Look at my cool spider jammies! They glow in the dark!Friday, August 24, 2007
Bennett
Since everything i've been writing seems to be about Jordan I thought I'd give you all an update of Bennett. He had a difficult time with Jordan in the hospital. He was able to spend lots of time with his buddies Gage and Amelia and a couple days with his cousin too. He defenitely wasn't being himself and had a rough go at things. We are SOOOOO appreciative of our friends being able to help us out with Bennett while I was in the hospital with Jordan. I honestly don't know what I would have done without them!! After we got home yesterday and Rhett was in class I decided it was time to restock the fridge/pantry and try to get back into a normal routine (whatever that is!). Bennett's been in need of some new pj's since half the time he just wears an old t-shirt to bed and a pull up (we still haven't conquered the night time potty training!). So, while we were at Wal-Mart I had Bennett pick out a couple new jammies. Believe it or not, he didn't chose Thomas ones!!! I know, I was really shocked! And the thomas pj's were really cute too. Anyways, here's a couple pics of his favorite of the 2. The other ones had bugs all over them. I'll have to put on some pics once he wears them.
Look at my cool spider jammies! They glow in the dark!
Look at my cool spider jammies! They glow in the dark!
Wedding Bracelets
I'm pretty proud of this =). Here's some pics of my first wedding bracelets. This were ordered by a good friend of my family's. They're made with all Australian Swarovski pearl beads and all sterling silver. She had them custom made for all 5 brides maids, maid of honor, and 1 in white for herself. I should have made one for myself just to remember how pretty they looked =).
Applesause Beards!
Jordan has multiple therapies during the week. One of the therapies she actually enjoys is Occupational Therapy. Right now they're working a little on self feeding with a spoon. Here's some cute pics of Jordan enjoying her applesauce =)
Thursday, August 23, 2007
Fun at the hospital-- not for a weak stomach =)
During the very end of July Jordan started getting sick. After almost a week of her having a fever, being super cranky, and starting to throw up, we took her to the doctor. He did a throat swab and said that it came up positive for strep throat. He put her on an anti biotic called Omnicef and sent us on our way. About 9 days later (the meds only run 10 days) Jordan still had a fever and was still really cranky. We called the Dr's office and asked to talk to a nurse. It was friday afternoon and I knew that there was no way we were going to see the Dr. so I might as well just talk to a nurse and see what she thought. When she called me back it was about 5:30ish. She said that with Jordan's medical history it would be best to take her to the ER at St. Joseph's hospital in Phoenix. That's where all of Jordan's neurosurgeons are. So we take a trip. After waiting and waiting in the ER we finally got a room other that in the waiting area and they started running tests. We found out that Jordan had a Urinary tract infection, strep throat (still!) and also that her ventricles in her brain were HUGE. They were about the size they were before she had her shunt put in. The neurosurgeon came and did what's called a shunt tap. This is where they stick a needle in an area of her shunt that goes into the ventricles and they have this tall pipette on the end of the needle. The Spinal fluid from her brain then shoots up this pipette (it's like a really tall skinny glass/plastic tube) and depending on how high up it goes they'll know what the pressure is in her brain. Needless to say, it was REALLY high pressure. The neurosurgeon proceeds to tell us that Jordan will have to have surgery the next day (Sunday) and they admit her into the PICU (pediatric intensive care unit) so they can monitor her very closely. They also adjusted Jordan's shunt level (it has a dial on it to open it up more so more fluid can drain on its own). Long story short, the adjusting the shunt level took care of the problem. They did another CT scan the next day and her head looked fine. She just needed her shunt to drain more fluid. It was set at a number that allows only a small amount of fluid to drain. So, Sunday, instead of having surgery we got to go home.
