Monday, June 29, 2009

More pictures from the convention last week.

I miss all these kiddos that we played with at the convention! I wish there was a huge town that all of us moms with special needs kids could go to and just BE. It was such an amazing experience, and I wish I could do it again and again.
I wish all your Blog Moms lived near us too, I wanna play with you guys also!

Wednesday, June 24, 2009

I feel like I'm gasping for air lately ...

Like I don't have time to take a deep breath and BE. There is so much going on and so much to think about and so much to plan.

First off, the VCUG yesterday was better than in the past. The tech got the catheter in on the first try, which was good because I told her she only got one try and then I was taking over. LOL They filled her bladder with 240ml of fluid. I have never gotten out more than 130ml I believe? She was clearly uncomfortable and quickly started screaming and retching. The good news is that there wasn't any kidney reflux. The bladder held "a good amount" according to the doctor, not too much or too little. He told me that when they opened the end of the catheter, she would urinate and release the pressure that was obviously distressing her. She didn't pee. They poured warm water over her genitals, still no pee. He asked what normally happens during VCUG's. I said "She screams endlessly until you drain her bladder" and he said "Empty her bladder and get her back up in her mommy's arms". Thank goodness for decent doctors! It was obvious that when the bladder got full and irritated, it simply clamped shut and was not going to release urine. The only icky part of the day was that the fluid drained out very pink, when it was put in clear. I haven't seen any other signs of bleeding since then, so I think the bladder was just really irritated with being that full.

Skipping subjects for a minute, I want to type a bit about the incredible convention Peanut and I went to last week. It was AMAZING to be surrounded by parents and children with microcephaly and such SIMILAR disabilities and abilities and personalities as mine!

We met with some top-notch doctors from all around the country. Harvard University, Washington University in St. Louise, and University of Chicago Medical Center. They reviewed all of her MRI films, EEG results, and then did a physical examination.

They explained to me that her microcephaly is not one that has a know genetic cause. There is no name for the type of microcephaly she has. They took DNA samples from her and I to put into some research studies on microcephaly. They did tell me that her forebrain is far more affected than the rear of the brain. They showed me this on the MRI and once they explained it to me, it was very obvious. Also she has hypoplasia of the corpus callosum. It is not missing (ageneisis) but it is very thin.

Then the more important thing they felt needed to be looked into - they are fairly confident she has a spinal issue. They mentioned her constipation and urinary issues getting increasingly worse. She has spasticity and hyperreflexia, more in her right leg than left. She has clonus really bad, but only in her right leg. She also has an upgoing right toe on plantar stimulation. She is totally able to walk in a gait trainer, where she does not have to support her own weight and remain upright on her own. She can get where ever she wants to, and follows direction. She CAN walk, she is just UNABLE to. IF that makes sense, LOL. She knows how, she just can't do it without assistance.

These doctors told me that all the other children they've seen with this specific type of microcephaly are not as disabled as my Peanut. They walk, they do not need catheterizing, they do not have bowel problems. So they feel confident that she has a spinal issue in addition to the microcephaly.

I sent a fax to our urologist today, asking for an MRI of her thoracic and lumbar spine. I want to have this done before we go on to the Mitrofanoff procedure. If the doctors we just saw are right and it is something like tethered cord that is repairable, she may not need to be catheterized! They said that given the right spinal diagnosis and surgery, they feel confident that she will walk.



Could you imagine?? I am trying not to get all my hopes up for this. I am excited for the spinal MRI, but trying not to get TOO excited. I'm prepared (or so I tell myself) for it to find nothing, and to go on and do the Mitrofanoff as planned. I'm prepared for a wheelchair princess to remain gait trainer dependant for walking.

But can you IMAGINE?????

In addition to all of that, this coming Sunday is Monkey's 9th birthday. We are having a Pokemon party in our backyard. Holy cow, that means a LOT of housecleaning and yardword needs to get done in the next three days.

Like I said, I am gasping for air and hoping to get it all done without running out of breath! :)

Tuesday, June 23, 2009

VCUG today

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. :(

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. ;)

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).

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. :)

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!!