We are headed out in a few minutes for a VCUG. They suck. :( The plan is to lay her on her back and wrap her tightly so she can't move. Oh man ... she LOVES that part. Then they xray her empty bladder. A catheter is then placed and her bladder filled, which always makes her scream. Then we wait and watch as she urinates. Normally, once the catheter is removed, a person pees. Not my peanut. We have laid there as long as three hours waiting for her to pee. Once she pees, they measure how much urine was retained and not peed out. The entire time they are looking for signs of urinary reflux.
This test sucks. There will be a lot of screaming and crying today. :(
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Tuesday, June 23, 2009
Sunday, June 21, 2009
Where have we been?
Meeting this beautiful girl at the Convention for Children with Microcephaly, that's where! If you don't recognize her, this is Schuyler of the great book Schuyler's Monster! I was thrilled to meet her and her parents. They were absolutely great to talk to. I was so happy to meet them! Schuyler seemed smitten with my Peanut, and played peekaboo and tickled her all weekend.
And yes, there are more photos of my beautiful Peanut and other kids, and of course lots to tell!! But for now, I need to go to bed and sleep. It was a long, emotional, exhilerating, wonderful weekend!
Sunday, June 14, 2009
No names on my blog ...
It was brought to my attention from another blog that perhaps anyone who blogs anonymously is "fake". I think that I have enough photos and regular followers here for that to be silly, but I feel like the finger was pointed.
If you are a regular follower of my blog (meaning we comment on each other's frequently, etc) and you don't know why I am anonymous, feel free to leave your email in a comment. I will give you the short story. :)
Enough people know me to be real and true, that I don't think it's an issue. I just got my fur raised when another blogger basically said "Anyone blogging anonymously is suspicious".
The only thing suspicious about me is my hair color. And no, this is NOT my real color. ;)
If you are a regular follower of my blog (meaning we comment on each other's frequently, etc) and you don't know why I am anonymous, feel free to leave your email in a comment. I will give you the short story. :)
Enough people know me to be real and true, that I don't think it's an issue. I just got my fur raised when another blogger basically said "Anyone blogging anonymously is suspicious".
The only thing suspicious about me is my hair color. And no, this is NOT my real color. ;)
Wednesday, June 10, 2009
Jaxson's Blankets For Babies
I never got around to posting about this, so I must do it now! We received the most beautiful blanket in the mail from an incredible mommy named Lacey. Her son Jaxson is an adorable little 3 year old with Down Syndrome and other issues. He is absolutely cute and definately a fighter!
Somehow in her spare time, Lacey manages to make these Blankets For Babies. I wish I could describe to you how soft and cuddly it is! And the trim, oh the trim is GORGEOUS. Of course, I happen to think that the little girl sitting on this blanket is the most gorgeous thing alive as well. :)
Done with that ...
You might notice I deleted the posts related to April Rose. The evidence proves that it was a sham, and that's that. I don't need the negativity here!
Stay tuned, I have an adorable picture of Peanut to post in a minute. As soon as my camera finishes unloading ...... (which is taking forever!! Darn eBay pictures on the same card).
Stay tuned, I have an adorable picture of Peanut to post in a minute. As soon as my camera finishes unloading ...... (which is taking forever!! Darn eBay pictures on the same card).
Wednesday, June 3, 2009
GI Appt today
Not yesterday, today. Not the 2nd, the 3rd.
.
.
.
.
.
I say that because in my infinite wisdom, I packed up my girl, her equipment, her afternoon feed, her DVD player, her favorite toy, and her lovely nurse and headed to the GI clinic yesterday. Only to be told that our appointment was today. ARG! I came home, convinced that I had written it on my calendar for yesterday and they must have made a mistake ... only to see that it was written on my calendar for today. Perhaps a sign that I am TOO busy lately? LOL
So we went back today. She is down to 29lbs 6oz. The GI isn't thrilled at all with her weight loss. The dietician was out today though, so I have to wait to talk to her about what to do to boost calories.
He was happy that the Miralax is working. We are on one tablespoon daily. He reminded me that you're supposed to put it in at least 4-6 ounces of fluid, but she has never tolerated that much at one time. We put it in her afternoon food mixture - 70 cc's of baby food blend and 100 cc's of pedialyte. It's working, but he told me to be sure and watch her for dehydration.
