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Friday, March 30, 2012 11:07 PM CDT

Monday at 9 we check into the imaging center for Caden's next MRI. I received a phone call this week that there is a new area of concern in the previous images of the orbits and with things changing they have decided it will be best for Caden to do another full scan. Brain, orbits, and full spine with and without contrast is what's on the orders. Caden is in full blown scanxiety and is having multiple meltdowns daily. I made sure the nurse made several notes for them to give him Versed as he walks in the front door. I'm not sure if I mentioned this last time but in december he threw up in the car as we pulled into the parking lot because he was so anxious and stressed. Please pray for him to have peace and know that he'll be okay. You would think after more anesthesia requiring procedures than I could count it would be a breeze for him but I think at this point he's never fully sure what's going to be "on" him when he wakes up and what he'll feel like after. Please also pray the brainstem glioma is stable and nothing else has changed or grown in the past 3 months.


Also, Caden was supposed to have a growth hormone test next month. It has now been postponed indefinitely. It is a very difficult, long procedure to find out if he's growth hormone deficient and if that's why he's not growing like he should. Well, with all the changes going on with his brain lesions & the glioma, the endocrinologist took this case to his "group". It was decided that it would not be safe for Caden to receive growth hormones if he ends up needing them so we don't want to put him through a difficult procedure yet when it won't really help him. Please pray Caden continues at least a small growth pattern over the next few months, just a steady growth would keep him healthy and take some concern off of me and his doctors. Another addition to this problem, Caden can't be treated for any of his behavioral problems with medication until we get his growth issues going in a positive direction. It's a whole lot of problems all stacking on top of each other right now. :-/ One day at a time is all we can give it right now but your prayers in all these areas are greatly coveted!

Thanks for checking in on my buddy! I am hoping to update this page a bit more very soon now that he's such a "big" boy. ;) Feel free to leave him a message, I always read them to him and they always make him smile. Thanks for the prayers too! <3

Thursday, January 5, 2012 7:43 PM CST

Well...we have news. It's definitely not good but it's also not horribly bad. It seems that the increase in behavior problems & headaches are accurately explained by the changes. A few years back one of caden's MRIs showed a brainstem lesion. That lesion has now grown and become more dense and has developed into a tumor. The good is that in two years the growth has been very small, the bad is that any growth will cause issues and can be dangerous. So for now we do all there is to do with NF, "hurry up and wait". Caden will scan again in March. He is mad and scared and acting out at school just over the MRI. He knows about the tumor and knows it's bad but doesn't know much more. We will get there I'm sure.


So where do we go from here...if the next scan is stable then we scan again in another 3 months. If the scan is.......then we go to neuro-oncology and depending on how bad it is we would scan in either 6 weeks or 3 months again. There really isn't a whole lot left to say, it could be worse but of course it isn't what we ever would have chosen for our Buddy.
Proverbs 21:19 (or maybe it's 19:21, or something - it's in Proverbs) "Many are the plans in a mans heart but it is the Lords purpose that prevails"


With love and hope,

Kara and the rest of the fam

Wednesday, December 14, 2011 1:26 PM CST

MRI on 12/6/11 showed changes. Doctors will not confirm over the phone any details. We do not know what type of mass, where, or the size. We have an appointment to review the reports and the images on 1/5/12. Another MRI has been scheduled to be done in 3 months to look for additional growth and changes in this new mass. We are praying for a favorable outcome for our sweet Buddy. (and also to win the lottery to pay for all this) Thanks for the love and prayers and support. I don't know what we'd do without our friends and family!

With great sadness and continued hope,

Kara

Wednesday, June 29, 2011 9:09 AM CDT

Riding a bike...

So Caden is 8.5, he can't ride a bike. I don't mean without training wheels. There has been countless hours just working on him pedaling the bike. He is finally getting it, but it still takes about 30 minutes just to get a few blocks down the street. James and I don't ride with him, we walk along side him to help push him along. I want him to enjoy riding a bike. I am worried he's getting closer and closer to the point of being embarrassed by his bike skills (or lack of) and will completely give up trying. This is where our lives concerning this matter may have just changed.

All across America there are Down Syndrome groups, these groups have picked up on these amazing camps and host them through the year. It's called Lose The Training Wheels. The child goes for 2 hrs a day for a week, and they have an 80% success rate. I am elated and tear up at the thought of Caden not only being able to ride his bike, but be able to ride without training wheels. It is a costly camp so I'm praying for two things to happen:
1. That a space will be available to Caden, preferably for the Arlington camp, but if not at the Dallas camp
2. The money that it will cost not be a financial burden for our family and that God will provide it to us.

There are Lose The Training Wheels Camps everywhere, check out your area if your child could use some help. If you can't use these services consider giving to a child who could, not just Caden, any child, there are so many special needs children who struggle with learning to ride a bike...



On another note, a quick update -

Caden is having a great summer, he'll be in 3rd grade next year. He is ridiculously smart and an incredible reader. He has gained an amazing 6 pounds in the last year and has finally reached 50 pounds. He is still having some problems with speech, behavior, stomach stuff, & now a new issue (pertaining to the bathroom). Overall he has had a healthy year and everything remains about the same. He has upcoming appointments with genetics, opthamology, neurology, and orthopedics - we expect and believe that everything will be stable and the doctors will see no major changes from the last appts. So far Caden still remains extremely blessed in that his NF has yet to create any major medical crises for him. The day to day problems are still tough, but I'll take that over the tumors, cancer, & amputations that so many of our friends are living with. We pray everyday that Caden never has to face anything bigger than the things he's already overcome and continues to fight through. Thanks for checking in on my boy. Feel free to email me if you want an update more often than I'm giving them. ;)

With love,

The Trimbles - James, Kara, Caden, & Shayne

Thursday, July 29, 2010 9:44 PM CDT

So I'm exhausted, I have a headache, and I have 8 million things to do; so I will make this quick. :)

EXCELLENT NEWS!!! And I mean insanely excellent. Caden's orthopedic exams have been moved to every TWO YEARS!!! We were told at the beginning that if we got lucky some day we might move to yearly, and now it's every two years! I just can't wrap my mind around the fact that Caden will be 9 before his next xrays! Unbelievable.

The reason is this, his union in his leg is still solid and his bone has even widened a bit. The added width has caused his ankle to be a little more displaced but that is still yet to be dealt with. They're now saying if all continues to go well he won't have his next surgery until he's a teen. Crazy!


The xrays are still freaky to look at with all hardware in his leg, but the sight of the solid bone is breathtaking :). Caden did excellently as usual, after your 105th xray you kind of accept them like brushing your teeth. ;)

And, sweet baby sister Shayne is quickly on her way to her first birthday! Caden is loving helping me plan her party & pick out all the fun stuff. She's also quickly on her way to trouble as she gets faster, more mobile, stays just as stubborn, and if possible even sassier. :) The constant attention from everybody doesn't help any. I can't help but dress her so preciously!!! And the bows!!! <3 Everybody always asks me where I get them, one of my favorite places is Mother Goose Collections, she's got a webpage (.com) and a fb page. Right now I'm entering a drawing for a gift card for her items! There's a blog called 22yearoldhousewife.blogspot.com who's doing a great giveaway & has a great blog, GO CHECK IT OUT! :)

Well, Caden sees endocrinology in a little over a week, then sister's birthday, & then Caden starts 2nd grade. Oh my!!! Leave us a note to let us know you've been here, PLEASE!


With love & gratefulness, Kara plus 3

Saturday, July 24, 2010 11:17 PM CDT

Well, we've got a little great news! Caden's opthamology appt went excellently! His vision is perfect & his optic nerves are healthy and normal. We literally could not ask for anything more! And if that wasn't enough, Caden was so good!!! This was the first time that he not only didn't cry, but we didn't even have to hold him down! A-MA-ZING.

We went to Great Wolf Lodge in Grapevine last week! It was an awesome little getaway with another family from James' fire department. The kids all got along wonderfully and we all had a great time. Even sweet baby Shayne loved every minute of it and was a perfect little vacationer! We will definitely do that again, so close to home and so much fun. :-)


Summer is speeding by way too fast! Last year I would have given anything for summer to be over fast (pregnancy with baby girl was miserable). This year I have so much going on & so much I want to do, the days are over before I know it. I do not like this. My baby girl will be 1 in just a few short weeks, she has taken her first steps and is half mountain goat. ;) Caden will start 2nd grade in just a month, I'm NOT ready for ANY of this. :-/


Caden has orthopedics at Texas Scottish Rite Hospital this Wednesday! It's one of the few appts that really make me very nervous. That darn leg of Caden's, you just never know. I'm so amazed by all he does & how he takes everything in "stride". Just tonight I watched Caden play tag with a bunch of kids, all his age or younger. He couldn't keep up with a single one of them, his gait is so awkward when he runs, & it almost looks painful. And yet, there's Caden - running, smiling, and yelling just like the rest of them, he knows his limitations and has learned to make up for most of them in other ways. Anyway, back to the appt this week. We go very EARLY to xray and meet with his doctors, nurses, & surgeon. I'm not sure what to expect. Caden has been having weird feelings, discomfort, and even a little pain in his "bad" leg. I want answers & solutions for him, but am worried over what they might be. My main prayer is that his leg bone is still solid, intact, no new breaks, no re-fractures, and maybe even a little more solid, stronger, & thicker. Big wishes, but a BIGGER GOD!!! Will try and update after our appt with what was said...

Love, hugs, and blessings - The Trimbles <3

Sunday, June 13, 2010 10:24 PM CDT

Hello to all of Buddy's loyal and loving "fans"! ;) summer has started off wonderfully for us. Caden had an incredible 1st grade year, will not even have to go for the school's jumpstart program before the school year starts this year. His reading skills are far above what's required & he got well caught up in math with just a few months of extra help. We loved his teacher & really appreciated all the extra work she put into giving Caden a good year. His school is really a great one and everybody is very supportive of Caden and all the students. I pray this next year goes just as well.

Caden is loving the summer break and all the playtime. It is such a blessing to live so close to so many friends, both his and mine :-). We spend lots of time every week having "playdates" and just hanging put with friends. It's a very happy way to be! We spend LARGE amounts of time swimming, Caden still is just happy as can be in the water. His swim skills are slowly improving and I'm hoping before fall we can get him on a local swim team.

We pushed our yearly appts back a month this year so he wouldn't have to miss school for them. I hate him spending so much summer in doctors offices but it's getting harder for him to miss school. We have at least 6 appts that will be scheduled for the next 2 months. A few of them will include some major tests, but I'm not too worried - YET. The only concern we have right now is his frequent complaint about weird feelings, pain, & numbness in his "bad foot & ankle". Most people don't even notice his deformity but watching him walk around the pool has been a little heart-wrenching. His deformity appears to be changing and I really don't know if it's because of his gained height or internal changes (GULP). I guess we will find out soon enough!

I have to admit I'm slightly jealous of my children! Apparently neither of them can gain weight!!! So far all tests, on both of them, have come back with "no significant findings". Shayne is developing perfectly & is happy & eats more than Caden so for now we're going to leave her alone and just give her some time :-). If only Caden were so lucky. He is going to GI to find out if his size and eating issues are related to reflux or his ADHD meds or WHAT! He seriously eats less than most toddlers! I'm just glad he eats very healthy and isn't very picky!

I'll update again after we have a few appts and have any more info! If you aren't already, you can friend me on fb! I'm ALWAYS ALWAYS ALWAYS updating there ;D! Have a happy safe summer everybody!!!



In love and hope,

Kara and the rest - J, C, S, & all the animals :-)

Sunday, April 18, 2010 9:57 PM CDT

Hello all! We've had a crazy past few weeks! What am I talking about?! Life around here is not only ALWAYS crazy, it's INSANE!!! We are still all absolutely in love with the baby girl & there has yet to be any talk of sending her back ;). Caden is very protective of her & is positive he knows exactly what she needs & wants at all times. I love their love, it's all I could have asked for & more than I could have imagined and so much more!

Caden is still doing really well in school. We are so happy with his teacher & so pleased with all the school has done to assure this is a better year. With that said, medically we're on another new journey. We have seen a endocrinologist now to assess Caden's height & size issues. We are still waiting on the lab results to find out if we find any abnormalities in his endocrine system. Who knows where we'll go from there. We are also in the process of getting into GI. It is being said that Caden has Cyclic Vomiting Syndrom. After looking into CVS further it fits well into the symptoms we've seen over the past 3 years that have had no explanation. We are on a migraine study & are trying to rule a few other things out first, but it's looking like it's CVS for sure. Hopefully GI can help us with both this issue as well as Caden's reflux & appettite issues.

Sorry for any weird typing stuff up there ^ (my iPhone is not ideal for updating web pages)!

Caden is also sharing doctors with his sister now :-/. Shayne is not doing real well herself right now. She has gone from not gaining weight to now losing weight. She was 8 months old yesterday & weighed in at 12 lbs 11 oz. That puts her way under the chart, and set her at a huge drop, which earned her a failure to thrive diagnosis. Her urine tests showed that she likely has a metabolic disorder. We will head in to her PCP tomorrow for a follow up & more tests & he'll tell us where to go from there! Ha! He'll tell us! We're headed to endo & GI!!! I've rode this bus a few times! LOL! Seriously, please pray for Shayne. We need to get her back to health soon & figure out what is going on in that precious little body!

Thanks friends! Love all of you & thanks for checking in on us. We're still here, just not as often ;).


<3, Kara T & the family

Friday, December 25, 2009 9:45 PM CST

Merry christmas! we are still alive and well! we are very very busy with life and a baby sister! Shayne Madison Trimble was born August 17!!! she is an absolute delight and we ALL love her very much. caden is an incredible big brother and truly loves his sister. he is also having an incredible year at school and is truly excelling and improving every day! I don't update much because we still don't have a home computer and it's very hard to update from my iphone! His overall health is excellent and his behavior and delays are on a even level right now. we have our day to day struggles, but who doesn't?! that's all i got for now, i wanna get back to some family and friend time. Hopefully I'll update again much sooner! Or you can find me on facebook, I'm there all the time :).


love and thanks, The Trimble family

Tuesday, August 11, 2009 8:31 AM CDT

Caden had his MRI on Friday. He was well behaved & very charming for all the nurses & doctors while we were in prep. He took his Mumble (Happy Feet penguin) with him & Mumble got some special treatment, which he loved. When it came to be time, things got ugly! They went straight for the mask & tried to skip the sedative. That was a very bad plan & won't happen again. He screamed & cried himself to sleep, the gas took a lot longer to knock him out because he was fighting it so hard. He even ripped off his chest leads in the process! It was very hard to watch. He's never reacted like that before. He did fine during the actual scans & came out of sedation very easily & fairly quickly. It only took him about five minutes to find his humor & only three to ask for his Popsicle! The nurses have their usual warnings about food & balance issues, which we of course laughed at & ignored. Sure enough, about ten minutes after we got home he was ready to be up & running circles around everything & everyone. I will hear from the doctor any day now when he gets all the images & reports. We're crossing our fingers & still praying!

I still have had no baby yet! I'm 38 weeks today, my scheduled induction is next Tuesday. This little girl appears to be strong-willed as she is holding up tight in here! I'm making some progress in the labor battle, but apparently not enough to coax her out. We are all very ready & I think the anticipation is making Caden a little more out of sorts than usual. I'm hoping we'll see a little change in his behavior after she's been here a few weeks. I will update as soon as she's made her arrival!

Caden finishes his summer school program this Thursday & school starts monday the 24th. He is nervous about his new teacher & class. I am too but at least I know how to handle my emotions! We will have his ARD meeting, his school planning, sometime before the end of the month, or maybe early September. With all the issues we had last year I'm going to ask a lot more from the school this year. It could get interesting!

Well, as if that's not more than enough, that's all I got for now! Hopefully I'll be back here anyday now with baby news. Please keep praying with us for this new member of our family, for caden's MRI results, & for his start into 1st grade! Thanks & please sign the guestbook!!!


Kara & family

Sunday, August 2, 2009 7:54 AM CDT

The news I have now is nowhere near as thrilling as the last bit of news I had. If you missed it, you can go to the journal history page to get caught up. We got the date for Caden's MRI. It is to be this Friday, August 7. That is unless his baby sister decides to come first! I've decided as much as we need to know what's going on inside him, I can't miss it. I almost cried when he did xrays without me, I'd be a mess with a MRI. We're planning on the baby giving us another week, but you never know!

We think Caden is even realizing how close we are to the baby's arrival. He has started to act out even more than normal. We have had to be really strict with him and make sure he doesn't think he can get away with stuff. He's back to a lot of the crying & tantrums that we've been past for quite some time. He has a lot going on right now so we are doing our best to be patient with him & help him through it. In a months time he'll have ended therapy, get a new sister, have a MRI, & start 1st grade! That's a lot for a little boy who has a hard time processing normal life emotions.

Our summer is pretty well over. Tomorrow Caden starts a jump start program. He will go to school Monday-Thursday from 8-12 for two weeks. They will review his kindergarten material & practice for 1st grade. I don't know how he feels about this, but he needs it & I certainly don't mind. The alone time for such short times will be so nice. We'll still have the afternoons to have some more summer fun!

Please be praying for Caden & our family as we make some big transitions in life. We know it won't be easy, but with some help from above & support from our friends we'll make it through. I'll update again on Friday with news about his MRI, or earlier if there's a baby! God bless & as always..... Sign the guestbook please :-)!!!

Wednesday, July 22, 2009 3:38 PM CDT

Caden had his orthopedics appt this morning at Texas Scottish Rite. He was very excited about getting to go to xray. They have a corner of the waiting room set up like a space ship with buttons & lights & the ceiling looks like twinkling stars. He was really wanting to play in it so that was a huge relief. I had a bit of a hard time, this was the first of well over 20 xrays he's had that I couldn't go in with him. Luckily daddy was able to be there with us so he wasn't alone, just not with mommy. They got us in & out very quickly too.

Next we were on to orthopedics clinic. In an even bigger shock, we didn't have to wait there at all!!! They called us right into a room & within minutes we saw the nurse & the intern followed immediately after! Now for a bigger shock...... Caden's leg has fully healed!!!!!!!!!! We've prayed & prayed for this but didn't think it would happen this quickly or easily. With NF & pseudarthrosis it's supposed to be impossible for the bone to heal. Last year the surgeon said since it hadn't achieved union yet it would probably never! We were also told that we could expect another surgery this fall. Well, God had different plans for this boy! The bone is SOLID!!! I have NEVER seen an xray of caden's leg with a solid bone, that's over 20 xrays in almost 5 years! Today I saw what I only dreamed & prayed for, something I couldn't even imagine actually seeing. There is no huge gap in the bone, there's no crack or jagged lines, only whole bone. It didn't even look as thin & fragile as it usually did. We still have a diseased bone & there are still issues to be dealt with eventually, but we have been given an amazing gift. God has really provided for my boy! The best was explaining to Caden what this meant, he knew we needed to celebrate! Even he understands just how big this is.