The next weekend (this last weekend). Jordan was still feverish throughout the week and was extremely cranky. I was contemplating taking her to the ER again because her eyes were jumping all over the place like a bouncy ball out of control. This is typical of someone having shunt issues (yes- this again!). Rhett told me not to freak out and that we should wait longer and see what happens. Jordan went down for a nap and that was nice not to have to hear the whining. Then when she woke up she had a spell of being not responsive to us. We were clapping our hands, snapping our fingers, yelling her name, all right infront of her face. It took her about 30 seconds to react to any of it. By this point Rhett and I are both freaking out and decide that it's time to take her into the emergency room again. So this time they find out that her ventricles are over drained (way to small) and they have to adjust her shunt level again. This doesn't expain the staring spell or the fevers. They again admit her but just to the regular pediatric unit this time. They stick her on a 24 hour EEG machine to monitor her brain waves and to see if she's possibly having staring seizures. They didn't see any so that's good. And the fevers? Still don't know. So, they keep us. She had a fever on Monday so they were actually able to see that I wasn't just some crazy mother making them up so I was relieved about that (but i'm sure Jordan wasn't feeling good about it). So in the end, after 6 days of running tests, they finally come up that she has some small amount of bacteria in her urine still and it's a really nasty bug that you usually just find in poop and that maybe this is what's causing it. So we're put on more antibiotics and sent home. That leaves us at today!! Whew!!!! The end.
Here's Jordan in her turban. This is when she's hooked up the the EEG machine. Under her cute hat here is about 30 wires glued to her head. At her age she'd for sure yank them out so they had to do their best to keep them on as long as possible. She figured out how to get the gause off real quick.
Here's Jordan again playing with the weeble wobble toy Grammy Lindsey brought up for her to play with. This is her absolute favorite toy to play with at Grammy's house and Jordan was thrilled when they brought it up for her!! Thanks Grammy! You can see that she's propped up by lots of pillows and blankets and trying her best to stay sitting up to play =)
The next weekend (this last weekend). Jordan was still feverish throughout the week and was extremely cranky. I was contemplating taking her to the ER again because her eyes were jumping all over the place like a bouncy ball out of control. This is typical of someone having shunt issues (yes- this again!). Rhett told me not to freak out and that we should wait longer and see what happens. Jordan went down for a nap and that was nice not to have to hear the whining. Then when she woke up she had a spell of being not responsive to us. We were clapping our hands, snapping our fingers, yelling her name, all right infront of her face. It took her about 30 seconds to react to any of it. By this point Rhett and I are both freaking out and decide that it's time to take her into the emergency room again. So this time they find out that her ventricles are over drained (way to small) and they have to adjust her shunt level again. This doesn't expain the staring spell or the fevers. They again admit her but just to the regular pediatric unit this time. They stick her on a 24 hour EEG machine to monitor her brain waves and to see if she's possibly having staring seizures. They didn't see any so that's good. And the fevers? Still don't know. So, they keep us. She had a fever on Monday so they were actually able to see that I wasn't just some crazy mother making them up so I was relieved about that (but i'm sure Jordan wasn't feeling good about it). So in the end, after 6 days of running tests, they finally come up that she has some small amount of bacteria in her urine still and it's a really nasty bug that you usually just find in poop and that maybe this is what's causing it. So we're put on more antibiotics and sent home. That leaves us at today!! Whew!!!! The end.
Here's Jordan in her turban. This is when she's hooked up the the EEG machine. Under her cute hat here is about 30 wires glued to her head. At her age she'd for sure yank them out so they had to do their best to keep them on as long as possible. She figured out how to get the gause off real quick.Here's Jordan again playing with the weeble wobble toy Grammy Lindsey brought up for her to play with. This is her absolute favorite toy to play with at Grammy's house and Jordan was thrilled when they brought it up for her!! Thanks Grammy! You can see that she's propped up by lots of pillows and blankets and trying her best to stay sitting up to play =)
Tuesday, August 21, 2007
Trips to the hospital
Well, I kind of have a good excuse for not updating the blog lately. Jordan's on her 2nd round of hospital stays right now. I'll give you a big update later but for now, she's doing okay. The doctors can't figure out why she keeps getting fevers. Last week we were in the PICU (Pediatric Intensive Care Unit) for 2 days I think and now we've been in the regular Pediatric Unit (not intensive care) Since Saturday afternoon. Keep her in your prayers. We think everything will be fine but we want to know what's going on =). Pray for the Doctors also so they can figure this out. I'll update you all as soon as we know what's going on.