We are being referred back to feeding therapy, we were supposed to have an evaluation on June 19th. Now that I'm going to the Microcephaly Convention that weekend, I have to reschedule. He said he wants us to do outpatient feeding therapy twice a week for a month or two. Then once she's comfortable with the feeding therapists, he wants her inpatient for intensive feeding therapy. She is able to chew and swallow with no problems. She even enjoys food once you can fight her to get it in her mouth. But she will absolutely not open her mouth for it, and fights you putting it in. It's an oral aversion that is beyond extreme! I have wanted to do the inpatient intensive therapy for years, but he says she's just now ready. I am excited about that!
That was about it for that appointment. We are almost out of school, and it is SO busy around here right now. I am chairing a reading program picnic this Friday for 100 kids at Monkey's school. Guess what? It's supposed to rain that day. A picnic in the park is not much fun in the rain. I am stressing to figure out what to do. I know it will be fine no matter what, but it's going to take a lot of replanning and figuring out new games!
It has been gray and rainy all day. It thundered like crazy last night, from 1:00-2:30am. Our poor old dog Koda, she was scared to death. She was shaking the entire time, whimpering and breathing hard. It was like an anxiety attack in a doggy! Poor thing. I brought her into bed with me and the thunder finally ended. Here's the crazy thing - for 90 minutes it thundered and lighteninged like NUTS. But, no rain! Nuts, huh. :)
.
.
.
.
.
I say that because in my infinite wisdom, I packed up my girl, her equipment, her afternoon feed, her DVD player, her favorite toy, and her lovely nurse and headed to the GI clinic yesterday. Only to be told that our appointment was today. ARG! I came home, convinced that I had written it on my calendar for yesterday and they must have made a mistake ... only to see that it was written on my calendar for today. Perhaps a sign that I am TOO busy lately? LOL
So we went back today. She is down to 29lbs 6oz. The GI isn't thrilled at all with her weight loss. The dietician was out today though, so I have to wait to talk to her about what to do to boost calories.
He was happy that the Miralax is working. We are on one tablespoon daily. He reminded me that you're supposed to put it in at least 4-6 ounces of fluid, but she has never tolerated that much at one time. We put it in her afternoon food mixture - 70 cc's of baby food blend and 100 cc's of pedialyte. It's working, but he told me to be sure and watch her for dehydration.
We are being referred back to feeding therapy, we were supposed to have an evaluation on June 19th. Now that I'm going to the Microcephaly Convention that weekend, I have to reschedule. He said he wants us to do outpatient feeding therapy twice a week for a month or two. Then once she's comfortable with the feeding therapists, he wants her inpatient for intensive feeding therapy. She is able to chew and swallow with no problems. She even enjoys food once you can fight her to get it in her mouth. But she will absolutely not open her mouth for it, and fights you putting it in. It's an oral aversion that is beyond extreme! I have wanted to do the inpatient intensive therapy for years, but he says she's just now ready. I am excited about that!
That was about it for that appointment. We are almost out of school, and it is SO busy around here right now. I am chairing a reading program picnic this Friday for 100 kids at Monkey's school. Guess what? It's supposed to rain that day. A picnic in the park is not much fun in the rain. I am stressing to figure out what to do. I know it will be fine no matter what, but it's going to take a lot of replanning and figuring out new games!
It has been gray and rainy all day. It thundered like crazy last night, from 1:00-2:30am. Our poor old dog Koda, she was scared to death. She was shaking the entire time, whimpering and breathing hard. It was like an anxiety attack in a doggy! Poor thing. I brought her into bed with me and the thunder finally ended. Here's the crazy thing - for 90 minutes it thundered and lighteninged like NUTS. But, no rain! Nuts, huh. :)
Tuesday, June 2, 2009
Guess where Peanut and I get to go!!
I am so excited, we are going to the Foundation for Children with Microcephaly convention! It is being held less than 15 minutes from our home! I cannot wait. I have been talking with a Mom who is involved through email, and am so excited to meet someone with similar circumstances.
The best part is getting to meet Dr. Dobyns and having him go over Peanut's issues with us. She is undiagnosed overall, and I am always looking for answers. Perhaps he could be the key to unlocking the mystery that is my Peanut! :)
I have also been talking with the local Mom about helping as a state representative. How great would it be to get to know so many other people with kiddos like mine!
Are any of you attending this convention? I would love to meet some of my blog friends!!
The best part is getting to meet Dr. Dobyns and having him go over Peanut's issues with us. She is undiagnosed overall, and I am always looking for answers. Perhaps he could be the key to unlocking the mystery that is my Peanut! :)
I have also been talking with the local Mom about helping as a state representative. How great would it be to get to know so many other people with kiddos like mine!
Are any of you attending this convention? I would love to meet some of my blog friends!!
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