I don't feel I can fully explain in words what my heart & mind feel right now. This is such a relief, especially at this point in our lives. We will still be fighting some battles, even regarding his leg (it's still in danger of new breaks), but this is one HUGE thing we can put away for awhile. We are doing fairly well otherwise. I made a trip to the hospital for dehydration last week, but I'm fine now & baby sister Shayne is okay. We are getting very close to her arrival, 4 more weeks! Which means school starts in just 6 weeks, I'm going to get us ready for that next week. We are still waiting on insurance approval to schedule caden's MRI, it looks like we won't have one until school starts, unless God pulls another fast one on me :-). For now we are going to live in the joy & grace that is Caden's leg being healed! That's about all for now! I'll update again when we hear about his MRI or sister being born, whichever happens first!

If you would take a few seconds to sign Caden's guestbook he'd really love it! Apparently once you've clicked into the guestbook you have to scroll all the way to the bottom to click the sign button, sorry I can't figure out what's wrong! Thanks!!!!


Much love & thankfulness,
Caden & family - Kara, James, & soon to be baby Shayne

Thursday, July 2, 2009 4:06 PM CDT

It's been a busy week & it's not through yet! Caden's opthamology appt went very well. We got the exact report we've been praying for, maybe even better! Caden's optic nerves look perfect, they are pink & healthy & just the right size. He has no lisch nodules & his vision is near perfect! He may be slightly nearsighted & could need glasses in the next five years, but the doctor said even then it won't be bad. What a blessing to hear such positive words from one of Cadens specialists!

Now onto today's neurology appt. Caden was excited for this appt, me not so much. He loves going to Scottish Rite, as always he got some prizes & a bag of popcorn! It's so great to have a place to take him to see his doctors that he loves to be there. It makes such a huge difference. The nurse & the PA were great with Caden & didn't mind his crazy antics. They gave hi
a coloring book & crayons & a storybook, & then took turns playing with him so I could talk & discuss our concerns. The doctor was puzzled by Cadens sleeping habits & wants me to journal his sleep routine for a few weeks along with a few other facts. Then I'll call & we'll review them & discuss doing a sleep study, that or we might have MRI results by then. The neurologist also requested that we see a GI doctor to discuss the vomiting episodes. We are waiting on a call from the hospital dietician to talk about Caden's eating habits & see if we can get something figured out there. Apparently Caden has grown perfectly in height since our last appt, but has barely gained any weight. He did order an MRI but we have to wait for insurance approval before we can even schedule it. So please pray insurance approves it quickly & the hospital can get it on the schedule quickly! That leaves us exactly where NF typically likes to leave you, waiting. So we will wait & while we wait we will pray that we get the answers we need.

That is all for now! We celebrate my birthday tomorrow & then my brother & sister will be here for the weekend! It should be fun, but there's no guarantee. I absolutely love the 4th so I'm just hoping we see a good show & have fun! I'll update again when we have a MRI date or hear anything more about everything that's going on. As always, sign the guestbook - if you have a problem please email me, some people haven't been able to get it to work. It worked for me this morning, so hopefully it'll work for you!


With thankfulness, Kara

Saturday, June 27, 2009 11:28 PM CDT

So once again I'm not updating like I probably should be. Life is so busy & so much fun! At this time in our lives this website is almost a slap in the face, in that it makes me step back from the day to day rush & think about the battle in the big picture. Who wants that? Especially right now when things are going so smoothly. Our life currently involves a TON of swimming, a lot of playtime & chill time, some cleaning, & preparing for baby sister Shayne's arrival in a couple months. It's nothing I can really complain about. Caden is even behaving really well lately. He has always done well in the water, but I always forget just how great his mood is while swimming. He's just so easy & almost all his differences & problems seem to disappear while we swim. He's just an easy going, happy, six year old boy! It's a wonderful thing to see. He is struggling a little in swim lessons, just those darn coordination issues, but he's still enjoying them & that's what's most important.

Our opthalmology appt got moved to THIS Tuesday! I'm a little anxious, but Caden shows no outward symptoms of vision change. I'm very faithful that it will be a good checkup with no findings, those perfect pink optic nerves will still be perfect and pink! I've prayed about this one & informed God that this is just not a good time for tumors to start showing up! We have an upcoming neurology appt as well. That one won't be as easy, his neurological health is taking a beating. I've been told that this is when we'll get our MRI date. The hardest to swallow is his orthopedics appt at the end of July. We're expecting our next surgery to be scheduled! I'm not sure what they'll want to do, I'm not sure what I want done for him. Plus, the timing for an inpatient stay isn't great! However, so far God has never failed to work things out for Caden. So we will keep on praying and trusting in His perfect plan!

It's late and I need to get to bed. Hopefully I will update with happy (no) news on Tuesday. Oh yeah, Fridays my bday! Woohoo!!! Sign the guestbook!!! Caden can now read them himself!

Thursday, May 21, 2009 9:52 PM CDT

So caden's opthamology appt got moved. We now have to wait for a other month. I find this ridiculous since I had this appt scheduled for over a year & they're the ones who cancelled. Although from what I can tell I don't think any of our issues are eye related, but those gliomas can be sneaky things so I'm still keeping my fingers crossed.

We're also waiting to get our MRI scheduled. I think I'll call back tomorrow to make sure our stuff didn't get lost & forgotten somewhere. On that note some of the behavior changes have been less up & down lately, they're still not settled but a little better.

Caden has six more full days of school & two half days. I'm very ready for this year to be over for him, I'm not ready to have him home every day though! It's been a hard year for him but as in everything he's triumphed through it all. He still enjoys learning & has maintained some good friendships. I'm praying next years teacher will work well with him & be a very patient person. It's a little harder when the school uses the love & logic approach with a child whose brain is not capable of understanding the logic part. Caden has lived his entire life defying logic!

He's very excited this week. Today we celebrated his half birthday with lots of silly fun stuff. We had a good time with it & enjoyed the giggles. This Saturday the local pool where all his favorite lifeguards (pretty young college girls) work opens & he has no baseball game or swim therapy, so we'll probably be there all day! He had a fun baseball event last Friday where he got to have an evening at UTA with their ball team. He jumped in bounce houses, had popcorn, pizza, drinks, got to hit a few balls with the big boys, & then all the teams got to walk around the field as an opening ceremony. He only has one more game in this season, which is perfect as it's starting to get hot. We're also getting treated to a Texas Rangers game in June as an end of season celebration!

Caden is still frequently asking when his sister, Shayne, will come. He is no more patient than I am. He still loves talking to her, but doesn't care much about feeling her wiggle & kick. I'm hanging in there, it's getting hot & I can no longer wear my ring :(. I'm gonna find a cheap temporary replacement because I can't stand my finger being so naked. I go in tomorrow for a checkup & will hopefully get a solid induction date!

This last week was super busy with weddings & other stuff & these next weeks will likely be just as busy. Hopefully I'll update once some of our summer events have begun. Until then, have a great end of May & as always please sign the guestbook, it means so much to us!

Tuesday, April 28, 2009 12:40 AM CDT

So I know it's been a very very long time once again. Our computer is absolutely dead & we just have so much to do with the house that we haven't gotten a new one yet. But sunday I got a wonderful iPhone that is changing my life, I'm totally obsessed with it. So now I'll be able to keep better updates.

The first of which has to be the news that caden is sharing with everyone, including complete strangers. And that is that I'm pregnant! Around mid August we'll get the newest family member in the form of a little girl named Shayne! Caden is very excited & is having a blast making sure she'll have every penguin baby toy he can find. He is also making sure, much to my dislike, that she has lots & lots of pink. He is so ready to be a big brother & I know he'll be a great one.

Caden has been really struggling with behavior the past several months. He's getting in trouble at school almost every day & has been having major self esteem problems because of it. His sensory processing disorder has not been getting better, it's actually gotten a little worse. He's back to taking naps most afternoons. And now he's started having problems with his gag reflex & is throwing up frequently or feels like he's going to. We have appts. with the opthamologist geneticist & a few others soon so we'll see what they have to say. He has also been having leg pain that we are fairly sure is from nerve damage. Yeah, he's dealing with a lot right now but he's his same old happy crazy silly self! I can't ask for much more from him.

I will leave this up for a while so every one can see, but hopefully I'll update again after his opth appt. Thanks for still checking in on crazy man caden! And as always please sign the guestbook, it's a few minutes of your time that means a lot to us.

Friday, October 31, 2008 12:19 AM CDT

Does anyone care to guess what Caden wants to be tonight? Of course, a penguin, what else would he be!!! He is very excited. He is still working hard in school. Behavior is the only thing really holding him back. We went to the neurologist and everything looks okay for now, we have some homework to do before he wants to order an MRI but I have a feeling that it's coming. He has yet to catch any of the many viruses and junk that's going around so that's great! Hopefully I can update again next week, but we'll see! Have a safe and happy Halloween!



Kara

Tuesday, October 21, 2008 10:42 AM CDT

Hi all! Caden made his goal for selling 20 plus items in his school fundraiser! He is still doing well in school, we've had a few rough days, but the good way outnumber the bad. He had a fun night saturday with his buddy and favorite lifeguard, Cassaday. She babysat him so James and I could go out on a real date. She is his first non-family babysitter in over 2 years!!! He had a great time and just really loves her, and I think the feelings are mutual.

He has his neurology appt. next Thursday, I think we will be scheduling his MRI. Please be praying! He has grown two inches and has had some major weight changes in the past six months, which is scary in the land of NF. Not to mention some of the behavior issues and mood swings we've dealt with since the spring. I am not too worried since we've never found anything before, but he is at that age where things commonly start showing up. Please just pray!

It's hard to believe that one month from today my little baby boy will be six years old!!! More later, gotta go!!!


Kara

Tuesday, October 14, 2008 10:47 AM CDT

Hi all! Caden got very good marks on his report card for the first six weeks. He's working hard and it's paying off. He has qualified to get OT services at school so I'm sure that will help that much more.

Right now he's working really hard to sell 30 items for his school fundraiser. If he does that he gets to ride in a limo to go out to lunch one day. He also then gets to be involved in some other really cool stuff. He is many items away from that mark and if anyone would help him out that would be great! The orders are due Thursday, Oct. 16, yeah I know that's really soon, so the pressure is really on. You can go to www.kaypiercefr.com to order. His student id is kp86826 , please make sure and include that # in the order so he gets credit for it! Thank you all!

Now I gotta go, I'm on a short break from my class full of little ones here at the preschool. They are so cute and so much fun, but boy are they a handful!


Hope to see your names on his order sheet!

Kara

Tuesday, September 9, 2008 1:37 PM CDT

I know it's been forever and this has to be quick, I'm at school and I have a two year old who is trying to run away. OUr computer crashed and i have no other way of updating this or checking my email, hopefully it will be fixed soon. Caden is loving kindergarten and is doing very well. His leg is doing okay, it has now been decided that it is as healed as it will be. I'm not happy about that, but that's for another day. I miss you all so much and will catch up with you soon, I promise.

Kara

Wednesday, May 21, 2008 1:23 PM CDT

I know it's been too long since I updated last. We have been very busy just living life, it feels so good.

Caden's genetics appt. went well. There were no mind blowing discoveries or thoughts, just our typical appt. We still have some things to think about, but at least it's all in my hands.

Caden is doing pretty well these days. His range of emotions are still a little crazy, but they are definitely getting better. He is very, very bruised right now and they seem to be staying longer than they should, but it's not too far past normal. He expressed some concern last night about going to a new school next year. I think the exact quote was, "but I'm not going to know anybody there". I have to be more careful what I say around him, I think my anxiety about the new school and new district is rubbing off on him. I am very anxious and concerned, but I also know he is very smart and very easily makes friends. I know he'll be fine.

We have already been doing a little swimming and can't wait to start Caden's lessons. He is getting so much stronger and I hope some coordination kicks in soon. I really think that's all that's holding him back right now. He finished baseball last Saturday and did great. He was hitting the balls hard and is no longer throwing his bat over his head. He does however "slide" into home EVERY time. He's way too cute. School ends next week and we are going to be so sad leaving his school, especially knowing it's about to be torn down (they built the new building over the course of this school year). He has great teachers, a couple great friends and a wonderful nurse. I know I will miss them and we will definitely visit them often.

I'm going to leave it at that for now. I hurt my neck this weekend and have to find a chiropractor, woohoo. Please be thinking of us. I will update next time I have any news, hopefully next week after we say "goodbye" to his school. Thanks for visiting us!!!


Kara and family

Sunday, May 4, 2008 9:37 PM CDT

One week over, a new one just begun.....


Last weeks appts. were pretty good. If you read the last update you know the opthamologist brought only good news. The ENT however wasn't good or bad. There are still a lot of unanswered questions as far as Caden goes. There is also a lot still going on that we will just have to keep working on and praying about. But we have been dismissed for a year, yay!!! Caden has never gone more than 4 months without seeing an ENT so this is big. Just like his leg, there is just nothing more they can do for him right now. So we keep working on things and see him in a year to see if there's any improvement.

We had a great weekend. We spent pretty much the whole day yesterday at Buddy's friend Emily's house. We all went and had lunch and played outside. Caden did great and we all had so much fun. Emily's brother Jake is in love with James and pretty much thinks he's the coolest. It was very sweet. We went hours without any of the kids getting hurt, until towards the end of the night when Emily's mom decided to be silly and ride Emily's bike. Well, she fell over and scraped up her knee, and I almost cried laughing. It was quite a sight to see. We can't wait to have them over sometime! Jennifer, thanks for a great day, I'm glad we could make time pass by faster for you guys!!!

Caden and I have an appt. tomorrow and then he has genetics next week. I'm trying not to be too anxious about genetics, but I'm sort of praying she'll see some of the things I'm seeing. Then the rest of me is praying that I'm seeing more than what's actually there and she'll calm me down. Things just don't seem to be right or normal with Caden right now more than ever. Please keep him in your prayers. I just can't get it out of my mind that something has to be going on inside that gorgeous little head. I don't really want to do an MRI, because who really wants one. But then I do because I'm human and I want visible proof that nothing is growing in there that shouldn't be. Please, please, please be praying for him and for me to have some peace of mind and heart.

Well, I need to get on with life and laundry. This will be a busy week for us. This is the week to sign up for all our summer activities! I am praying we can stay busy and have lots of fun. Have a great week everyone, we'll be keeping you close!



Kara and family

Tuesday, April 29, 2008 12:58 AM CDT

Saw the opthomalogist this morning, everything looks great!!! He says we can go one more year before seeing him again, and if things look the same we can go to every 18 months. I know for some of you, the thought of that possibility seems like something out of a fairy tale. But just to brag, we haven't been "blessed" with the horror of optic nerve tumors, yet. Caden is a little farsighted, but nothing that needs to be treated yet. He even did really well on some of the tests. He performed tests that he shouldn't have been able to since he doesn't recognize a lot of numbers, much less write them (he had to trace them with his finger). He did his first vision test with letters and did great, of course he didn't recognize the teeny tiny impossible ones, but heck, he's FIVE!!!

He even did great with the drops and only cried for a few minutes. He isn't enjoying the blurry vision and his eyes look so funny, they are so big already and then you add the dilation and it's hilarious. He is wearing his sunglasses so the sun doesn't hurt his eyes, but is getting around fine despite all of it.

I think we are both a litte nervous about the ENT this afternoon. Not so much about the outcome, all I can say is God's in control, but the procedures alone are never enjoyable. They will send him to audiology, they will do another scope of the throat (through the nose, YUCK), and then we will discuss when and how to do the soft palate study. It is appearing that Caden has a defect of the soft palate called Velapharyngeal Insufficiency. He also appears to be compensating for it very well in most situations. It also appears this is just one more thing that seems to come with NF sometimes.

Last but very not least. Go to www.s121.com and vote for Caden in the cute kids photo contest. click on the cute kids link, click on Grapevine Mills, and vote for the cutie with the bunny on his back! Tomorrow is the last day to vote, please pass this message on to friends and family, we need your votes!!!


thanks for being here,

Kara

Wednesday, April 23, 2008 2:53 PM CDT

This has to be quick, I have to get Caden from school in a few minutes. I just wanted to say all is going relatively well. We have been very busy lately, but having a lot of fun. My mom's birthday was last Saturday, the 19th, and we got to spend some good time with her and our friend Diane from Cali. Caden has been having some major issues lately and it makes me crazy just to think of all the possible reasons behind it. His OCD and anxiety has been at an almost all time high, he is sleeping so much, and he's had some major growth spurts. For those who know NF, this is not good stuff. This brings on major possibilities for tumor development and other issues, the growth is just possibly not good because his leg really needs to catch up. I also know his blood counts are off because of the way his body looks like we slam him around, he is so horribly bruised right now. We have some big appointments coming up, opthamology, ENT (with hearing tests and laryngoscopy), and genetics. It is going to be interesting to see what comes out of these. Please be praying for him and our family, the financial toll alone has been hard on us.

Also please pray for our friend Gabbie, www.caringbridge.org/visit/gabriellhughes , she had a recent surgery to remove multiple tumors and it didn't go well. Her mom really needs some encouragement.

And if you haven't voted for Caden yet, or asked friends and family to, DO IT NOW, PLEASE!!! Check our last update for the how to, or email me for the instructions! THANKS SO MUCH!!!!!!!


Kara

Thursday, April 10, 2008 1:49 PM CDT

We survived! I mean that in sooo many ways. This past weekend was so exhausting but worth every second. Caden had his first Miracle League baseball game, Go Astros!!! He had so much fun and did really well. Then, we headed on to Supercross for a day of awesome fun watching Kevin race. We spent some great time with Seana, Kevin, and Preslie. Kevin's races didn't go as well as he'd hoped, but we still think he did great. Caden loved the time he got with Kevin and I know it meant so much to him, thanks guys for a great time!!!

The one thing that made this all really hard is Caden's OCD. He kept getting stuck on his ideas and couldn't let them go. This continued through the beginning of the week and he's finally relaxing a little. It is only getting harder as he gets older and is starting to become more aware of his thoughts and actions. He is now better able to notice when he's having "issues" and works so hard to get past it. He's working so hard these days meet the challenges he sets for himself. I am amazed every day at the things he's learning and figuring out for himself, he spelled hot dog at dinner the other night all by himself. I can still see that there will be struggles for him in school, but right now I can see so much hope for him to overcome them. I am already praying for his teachers, that they will be firm but kind and will be willing to meet Caden where he is and help him overcome challenges. I know in return they will be blessed to get to know the special incredible child he is.