Sunday, August 5, 2007
We made the leap!
We finally made the leap and became bloggers! I have that is. Rhett will find out when he gets home from work =). Hopefully I'll be diligent with this blog and we'll use it to keep everyone updated on our family and what's going on. Sometime we forget to update everyone on important information when it gets really hectic.
An update on what we're all doing right now...
Rhett- Rhett is working full time as a teacher to an online school. He's a teacher/advisor and I think once the school year gets going he'll probably enjoy it. He's also going to school at night so he can pursue either Medical Physics or Pharmacy. We're hoping the Medical Physics one will work out since this is still somewhat in the field he pursued to begin with (Physics) but we also will have the Pharmacy as an option just kind of as a back up. We figured it'd be a career that would allow us to be near hospitals we need to be at and it will make a decent living for us (for Jordan's needs).
Traci- I started my own little business and it's just now starting to pick up. You can visit my site at www.babysoelegant.com. Jordan and I were in a neighborhood newspaper that came out in July. If you'd like to read it you can go to www.nearbynews.com and go to the Groves Report section and go to the July issue. I think it'll still be there =). Other than trying to keep myself busy with my company I stay pretty busy with the kids here at home. In church I work with the 10 and 11 year old girls with Activity Days. My companion with this is a gal that lives just 2 doors down from me and she has a little girl that's not that much older than Bennett so that makes it lots of fun.
Bennett- Bennett's now 3 years old and we're almost done potty training! I'm so excited. I honestly wondered if the day would ever come. He's finally caught on and is very excited to come tell you what he's done in the toilet every time =). I guess most boys are proud of what their bodies can do =). He LOVES his sister and just loves paying with her so much. His other love (his first love) is Thomas the train. He has multiple train sets and could play with them all day long if we let him and if he could set them all up by himself. He's full of energy and is loving the summer and all the water he gets to play in.
Jordan- Jordan is a hard one to sum up in a short paragraph =). She's 22 months now and for the most part is pretty healthy given her condition. The doctors are actually quite surprised that she's been so healthy. The strep throat that she's getting over right now is nothing compared to what she's been through. Let's see if I can sum up the surgeries quickly... When she was 1 day old she had her back repaired. When she was 3 months old she had her Shunt (a shunt drains your cerebral spinal fluid from the middle of your brain down into your stomach) put in. When she was 4 months old she had her Shunt revised (it wasn't working right). When she was 13 months old she had surgery on the back of her neck/brain to loosen up her spinal cord and make more room for her brain to be in her neck (I know that sounds funny. You'll have to google "Chiari malformation"). When she was 17 months old she had a vesicostomy (a surgery where they pretty much open your bladder to the outside of your stomach so your bladder can drain freely. Again, you can look it up on google for more explanation). Then when she was 18 months she had tubes put in her ears (finally a simple surgery!!). That pretty much sums those up. She gets 4-5 therapies a week. Most of the therapists come to our home so that makes it nice. The only not so nice part is that no matter who rings our door bell she thinks it's a therapist and starts freaking out =). It's kind of humorous. Jordan loves to eat and she's a healthy eater for the most part which is good. She loves to give hugs and kisses and she's crazy about her Grammy Lindsey and Grandma McBride. She knows about 10 different words in sign language which has helped with communication tremendously. She should be able to talk just fine but we think her language is just a little delayed like everything else is.
An update on what we're all doing right now...
