More free kitties!

We've got a new litter of kittens to give away. These ones are so adorable =). I guess they always are! There's 5 of them. They're great with kids and really like to roam around. They're even starting to purr for us which is amazing since they are not happy campers when they get taken away from their mom, which was about a week and a half ago. They're eating hard food and are litter box trained. Let me know if you want one or want to come look at them! I think they're all male...

Delayed update

Some cute pics before I get into the nitty gritty!Jordan's so silly! She left this on her head for like a half hour =)
Bennett looks kind of dopey!

Jordan during an OT session. She LOVES this mirror! She looked in it and laughed at the girl in the mirror for quite a while.

I'm always apprehensive about posting updates about Jordan. I like to keep everyone updated but I really feel like there are more sick kids out there and I feel I'm a whiner sometimes and I'm not wanting to draw attention to us, hence the reason this post is quite a while after Jordan's neurosurgeon appointment.

We met with Dr. Rekate (Jordan's neurosurgeon) probably 2 weeks ago or so (I don't keep track of time anymore...). He didn't really have a whole lot more information than last time but this time Rhett was able to come so that was nice. I was very impressed to see my list of about 20 questions I had emailed the Dr. neatly paper clipped on the top of Jordan's chart. He' really wants to find answers to all our questions which is such a relief. He was honest upfront- he doesn't have a lot of answers. He did talk to a neuroradiologist about Jordan's scans and understands the anatomy a little better and they don't think the cysts are in her spinal cord, but just basically all around them. And I didn't ask him this question but in my estimation and from us looking at the scans again with the Doctor, I'm estimating around 100 cysts or so. I could be way off but that tells you the amount of damage that's done to her spine. These cysts are EVERYWHERE. It's really a shocker. He showed us on the scans where she had her back closure and that it was located in her upper Sacral region of her spine. He said that she should have hip flexion, knee flexion, and should really be doing a lot more than she is. He's really thinking now that the cysts came from the mixing of spinal fluid with the amniotic fluid in the womb. We mentioned to him that Jordan didn't have a "sack" around her lesion in the womb. That's why they didn't know about the spina bifida until she was born. This is probably the reason so much fluid was able to mix. There wasn't any barrier. Basically there was a whole in her spine that freely allowed the amniotic fluid to go wherever it wanted. He also showed us that there are cysts as far up as the T4 level. If you look at that diagram I posted a few posts back, you can see what those nerves are attached to. You can see where this is going...

One of our 20 questions was about life expectancy. The Dr. brought this question up to us. He had us lay Jordan down on the exam table (thankfully she had fallen asleep...) so he could watch her breath. He watched her breath for a good 1-2 minutes. He said that the nerves that affect your diaphragm are up in your neck. She doesn't have any problems with those, thank goodness. He said that there are nerves that go down your Thorasic level of your spine affect how your ribcage helps you breath (he explained it really well but I haven't been able to find the exact words for it... hopefully it makes sense...) or how the muscles in your ribcage help expand/contract to help you breath. Dr. Rekate didn't see these working. I guess when you're older (not a toddler) your body obviously needs more oxygen. The diaphragm can't provide this alone. So as far as life expectancy goes, he says this is a definite concern. He's happy that Jordan has good oxygen levels right now but said that he'd like us to see a Pulmonologist to look at that a little bit more in depth.

This was the majority of the new information we found out at our appointment. So really there wasn't anything new, just more information about what could be looming in our future. He got our permission to pass around Jordan's scans to get more opinions on what to do. He said that at first he thought about going into her back and popping each of these cysts and see what happens but then he thought also about the weak condition of her spine, and he would have to remove layers of muscle and tissue that's basically holding her back together to get to these cysts. He's really worried that it might be a big mistake tampering with her back structure at all. The risks are definitely outwaying the possible, but not likely, good that might come from it.

Fun Pictures

More Easter Pics!

The Easter Bunny was hungry!

His feet were pretty muddy too!

Bennett did a great job coloring eggs

Easter Morning

Where the Bunny hid Bennett's basket

"The Easter Bunny jumped way high up there!!"- what Bennett said when he saw his basket

Bennett LOVES this. Anything that crashes = heaven to him =)

And the Easter clothes (actually bought for my sisters wedding but she let us use them early!)

This was Bennett's first time wearing a tie and he wasn't happy about it! By the end of church everything was honky dory!

And here's a fun little video of Jordan at the Easter egg hunt. Short and sweet =)

More on Jordan

We're excited to meet with Jordan's Neurosurgeon this week. We were also excited about being healthy and happy and doing well for now. Did you catch the "were" in there?! Thursday night Jordan fell out of her high chair. I didn't secure her tray on right and of course she loves to lean on that tray! So literally 5 seconds after walking away from her, down she goes. Her forehead hit our Mexican tile flooring with a thunk. The rest of her face hit her tray which she landed, for the most part, right on top of- except her forehead that is. So, with a bloody nose and a quickly growing baseball size (this was no "goose egg!") bump on her head, Rhett and I took her straight to St. Joseph's. It's amazing how well a car runs when it's speeding when it doesn't even work correctly at the speed limit! The took her back almost right away which was a blessing. The CT showed that she fractured her skull. They put her in the PICU overnight. We got to our room around 2, got to sleep around 3, had another CT done at 4, and then some neck xrays done about 5. It was a long night! Both the CT's showed that there was just bleeding between her skull and her skin, and no bleeding in her brain. The xrays showed that her neck looked great. We're so lucky. Thinking back on the fall, she should have a major concussion, broken nose, and all her teeth busted up. We're really blessed. She was released from the hospital the next day around noon. She's had a headache a lot since then (who wouldn't!) but is doing pretty well. Hopefully it'll be a while until we visit them again. =)

Going Private...