One of the ways we survived this week is the horrible storms that passed through last night. It looks like we got hit hard when you see all the limbs and leaves that are everywhere, but it could have been much worse. The school district we live in is closed, but only certain schools in the district Caden attends are closed. The middle school just blocks away from Caden's school got some serious damage, but they are still open today. James is on shift today and started off the day with all kinds of calls for downed lines and other stuff. The storms caused very sparatic damage around here, but north of us it was really bad.

Caden and I will go on his field trip tomorrow, which he has been asking about for three weeks! He is so excited, as are all of his friends. He has another game on Saturday and then we'll go back to the zoo, because .... the penguin exhibit is FINALLY opening!!!! As you can imagine Caden is beyond excited about this. I have a feeling I will be hearing requests to go the zoo everyday for the next several months. We will have to set up specific zoo days, maybe that will help curb the requests. Who am I kidding, this is Caden and penguins we're talking about!

Please, please, please, if you haven't voted for Caden yet please do so now! If you haven't asked your friends and family to vote for him yet please do so now! In case you missed it before or just need the info here goes: Caden is in a cute kids photo contest! go to www.s121.com , click on the cute kids contest link, click on grapevine mills, then vote for Caden (the sweet smiling boy with a bunny on his back). Thank you so much for helping us out, Caden can't win without YOUR help. Enlist everyone you know to help us reach our goal!


much love and gratefulness for your friendship,

Kara and family

p.s. one more survival celebration, can you believe as of Monday (April 7) me and James have been married for 6 months!!! And there have been no murder attempts, just a few rolled eyes ;)!

Wednesday, April 2, 2008 1:32 PM CDT

We are worn out! We went to Arkansas this past weekend for a sort of reunion. We celebrated my Papa's 80th b-day and got to see my aunts, uncles, and cousins for the first time in over 15 years! Yeah, it was weird. We had a great time though. It was so great to see my cousins and meet their kids and we had a great time with our friends who live up there.

This weekend won't be any better. Friday we finally get to see Seana and Kevin again, and even better get to meet their new baby girl, Preslie! Then, Friday night is the opening festivities for Caden's baseball season with the Miracle League. Saturday is the first game, Caden is an Astro with his buddy Jake! As soon as that's over we'll jet over to Texas Stadium for SUPERCROSS!!!!! Go Kevin!!! We absolutely love this event and the special time we get to spend with Seana and Kevin. This will be the first year that James will get to join Caden and I. It should make for a long, but very memorable day!

I think Sunday we may actually get to breathe :)! Caden did really well with all the traveling and noise and new faces last weekend brought, so I'm sure he'll handle this weekend just as well. Next Saturday I'm not really sure how we are going to be in all three of the places we want to be. Swim therapy starts, we have a game (and it's picture day), and it's a special opening day for the zoo's penguins! I'm thinking we'll just have to see the penguins later in the day. Caden is so excited and has asked every day for three weeks 1. when baby preslie was coming and 2. when we are going to the zoo. These should be some crazy and fun few weekends.

Please, please, please help us! Caden is in a cute kids photo contest! Please go to www.s121.com , click on the cute kids logo, go to Grapevine Mills, and vote for Caden (with the bunny on his back)! Vote as much as it will let you! WE really, really, really want to win this! Thanks for your help, we can't do it without YOU!


That's about it for now, we have some check ups coming soon, please pray all goes well!


Kara

Monday, March 24, 2008 12:57 AM CDT

Another month has come and gone and again it's been forever since I've updated. My only excuse is that Caden has been very needy lately and last week was Spring Break and we kept ourselves busy!

Caden really celebrated on St. Patrick's Day! We ate green things (if they weren't already green we dyed them) all day, we wore green, and just had a lot of fun. That was the first day of Spring Break so we went to Chuck E Cheese. We had a lot of fun and won TONS of tickets. We finished the day at the mall, Caden was not happy about this until we found the bunnies! We signed Caden up to take pictures with live bunnies, but I'll get back to that later!

On Tuesday we took Caden to see Horton Hears a Who! It was rainy and yucky outside and was the perfect day for a movie. The movie was so cute and had some really funny moments. Caden loved it and is still talking about it. It doesn't help that we ate dinner at Ihop and had a "Dr. Seuss" dinner. It was tons of fun and was probably the highlight of the week.

Now for my big news, Wednesday.... I got my hair cut!!! Now I don't mean the average run of the mill cut, I had 12 INCHES taken off!!! I donated it to locks of love, of course. My hair now sits just right above my shoulders with lots of really short layers. I LOVE it, it is so much easier to take care of and fix now!!! Caden says he likes it because he likes when my hair is "not all up" and is "all down and curly". He is so sweet and so funny.

Now for the bunnies! Caden was smitten by these bunnies! He was so thrilled and I knew we couldn't pass up the opportunity to do this. We went on Friday and did the photos. Caden had so much fun and we got some of the cutest pictures. Caden was giggling and giving us some real authentic smiles and I loved it. We went a little crazy with the photo purchasing, but they were worth every last cent. There is a way to view the photos online, but you have to have a password, if you want to see them just email me and I will give you the password.

The other thing is we registered him in their cute kids photo contest! The voting hasn't started yet, but please be watching for him and vote lots! The web address is www.s121.com . From there you click on the cute kids contest logo, we shot at Grapevine Mills, and then you click on Caden's picture! Very simple, and we would love to see him win, not to mention the photo package prize!

We had a great Easter weekend and didn't do anything too exciting, just normal Easter stuff. Caden thinks the Easter Bunny rocks because he got some Star Wars characters and new Leapster games! It was fun seeing his reaction and excitement.

Caden went back to school today (hallelujah!). This week will be basically just getting back into our routine! We are going on a surprise trip this weekend, that will be interesting. I will update again once the contest info gets put up on their site!

Thanks for hanging in there for this SUPER LONG update!!!


lotsa luv,

Kara

Monday, March 10, 2008 12:57 AM CDT

I can't believe it's been so long since I've updated! So much has been going on and I just can't find the time like I used to. It doesn't help that the computer is still at my mom's house as we haven't been able to move service to the new house yet.

Last week, Feb. 28, I took some extra time to talk to Caden about NF. February 28 2005 is when Caden had his first leg xrays and the first time NF was mentioned in unison with Caden's life. I told him the story of our first doctor and of how God was watching out for his life and how God saved his leg by sending us to scottish rite. It's so crazy to look back on it now and see how all the pieces fell together when at the time everything was a big blur of emotions. How little the doctor explained, how he just handed me a piece of paper with two big words on it, and said my son's leg was broken, would never heal and we needed to see a neurosurgeon and have a MRI to make sure he didn't have brain tumors; then he walked out of the room. Now, I don't cry over much, but as you can imagine, I didn't make it far without tears that day. Then I came home and looked stuff up online and tried to call my mom with some composure and break the news to her. We went through the next few months with a whirlwind of doctors visits and a lot of unknowns. Although, a lot of answers for other questions I had came to light. I definitely don't like NF or that my son has to live with it or what it's done to him and his body, but we have had a lot of advantages from it that we might not have had if he had problems without having NF. (If that makes any sense at all)

Another big "anniversary" passed as well. March 8th of last year was Caden's leg surgery. The very one that appears to leave us with hope for an amputation free future. What a huge deal! I talked to Caden about it and we dubbed it as his "new leg bone's birthday". We spent the day hanging out and went to the store where he picked out some new books and stuff. We will celebrate with some friends pretty soon. Caden was so proud of this "accomplishment" and is really starting to understand how lucky he is that he gets to keep his real leg and that he's not going to have to live in pain from it. It was a quiet day of celebrating and counting our many blessings.

Caden is acting really weird lately and having some weird symptoms. He's been waking up and seeming like he's sick, but through the day he starts acting more like himself. His tummy is hurting him, he's having diarhea, his lips are cracked so he's biting them and now they're all scabbed over and bleeding, and he's just been very fussy and anxious. I am calling his doctor at the neurosensory center to find out if this may be medication related and what we need to do. Hopefully it's just a minor thing and will pass over. We are officially at 3 weeks into treatment and they say we should start seeing results at just after 6 weeks.

Easter season is here! Caden did his first egg hunt yesterday and did really well. What a memory to think back on last year when he was in his wheelchair and unable to walk, then to see him yesterday running with all the other kids. I couldn't help but tell some of the other parents what a special kid he was and it was impossible to hide my smile and pride at where he is now and how far he's come. Caden has another egg hunt next Saturday and one the next. Luckily, yesterdays didn't involve any candy, just prizes!

Just to remind everyone, Caden's favorite day is coming up: Caden's favorite day of all things green, St. Patrick's Day! We have all kinds of plans for fun green stuff and green outfits, even plans for Hank! Caden has also made me promise we will eat as many fun green colored foods as we can! I figure if we have to live with the green obsession we might as well enjoy it!

Hopefully I'll update again next week with all the fun details of our completely green day! Have a great week and enjoy the upcoming reasons to have fun and laugh with your kids and loved ones! Thanks for checking on us!

Kara

p.s. have I ever told you what ghosts say according to Caden, hoo-ee-awww-eee hoo-ee-awww-eee, for some reasons there have been ghosts in every dark room this week. Such a crazy boy!

Sunday, February 17, 2008 5:06 PM CST

I hope everyone had a LOVEly Valentine's Day! Caden and I had a great time together, as Thursdays are our "morning off" (I don't work Thursdays to allow for doctors appts. and such). We had a great time together during the morning and then enjoyed a friend's wedding that evening.

Caden went to a new doctor yesterday, it was a grand opening for their clinic so we went on a Saturday. It's a Neurosensory Center of America (www.neurosensorycenters.org)
It was fabulous. The doctors who run it are otolaryngologists, head and neck surgeons, and neurosurgeons. They definitely knew their share of NF and it's complexities. They ran a short diagnostic exam on Caden and confirmed what I already knew, Caden has Sensory Integration Disorder. They also found one of the possible causes for it and are sure they can fix it. They also say they can help me with my migraines and vertigo. I am beyond thrilled with the prospect of getting some things taken care of and getting some answers we have looked for for so long. The doctors were so kind and while confident in their knowledge and ability, they were also not egotistical. They listened to what I knew and ,WOW, even acknowledged the accuracies in what I knew. We go back Thursday to do the extended testing and get a plan for treatment. I am very excited and looking forward to the help we should be recieving. Caden did extremely well through all the testing and seemed to like being there. I am hoping that's a good sign.

That's about all for now! I will update again after our appointments on Thursday, hopefully with more good news! By the way, for those of the NF community who's out there reading this, this might be something for you to look into as well. One of the things they are trying to do is repair damage done to nerves and repair structural issues in the myelin and myelin sheath, I don't know about you, but that sounds like something that might be helpful in some cases! I will fill in as I find out more myself.


Thanks for listening, love to all,

Kara

Wednesday, February 6, 2008 1:06 PM CST

I think we might actually be getting back on our feet. We have been sick for weeks. I was sick half of last week and as soon as I started feeling better Caden got sick. He battled fevers for days. Now his chest is really congested, but he's on some medications and getting better. He finally went back to school today. However, I am now very ill. I have a massive sinus infection and have received a cortison injections to try and get my lungs to open up and get my oxygen levels up. Everything they did worked really fast so I'm starting to feel better, if only my d*** asthma would go away.

Caden's allergy reports came back and he doesn't have any significant allergies, which is good and bad. It definitely doesn't give me an answer to some of my questions, but I'm glad I don't have to worry about allergy stuff. He had his annual school meeting (to set his I.E.P) last week. We have great news..... Caden will be in an all day kindergarten with only monthly monitoring by a special education teacher!!! He will still have an IEP and will still need some special in-classroom modifications, but he will be with his fellow classmates all day in a normal environment. What joy to know that this little man who has pushed and been pushed his whole life is finally achieving some goals. God has really been good to my sweet boy and it has given me even more hope for his future.

We see Caden's neurologist tomorrow at Scottish Rite. I feel it will be a good appt., the Strattera really seems to be working well for him and he's had a good couple of months otherwise. What a change from the past few years! Don't get me wrong, we still struggle in many ways, but what a difference we're seeing lately.

We also have an appt. next weekend for a place called the neurosensory centers of america. They will do some diagnostic tests and we'll see if they can offer Caden any more help from what he's getting now.

I am just insistent that Caden gets ahead of the game before school starts next fall. His speech still needs a lot of help and his fine motor skills are still struggling, but I believe if we can keep on top of them he will not only do okay in kindergarden, but will succeed. He has been absolutely hilarious this past week and has been so silly and full of life and giggles, even with his fevers. I just know the other kids and his new teachers will fall in love with him and his personality.

That's about all we have for now, life is still bringing it's battles, but God is really holding us up and keeping us moving. By the way, I have to let everyone know, my best friend Seana had her beautiful baby girl, Preslie, last week. She is just precious, and way to far away, I can't wait to see you guys in April!!!


love to you all,

Kara

Wednesday, January 16, 2008 1:53 PM CST

Sorry, it's been awhile! We have been really enjoying this new year. A year that isn't already full of appointments. I don't have dates and thoughts swirling in my head, i.e. plaster clinic, ortho clinic, x-rays, psychology, surgery, surgery, surgery. Without those it makes for some happier thoughts. There were so many moments throughout the holidays that either we or friends and family would stop and look at Caden. He would be running around almost able to keep up with the other kids, it was almost impossible to not stop and realize what was happening. There he was running like there wasn't a care in the world. He wasn't the boy with the cast, in the wheelchair. He was the tall, lanky, cute 5 year old boy who could run, and not even with the same limp he had when running before. You can't even tell there's bone problems when he walks anymore. For that, I really celebrated the new year. I don't have anything specific to look forward to, other than there is no sense of impending doom hanging over our heads.

While we are in a "resting" place with his leg now, who knows when it will start again. We are kind of in a race of sorts. His new bone is growing and hopefully starting to gain connection, but his other bones are still growing too. It is impossible to know, still, if that last surgery really did any good for us at all, or if it was just a delay of sorts. I do have faith, and that's what I hold on to. Even now I almost can't handle the idea of not doing xrays and clinic until September. For so long we never went longer than 4-6 weeks without at least clinic, 1 year is such a huge jump. I do however understand that there is nothing they can do for him currently, we just have no choice but to sit back, hold on to our faith, and wait.

I have been asked this lately so here goes, no, we are no where near done. Even when Caden's new leg bone is fully connected and strong, we aren't done. Caden has a steel rod in his leg that won't grow with him, at some point it will either need to be removed or exchanged for a bigger one. Caden's tibia is always going to be longer than his fibula, until we do something. Eventually, in reality it could be sometime next fall, they will insert a pin into the growth plate in his ankle on the tibia side, this will allow the fibula to catch up in growth. Then, they will of course have to pull the pin out. Now think about it, through all of this his other leg will have kept on growing, so then he will likely have to have a limb lengthening procedure. That is all we have been told to prepare for in the future so far, as if that's not more than enough.

Caden is currently without casts, braces, or limps, but he is not without issues to tackle. Caden's social issues still need some serious work, but at the same time, who wouldn't be his friend. He's seriously cute and has some incredible style going on :)! His hair is officially covering his ears and he says he still doesn't want it cut. To be honest, I never thought I would like his hair this long, but he really is looking big.

The Strattera seems to be the right choice in medication for Caden's ADHD, he is still very impulsive, but his attention is definitely improved. He performed well during his teacher's evaluation at school yesterday and he is learning and understanding more and more. I know we haven't quite figured out everything, but I have confidence that we will.

Caden and I had our allergy testing done this past week. Caden's results aren't back yet (as he can't handle the feeling that the skin test would have evoked), they should be in by tomorrow. Mine however, yikes, I'm super allergic to every pollen, grass, tree, bug, mold, and dust. And I mean all of them! I just hope Caden isn't dealing with the same issues.

It is a constant fight, even when it's not a visible one. Another mom of a NF fighter wrote something recently that truly speaks of how so many of us feel in the NF battle. Each of our battles are so different, but the feelings that arise with them tend have so many similarities. I know this has been one of my longer updates, and hers is fairly long too, but it's worth a read. It really speaks true of so many of our feelings and tells of where our minds tend to roam.

Kristen, I hope you don't mind me "borrowing" your words. You said so much that resounds so true within my own brain at times.

take time to check out Genna's page at www.caringbridge.org/nj/gennahenna !

thanks for being faithful in caring for my Buddy!

happy new year,

Kara and family

Sunday, December 30, 2007 6:30 PM CST

Christmas was absolutely wonderful! Caden got everything he had asked for and just had a great time. He spent lots of time playing and just being around people who love him. It has been a really good time for him. He is handling the break from his normal schedule fairly well. I am struggling to figure out which of his outbursts are from that and which are being caused from side effects of his medication.

Hank got lots of "doggy stuff" from Santa and really has enjoyed them all, which really thrills Caden! We have had some issues with teaching Caden how to best treat his dog, but he is doing better. Luckily, Hank is a very calm easygoing dog.

We really got blessed on Christmas as James was able to be around until about 11 before he had to go to the station. Sadly, he will also work on New Years Eve. Caden will spend the night with his Gram and I will go hang out at my "sister"'s new house with some friends. I'm sure we will all have enough fun and enjoy seeing this year leave.

We are still just almost 10 months out from Caden's last surgery! It's so hard to believe where we were this time last year! We know his bone is starting to grow, but it is just so hard to wait to know for sure. It's even harder not having any other cases to base this on. We have heard in cases of tibial involvement that it can take up to two years to see full growth, if it's ever achieved at all. There is no way to know any info, as Caden is the only one we've found as of yet to have such severe damage of the fibula and surgery to correct it. We aren't supposed to go back until next fall, because unless something is wrong, they can't do anything more until the new bone has completely taken. The not knowing where we stand is absolutely killing me and I will probably take him back sooner just to find out.

He does have an appt. with neurology soon and hopefully we will get him into the learning disorder center for his evaluations soon after that. He is really doing very well, but there are still areas that we see definite problems.

Please keep him in your prayers as we enter this new year. We are praying it will be our first with a "whole" and "well" Caden. We have seen many blessings even as we have had our struggles this past year, and I know with God's grace we could truly start a new year with new blessings that don't have to be accompanied by struggles.

Thank you all for your friendship, love, and prayers in 2007!


Kara and family

Tuesday, December 18, 2007 2:50 PM CST

Caden is doing very well on the Strattera. It is making him very, very sleepy. He is just now starting to eat a little bit less, but it's no where near what it was with the others. I think he'll have a hard time gaining weight on it, but I don't think he'll lose any like before. It seems to be doing okay with helping him gain some control, but it's still early. He is also waking up earlier than ususal, but with all the business of the holidays his bedtime routine is a little out of whack.

Caden is also having some change at school. He and his classmates are missing one of their teachers. Mrs. Linda's x-husband, the father of her three kids, passed away last week. It was very sudden and sad and they are all in our prayers, we ask that you keep them in your prayers as well.