Rhett- Rhett is working full time as a teacher to an online school. He's a teacher/advisor and I think once the school year gets going he'll probably enjoy it. He's also going to school at night so he can pursue either Medical Physics or Pharmacy. We're hoping the Medical Physics one will work out since this is still somewhat in the field he pursued to begin with (Physics) but we also will have the Pharmacy as an option just kind of as a back up. We figured it'd be a career that would allow us to be near hospitals we need to be at and it will make a decent living for us (for Jordan's needs).
Traci- I started my own little business and it's just now starting to pick up. You can visit my site at www.babysoelegant.com. Jordan and I were in a neighborhood newspaper that came out in July. If you'd like to read it you can go to www.nearbynews.com and go to the Groves Report section and go to the July issue. I think it'll still be there =). Other than trying to keep myself busy with my company I stay pretty busy with the kids here at home. In church I work with the 10 and 11 year old girls with Activity Days. My companion with this is a gal that lives just 2 doors down from me and she has a little girl that's not that much older than Bennett so that makes it lots of fun.
Bennett- Bennett's now 3 years old and we're almost done potty training! I'm so excited. I honestly wondered if the day would ever come. He's finally caught on and is very excited to come tell you what he's done in the toilet every time =). I guess most boys are proud of what their bodies can do =). He LOVES his sister and just loves paying with her so much. His other love (his first love) is Thomas the train. He has multiple train sets and could play with them all day long if we let him and if he could set them all up by himself. He's full of energy and is loving the summer and all the water he gets to play in.
Jordan- Jordan is a hard one to sum up in a short paragraph =). She's 22 months now and for the most part is pretty healthy given her condition. The doctors are actually quite surprised that she's been so healthy. The strep throat that she's getting over right now is nothing compared to what she's been through. Let's see if I can sum up the surgeries quickly... When she was 1 day old she had her back repaired. When she was 3 months old she had her Shunt (a shunt drains your cerebral spinal fluid from the middle of your brain down into your stomach) put in. When she was 4 months old she had her Shunt revised (it wasn't working right). When she was 13 months old she had surgery on the back of her neck/brain to loosen up her spinal cord and make more room for her brain to be in her neck (I know that sounds funny. You'll have to google "Chiari malformation"). When she was 17 months old she had a vesicostomy (a surgery where they pretty much open your bladder to the outside of your stomach so your bladder can drain freely. Again, you can look it up on google for more explanation). Then when she was 18 months she had tubes put in her ears (finally a simple surgery!!). That pretty much sums those up. She gets 4-5 therapies a week. Most of the therapists come to our home so that makes it nice. The only not so nice part is that no matter who rings our door bell she thinks it's a therapist and starts freaking out =). It's kind of humorous. Jordan loves to eat and she's a healthy eater for the most part which is good. She loves to give hugs and kisses and she's crazy about her Grammy Lindsey and Grandma McBride. She knows about 10 different words in sign language which has helped with communication tremendously. She should be able to talk just fine but we think her language is just a little delayed like everything else is.
Well, that's about all I'll post for now. Sorry to chat your ear off =). Hope you enjoy the site. I'll try to get some pics on here if I can figure it out. Enjoy!
Here's Bennett holding a starfish at SeaWorld in July
Rhett and Jordan riding the train in May (I think)
Me and Bennett at the Shark Exibit at Sea World (not the greatest pic of me but when you're usually the one taking pics there aren't a lot to chose from =)
Jordan at SeaWorld in her Wheel Chair (she's wearing the same clothes as in the other pic! I promise, she has more that just this outfit!)
Here's Bennett holding a starfish at SeaWorld in July
Rhett and Jordan riding the train in May (I think)
Me and Bennett at the Shark Exibit at Sea World (not the greatest pic of me but when you're usually the one taking pics there aren't a lot to chose from =)
Jordan at SeaWorld in her Wheel Chair (she's wearing the same clothes as in the other pic! I promise, she has more that just this outfit!)Feel free to leave lots of comments!
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