our problem.
"Sometimes I would like to ask God why he allows poverty, famine and injustice in the world, when He could do something about it...but I'm afraid He may ask me the same question." Anonymous.
Honestly? I don't even know how to write this post! I have sat staring at a few pictures for the last few days, thinking, "How in the world do I even put this atrocity into words?" I am not the most eloquent with words at the best of times--but this--this is absolutely heart-wrenching.
Type. Delete. Type. Delete. Sometimes, the right words are just so hard to find.
Allow me to introduce you to a very special little girl. This is Liliana (not her real name).
Isn't she so beautiful?
The above pictures were taken about two years ago. Sweet Liliana was nine years old at the time. Nine! In spite of her tiny size, she actually seemed to be doing alright when these were taken, judging from the pictures. I can totally handle these photos.
Unfortunately for Liliana, no one ever came for her. She was never rescued. And added to that, she lives in a country which, very sadly, sees no worth or value in those who have special needs. Nothing, and I mean nothing, could ever have prepared me for the latest pictures of her.
Friends, the pictures below are hard to look at. They just are. No doubt about it. For some, they are too hard to look at. Many would even choose to turn their backs, and as the president of World Vision, Richard Stearns, so accurately said, they would say, "Sorry, not my problem!" It's hard for us to face reality such as this. It's almost impossible for us to even wrap our heads around the gravity of a situation like this. Sometimes it is so much easier to live in our four walls and NOT know what happens on the other side. It's comfortable there. I know, because I have been there, done that.
But how can we possibly say that this is not our problem?
There are times when we are called to rally for the sake of another human being--one who will never be able to pay us back or give us a single thing in return. As John Wooden once said, "You cannot live a perfect day without doing something for someone who will never be able to repay you."
So, because this IS my problem, I knew that sitting back and not doing a darn thing simply was not an option. I cannot travel to the other side of the world and bring this darling home. We don't qualify. But doggone it, I sure can try to do everything in my power to make sure that she does come home, and that finances are the last thing her family needs to worry about as they scramble to get the necessary paperwork together. Getting there as fast as is humanly possible is the only thing they should have to worry about. We really do not have to adopt a child to make a profound difference in their lives. Just give--a little or a lot. Give what you can and watch God multiply it. It's the loaves and the fishes stuff.
Together, we can make a HUGE difference!
Yesterday I made an appeal to my lovely blog readers for a few items to give away as part of a fundraiser for precious Liliana. As usual, I was blown away. God's people really do astound me. Some had already seen Liliana's picture doing the rounds and were so eager to jump in and help out. I have put a Chip-In at the top of this post. The total is set at $22,000.00. Sounds like a whole lot of money--yet nothing in God's economy. Nothing for the sake of a child.
And so today I come to you pleading for help. Yes, I'm begging again. Please would you consider sowing seed into Liliana's grant fund? Every little bit donated will add up and become such a huge blessing to the family whom God raises up to rescue this angel.
We're raising the ransom here! This is Liliana's deliverance. It's her redemption!
My friends, The Malones, who run an amazing ministry which helps orphans called the Eli Project (who you may remember from Vanya's fundraiser) have graciously agreed to receive all the funds donated for Liliana in their non-profit. Every single dollar donated will go to the family who adopts her and the money will be dispersed by the Eli Project. The Malones have such huge hearts for the orphan--they definitely walk the talk and I love that about them.
Goodness gracious, the list of giveaway items below is absolutely awesome! People sure have opened their hearts to a little girl so desperately needing to be rescued and they have donated some fabulous things. This is a giveaway so all winners will be chosen at random by an automated selection program.
Also, would you please help us by spreading Liliana's fundraiser to anyone you know? Please share her story on blogs and social networks so that one teeny, tiny little life can be redeemed and beauty can rise from these ashes. I appreciate that so much. We're stretching our faith to trust the Lord for a fully funded adoption.
Here's how this will work:
~~~ Receive one entry for each donation you make in the Chip-In.
~~~ Receive a second entry when you mention this giveaway on your own blog.
~~~ Receive a third entry for mentioning it on your Facebook or Twitter.
Please remember to leave separate comments for each of the above categories.
Below are the amazing items which are up for grabs. Thank you, thank you to the incredible friends who donated them. I am so thankful for the outpouring of love for sweet Liliana.
"NOW....show us your glory, Lord!" Exodus 33:18
Nikon D3000 Camera
Valued at $500
~~~~~~~~~
~~~~~~~
A $500 Target Gift Card
~~~~~~~
Pandigital Novel e-Reader
Valued at $170
~~~~~~~
$200 Gift Card to Christian Book Distributors
~~~~~~~
Creative Memories Gift Hamper
Valued at $200
"Sometimes I would like to ask God why he allows poverty, famine and injustice in the world, when He could do something about it...but I'm afraid He may ask me the same question." Anonymous.
Honestly? I don't even know how to write this post! I have sat staring at a few pictures for the last few days, thinking, "How in the world do I even put this atrocity into words?" I am not the most eloquent with words at the best of times--but this--this is absolutely heart-wrenching.
Type. Delete. Type. Delete. Sometimes, the right words are just so hard to find.
Allow me to introduce you to a very special little girl. This is Liliana (not her real name).
Isn't she so beautiful?
The above pictures were taken about two years ago. Sweet Liliana was nine years old at the time. Nine! In spite of her tiny size, she actually seemed to be doing alright when these were taken, judging from the pictures. I can totally handle these photos.
Unfortunately for Liliana, no one ever came for her. She was never rescued. And added to that, she lives in a country which, very sadly, sees no worth or value in those who have special needs. Nothing, and I mean nothing, could ever have prepared me for the latest pictures of her.