We also received sad news today that Caden's speech therapist is moving to the big hospital and will no longer be at the outpatient center. She is really wonderful with him and she will be missed. Hopefully we will get a good replacement and won't miss too many days in between.

Caden is getting anxious for Christmas. He knows it's getting closer and just can't wait. He has been very sweet and giving this year. When Gram was fixing him some muffins Sunday she burned her hand on the oven. He ran into the room I was in and whispered to me "Gram burneded her hand on the oven, we need to get her a new thing for christmas that you use to get hot things out with". He was talking about an oven mitt! He is so smart and so loving!

There is more to be said about how smart he is and how amazed I am by him and his accomplishments, but I am late getting him for school so I have to go now! I will fill you in on that stuff another day! Christmas day is almost here! Happy almost Birthday Jesus!!!!!


Kara

Tuesday, December 11, 2007 2:40 PM CST

Well, Caden lost his tooth, finally! I tackled him and yanked it out Friday evening. It was barely hanging on and I know if it stayed in much longer he would have eaten it with dinner or swallowed it in his sleep. The tooth fairy brought him some little transformer guys and was he ever excited!

Caden performed in the Church Christmas musical Sunday and did wonderfully. He was a sheep and was very cute and did really well. He sang most of the words and only missed a few motions. For those who don't understand, this was monumental. Caden has just started singing. He had never sang a song until just this October, so singing an entire song, on a stage, with lights and props and kids all around. In other words, a sensory and ADHD nightmare, but he did great!

Caden started his Strattera, his new ADHD med, yesterday. He fell asleep withing 2 hours of taking it, but that's just a side effect we'll see until he adjusts to it. He was really good yesterday and again this morning, last night was a different story, but I think he was just bored. Hopefully this is the one that will work. It isn't a stimulant like most, but it has it's own set of scary side effects. I know he needs these meds, but it sure puts me on edge knowing they haven't been approved for kids his size or age. I just have to watch him closely and hope and pray for the best.

And as though you didn't know, God always provides. We are having a plumber out today. My sister-in-laws cousin is a plumber and is sure he can fix our problem without the unneccessary drastic measures the plumbing company wanted. I sure hope so! We have dropped some of Caden's therapies and he'll have a few weeks off because of the holidays, so hopefully all of this combined will really help with the money situation. We found some great deals on some of the stuff he wants for Christmas, so I think he will really get some of his wishes granted.

I hope to update a few more times before Christmas, but with Caden being out of school after next week, well, we'll see :)! We will be praying for and thinking about so many of you in these next few weeks. Some of you we will be really missing and wishing you could be here with us. Just know that you will be in our thoughts and our hearts. We have been blessed with some incredible friends that I could never thank enough. Tell a friend you love them today!

feeling overwhelmed and blessed all at once,

Kara

Friday, December 7, 2007 3:28 PM CST

So here's a quick update, just a few days past when I thought I would give it hahaha! Caden is really doing great right now. For the VERY FIRST TIME in Caden's life we heard the amazing words straight from his pedatrician's mouth, he is a healthy boy!!! He officially weighs 37 lbs. and is 41 in. tall, still not much more than a stick, but it's a healthy weight so I'll take it! The lab work has recently come back and is still a little off, but no more than normal, which is not off enough to take action. But other than that there are no "health" concerns. His ears, his chest, his nose and eyes all look and/or sound just perfect! YEA CADEN!!!!!

Hank is still doing really well. He is finally to a point that he not only likes James, but will actually choose to be with him. He loves walks and Caden is still doing really great at taking care of him. They love playing and snuggling together.

Caden is about to start his new ADHD meds soon. This one is a whole new classification of drugs so we shouldn't see the manic side effects or the loss of appetite. The only issue is they HAVE to be swallowed, we can't crush them or blend them in his food and they can't be given in another form. So we are working on swallowing with tic tacs, he's doing really well, but I want to make sure he's ready before we move on to the mega money pills.

Also, we recently found out his reflux is back with a vengeance. It has made his throat almost raw and is really worsening the vocal nodules. Yes, I said making them worse, which does mean he had to have another laryngoscopy. He did a lot better with this one and only cried when they sprayed the anisthetic in his nose and then he only pulled back a little when they put the scope in. He is so amazingly brave, there is no way I would let someone put a scope in my nose like that! So we have also started back to his reflux meds. And all this in the middle of a health insurance issue right at Christmas time! Not so much fun for the bank account.

We are having plumbing issues on top of all of this. We need your prayers! We need to find a way to make it through these issues and Christmas and still be able to eat in January, and I'm not kidding. God has never left us in the dark before and I don't imagine he will now, but our stress level is high and prayers for quick answers would be awesome!

Now for the funny news, Caden's first loose tooth is quickly on it's way out! It is just barely hanging in there, but the only person he wants to pull it out is Hank! The gap is huge and the new big tooth is really pushing up, I'm just praying it will push itself forward and bless us by not needing braces in the future!

Now for good news, my "sister" Kim had her sweet, handsome, perfect baby boy, Tanner, last Thursday morning! He is just a wonderfully healthy baby boy and I absolutely love him. It is such a blessing to hold him and look back at when Caden was that size and realize I am so lucky to still have him here with me. Caden had some serious health issues in the first 4 months of his life alone, not to mention what he's gone through in the past few years. Just holding a baby that I'm so close to and knowing what a miracle a healthy perfect baby truly is fills me with such joy. We are taking dinner to them tonight so we can spend some time with them, and I just can't wait. Kim is such a great friend, "sister", and now mom; I am so happy for her and Ryan, who I also think is an amazing guy :)! We really do love you guys and all of my Gainey family!

That is all for now, hahaha, that should be all for a century, but you know I never run out of things to say! Have a blessed weekend and don't forget to bless someone around you!

thanks for checking in on our Buddy,

Kara

Wednesday, November 28, 2007 2:03 PM CST

We have been the official home of both a five year old boy and an almost five year old basset hound boy for one week now. Caden got to bring Hank home the afternoon of his birthday! He and Hank hit it off immediately and really enjoy each other's company. We spent the rest of the day making Caden's penguin cake, eating pizza with family and friends, and opening presents. Caden is very proud to be five and is sure this means he can do just about anything he wants. The new one is "I didn't ask you if I could do that, I just said I was". As you can imagine that doesn't really sit well with me! He also told my mom, " I don't have to stand right by you, I'm five now so I can go over here by myself". Again, that didn't go over well with me or Gram.

He is taking a huge deal of responsibility with Hank. Hank is a very good dog and is well trained. We have had a lot of fun working with Hank this week and trying to get him used to his new home. The only thing to get him used to now is James! He is quite terrified of James. Just over the past two days we've gotten to the point where Hank doesn't run out of the room when James walks in! He is slowly warming up to James, I just wish it was going a little faster. In the mean time, Caden and I don't mind taking care of stuff on our own.

Are you getting ready for Christmas? This Christmas will be a good one, hard, but good. James is working again on Christmas day! Not fun for me, this is the second year in a row. We now have almost all of our decorations up! It is definitely a fun time of the year, but things will be very different this year for many reason.

Caden has definitely had some recent growth spurts and I can't wait for his 5 year well check on Friday to find out exactly how tall he is now. He is still just checking in at a chicken leggy 36 lbs., but I know he's grown at least an inch in just the last three months! All of his 4T clothes are finally starting to actually fit well, hahaha! It will be interesting to see what the doctor says concerning some of our issues, especially since James is taking him to the appt.

Caden is staying pretty even in most of his medical stuff. We will start the third attempt at medicating his ADHD soon. Hopefully this one will work without the awful side effects. He is having some notable changes in his sensory needs, but we are as always adjusting life to make it easier for him. We are also starting to get concerns of learning problems, he is reaching some awesome goals in some areas, but just can't seem to grasp others that he's been working on for years. I know with all my heart he'll be ready for kindergarten next fall, but am still not sure that he'll do well.

Please keep praying! For us and for others, we have some issues going on within our family right now, but we also have some long distance friends who are getting bad news right now. Caden has a few "caringbridge buddies" who may not be here past the new year, it's not an easy thing to watch or to explain to him, but it's a reality. These families need prayer, and lots of it!

Thanks for all the birthday wishes, Caden really appreciated them and loved knowing just how special he is to so many people! Thank you so much!


Kara

Monday, November 19, 2007 3:37 PM CST

Two days!!! Two days and I'll have a 5 year old! It is so hard to believe that he is so big and getting smarter every day. He even hit me in the face with it this week by getting his first loose tooth!!! He is not real sure about it and doesn't really enjoy us wiggling the tooth so it will probably be in there for forever. He has shown us so much maturity the past few weeks and is really becoming quite the big boy.

We went to the aquarium on Friday and saw the penguins and fish. It was a fun day and Caden had a great time. We ate at the restaurant and let him pick out some fun stuff at the gift shop, a green penguin and a water penguin of course. I think he really enjoyed himself and I know it was a nice day for all three of us to spend together.

Another bit of good news, we think we have found a dog! His name is Hank and his 5th birthday is just a few days after Caden's. He is a nice, trim, lean Basset Hound. He is very loyal and cuddly, and he seems to like Caden well enough. Caden loves him and wanted to bring him home today. James has yet to meet Hank, so we'll see him again on Wednesday and see how that goes. Hank has some issues with men so we'll have to be careful with how he's introduced to James, but I think they'll get along great. Hank is very friendly and passive and has no problem with the tugs and roughness of kids. He is a great find since we know all of his history and health, he comes with a bunch of his stuff, and best of all he's free! We were supposed to be doing this for Christmas, but when something like this comes along you just can't pass it up.

Caden is doing find medically right now. He has a bit of a cold and he wonked his head really hard today. He fell over into a half wall and hit his head right next to his eye. It bulged out really huge and we had to hold him down to ice it, but it went down well and isn't affecting his sight. It looks really nasty though. He is being good at school and pretty good at home. His sensory needs are tough to meet at times, but our new house and the park are really helping with all they have to offer him. His learning has skyrocketed and he is doing so great with his letters and cutting and coloring. He is still behind in many ways, but I don't doubt that with time and patience he'll have very few problems in kindergarten.

I hope everyone has a great Thanksgiving! Please say a word of prayer for Caden on Wednesday as we celebrate his fifth birthday! Thanks!


Kara

Wednesday, November 7, 2007 2:12 PM CST

Well, we had a fabulous Halloween. Caden loved trick or treating, only he kept forgetting about the treats. He actually loved ringing the doorbells, but then would forget to get his candy! So silly, but he really had a great time and did get lots of candy.

He is doing very well right now. I have pulled him off his ADHD meds. He was having major side effects from them. He was way worse on them than he was off of them. The fact that they are not approved for kids under 7 didn't help things. He has been off of them for almost 6 days now and is being very good. He has started eating again and his weight is not going to be an issue now. I know he will not have enough time to gain more before his next doctor appt. but I will convince them he is fine. He is back up to 36 now though!!! YIPPEEEE! He has gotten taller too!

I can't believe that two weeks from today he'll be 5! He is showing me more and more everyday that he might actually be ready for kindergarten next year. He is learning his letters very quickly right now and is even blowing my mind by learning some new letter sounds. Now if we can just get his coloring and writing skills going. He is still not doing well in that area and shows a lot of weakness whether it's muscle or mental. He is gaining a lot better physical abilities and it blows my mind to think how far he's come in the past 8 months to a year. He is getting stronger and more able to do things. I am hoping to get his new Amtryke (hand pedaled trike) soon so we can keep working on those pedaling skills. He loves skating and is hoping to get some big boy skates for his birthday or Christmas.

He is also anxiously awaiting the puppy Santa is bringing him for Christmas. There is no telling him otherwise. He is getting a puppy and his name will be Verde, yes as in "green" in Spanish. I think he thinks the puppy will be waiting for him under the tree on Christmas morning, but that won't happen. With James working again on Christmas and us being at someone else's house that just wouldn't work. We will give him a stuffed puppy with Santa's note telling him where his real puppy is (the animal shelter near our house). We figure this is the best way to ensure we get the right puppy for our family and for him. In fact, I am hoping it's not a "puppy" but a house broken dog. All that matters is that it will be Caden's puppy and my new baby and I can't wait to see the smile on his face.

My mom thinks I'm crazy for wanting a dog, but I am almost as excited as Caden. He is really doing well now, but you never know what tomorrow brings and he has already been brought through a lot. He needs a puppy to love and a playmate.

Please keep praying for him, right now his main pressing issue is the ADHD, sensory issues, and fine motor skills, but they really take a toll on him every day. Please send those cards to our friend Gabbie at www.caringbridge.org/visit/gabriellehughes her birthday is getting closer and nf is hitting her so hard, this is what she wants for her 13th birthday. Please keep visiting the sweet warrior with an amazing outlook on life, Kennedy at www.caringbridge.org/visit/kennedy1 .

Thanks for the support and the love!

James, Kara, and Caden the boogie-headed, green loving, penguin obsessed, too silly, almost 5-year-old boy who is stomping all over NF

Tuesday, October 30, 2007 2:36 PM CDT

It's been way too long in between these! The computer is still over here at Mom's so it takes a little more effort to update.

I have two quick favors to ask of all of our friends and family. The first is for a young lady with NF. Her name is Gabbie and she turns 13 pretty soon. Gabbie has had a really tough year and has surgeries to remove tumors and fix problems caused by tumors and has started chemo again. Pretty much all she wants for her birthday is a BUNCH of cards. If you will visit her webpage at www.caringbridge.org/visit/gabriellehughes you will find her address. If you could send her a card that would really bless her and her momma. Caden and I are going to work on making some today!

The second is for another young lady. Her name is Kennedy and she lives in Colorado. Someone else told me about her and she is a really neat kid with a great mom and an awesome family. In the past few months she was diagnosed with bone cancer, had several ribs removed, started chemo, and lost her grandpa to cancer. She has been getting a kick out of "paying it forward" to other kids and is just a blessing to hear about her fight for life and the joy she has during her battle. She has a goal of having 1 million visitors to her webpage in a year and she probably will. It would really be great if some of you could visit and even drop a line in her guestbook. You can hear the excitement they have in life and this is one of those small things you can do to bring joy to the life of a child with cancer, please, these are really very small things.

On to the Buddy meister, or as he is being called lately, our hood rat. It is finally getting cool and he's wearing his fall clothes, which are WAY TOO BIG for him. He looks like a lil gangsta! His pants sag and his shirts are down to his knees and it's just very funny, now he's taken to wearing knit hats that have a bill on them so it looks that much funnier!

He is very excited about Halloween and will have his first trick or treating experience tomorrow with the neighbor girl. We went to Boo at the Zoo last night and it was breathtaking. Last year we pushed him around in a wheelchair, what a miracle! This months events have been so good for my heart. Taking him to the pumpkin patch and putting on his costume without that huge cast and without a wheelchair is a feeling I could never describe. We are so blessed to be able to watch him walk, and even more so to walk on his own leg without casts or braces. God has given us so much in this alone. He is indeed dressing up as Stitch again this year, I guess I'm getting my money's worth. But like I said, it does me good to see him in that costume this way.

There is more to say, and some prayers and issues we are needing help with, but if I go on much longer I'll be late to get him from school. Just continue praying for his behavioral issues, learning struggles, and speech problems. They all appear to be getting worse when they should be improving or stabilizing.

Thanks for the love and support. Sorry if you've been waiting for me to respond, I'm a little distracted right now! I will get back to you all, I miss my friends so much!


love and thankfulness for all we've received,

Kara

Tuesday, October 16, 2007 1:55 PM CDT

Well, we are all in our new house. The wedding went by with just two small problems. One guest got stung by a bee and one of my little attendants passed out twice before the ceremony! Yikes, I'm just glad noone told me until after it was all over. We had lots of friends and family there, and Caden loved eating all his candy! He was so handsome and did so wonderful.

He even did great while momma and daddy were on our trip. We missed him like crazy and tried to call home everyday, but weren't very successful since Buddy won't talk on the phone. He got LOTS of prizes and loved hearing our stories. Boston was beautiful and we can't wait to go back, with Caden of course.

We are working super hard to get a normal life routine going at our house, but it's so hard with so much to be done and so much that we don't have. We were very blessed by our loved ones with many gifts, it's helped a lot and we are thankful for every one. But, a toaster isn't much good when we don't have bread :). We are slowly getting there and Caden is being so good through all the mess.

He had a rough morning this morning trying to figure out where things are now and how to do life in a new place. We spent a good bit of play time together this morning and are hoping to have some more tonight.

He has been so good at school and right now that's his "consistency". He's really anxious to get there each day for a schedule and time of day that he can rely on.

He is feeling much better and just has a small cough left. He is working really hard on keeping his voice down and trying to understand how to help the vocal nodules get better. He is starting a new ADHD med tomorrow and we are hoping it will be "the one". He had to be dismissed from Physical Therapy because there is no way to tell if he can't do things or is struggling to comply because of the behavior issues. He is scheduled to start back in January and see where things stand then. He is currently testing with the abilites of a child between 37 and 46 months, not good considering he is 58 months old:(!

The computer is not hooked up at our house yet, so updates won't be as frequent for awhile, but please keep checking in on us and praying for Buddy. He still has so much to overcome.


Kara

p.s. not much change in our friend's dad, please keep saying the prayers for this family they are so dear to us.

Thursday, October 4, 2007 10:21 PM CDT

Well, the countdown to wedding time could officially be done in hours! Caden is excited but seems a little unsure of what changes are to take place. He is ready for Momma's trip and has a huge assortment of special snacks and prizes waiting for him. He even gets to spend one day with his good school buddy, Sarah.

I am getting worried though. His fever came back after a two day break and his cough is getting bad. It's changed from being an occasional dry cough to being a very harsh cough that's coming very frequently. He's been very irritable the past couple of days and his OCD is really giving us a kick. He's being tough through it all though and still being very humorous. He went to the store with me this afternoon and was just being very silly. He played ring around the rosy around the cart, hopped up and down the aisles like a frog, and was generally one of those kids you see in the store that you really wonder about. The best conversation had to be this one: "Momma, I want to wear my Stitch costume not just at Halloween" I guess that wouldn't be a problem "can I wear it when I get home" maybe after your bath "every night" no, just some "are lizards scared of stitch" and then it went on with lizards and stitch and what he would say to lizards and what he as stitch would say to lizards. He was so talkative and so humorous. It's so great seeing him get really excited about something like this.

He has a long week ahead, as do I. I will be in Boston 'til next Saturday night so I probably won't update again until next Sunday. Please say prayers that everything goes well on Sunday, Caden does well without me, and our trip is safe.


Kara, soon to be Mrs.

p.s. can you believe James said no to going to the Boston vs. Angels game that will be playing while we're there! I mean the tickets were only $300, unbelievable, I will probably cry the whole night of the game ;)! And can you believe the only thing Caden wants me to bring him back is a penguin :)!