I'm afraid I've been freaked out by comments made by people I have NO clue who they are and they don't even speak my language so I've decided to make my blog private. I really don't care who visits the blog as long as they're decent human beings. Like I've said before, I LOVE to blog surf and probably will continue, but I feel somewhat that my children's safety could be at stake, and I know I'm probably over reacting but it's better to be safe than sorry. So with that said, please send me your email address to tracim1@juno.com or leave it as a comment on here so you can be invited to view our blog. And after it's private and someone you know wants to look at our blog, just have them send me their email or you can send me their email. I don't mind that at all. I really hate that we live in a world where I have to be afraid of who's looking at pictures of my kids!

Easter

Here's some Easter pics for your viewing pleasure. I'll try to post them real quick but my cut off time is midnight (25 minutes) so I might have to post more tomorrow!

These are pictures of the Easter Egg hunt we went to the day before Easter. Since we moved here (in 2005) we've been going to Heather and Justin's (Rhett's sister and her hubby) neighborhood Easter egg hunt. It's a blast! It's only for kids 8 and younger. They let the kids 3 and younger go first (Bennett barely made the cut off!). Then they let all the other kids go. But there are so many eggs that everyone ends up filling their baskets and then some! Bennett filled his basket and then helped Jordan fill hers. There was this little boy who was probably 5 who was going to town! He had a huge basket overflowing with eggs and then he started stuffing his cargo pants with as many eggs as his pockets would hold. It was hilarious! These pictures are just 1/4 or less of how big the retention basin is, and it's covered with eggs.



In these couple pictures Bennett and Jordan are waiting for the hunt to begin. So patient =). The know the candy isn't far away!


Some fun "hunt in progress" pics.



I LOVE the running pictures!


Peek - a -

BOO!
Jordan LOVES her Grammy!

Gotta love Uncle Justin! He gives me candy!

So I managed 15 pictures in a half hour! Not bad. I'll try to post round 2 tomorrow. Those will have more pictures from Easter Sunday and not the hunt leading up to it =). And maybe some video too. That's always fun.

Trying to get on the ball!!

I'm really going to try hard to post more =). I'm such a big blog reader. I love trying to find old friends blogs and I'll search for hours! It definitely doesn't help me sleep! I'm going to set a goal for myself to be in bed by 11pm every night. That'll be hard but I'm sure I'll get the hang of it. No more staying up reading blogs until 1am =).

I have lots of pics to post to catch up but I know I'll feel better when I do. I tend to not organize my pictures until I have what I want posted online. So here we go!!


Jordan Update:

We found out last week that Jordan has a fracture in her leg. During one of her physical therapy sessions we were trying to get her fit into a new piece of equipment she recently received called a "stander". It's suppose to let her legs get some weight bearing feeling and hopefully help with her leg muscles. If nothing else, she'd be standing upright with a tray in front of her to play more like a normal child. We could NOT get her into it! With her foot and hip in the right place her knee would turn outward. Strange. So we got her out of it and we were feeling her leg and noticed that there was sort of a dent underneath her knee. We weren't really sure what it was but just knew that the anatomy wasn't quite right. So I got her an appointment with her orthopedic guy at her clinic in Phoenix to get his opinion. He took an xray of her knee and also of her hips. He saw that her right hip is dislocated (pretty common for SB kids) and one of the bones has a fracture in her left leg, right underneath her knee. He said that for a typical kid they'd be in a TON of pain and they'd have to cast the leg. But for Jordan, she doesn't feel anything. And with her not moving her leg, they didn't need to cast it. The xrays showed that the bone was already healing. He also told us that for some reason the tendons in the back of the knee get really thick. They'll end up being 3 times thicker than adult tendons. They're not really sure why this happens. The tendon actually gets so strong that it's stronger than the bone. So with Jordan, we've noticed that her knee and leg has gotten really tight. I'll post some pics of her leg. It's constantly bent at the knee and doesn't ever go completely straight. So, we've been stretching it out like we've been told to do by multiple people/doctors. This is where the fracture comes into play. Her tendons are stronger than the bone. We try to stretch the tendon but instead the bone fractures. Great!!! So basically we just can't stretch it anymore. Here's a picture that show's her knee. I don't remember when I took this though =). Look at her left knee and how it's bent.

Jordan goes to meet with her neurosurgeon again a week from Wednesday, on the 16th I think. He said that he talked to a neuroradiologist and now understands better the anatomy going on in Jordan's back/spine but he still doesn't know what happened or why things are the way they are. So we'll see what he says when we talk to him.

Here's Bennett's "green bike" from Santa. He was so excited Christmas morning!

Jordan got this little "car" from Grandma McBride. She LOVES it! She gets to sit up so big like a big girl. She still plays with it every day =)


Bennett is so creative! I have to help him with the second T at the end since our letters only came with 1. He can do the rest though!

And he's pretty creative with his blocks too! If you're lacking in the creative zone today, it's a truck.

Rhett got a big bird kite from my parents as part of his birthday present back in Feb. It was fun to try it out but we figured out really fast that we don't know how to fly a kite. Plus, it seems whenever it's windy, it's really just in spurts. It's hard to keep a kite up for a long time with spurty wind. That's not a word. Oh well =)

There's my blogging for the day. I've spent a couple hours going through my pictures and after narrowing it down from over 1,000 to about 60 or so, this is what I came up with! I'm saving my pictures from Easter and on until tomorrow. Hopefully tomorrow! Bennett has preschool, Jordan has Speech Therapy for 2 hours and Physical therapy for 1 hour, Bennett has a birthday party, and Jordan has a doctors appointment in Phoenix with her gastroenterologist (or however you spell it!). I promise I'll try to make time to post more pics. I'm determined to catch up!