Friends, the pictures below are hard to look at. They just are. No doubt about it. For some, they are too hard to look at. Many would even choose to turn their backs, and as the president of World Vision, Richard Stearns, so accurately said, they would say, "Sorry, not my problem!" It's hard for us to face reality such as this. It's almost impossible for us to even wrap our heads around the gravity of a situation like this. Sometimes it is so much easier to live in our four walls and NOT know what happens on the other side. It's comfortable there. I know, because I have been there, done that.
But how can we possibly say that this is not our problem?
 |
| These pictures were taken this month. |
Liliana is now eleven years old. Yup, ELEVEN. Her weight? Ten pounds! That's not a typo. TEN measly little pounds. My babies were born weighing ten pounds, for goodness sakes. I have no idea how Liliana has even survived this long. She's a fighter--a survivor, for sure.
She is nothing but skin and bones. It's pathetic. I even have her measurements. Her wrist is three inches around. Her upper arm is three inches around. Her legs are 13 inches long, hip to heel. Her head is 16 inches in circumference. Her foot is four inches long. You have got to be kidding me.
For crying out loud....She is eleven years old!
How the Father must weep at what He sees.
How is it even possible for a little girl with Down syndrome to be allowed to literally waste away in a crib? Be starved of adequate nutrition? Be so emaciated that her skin looks like it is about to tear?
This is real life. This is what happens to millions of children just like Liliana--the ones who lie confined to metal cages their entire lives. The ones who suffer at the hands of humans who simply just do not care that all life is precious and valuable.
Of course this is our problem! "Our," as in all Christians, that is. We're the ones whom the Father has commanded to "care for the widows and the orphans" (as it says in the book of James).
We cannot turn a blind eye, walk away, and forget about the atrocious catastrophe that happens to the fatherless. We simply cannot. Yes, there are times when God calls us to pray as a body--to come together in unison and trust Him to move a seemingly impossible mountain. But then there are the other times. The ones where we are spurred into action.
I'll be honest with you. These pictures of Liliana make me so fuming mad. The injustice of it all makes me feel physically sick. They make me want to fight for the orphan all the days God grants me breath on this earth. These pictures make me want to scream at the top of my lungs, "This IS our problem!"
Together, we can make a HUGE difference!
Liliana's greatest need right now is the ransom
 |
| Oh, sweet girl, hang in there. Don't give up! Please, please hang on. Help is on the way. |
Yesterday I made an appeal to my lovely blog readers for a few items to give away as part of a fundraiser for precious Liliana. As usual, I was blown away. God's people really do astound me. Some had already seen Liliana's picture doing the rounds and were so eager to jump in and help out. I have put a Chip-In at the top of this post. The total is set at $22,000.00. Sounds like a whole lot of money--yet nothing in God's economy. Nothing for the sake of a child.
And so today I come to you pleading for help. Yes, I'm begging again. Please would you consider sowing seed into Liliana's grant fund? Every little bit donated will add up and become such a huge blessing to the family whom God raises up to rescue this angel.
We're raising the ransom here! This is Liliana's deliverance. It's her redemption!
My friends, The Malones, who run an amazing ministry which helps orphans called the Eli Project (who you may remember from Vanya's fundraiser) have graciously agreed to receive all the funds donated for Liliana in their non-profit. Every single dollar donated will go to the family who adopts her and the money will be dispersed by the Eli Project. The Malones have such huge hearts for the orphan--they definitely walk the talk and I love that about them.
Goodness gracious, the list of giveaway items below is absolutely awesome! People sure have opened their hearts to a little girl so desperately needing to be rescued and they have donated some fabulous things. This is a giveaway so all winners will be chosen at random by an automated selection program.
Also, would you please help us by spreading Liliana's fundraiser to anyone you know? Please share her story on blogs and social networks so that one teeny, tiny little life can be redeemed and beauty can rise from these ashes. I appreciate that so much. We're stretching our faith to trust the Lord for a fully funded adoption.
Here's how this will work:
~~~ Receive one entry for each donation you make in the Chip-In.
~~~ Receive a second entry when you mention this giveaway on your own blog.
~~~ Receive a third entry for mentioning it on your Facebook or Twitter.
Please remember to leave separate comments for each of the above categories.
Below are the amazing items which are up for grabs. Thank you, thank you to the incredible friends who donated them. I am so thankful for the outpouring of love for sweet Liliana.
"NOW....show us your glory, Lord!" Exodus 33:18
~~~~~~~~
Nikon D3000 Camera
Valued at $500
TWO iPads
32GB
Valued at over $600 each..
~~~~~~~
A $500 Target Gift Card
~~~~~~~
A $500 Walmart Gift Card
~~~~~~~
$200 Gift Certificate from Posh Tots
~~~~~~~
A Classic White Moses Basket with Minky
From Posh Tots
~~~~~~~
A Coach Purse
Valued at over $400
~~~~~~~
A Coach Purse
Valued at over $400
~~~~~~~
FIVE Amazon Gift Cards!!!
1 x $100
1 x $100
1 x $100
1 x $100
1 x $75
~~~~~~~
An iPod Nano
Valued at $140
~~~~~~~
Wii Band Hero
Valued at $180
~~~~~~~
FIVE Kindles!!!
~~~~~~~
TWO gift certificates to:
(medic alert and ID bracelets)
1 x $50
1 x $25
~~~~~~~
A Choice of THREE bracelets from:
~~~~~~~
TWO iTunes Gift Cards
1 x $100
1 x $25
TWO iTunes Gift Cards
1 x $100
1 x $25
~~~~~~~
$100 Lowes Gift Card
~~~~~~~
Pandigital Novel e-Reader
Valued at $170
~~~~~~~
$200 Gift Card to Christian Book Distributors
~~~~~~~
Creative Memories Gift Hamper
Valued at $200
Subscribe to:
Posts (Atom)