Friday, September 28, 2007 2:01 PM CDT

Please say some prayers with our family. A dear friend of ours is in a hard place right now. We were very much looking forward to seeing them at our wedding. And she was going to be a very important part of the set up and take down of both rehearsal dinner and the wedding. However, God has different plans. Her father has fallen very ill and is in the hospital. There is no way to know what will happen with him in the next few weeks and even he isn't thinking very positively about the outcome. From what I understand she isn't real happy about what is happening, who would be, with either her father or our wedding. We will miss her, but know that God has His own perfect timing and doesn't always fill us in. Please pray for all of them. I'm sure the range of emotions is very high and will be for awhile. Please also pray for her father and the rest of the family. Your prayers in this mean a lot to us and Caden. Although we don't see them much, Caden knows they love him and care a lot about him. We will miss them and I am very sad, but I am putting everything in God's hands.

We love you guys!


Kara

Tuesday, September 25, 2007 2:26 PM CDT

Well, it was supposed to be a very busy day for me. I guess God had different plans. Caden only had one session at therapy this morning due to some meetings at the main hosptial rehab center. I was supposed to go to the follow up meeting with the psychologist at Scottish Rite. And James was supposed to be working on the new house today. Well, there was an explosion in Haltom City, where James is a firefighter/paramedic. James got called in to work and that left me in a jam for getting Caden home from school so I cancelled the appt. So here I sit doing work that wasn't going to get done today, but hey that's not so bad.

James on the other hand went from busy to super busy. Please pray for James and the other guys, it will be a very long day for them all, this was a very large chemical related explosion. It seems as though Haltom City is a very busy place. With the floods and tornados in the spring, the recent tragedy of the mom burning her little girls (the youngest passed last week), and now this explosion. James has seen a lot more this year than I think he expected to see for a long time. Firefighters definitely see a lot of things nobody should ever see, but they pick up the pieces and then come back for more. They definitely deserve all the honor and respect they can get for the jobs they do. Caden has been really good so far about understanding when James is gone, but I know it's hard on him. He was definitely looking forward to James picking him up today, I'm not sure how happy he's going to be when he sees boring old momma there! But just as the firefighters, Caden will pick himself up and move on. Just like he's always done. He's such a brave strong boy and I will always be proud of him!!!

Say prayers today for Haltom City and everyone working the explosion. I will update soon. The rest of the week should be pretty much our norm.

A real quick funny story before I go. Our neighbors moved in May and we have been storing some furniture in their empty house until we move or they sold it. Well, we are getting ready to move and the house has been leased. So James was going to move the furniture today. He went over and tried to unlock the door to no avail. The settling of the house made it impossible to unlock. Well, the door has a mailslot so James stuck his arm in to unlock from the outside, but couldn't quite make it. Caden's arm was the perfect size though! That's right, Caden had his first case of breaking and entering today! We held him up and he stuck his little arm in and unlocked the door for us. We did make sure and tell him that that isn't okay to do unless you know you are allowed in the house and can't get in with the key. He was quite puzzled, but hey it got the job done! Have a great day!


hoping, believing, and praying,

Kara

Monday, September 24, 2007 1:28 PM CDT

Today is St. Jude day at Chili's. All of their profits go directly to the hospital. Along with all the money donated when you color a chili pepper. So many kids are treated at St. Jude and millions more are treated by protocols developed by St. Jude. I have had the immense blessing of watching several children as they make their journey through their St. Jude protocol. Some of them have made it and some haven't. There is hope for a cure for childhood cancer and St. Jude is doing so much to find it. Please eat at Chili's tonight and help raise money for St. Jude and all of the precious lives they touch!

p.s. Caden is doing good. He had a blast with his best buddy Malia on Saturday. All his appts. are on hold until after the wedding and the trip to Boston! He is doing well, but it's becoming more and more obvious that things are not well with his throat. We will keep working with him and believing that God will continue to watch over him.


believin, hoping, and most of all praying,
Kara

Friday, September 21, 2007 5:12 PM CDT

Unbelievable! Two months from today my baby boy will be 5! I have no idea what we'll do to celebrate, we have NO money. I'm sure we'll figure something out.

Caden had his ENT appointment today. It went pretty well. The doc was familiar with NF and the problems it can cause. He was very cautious and took great measures to make sure everything is okay. Caden had xrays to check his sinus cavities and that area. He'll go back soon to have his hearing checked and have a look at an area of concern. He even did a scope today! That's right, right there in the office Caden had a laryngoscopy. It took me and two nurses to hold him to administer the local anesthetic through his nose and then again later to do the scope. He screamed so hard and even had tears falling. It was heart breaking, but what might even be worse is that it didn't cause me to flinch. It's just another part of life now, like brushing our teeth. The doctor was funny, when Caden did a really high pitched scream he said well we know he can get the noise out just fine! Hahaha. But we already knew that wasn't a problem. So the results are that Caden does indeed have vocal nodules. That's the bad news, the good news is that it looks as though none of his problems are NF related (i.e. no tumors). There is a problem with one of his tonsils, I think the right side. The doc isn't really sure exactly what is wrong, but there is some sort of irregularity that he feels does need to be watched very closely. I am happy with what was said and that this new doc is proactive. From what I understand this means we will continue with speech therapy and just work harder on dealing with his vocal nodules and will likely have his tonsils removed in the near future. I can definitely deal with this!

Have a great weekend and pray for my sanity. I will have two four year olds all day tomorrow! That is on top of all the wedding prep I have to do and other stuff. YIKES!!!!!

rejoicing,
Kara

Wednesday, September 19, 2007 1:47 PM CDT

Okay, I need you to do something. Look at the date of this entry. Now scroll back up to the top of the page and read the "about Caden" section. Does anything look familiar? Maybe today's date? Go ahead, look again.

Yep, today is the one year anniversary from Caden's first bone graph and rodding surgery. One year ago, almost right now, we were heading out of recovery and transferring Caden into his room. He was in so much pain and it absolutely broke my heart. The only thing that would calm him down was me in the bed "holding" him. I was so scared to hold him and there were very few ways I could hold him. He had a full leg cast on and had the incision on his back too. With every move I made he would cry out in pain. I think we had 10 pillows in that bed with us. I sat in that bed with my baby on me for hours. Even despite the pain he still was willing to talk and even play a little. I remember how funny he was with how he wouldn't talk to the doctor when he came in. He would grab the box from whatever movie he was watching and hide behind it. He knew his voice and didn't like it. I'm just glad that's changed. Caden went through a horrible circle that day. He needed to eat, didn't want to, and every time he ate or drank anything he'd get sick. They ended up adding additional meds to his iv pumps. Then we had the "pottying" scare. Caden hadn't been to the bathroom since like 8 that morning and had had tons of fluids pushed into him all day. We had to make Caden pee in thirty minutes or they would put a catheter in. Oh, how awful that was. I had to leave the room when they picked him up to put him on the potty chair. He was screaming and so angry. The movement in his hips and the change in blood flow to his leg was hurting him so bad. The next day was a big one for Caden. He got his morphine pump removed and started getting pain meds through just the iv. He also got to leave the room! They took him to PT for a while to try and learn to walk (that was not fun). Then, he got to go downstairs in the wagon and have his picture made with the big shots, which then made it into the calendar.

We had so much support from everyone and had tons of visitors. It really made that first inpatient stay much easier. The entire process was not easy and definitely not fun, but we made it through (and then again less than 6 months later). Caden was such a trooper the whole time and for the most part remained himself. The hardest part past surgery day was being "stuck" at home for the next 6 weeks until his swelling was gone and his open wounds could be covered. Getting him to walk wasn't so easy either. He finally decided to try a lot harder when he went back to school. What a brave boy. He knows today is a special day, and we are calling it our yay, no hospital day! He understands where he was a year ago and what happened to him and where he is now. What a true miracle it is! He is at school right now, where he belongs, and he took cookies to celebrate this day with his friends and teachers.

Say a prayer of thanks today for Caden's miracle! Also say a prayer that his bone keeps on growing and getting stronger! Thanks for celebrating with us today,

Kara

Monday, September 17, 2007 10:33 PM CDT

All I have to say about our life since Friday, exhausting! A good exhausting though. I took the day off of work and kept Caden out of school on Friday. We spent the ENTIRE day at Grapefest. We just hung out and played and laughed and pretended like life is perfect. Caden loved walking around (read: being pushed in the stroller he's way outgrown). We walked from one side of Grapevine's Main Street to the other at least six times. He loved the bounce house and he even road in the teacups! It took all day to convince him, but he really enjoyed them once he got on. He got a sword that lights up and all kinds of other free junk. The best is that people kept walking up to us and saying, we're leaving could you use the rest of our tickets! So we got free lunch! Even better is that we ate lunch from the AMBUCS booth. They make the special needs trikes that Caden has at home and rides at therapy. All their proceeds from their booth goes to help make more bikes! How cool is that? Caden got his favorite, a corny dog, and helped other kids get bikes! We ate dinner at the local italian cafe and had what is possibly the best gelato ever. It felt a little odd pushing my son around while I was drinking a wine-a-rita (wine made like a margarita, YUM) and eating peach champagne gelato (super YUM). Although the alcohol content is so minute in both of those, it still felt funny! It was a very fun day though and I don't mind the bad that came after, allergies, migraines, and exhaustion.

And talk about fun! Challenge Air was awesome! Challenge Air does flights in many different areas, if you're not from here and have a "special" kiddo, you really need to look into it. Caden loved the flight. He wasn't overly enthralled, it seemed to be almost calming for him. He did love hearing the control tower and pilots talking in his headphones and hearing himself talking to me. I even enjoyed my first time up in a small plane, a four seater. The food that was catered was good as well. Caden had a great time and I had to convince him to leave. He received a certificate and his very own wings. I think he will have no problem doing it again.

He had an okay day at school today. I had one of my worst migraines ever so things were really different for him. I had to leave work early and spent the rest of the morning and most of the afternoon in bed. Considering that Momma didn't do any of the things I normally do for him, he had a pretty good day. I was just glad James was home today. I could not have done it on my own today.

The next few weeks will be very, very busy for us. Please be in prayer as Caden has a lot of transitions starting. He is doing very well with the talk of all the change, but who knows how he will do when it actually happens.

Caden finally got a good appt. with an ENT. He will go Friday and hopefully they will have some good answers for us. His voice was even worse today, but he was also pretty whiny. I am just hoping they will take me as seriously as everyone else has so far and we'll get Buddy taken care of.

Sign the guestbook! We are missing all the notes letting us know who's behind us! Thanks Tara, we need to start emailing again, I miss our "talks"!


in His ever-powerful name,

Kara

Thursday, September 13, 2007 9:57 PM CDT

So, psychology didn't really take us far, but we have more appts with them in the next few weeks so maybe those will go farther. The poor sweet lady in family services was half amused and half horrified at the situation I WAS in with Caden's throat issues. She was so sweet and really tried to help.

And if you caught on to that, I did indeed said the the situation I WAS in. As in, today it got fixed!!! This was one of the very few times I have gotten full support and concern from the nurses and doctor. The nurse was insistent that we need to be seen no later than October by a specialist. The doctor even started writing notes to get "his people" (hahaha) on it. He said he knows the doctor had places for Caden before then, and if not his referral coordinator WOULD find us a doctor who would get us in soon. Sure enough, the referral coordinator called me late this afternoon with a doctors office to call. I called as soon as I hung up! Sure enough this doctor is willing to see Caden and at least attempt to help us. The receptionist didn't seem to know what I was talking about or seem real sure, but she talked to the doc and he told her he would do it. We have an appt. for NEXT FRIDAY! Uh, yeah, 8 days, not 4 months, that's a little more like it. They even faxed me the paperwork immediately, that's some kind of quick response! I finally feel like we are at least on the road to getting some answers. Caden has spent the entire day making all kinds of odd sounds and doing weird throat stuff. He even asked me what was inside his throat, I think he meant body parts, not tumors or nodules or lesions, or whatever else is in there! He fully understands that something isn't right and that is making it that much harder on me. Now if only we can convince him to stop doing the things that are destroying his vocal cords further.

He didn't do well at PT today, but had a good day the rest of the day. He had a blast tonight. He played outside while James grilled. Caden has a trampoline that only sits about 2 feet off the ground and is about 4 feet in diameter. It's perfect for him, but he hasn't used it since his first surgery, for obvious reasons. He was awesome! He jumped and jumped and jumped! He was so happy and did such a great job, he never even fell once. It was really good for him and good for me to see. Until he came back inside and tracked mud from one side of the house to the other :(. Oh well, it vaccuumed right up, a small price to pay to see a miracle!

We have a fun weekend planned with Grape Fest tomorrow, our Challenge Air flight Saturday, and back to our deranged form of normalcy on Sunday! Please keep praying for Caden and all the others out there! And PLEASE sign his guestbook! We love knowing who's out there checking in on us and we love the notes, even if it's just to say you were here.


with love and thanks,

Kara

Tuesday, September 11, 2007 11:51 AM CDT

It's official! Caden has begun medication. Sadly, it doesn't seem to help him much. I don't think the dosage is strong enough, but also don't think they can go much higher because he's so tiny. He had a rough day of not eating yesterday, which is a side effect we can't afford. Today he is back to his piggy ways, "i ungy" every 10 minutes! The behavior is definitely no better. His teachers seem to think he did better on keeping on one task for a longer amount of time yesterday. I also saw a dramatic mood change in the late afternoon to early evening, which was most likely the meds leaving the system. So we know it is affecting him some, I'm just not sure it's enough. We see the new psychologist tomorrow. Maybe she can figure things out for us too!

The next problem is Caden's throat. It has long been known that Caden has an oddly deep, raspy voice for such a small boy. It's quite cute and is brought up often, even by strangers. Well, the concern has been put on the back burner because the problem that was thought to be is odd for a child to have and very difficult to help a child with. Now his speech therapist is very concerned as he seems to be getting worse. The other high concern is that Caden has been clearing his throat and trying to force bursts of air out quite frequently. When asked to stop he says, but my neck (throat to a silly 4 year old) hurts. Caden also speaks quite loud, which would only make any issues worse. His hearing is fine, so we think he may be trying to force air out. We have a new ENT and got Caden set up with an appt., in JANUARY! Yeah, that won't work. We are looking into other options, especially outside of the hospital network. The problem is finding someone who takes state insurance who will do pediatric vocal issues. Please pray the doctors will work with us and we'll get answers quickly, preferably before permanent damage continues. I refuse to put into words what I think is going on in there, but for those of you who know what happens with NF, well, you know what I'm thinking.

A bit of good news, Caden and I get to fly in an airplane this Saturday! It will be Caden's first time ever and my first time in a small plane! There is a program called Challenge Air that offers free flights to kids with chronic illness and disabilities. Caden got a spot! We'll enjoy a day full of fun and food and flying. Pray for our safety. I'm just praying Caden will actually get on the plane and have fun.

Have a good rest of the week and God bless,

Kara

Tuesday, September 4, 2007 12:48 AM CDT

When I delivered Caden and he started out life struggling just to breathe and live, I knew we were in for a wild ride. I never imagined it would amount to what it is. When we had four doctors appointments before he was two months old, I knew we wouldn't be a family to just see the doctor for our well checks. But I never would have thought doctors and hospitals would be a part of our day to day life. In under a week my four year old son will be on a level three narcotic. A medicine that he may have small "breaks" from, but will be on for most if not all his life. No, it's not what I pictured for his life, but at this point it's a small piece of the puzzle that will get us there.

Mom and I took him with us for some wedding shopping yesterday, as though we have another option :). It was a great insight for mom as to what any kind of outing is like with Caden. He was at his more severe level of his problems. We then thought, let's do something fun for dinner with him. Well, Rainforest Cafe was right there, and what's more fun than that? Caden's answer, ANYTHING! He didn't even last five minutes. Seriously, the waiter hadn't brought our drinks before he started screaming, crying, hiding on me, and holding his ears. We left. It took him about ten minutes after to get over it all. "It wealwy sared me" is all he could say. Oh well, I'll take Corner Bakery anyday!

He had a rough day again this morning. His Occupational Therapist was in total shock. She had to really push to get him to do anything. We are also starting some new exercises for his speech therapy. He is having a really rough time right now with a lot of neurological processes, but we are pushing through. I have about a trillion phone calls to make sure the ball keeps rolling in the right direction. Please say a prayer for him today, as well as the many many others who are struggling through life.

Sign the guestbook!


Kara

Sunday, August 26, 2007 10:33 PM CDT

Is everyone ready, I mean sitting down ready, this is so huge. Caden's first surgery was mid-September of '06, the second was the beginning of March '07. We have been going to the hospital at least every 4 weeks for a year now. Each time we do x-rays and whatever other clinics needed. Well, last Wednesday the surgeon decided he doesn't need to see Caden for, drum roll please :

AN ENTIRE YEAR!!!!!!!!!!!!!!!!!!!!!!!!

Yeah, you heard me right! He doesn't want him back for a whole year! I just might go through withdrawals, if it weren't for the neurology and psychology appts there. His bone hasn't completely come together, but it is healing nicely. The rod looks strong and well anchored. You can definitely see all the spots where bone is growing. I guess we can assume that it will just keep growing more and more. I am a little nervous, but also excited that we may actually be completely past this phase of surgeries.

On other news, while swimming Wednesday night Caden put his face in the water and started swimming around, in his life jacket of course. This is a huge step for him. He was so cute, he thinks he's diving, but his entire head doesn't even go under! Oh well, I'll take it! He also tried some new food and really liked it, thanks Auntie Kim and Uncle Ryan it was a big day for us!

Then, tomorrow is the first day of school! He is so excited. I am happy to have some "free time", but really nervous. I don't want him to be the kid who causes all the problems. He does do better at school than any where else though, so maybe he'll be fine! That and he LOVES Ms. Amy and Ms. Linda and was so sad when they weren't there when we went to register the other day. I'm hoping he'll be too excited to be there that he won't get in any trouble. Good luck with that one, huh? Anyway, good luck to all those who also start school tomorrow, especially the teachers.

Thanks for checking in on my crazy little man. Please pray for him as he goes through the transition back into the school routine. Sign the guestbook!!!


Kara

Tuesday, August 21, 2007 8:37 PM CDT

I can't believe over a week has passed since I updated last! Caden's art show opening was good. He was so excited to show us all his work. There was a lot of green!:) We've done a lot of "normal" stuff these past few weeks. He's been able to swim with his friends every Thursday and go to swim therapy on Saturdays. He is doing great in the water and still loves it. I even made him swim on his own this last Saturday, he was not happy, but he did it! We went and saw Surf's Up with his friends today. We've just been doing really well at mixing in those normal kid days in between the really not-so-normal kid days. He had another bad behavior "episode" at church on Sunday. Since then he's been pretty good. We are very aware that there are some sort of changes going on inside of him. That is really scary! With NF so much is possible, I can't even go there with what is always on my mind. I don't think we are "growing" anything up there, but something is definitely happening up there. Just plain scary! Thank God for His hand guiding me through everything!

Caden has his check up with his ortho. surgeon tomorrow. He'll have x-rays and then go to clinic. Yea! No cast removing or plaster clinic! I will never be bothered by these appts. as long as they don't include those two stops! We will follow with a trip to his Auntie Kim's house for swimming and dinner!

Caden got some new therapy clay today and it really seems to be great for him. His sensory system has been out of whack lately. He is so loving being able to pull and squish on the very firm clay.

He did get his new orthotics and got some new tennis shoes to wear them in! He loves them both, thank God! They really seem to work well. They hold his legs up so straight and he falls alot less when he wears them. Some of his bruises are actually starting to fade away! We continue to have therapy each Tuesday and Thursday morning and Caden starts back to school Monday morning. Please pray for him and his teachers, as I feel it could be a hard beginning to the year.

Please sign the guestbook!


Kara

Saturday, August 11, 2007 10:51 AM CDT

Well, the last two days have been a little better than Wednesday! Actually, Caden did really well at physical therapy on Thursday and did okay at speech. We swam some more and he swam the whole time with just his life jacket, no swim ring! He did great and had a blast. He had a rough morning Friday, but I think he was just tired, he took a 3 1/2 hour nap!!! He rocked in swim therapy this morning and was used as the example many times.

Now for the biggest news! Caden's in today's paper! Check out the Saturday edition of the Fort Worth Star Telegram in the "Your Life" section. The front page of that section has a picture of Caden's buddy Sammy and then one of him with his friends while they're painting. The very first part of the article talks about him, then later on page 10 it says a very little bit about nf. We bought several papers and had a celebratory breakfast treat. You might could find it online, but I don't really know!

Okay, I found it :). Here's the address that leads straight to the article: www.startelegram.com/home/story/197434.html

Check it out!

We have a busy day so I better get going! Please sign the guestbook.

Kara

Wednesday, August 8, 2007 12:23 AM CDT

Well, I updated yesterday after our neurologist appointment, so please go to journal history in case you're not caught up. This morning was beyond awful. Caden and I are both miserable. Something has to change and quick. He sat there in that huge playroom at work by himself for almost three hours. No one even wanted to come near him. He made one of his new friends cry and now I'm afraid that boy won't play with him anymore. Think of the worse thing your child has ever done to a friend or you while in their preschool years, Caden did that plus more! It got to a point where I couldn't even punish him anymore. I cried the whole way home, and now even though I'm not physically crying, tears are still rolling out of my eyes. I feel I have no choice but to call the neurologist back and say send us a prescription. I can't help but think there has to be something more for Caden, but after this morning, I feel lost and helpless. I am really having to rely on God right now, as I do always. I will hopefully be able to update again soon with any further news, but now we're off to art therapy.

Please say some extra prayers for Caden today. This sweet boy needs some peace in his mind and body. Thanks!


relying on God's guiding hand,

Kara

Tuesday, August 7, 2007 12:03 AM CDT

It has once again been another crazy week. Caden's Gram's Aunt had a hemmorhagic stroke last week. We made a last minute decision Friday to leave for Arkansas on Saturday to go and be with the family. The trip was fine and Caden did very well. It was nice to see some of the family we haven't seen in a very long time. She walked on into Heaven this morning with her kids by her side.

We came home Sunday evening and got started with this week. We enjoyed some swim time with Emily and her family yesterday. Caden was so brave. He wore his life jacket and jumped into the pool and went down the slide all by himself! He had a fun day and did very well.

Caden had his follow-up with the neurologist this morning. It could have gone better, but was really a very good visit. His neurologist is so honest and really takes his time with each patient. We are going to see a new psychologist. Caden needs some major behavioral changes. The neurologist is willing to give us more time to try behavioral health treatment, but says that medicating for the ADHD is pretty much inevitable. We go back in 6 months again and if nothing has changed, we'll go on medication. That is about all we got out of it this morning. There was some discussion about the absence seizures, but more time and observation is required before we medicate for that.

Caden has physical therapy and speech on Thursday. I am still waiting to hear about his orthotics, I guess I need to make some phone calls. He goes back to Scottish Rite for his ortho. exam at the end of the month. The next few weeks should be crazy with appts. for both Caden and me. Please keep him in your prayers as we try and get our routine back to normal.

The house renovations are well under way. We have a few projects finished, and a few started. There is just a lot to do. Oh yeah, and the wedding is exactly two months from TODAY!!! A big ole YIKES goes out on that one! So much to do! Please sign the guestbook. We love hearing from all of you, especially those we don't get to see as much as we would like, basically all of you!


in Christ's love,

Kara

Wednesday, August 1, 2007 7:42 PM CDT

We recovered from last week, mostly. Caden, well what can I say, he's Caden. Just over the weekend we had one of his Sunday school teachers ask how she can get him to obey and behave! My Mom told her, don't we wish we knew! His out of control behavior has been even more out of control this week. He threw food around a room one day, he hit and kicked another kid, and he's just generally been throwing an all out fit over everything. The good news is it's been well over a week since he has woken up with wet "nite-nite" pants! That alone is huge. I guess one step forward, two steps back for us! I was a lot more generous with discipline today and a lot less giving of warnings. Too bad it didn't help :(.

Caden has his first physical therapy session tomorrow. I am really hoping we will start seeing some results soon. His gait is so awkward. He hates taking off his shoes and I think it's because of the support they give him. We are going to have to find him some really good shoes for the fall. I am hoping to have his shoes inserts back within the next week or two. We will take his new shin guard with us to P.T. tomorrow to show them what the orthotists did. I am still just going nuts over the thought that we have not only an orthotist who's treated NF kids before, but also a physical therapist. This is just beyond great news.

The Fort Worth Star Telegram (newspaper) came to The Art Station (art therapy) today. They interviewed me and two other moms. They got some pictures of the kids and their artwork and will be doing an article on The Art Station soon. I will let everyone know when it shows up and if Caden is in there, or if you get the paper, be looking for it and let me know in case they forget to tell me! Caden only has 2 more sessions and I am so sad. I was really enjoying him being there, he liked it too. Although, there will only be a week between it ending and school starting. Which, I am also looking forward to.

Amy and Linda, while I know you love the kids, I'm sure you're not ready for school to start back up. I, however, can't wait! I have so much to do and it will be so much easier without the human torture child being around ALL DAY. Having a few hours will be nice, I'll miss him, but it will be nice. This summer has been far from normal. We have barely done any swimming, normally we swim 4-5 times a week. We haven't had many playdates either, most parents are scared to have the boy with a cast, behavior disorders, and seizures over to play! He's a lot to handle, I love every bit of him, but for others it's a bit harder. It has been really hard to watch him as he slips farther and farther away from where I know he should be. He keeps getting smarter and smarter, but at the same time, he isn't catching up on social aspects or abilities that he's always been behind on. He has a good loyal friend, Emily, who is an angel to me. I really love that girl. She is so kind to Buddy and really knows how he works. She was so awesome at Vacation Bible School last week. She knows how to get him to do what he's supposed to do and she's so giving, always. She is a huge blessing to him.

I think that's enough for now! I have a lot to do, and I need to pull "scooby-doo" out of the bath! I have a feeling getting ready for bed will be interesting tonight as it is many nights, getting a "dog" to do as told can be so challenging. You have to play along, but being firm when someone is just that darn cute is almost impossible. I love this boy and thank all of you who love him as well and are so willing to not just put up with his challenges, but work through them and around them. He has so much love and happiness to give! Please keep him close these next few weeks as we start to settle back into our school year routine.

Please, as always, sign the guestbook!


loving His everlasting mercy,

Kara

Friday, July 27, 2007 1:42 PM CDT

Wow, what a week! Our schedules have been jam packed this week. Caden and I were at Vacation Bible School every morning. I think this week gave his teachers a pretty good idea of the behavior issues I deal with everyday. He was actually pretty good. He remembered the stories and activities and could tell me about them with some prompting. That in itself is a huge accomplishment. He had a great time and best of all it was all spent with his best friend Emily. I had a good time as well. I directed the crafts for the week, I had great helpers and most of the kids were really great too.

On top of this we had tons of appointments. I cancelled Caden's therapy sessions so he wouldn't miss out on the fun stuff. He still went to art therapy and seemed to have a great time again, I don't know how they do it! Caden also got his custom fitted shin guard yesterday. He really likes it and refused to take it off yesterday. He will wear it when he is playing sports and doing other highly active things, like the playground, riding bikes, and stuff. It is made of a very thick padding that they use on the inside of orthotics and stuff. It covers the entire front of his leg and attaches with velcro straps. It is green, blue, and black. Our new orthotist is so wonderful and had many different ideas for if this one doesn't work. His shoe inserts should be ready for us very soon. He will start physical therapy next week and will also be picking up another speech therapy session.

Caden has been incredible while we work on the new house. He is so content to just sit and watch movies and let us work. He has been begging for the What's New Scooby Doo Season 2 DVD and I think he will get it with as good as he's been while we work. We have painted a built in desk and bookshelves, the kitchen, some of the laundry room, and are preparing the cabinets for painting! And that's just the start of it all! There is so much to do, but I know we'll get it there eventually! We have been continually blessed by our family and friends and I know it will only continue!

Please sign Caden's guestbook and continue to pray for him as each week brings its own new struggles.


with God's great love,

Kara

Monday, July 16, 2007 12:12 AM CDT

I just wanted to add a quick update after Caden's physical therapy evaluation today. It went so well! She spent over an hour viewing him, examining, talking to me, and playing games with him. She was very thorough and seemed to know exactly what to ask about and how to anwer my questions. She's also seen NF patients before. She said because of her experience with these kids that he will always be a long term patient. She will evaluate him at least once a year, but it will most likely be twice a year! She made a game plan and explained it well to me. She even went ahead and gave us stuff to do before we get on the schedule in a few weeks.

He has a good bit of weakness in that leg and we'll do a lot of work to build it back up, we'll go twice a week for the first few months. The good news is that she was impressed with his range of motion in his ankle and foot, his ankle is permanently fixed, it can not bend because of the rod. He is using the wrong muscles to move his foot, so we will have to work on that, but she has some great ideas on how to do this.

We also have a rx in to his doctor to get him some shoe inserts. They will lift the arch of his foot up for support and force his legs to evenly distribute the weight between the bones. She also thinks the orthotist can make him a shin guard of sorts. It will protect and support his leg while he plays sports. This will enable Caden to play teeball or soccer or other things without us worrying as much about the very high risk of damage to his leg. We should get an appointment to make these orthotics within a week! This is a huge step forward to getting Caden back to "normal".

We were also thoroughly blessed by some friends last night. We have a friend who has a painting business who blessed us with tons of paint for our new home. We went over there last night to get it and it was so overwhelming. The paint just kept coming and they mixed us such beautiful colors. When you pray please lift this family up to God and thank Him for the blessings they so kindly poured out to us! Their treasures will be great in Heaven!

Have a great week! Please sign Buddy's guestbook!


praying for more miracles and thanking God for the one's we've been given,

Kara

Friday, July 13, 2007 2:11 PM CDT

Well, another week full of running around and here we are. Caden got to go back to his swim therapy class on Saturday!!! He was so excited and James said he did really well, we had a wedding and I couldn't take him and get ready in time! He was a very happy boy about getting to swim again and even more happy when he got home and Papa Joe, James' dad, was here to stay with him. The wedding was nice and plenty of fun. We spent the rest of the day at the new house. Cleaning and fixing and making plans for projects to get it fixed up. Caden has been so good to let us work over there. The air is out and can't be fixed for another few weeks so it is sooo hot in there. He just goes to his room and plays with his toys. We took his pop up tunnel over there and he has a blast dragging it from room to room to crawl around. He went outside with me while I trimmed some bushes and stuff. He had so much fun. He found a snail, two toads, a baby lizard, and a garden snake! He is loving all the nature, except the stinking swarms of mosquitos.

Caden started an art therapy class on Wednesday and loved it! I made a new friend and really enjoyed her company. Caden had a hard time leaving his art and his "portfolio" there. He wanted to take it home and it took a lot of work to finally convince him to leave it. It will be nice having a few hours each week to have some peace and quiet and alone time.

Thursdays from now on he is going to be swimming at his friend Emily's house. He did really well yesterday after a rough start. His momma was cruel and threw him in the pool with arm floaties, he freaked out and we had to pull him out. Once I got him in a pool ring and eased him in, he was fine. He actually spent most of the time in the pool by himself, I sat on the side with my feet in. He is so excited about going back and swimming with his friends some more. Katsie, he can't wait to go to NRH2O with you, hurry and heal up!

We have lots of things to get done this weekend and next week, the wedding is really closing in and we have tons left to do. Hopefully I will find time to update soon! Please continue to pray for all those out there that are suffering! Please leave Caden a Hello in his guestbook, we know you're visiting, we just don't know who you are! I hope to see some of you soon, ;)!


love and hope in Christ,

Kara

Thursday, July 5, 2007 9:43 PM CDT

I can't name a whole lot that we've done and yet we've been so busy. I had a quiet and okay birthday on Tuesday. I did get to see my buddy Seana and her hubby, Kevin. They delivered a chair to us all the way from Albuquerque on their way to Houston! Wednesday we took Caden to Chuck E. Cheese. This is only his 3rd time to go! He loves playing the games, but he won't climb into the tubes. He had a great time and we won lots of tickets. He only picked out two things, a big bug and bath fizzies. So, I guess that means we get to make another trip to spend the rest of the tickets! We left, or tried to, my battery died! Mom came and gave me a jump start and then we had to buy a new one. The bad thing is that my car has an anti theft system that when the battery is disconnected you have to enter a code to get your radio and stuff back on. I bought my car as a repo and of course do not have the code, so now I will have to go to a dealer and try and get them to give me a code. We did enjoy the rest of the evening. We went to the Rangers game, it was my birthday present. The game was pretty good, the Rangers won, and we had good seats. The fireworks after were amazing! They lasted for forever. Caden did not enjoy them for any longer than about 5 minutes. We were not but a few hundred yards from where they were setting them off so they were very loud. They had some cool special effects and they were very well choreographed. We were out very late and spent today trying to catch up on some sleep and rest.

Caden is doing fairly well with his leg right now. He has a good limp, but most people don't notice since he moves so fast. He has complained a few times of pain, but gets over it quickly. He has probably about 50 bruises up and down his shins. It makes me nervous to see his leg so beat up when he doesn't do much physical activity yet other than running around while playing with toys. I will start pushing for answers if they don't fade away soon.

Caden's friend Katsie should be released from the hospital tomorrow. She just had surgery on her precious tummy. Please pray that the pain continues to be managed and everything starts working properly.

The NF community also just lost a hero. Sandra Blumberg was a sweet, optimistic NF champion. She fought long and HARD. Please leave this young lady's family a message at a site like Caden's - visit/sandy.

Please continue to pray for all the kids out there suffering the many and diverse effects of NF. We have some who are post-blood marrow transplant, some going through chemo, some dealing with after-effects of chemo, and many dealing with surgeries and procedures. These kids need your prayers!

We love you all and thanks for keeping up with us! Please sign the guestbook!


Kara

Wednesday, June 27, 2007 12:33 AM CDT

So, of course this would happen :)! The very first time, and I mean the very first time, I leave his left shoe at home thinking that they will leave him in his boot. But did they? NO NO NO they did not!!! They didn't even put him back in a brace! I am a little nervous about that one, but we're working on it. He was sent home with the instructions to put his other shoe on him and let him walk as much as he wants! The look on his face when we got home and I handed him his other "shroc"(croc) was priceless. He had a grin from ear to ear. The doc also said we can do what he wants to, meaning, SWIMMING IS BACK!!! I am so excited and he is too. As I said before I am a little nervous about not being with a brace or any protection, but he'll be okay. We are having pizza for lunch and cupcakes after dinner. He also got a green lightsaber so he can "really be yoda from star wars"!

They also took his picture today! A lady from the media department grabbed us and said we are looking for a cute young child to take some promo pictures for the gift shop. Can your son do this for us? I, of course, said yes! Caden did pretty well and they let him pick out a toy to take home, he chose a fire truck, surprise, surprise. I got to be in some of the pictures as well, but we'll see how those turn out! I believe the lady said they are for the website, I guess we will find out eventually. I will make sure and let you know when I spot them, if I do. The link to the website is at the bottom of this page.

I am about to call his physical therapist and get him on the schedule for a new eval. Once she gets his peds. referral then we're there. She will then give me a referal to the orthotist who will evaluate to make sure she doesn't think he needs a brace. I am going to cover all bases so maybe we won't have to do this again. Please continue to pray. The bone growth looks good and is getting stronger, but we are still not completely out of danger for fractures and issues. Thanks for the constant support, friendship, and love. It has really helped us get through these past 10 months. Can you believe he lived like that for that long? It was Sept. when he got his first cast on and only had a 5 day break in February before he had to put one back on and schedule the second surgery! It is actually beginning to look like we may be at the top of this mountain right now. We can look back and see how far he's come, there's still another valley beneath us, but for now we can sit at the top and enjoy the view! Thanks again and God bless!


praising God's faithfulness,

Kara

Sunday, June 24, 2007 10:35 PM CDT

Just a really quick, sad but good note tonight! After four and a half years in a crib, Caden has moved into a big boy, well kinda, bed. He is in a toddler bed now. He loves it and was so excited about sleeping in it tonight I wasn't sure he was actually going to go to sleep. It's one less transition for him when we move to the new house. I spent most of the day yesterday sanding it down and painting it. It was a lovely dark green with pink butterflies! It is now metallic silver. It looks very in place in his space themed room. I am so proud of him and how big he's getting. I think that's why I've kept him in his crib so long, that and for his added safety. This kind of really makes this whole "big kid" thing for real. He really isn't my "baby" anymore. It's a very sad and happy moment all in one. I just hope it stays a happy mood. He has very strict rules about getting out of the bed, and he's very good about sticking to those kind of rules, but it will be interesting to see how this goes in a few months!

We are going to the zoo tomorrow morning, OT on Tuesday morning, and then Wednesday is x-ray and clinic day at the hospital. Please pray that Caden has a good week and everything goes well at clinic!

Please also pray for our friends the Brocks. Katsie has NF like Caden. They are on a trip right now to NY to celebrate Katsie's birthday, please pray for a fun, safe trip and return. When they return Katsie will be having surgery. Please pray for peace of mind for her family and for a quick and easy recovery for Katsie with no complications throughout the whole process.


God bless you all,

Kara

Thursday, June 21, 2007 11:13 PM CDT

So Monday was good! We went to the zoo with Caden's buddy Emily and her Mom and brother, who is also special needs. We all had a great time and the kids were really good. They didn't even start getting fussy until we had been there for almost 3 hours! We will definitely go with them again some time.

As many of you may have heard there was some severe flooding and even loss of life in Haltom City, TX Sunday night into early Monday morning. Well, James is a firefighter/paramedic for Haltom City! He was up all night on calls and I was a little worried all morning about what he had seen and dealt with. He got lucky and didn't have to deal with much more than the cuts and scrapes side of things. We drove through the mobile home park that was hit so hard. It really is sad to see all the homes torn apart. They announced the decision today that some of the properties would be cleared and not be built on again. The flood risk is just to great. I think this has been a long time coming, it's just sad it took a little girl losing her life to make it happen.

Caden has been way fussy all week. He's been a small little terrorist at work causing mayhem and destruction wherever he goes. Kids are starting to flench when he walks by. I am not happy. Neither are the other ladies who watch him. They are on his case constantly and I can tell they're fed up with his behavior, I don't blame them. I am trying to find some ways that we can deal with these issues that won't cause more harm than good.

He has been bad outside of work too. Today was almost nightmarish at moments. I feel like I have a two year old again, only Caden wasn't this verbal at two! Don't get me wrong, he's still laughing and making me laugh and being sweet, but he's been so bad this week.

On top of all this, we aren't going to have a fun weekend at Katsie's swim party. There's a lot more to it than that, but I'm not going to go there. We are going to have to find something good to do this weekend, other than your shower Jaclyn, but that has nothing to do with Caden :). Caden is really disappointed about the swim party, I'm still hoping to figure out something to do with him that doesn't cost any money, I'm BROKE!

I just hope things get better, and "swit"-quick in Cadenism.
Neither him nor I can really take much more of this torture going on in his body and mind. We go back to the hospital for x-rays and clinic on Wednesday. I am oddly nervous about this one. I have this little spark of hope in the back of my mind that we could finally be "freed". Meaning, we would be out of the cast and back into a brace. However, the ever nagging boom of doom is always at the forefront keeping my feet on the ground. I am sure that we will see a little more healing, which don't get me wrong is great, and be put back in the boot cast. We will probably be also told no swimming for the entire summer, at which point I will moan and wail and go into deep depression, just kidding. I will be more frustrated by the road that we're walking on and I'll be saying, "Where in the h#%* is this road taking us God!". I know God's plan for Caden is beautiful and perfect, but that doesn't always make this easier! We will press on as usual! Please pray for us this weekend and next week at our appointment.

trying to figure out the "plan",

Kara

Saturday, June 16, 2007 3:21 PM CDT

It is easy to say Caden had a blast at his camp this week. So much in fact that we had to pull him out of there each night. Last night, he didn't want to leave even for ice cream! His special helper was really sweet and he really liked her alot. It ends up that her husband works for the same company that James works part-time for, they have seen each other around and talked on the phone a few times! What a small world! Caden did lots of activities and brought home some really neat crafts. I can't wait for next year!

I kept the rest of the week as slow as possible for him. He was exhausted. The camp didn't end til the time he's normally in bed. Tuesday morning I had to wake him up at 9 to get ready for therapies! He is usually awake and screaming at 7! I did have a really fun make your own pizza girls night though! It was a great time of talking and just being with other ladies, no yucky medical stuff!

My "little sister" is finally moved back here to Texas. They will close on their house in a few weeks! Good luck Kim and Ryan and baby "Rambo" - that's what I'm calling the baby until we know if it's a girl or boy :)!

This week is packed full of stuff. Mostly wedding stuff though! Caden has his water park party on Saturday, you know the one we aren't supposed to go to, but are any ways! He is very excited and so am I, except for the whole bathing suit thing. The 27th is his x-ray and clinic appt. Please be praying that there is substantial healing and they will free him from his cast and allow him to swim some. I want to have a big bye-bye cast celebration for him, but since we really don't know and I have no money, I will settle for a fun outing! I'll update again after some of the funness of this week is done. I have some great Caden stories, he is so going to be a comedy actor! Love this boy, how could you not!


a proud and blessed momma,

Kara

Monday, June 11, 2007 4:06 PM CDT

Caden loves Surf's Up! We went and saw it Friday afternoon. It was very kid friendly and was cute. He really enjoyed it and laughed a lot. We did go after and use his build a bear gift card to make the penguin, Cody, from the movie, it has barely left his side since then! It was a fun time and kept our mind and our bodies out of the extreme Texas humidity and heat.

Today is James' birthday! Happy Birthday, we love you!!! We celebrated yesterday with us and his dad. He is on shift at the fire station today. We ate out twice and had cake last night. We got him some tools and I think he liked them. Caden is so sweet. He loves giving gifts and was so excited to hand James his presents and see James be happy about getting them. He made sure James knew which one was from him!

Caden starts his All Around Athlete Sports Camp tonight. The church he goes to for his respite night is offering a special place in their annual sports camp for the special needs kids. Caden will have a "buddy" to help him just like he does for respite nights. He will get to be involved in some of the same activities as the other kids! This is so exciting for him and me. This will be his first day camp/ vacation bible school kind of thing. I am excited to see how he does. This church is so organized and so good with our special kids, I don't really worry too much. Caden has been invited to other Vacation Bible Schools at other churches, but I'm just so cautious. His behavior can change so quickly, especially in new situations. I'm not sure I can hand him over to someone who doesn't already know him and know how he can be and would know how to handle his behavior problems. I am looking into at least one more that's coming up that I think might have dealt with something like this before, we'll see. He is very excited about this one and I can't wait to hear about all the fun he'll have.

There is not much else planned for this week. I figure the sports camp is enough for the both of us after our busy week last week. He has Occupational therapy and speech in the morning. We are working towards increasing the amount of therapy he gets and hopefully will hear something soon. He is not catching up as quickly as he should be especially in speech. He is doing well otherwise and we look forward to the next few weeks and what they might bring. Please sign the guest book! Thanks!


Kara

Thursday, June 7, 2007 10:27 PM CDT

It is so hot and humid here, the one thing we want to do, swim, of course! Caden and I got fried today. It was very windy so we went to the park to fly kites, I forgot sunscreen! Oops, at least Caden isn't as bad as me. He tans, I burn then tan, stupid fair-skinned red-headedness. We did have a good time though. He played on the playground for a few minutes and spent the rest of the time chasing the kites shadow. He flew the kite himself for a few minutes, but the wind was too strong and it was too hard for him to hold on tight enough.

He had his first day back at occupational therapy today. He did okay on some things, and others, well, not so good. His behavior was good in the field of it let the o.t. see what we have been dealing with. He was typical wild Caden. She very rarely saw him like that. I am glad we're back in and hope we can start seeing some results soon.

Yesterday we got his hair cut, ate lunch out, and did some window shopping. He was so incredibly good. He had a lot of fun spending time playing at the fountains and flirting with all the girls around. We were there for around 6 hours and he only fussed once when he got impatient! It was definitely a nice break for the both of us. He even ate all his lunch without a single moan or groan, except for the two chips he threw to the birds!

Tomorrow is another penguin day!!! Surf's Up, the new penguin movie comes out tomorrow. I found out that a local theatre doesn't charge for him if he sits in my lap, and that's where he ends up anyway. So we'll see a matinee and he'll sit with me and it will all be good! Build a Bear has a penguin from the movie now. Caden knows he has a little build a bear money, so I'm sure we'll be making a trip soon and adding to our collection! It helps that we got a coupon this week too! I am hoping it will once again be a memorable day!

I am determined for this to be a fun summer for him. We have our sad days and days that are not fun, but they will not ruin our summer. I am going to do things with him to make up for what he can't. We don't have much money, but I'm creative, I'll keep finding things for us to do. If any one has ideas for free fun activities for a child who can't do much physically, please help!!!

Funny story, at the park today an autistic boy jumped in the lake!!! This lady was yelling at him to get out, asking where his mom was, and telling him she was going to call the cops. Of course, he didn't have a clue what she was talking about nor did he care. He just kept swimming. I don't blame the kid, it was hot! He was walking off once his mom got him out and was all dripping wet. I can only imagine what was going through his head, "I feel so much better now". I kinda wished I was in his shoes, cooled down and not caring what anyone else said or thought!

so tired and need some Heavenly energy,

Kara

Sunday, June 3, 2007 8:07 PM CDT

Today was the TX Tea Party for CTF in honor of Katsie Brock (www.caringbridge.org/tx/katsierane). Melissa did an awesome job hosting the event. It was absolutely perfect and very fit for a princess. It was worth the drive for us and I'd have driven farther for it. I am sure Katsie is going to have a huge check to present to Children's Tumor Foundation. The silent auction baskets and gifts were incredible and the raffle prizes were amazing. I won tickets to the local water park and a beautiful "cure nf" crystal bracelet. It was an honor to get to participate and be a part of this celebration. I can't wait for the one's in years to come.

Caden has had a fun weekend and just got to be a regular boy. He went to the park twice, did some frog catching, and played with rolly pollys in the water and yard clippings. It was refreshing to watch him have that kind of weekend. He just got to play like he was any other kid, a kid who didn't "have more". It has been so stinking hot and humid and is only getting worse. It is so painful to drive by the water park and know that there's not many places either of us would rather be, and yet we can't. I will break the rules towards the end of the month and allow him to go to a birthday party there, but he will be under very heavy restriction as to what he can and can't do. That is going to be very hard for him. The water park is the one place he can go that I let him just run and do what he wants to and ALL I do is follow and watch. He has total freedom and he loves it, now even when he gets to go, NO FREEDOM. He won't even be able to walk. This has been one of those hard times of realizing that while we had to do this and things are going well with his leg, he really has lost a lot. I have complete understanding of the parents who decide to amputate instead of going through these surgeries. There are none of these restrictions, they don't lose ankle function, and they don't have to live the rest of their lives in a brace. I know we have chosen the right path for Caden right now, but I am open to what the future may hold for him and know that none of our attempts will have been in vain. He has grown so much and become such a strong boy through all he's been through and I wouldn't trade that for anything.

We truly our blessed by our NF kids and what their lives bring into ours. We really do have "so much more". Thanks Melissa and all my other friends for always helping me remember this and for walking beside me in this journey. I truly do love you guys and count you as blessings and me as blessed for having you in my life.


living in the joy of the Lord,

Kara

Wednesday, May 30, 2007 9:54 AM CDT

Wow, I'm not sure I have ever waited to update until the next day. I was so exhausted after yesterday. Caden did great with being sleep deprived. We took him to Barnes and Nobles and stayed there from 9-11! He did great and actually was a bit hyper. We got home, gave him a bath, read several books, and had him in bed just after midnight. Then, I had the lovely job of waking him up early the next morning, 4:30! He was not happy. He did stay awake and eventually was his normal happy self. He tried to fall asleep in the car, but I caught him and James played with him the rest of the time. He fought off the EEG electrodes being put on, but once she had a few on and he realized they really wouldn't hurt or bother him, he was fine. He layed still and watched a movie through the entire test. We didn't get results, but I should hear from them by Friday.

He screamed and fought over the cast saw as usual. Actually, as soon as we were walking across the lobby and he realized that's where we were going, he bolted for the door. I grabbed him before he got two feet away, he was still in a cast and he's just not fast. I had to carry him back to clinic! He did get over it after it was finished and did x-rays and post-clinic and orthotics like his normal brave self. The intern, his surgeon is out of the country, said there was more bone there this time! I am trying not to hold to much hope for this, he was only the intern. Caden is back in a walking cast boot, boy did Caden love his bath last night!!! We go back in 4 more weeks for x-rays and if there is still more bone growth, they may let us get our new brace and be done with casts!!!

We took today off from EVERYTHING. We need some serious catch up on sleep. We are just going to take it easy today, and do a little laundry. It will be nice to finally have a day just to do nothing. Not that there isn't anything I need to do, I'm just not going to!

The inspection on the new house went well, no major issues, praise the Lord! Lots of maintenance stuff, but James is confident that it's all stuff he can do. Thanks for praying and believing with us.

That is all for now, I'm sure there will be more soon. I need some fun time with my baby, I think we will play some games today. It's rainy and stormy and feels like a good day for games and movies! Do us a favor, Moms, hug your kids lots today! We love all of you and thanks for the constant support!


praising God for continued healing,

Kara

Sunday, May 27, 2007 5:04 PM CDT

As of just minutes ago a wonderful man passed away. Sandy Yoes was often seen as just a grumpy, rough old man, but he was so much more. He was the kind of guy who did every job he was given with his whole heart and made sure it was done right. He loved his dogs and in true Texas spirit, his guns. He was a man who really knew how to love, when he wasn't being to stubborn to show it. He has now passed through Heaven's gates and is in no more pain, has two legs again, and is praising his Maker. Please say prayers for his wife and family this week as they begin to adjust to life without him and as they try and find ways to cover the costs of life and death.

It has been a very long week, and that's putting it mildly. I feel like I haven't slept in centuries. Caden did great during the last week of school. He had a blast at his end of school year party. Even when the huge inflatable dinosaur bounce house came crashing down on all 13 kids inside it! Most were crying, but not Caden, he thought it was funny. There was an adult inside who kept him, our autistic friend, and our friend with spina bifida from getting trampled by the others. It was crazy!!! We will really miss his speech teacher and nurse, they are both leaving the school. We wish them both lots of luck!

We went to 2 Texas Rangers games this week. Caden loves being at the ballpark! He loves everything about it, the wave, the hot dogs, screaming CHARGE, all of it. He was a little ticked off the first night that he had his glove on and didn't catch any balls, he even made up a knock-knock joke about it! Knock-knock, who's there, glove, glove who, (with a very annoyed look on the face) glove DIDN'T catch ANY balls!!! He's so crazy! We even got to see them play Boston. I informed him before the game that while we were cheering for the Rangers, if he was to cheer on any other team, it would probably be Boston. However, we quickly taught him to say "booooo" as Boston was playing. It was the cutest booooo I've ever seen, I'll try and post the picture soon. Rangers lost both games and the Boston game got rain delayed by two hours, but it was still an awesome time.

The rest of the week was full of anything else you could think of. hahaha. It was just general business, but crazy schedules going on.

Tuesday is his EEG and he gets his cast off and x-rays. This will be a tough day on all of us. He has to be sleep deprived for the EEG so that will be a lot of fun! Please pray for good results on the x-rays and such. His surgeon is out of town so we'll only see the intern. The plan is to put him in another cast boot that comes off. He will still not be allowed to put weight on it without the cast. I am hoping we will be allowed to swim as long as I carry him in and out of the pool and stuff. The EEG, well I don't know. I can't imagine a sleepy Caden letting people attach things to his head and then falling asleep in a strange place. It will be an adventure. Please, please pray for my sanity!

Another prayer request, tomorrow is our new home inspection. We will find out if there's any roof damage, foundation problems, or other big issues. Any of these things would be deal breakers and we will probably have to walk away. The very though of this makes me sick to my stomach, but I know we are in God's hands. He will handle our needs and we'll be fine. Please pray everything goes well.

Other than this, there's not much planned for this week, hahaha. Now, I've also got to fit in Sandy's memorial service. I hope everyone has a great and safe memorial day and week following. Please sign our guestbook. Caden loves his messages, just knowing who has looked at his page makes him so excited. God bless!


awake by God's grace,

Kara

Monday, May 21, 2007 4:16 PM CDT

Well, I promise I'm not holding out on you guys! It's been a really slow weekend and Monday, which has been SO unbelievably nice. We still don't have an appt. with the cardiologist, but I should at least have a date by Wednesday. The peeling is getting a little better and his little chapped lips are starting to scab some. He has been a funny crazy boy all weekend.

Tomorrow is his last afternoon at school for the year and Thursday is a half day for schools so he'll go in the morning. They are having a party tomorrow and we need to pray for no rain so they can enjoy all the fun activities that are planned! Both the school nurse and the speech pathologist are leaving the school. They are both so wonderful and we will really miss them. I'm not sure what I'm going to do with having the monkey all afternoon everyday! I'm just hoping we don't strangle each other! We'll plan lots of fun stuff and do lots of new house work and stuff!

Speaking of new house, the inspection is scheduled for Friday morning. Please pray that the roof is fine and the foundation is fine. Those are our biggest concerns right now and might change our decision on the house.

Please also pray for our NF buddies Genna and Carly, both have sites similar to Caden's nj/gennahenna and visit/carlyschmidt . Genna gets her port out tomorrow and Carly has scans! We're praying for you guys!

I'll update as soon as I know anything about the cardiologist.


praising God,

Kara

p.s. Tara, Caden is watching a movie with Preston's picture! He was so excited to have his own picture of his friend with his "wisenz pwase" or license plates in non-Cadenese.

Thursday, May 17, 2007 10:59 PM CDT

If you haven't read in a few days I suggest reading through journal history to get caught up, A LOT HAS HAPPENED!!!

Well, the next step we are going to take is see a cardiologist. Caden is past the stage where any treatment would do anything to reduce the risk of heart damage. The only way we will ever know if it was Kawasaki disease is if there's heart damage. If there's no damage, that doesn't mean it wasn't KD, it just means we escaped more problems. His hands and toes are peeling like crazy and it's driving him nuts. With all his sensory issues, I'm surprised his behavior isn't worse. We actually had a better day today as far as behavior goes. It was a rough night, but not bad.

I did a lot of cleaning out and going thru Caden's baby stuff today. It was crazy seeing all his itty bitty preemie clothes again. I am holding on to some in hopes that either Kim has a boy or my next is a boy. I got a good bit done and am feeling a tad more ready for the big move. There is a seriously huge amount of crap to sort thru when you've lived in the same place for over 15 years! Caden is still not real sure about the whole new house thing, but I've thought up some great ideas to make it more appealing. It is going to be rough on him!

Please pray we get into the cardiologist quickly and that there will be no signs of damage! We do not need ANY more issues in his little body. Please keep praying for the other NF kids as well! Preston has his urgent MRI next week and needs some serious prayer that it's a false alarm. We love all of you out there, hope everyone has a safe, happy weekend!


praising HIS mighty name,

Kara

Wednesday, May 16, 2007 7:05 PM CDT

Well, no news is NOT good news. I am not sure where to go with my feelings right now. The doctor does not think it's Kawasaki Disease, he thinks it's scarlet fever. Or at least that it was. The symptoms for the two are very similar in some ways. Caden's symptoms don't completely fit into the scarlet fever category, but they are mild and atypical for Kawasaki. He did listen to my concerns and is going to consult with an infectious disease doctor and call me on his lunch break tomorrow. Until then I will be sitting on pins and needles. I'm not sure how I'm going to make it through tomorrow morning's waiting! I do know that even if the infectious disease doctor doesn't think it's KD, I'll still request seeing a cardiologist. It definitely won't hurt anything to check out his heart health! This is really the only way to have any clue as to whether or not KD was present.

Let me give you a run down of the insanity of the visit. The doctor thinks it's just scarlet fever, the red swollen throat is still around, but strep test is negative. The ear infections have mostly cleared. If the strep is not there and the ears are better, set aside the peeling hands, we still have symptoms, why? Caden is not known to fuss over aches and pains. He woke up this morning saying he didn't feel good. He was so bad this morning that I kept him home from school to nap. He was just not himself and hasn't been most of the week. I know something is going on, but how do you get a doctor who sees in black and white to understand that AND do something about it? Caden is not okay right now. I am not an emotional person and this has been the hardest week I've had in a long time. If we hadn't just had an MRI, I'd be so freaking out right now.

Like I said before, I don't know what to do at this point. I trust the doctor to a point, but I also know from past experiences that my intuition has always been more accurate than his thoughts. After all, he pulled out his "red book" today to show me where he gets his information from! I'm sitting there thinking, my child is not a book, you can't look at my child and say "the book says because he tested positive for strep he doesn't have KD" and be done with the situation. There is no test to know if a child does or does not have KD. I don't feel it's right to not treat a child for something that could potentially have serious complications just because his symptoms aren't typical.

That is the end of my venting for now. If you have any thought, feel free to share in the guestbook! We just need some prayers. Mom is praying that the pediatrician won't be able to sleep tonight because he can't stop thinking about Caden and what risks we might be putting him up against by not treating him!!! Prayers of that kind are definitely okay with me! LOL

I'll update tomorrow after I talk to the doctors!


seriously believing in God,

Kara

Wednesday, May 16, 2007 12:33 AM CDT

I feel awful!!! As many of you know, Caden was sick with another mystery illness a few weekends ago. There were some confirmed illnesses, but some symptoms that absolutely puzzled the doctors, it's all in the update from the weekend of May 5. One possible illness was Kawasaki Disease. Caden exhibited some of the signs, but not enough to be diagnosed. I was told if things were the same or if any new symptoms appeared to bring him back in. Well, with antibiotics and round the clock doses of tylenol and ibuprofen he got better. Then, his lips got chapped, I figured from mouth breathing from the congestion or from coughing from the strep throat. That went away and his eyes got a little red, not very red, he just looked tired. That went away and now, the killer, his fingers and toes are peeling. He showed me that today and I thought I was going to vomit. I knew immediately we were in danger. Kawasakis can cause heart damage, especially in cases like his where his STUPID mother didn't catch all these things and put them together. We have an appt. with his pediatrician this afternoon. I am going to request that no matter how he feels about Caden's symptoms that we see a cardiologist to make sure there's not any problems. I feel so bad that I didn't stop and catch it before. The problem is that from what I've been told most of the symptoms happen together, not one after another. However, we are talking about Caden here, has he ever done anything the "normal" way, NO! Please pray that the doctor will take this seriously and that we get Caden taken care of.

If this is Kawasaki they might put us inpatient. They typically treat it with IV antibiotics, aspirin, and steroids. In Caden's case, it may be too late for that, I don't know. It's not often that I'm this nervous about going to a doctor! Please pray!


leaning on the strength of God,

Kara

Monday, May 14, 2007 2:33 PM CDT

It's official, I can no longer live in denial. At our last appointment with the neurologist he asked me a series of questions, which at the end pointed to suspicion that Caden has been having absence seizures. At the time I didn't even want to think about it as we were just a few weeks out from MRI and seizures could mean scary things in NF world. When his MRI came back as no changes I breathed a sigh of relief and went back into denial that he was just having severe daydreaming episodes. The neurologist still wanted an EEG to see if they can locate any seizure activity and get a kind of map of brain activity. The EEG is scheduled for May 29th. Today blew all thoughts of denial out of the water. Caden and I were sitting on the floor playing with his best friend and she was asking him a question and he wouldn't respond. I looked up at him and said, Caden she's talking to you. As I looked at his eyes they became crossed and started shaking. It lasted for about thirty seconds then he startled back into reality and went right back to playing. Denial is now over. I informed his teacher and the school nurse and will have to do so with other adults who watch him as well. I'm just hoping the EEG might find what's going on and we can get things taken care of before it really starts to affect his life.

We had a fun Saturday. TSRHC had its annual farm and ranch day at the park behing the hospital. It was totally free! Caden pet ducks, geese, pigs, horses, chicks, goats, and bunnies. We saw a cow get milked by hand and machine. We did all kinds of activities and even ate lunch. Actually, I ate lunch, Caden ate two ice cream sandwiches, a snow cone, popcorn, some cookies and some chips! Oh so very healthy, I know. He had a great time and it was more than worth the drive, it's actually not that bad when it's not rush hour! I think it smoothed over some of his bad feelings about the hospital and what he usually does there!

We had a quiet Mothers day and enjoyed the company of our dear friend Kevin who was in town from Colorado. We ate lunch and dinner out and gave some friends the tour of the new house. It was nice and calm and I didn't feel pressured to do stuff or be anywhere. The only thing that would have made it better would have been a nap!!!

Please be praying for all of our friends. Our NF friends seem to need a little extra prayer right now. Genna scanned today, Carly has a NG tube, Cullen had tests run, Katsie is having problems, and Preston will soon have an MRI that's been moved up because of a potential problem. This is not the kind of life anyone wants for their child. These are who we've met along the way who battle NF with a smile on their face and a sparkle in their eye. These kids and so many more have been through so much and have not quit the fight, they won't, they can't. We have to find a cure for NF. Please visit the Children's Tumor Foundation website, the link is at the bottom of the page, and find out how you can help find a cure!!!

Sorry this is so painfully long, I'm having a bit of a blah day with having to face reality, the writing really helps me get it out! Thanks for "listening" to my constant rambling!


we'll never stop believing,
Kara and family

Tuesday, May 8, 2007 10:40 AM CDT

Caden continues to amaze! He is doing much better today. His fever slowly started to decline yesterday. It is very low today and the redness has subsided. I'm afraid we'll never know for sure about the spots, but I do have an idea. I am beginning to wonder if he did have scarlet fever like the doctor thought. I'm wondering if the white spots were cafe au lait spots that are not yet visible to the naked eye. Maybe when he got the redness and the skin color changed we could see them. That's the only explanation I can think of. If his fever hadn't gone down we would have been in more danger for Kawasaki's, but since it's almost gone we're in the clear :)! He has a pretty nasty cough, but is otherwise fine.

We see the geneticist tomorrow. It's our yearly visit. I will ask her about the white spots and see if she has any input on it. It isn't any big deal kind of appt., pretty boring in fact, especially since he already had an MRI and we know things checked out up there.

Speaking of MRI's, please pray for my friend Tara's son Preston, www.caringbridge.org/visit/preston . He had his opthamology appt yesterday and his optic nerves are an issue. They are going to have to move up his MRI date. Please pray that Tara and the family have comfort and peace while they wait to find out what's going on. It was not even a month ago that I was going through this myself and I know the kind of thoughts and fears that can go through one's mind. I am praying for you guys, Tara. God will carry you through!!! I'm here if you need anything!

Pray for all of our NF kids! May is NF awareness month. Please take the time to visit CTF.org and learn more about this disorder. It affects so many people in so many different ways. Once you've learned about it spread the word!!! The more people who know the better, WE NEED TO FIND A CURE FOR NF!


believing in God,

Kara

Sunday, May 6, 2007 4:59 PM CDT

Can we even have a week that somewhat resembles normalcy??? I took Caden to his respite night program Friday night. He was having a great time even when about an hour and a half later he started vomiting. He continued until we got there and vomited once more on the way to the car. He fell asleep and did fine overnight. He had a fever and that has stayed. About half way through the day yesterday his hands and foot each had a red swollen spot on them. I thought he had a mosquito bite. He woke up this morning and had white spots all over his back and they quickly spread over his body. They aren't hives and aren't in a pattern like a rash. Now his body is red in several spots including his cheeks and he still has the white spots. He also said this morning that his throat hurt. I took him to the weekend clinic at his pediatrician's office. The nurse and the doctor were both puzzled by the spots and symptoms! We ran a series of tests and they gave him a good look over. So here's what we know. He has a double ear infection, hence the complaining about his ears last week. He has strep throat, possibly scarlet fever because of the other symptoms. His blood count was normal so he has both bacterial and viral infections. He has a cold. He is on a watch for Kawasaki's disease, he meets several criteria, but not all. Kawasakis would be serious, it's treated with iv and inpatient treatments and could cause heart damage. The doctor was completely puzzled and actually said, your son is weird, I am spending extra time on this because I really can't figure out what's going on. These were his actual words! He was a great doctor and really took the time to answer my questions and explain things to me. Caden obviously is not feeling the best, but he is still running around and playing almost like normal. Please pray that no more symptoms of Kawasakis develops and that the antibiotics really kick in fast. We do not need anymore complications to life right now. This has been long enough and I need to go hug on my sick baby! I think we'll eat some ice cream :)!!!


praying for comfort,

Kara

Friday, May 4, 2007 4:47 PM CDT

I just got a call from the neurologists nurse. She had the report from the MRI and said the neurologist said it was okay to just read it to me over the phone so I didn't have to make another trip to Dallas or have to keep waiting. It's good news. There were a few spots that lit up in the basal ganglia and the pons areas but they are pretty common with NF. There were no changes in the brainstem lesion. All the other findings were consistent with his past MRIs. No masses were found!!! His ventricles looked good and there was no excess fluid anywhere! Some of the spots they found are new, but of no concern and the spots that had been there before are still there and haven't changed any. This is a huge relief. Thanks for praying for us while we waited!

Caden went on his field trip today, I went with them. We had a great time and it didn't start getting hot til about the time we left. The kids enjoyed the activities and shows and all seemed to have a great time. Caden loved the butterfly house where butterflies fly all around you. He made all kinds of stuff and is really proud of all his creations.

He has respite night tonight. He will be so glad to be there since he missed the last one because of the storms. He is really looking forward to playing with Emily. I'm not sure what James and I will do, I want to have a picnic in our new house! It's sort of our "anniversary". Well, tomorrow is. It's really just the only day we could remember that we started officially dating each other exclusively. Hey, it works!

Tomorrow I get to go the optometrist and get a new prescription for my eyes and get new contacts and glasses. Everyone who sees me regularly is celebrating, JK. I have been without contacts for a few months and have had to wear my glasses :( . I am so excited, our optometrist is an old family friend and we really love their family. I hope we can see some of the rest of his family tomorrow too.

Caden sees the geneticist next week which should be pretty uneventful. He does need a little prayer for his ears. He has been fussing about his right ear for two days. Caden does not ever cry about hurting and he has been. I don't know what's going on, but I'm hoping to take him to the doctor next week if it continues to bother him. Please pray the issue resolves itself! I hope everyone has a great weekend. God bless you all and we love you!


resting in the peace of God,

Kara

Wednesday, May 2, 2007 11:38 AM CDT

At least I can start this by saying that for now the good news out weighs the bad news. Good news on the leg issues is that there is sign of healing in the graph site :)! Bad news is that there's not enough and Caden is still in a cast. I am not overly suprised, but he was not happy to say the least. He knows by this time that one more cast on means that it will eventually have to come off, he HATES the cast removal process. I can't even speak of the day until we're on our way to the hospital, otherwise we have a lot of anxiety. He did better this time, but still not well. He was a champ with x-rays as usual and was very good about not walking while we waited and waited and waited to get back into clinic. He bled some from his stitches but the surgeon said it was just the scab over the end of them.

We did not get to see the neurologist :( . I still have no clue as to the results of his MRI. I have them on disc, but yeah right, like I'm gonna even try that one! I guess I will wait. If they don't call me today to schedule an appt. then I will call them.

I am now more worried about the results than I was previously. Caden had his evaluation with his Occupational therapist on Monday. He's only been out of OT for seven months now. He has had some significant regression. He has lost skills that he had when we stopped. The majority of his problems are in the visual-motor category. This appears to be somewhat common in NF, but still kind of scary. His OT thinks he's having problems with motor planning. That basically means that he knows how to do what he's trying to do, he just can't execute it. It's a look in his eyes I see quite often. He tries so hard and for some reason just can't do certain things. It makes him frustrated because he can see how things are supposed to be and he wants to do it, but can't. It doesn't help that he has all the ADHD and ODD stuff thrown in there too. The psychologist never mentioned anything, but the OT still says she sees some pretty strong OCD characteristics there too. I am just so anxious to see if any of this is related to anything we'll see on his MRI.


I did leave the best for last. I wanted you to have to read the long tortuous part first! James got a call at work yesterday while I was at the hospital. The house we had been praying for and wanting so badly that we got crushed last week when we didn't get called, we were name number TWO!!! That's right, it's ours!!!!!! We are going today to walk around inside and talk to them and get some details taken care of. We are so thrilled and knew that God wasn't done with this situation yet. God had his hand in this in such an awesome way and I can't wait to start telling people our testimony of how we got our first home. I told God just last week that I wasn't going to give up. Even though I felt crushed and defeated, I know my Jesus better than that and I was going to let Him tell me when he was ready to say yes. God has never let us down and I know he never will. For those of you who have not known me that long, I have walked through some of the worst circumstances that life could throw your way, but each time God has not only been there beside me, but shown me His love in such amazing ways. Some would say my life has been a rough road and noone should have to live through what I have, but I wouldn't change it for anything. I know who Jesus is and I know what he can do. I also know that I am only through part of my journey and there is so much more he has planned for me!


Sorry to go on like this, but I am so happy and so pleased by what God has continued to do in my family's lives. Thanks for checking in on us and please don't stop praying for us. We need prayers in the good times as well as the bad. Have a great week and I will update as soon as I know anything about the MRI!


praising God's marvelous works,

Kara

Friday, April 27, 2007 10:54 AM CDT

First off let me say, Tara McFarland and Melissa Brock, you two are more than I know what to do with. I am so blessed to have the two of you along my side in the walk. I am so blessed to have all my friends on the CTF board as well. All the advice, even the ones I don't want to hear is so above value!

We just got home from MRI! They got us in very early and were super speedy about things. I was very impressed and this particular hospital earned a lot of the credit back that I had taken from them from previous experiences. Caden did very well. He fought the mask for sedation, but did everything else with more compliance than they probably get from most eight year olds! He's done that stuff numerous times though, so it's not a big deal to him anymore. It was definitely a lot easier on me this time too. I have the disc with the films on it, but I'm really nervous about looking since I'm not too familiar with MRI readings yet. I am trying to get an appt. set up with the neurologist when we'll be there for orthopedics on Tuesday. It would be a stretch that he could do that, since it's at a different hospital than where they scanned, but they were more than willing to try!

Yes, Tara, as far as the opth. went no news was good news. He has some vision issues, but the doctor said they're not bad enough to treat and we may get better results as he gets older and cooperates more. The optic nerve looks great!!! Those were the doctors exact words! The optic disk is perfect, no atrophy, thickening, or dullness on the nerve! This is very good news for those of you who are non NF!

Our house news however, not good so far. We did not get the call yesterday. That's why I didn't post. I am very crushed, I could really see my family in that house. This does not mean it is completely out of the picture, but our chances are much smaller :( . We are now praying that God continues to guide us in our search. I am praying and telling God that this MUST mean that there is a house out there for us that is THAT much better.

I need to go take care of Caden! They gave me the typical go. Don't let him walk on his own, keep him still, no food for a few hours, etc. Yea right! He is already begging for food, jumping from couch to couch, and running around the house. Once again, they underestimated him! He was so funny in recovery. The second he woke up he asked for his popsicle! They gave it to him and he couldn't get it to his mouth. He hit his chin, nose, and cheeks before he got it anywhere near his mouth! He was so animated and very funny to watch. Thanks for the prayers! We have Occupational therapy evaluation on Monday, orthopedics for cast removal, x-ray, and clinc on Tuesday, and he has a field trip on Friday! Whew, and I thought it would slow down in May! Please keep praying!


relying on God's strength while I review the scans by myself,

Kara


p.s. Melissa, we got Katsie's invite today!!! It's so pretty!

Wednesday, April 25, 2007 12:01 AM CDT

I'll use Caden's newest phrases to get this started. "At this point" I don't know "what the heck" is going on with our weather. We had the tornado sirens go off three times yesterday! I was very proud of Caden, he did not cry once. In fact, it was quite funny when last night I carried him into the bathtub with me. He had been asleep for over an hour at that point and woke up after we had already been in the tub for almost five minutes. He looked up at me and asked, why are we in here. I asked him, what, don't I always wake you up in the middle of the night to sit in the bath with Gram and Momma and flashlights and pillows and blankets! I guess he's gotten so used to the tornado sirens he didn't even notice them. There was no damage done around our house though. All the damage was north of us. He even got to do a tornado drill at school when the sirens went off. I think us parents were more afraid than the kids! He was so good, he sat against the wall and ducked his head and put his arms over it. He was so brave and never even questioned the teachers or fussed. I was so happy to see him. I was at home when they started and as soon as they stopped I bolted out the door to go check on Caden. They dismissed the little ones early, but I stayed with him. It was still raining really hard and the school and parking lots were chaotic. I helped a little, but the teachers really did a good job of organizing dismissal.

Caden also got his vision checked at school yesterday. I didn't get any note, so I guess it went okay. The school nurse measured him at 40 inches and 38 pounds! He weighed that when we checked into the hospital over a month ago, and now he has a heavy cast on! He has grown taller too, so it makes him look that much thinner.

I think the whole sitting on pins and needles about the house thing is really keeping me distracted from the upcoming appointments of doom. Just Kidding! I'm faithful that no matter what comes out of these appointments, we'll be just fine! I think God knew I needed the excitement of this week to not slide into that slump we fall into so easily.

I signed Caden up to receive a very special visit within the next few months. NF inc. of California has a NF Buddy Bear, or three, that are traveling the globe visiting kids with NF! He stays with them for a week and brings him the NF Buddies book about being a kid living with NF! You take the childs picture with Buddy Bear and send it to them to post on their website. It's a really cool thing and I know Caden will be so excited to receive it! I don't know when I'll tell him since it could be a few more months before we'll get it. I may just wait and explain it to him when it gets here. I'm also trying to think of a really cool place to take their picture. I'm thinking maybe at the Fort Worth Stockyards! I'll figure something out.

Please continue to pray for Caden! Pray tonight for our house. We should know in the morning if our name got pulled to inspect it and put a contract on it! If you didn't get the full story it's in the last journal, in the journal history page! That's also where you'll find most of our appt. dates. Pray for Caden's opthamology appt. tomorrow! I will probably update again after that to let you know what happens there and with the house!


blessed by God,

Kara

Sunday, April 22, 2007 11:01 PM CDT

We had quite an amazing Sunday! James is a firefighter/paramedic. HUD has a program that offers public servants a foreclosed home at half price before it hits the market. You have to put your name on a list and they draw names and whoevers name is drawn gets a chance to look at the house and put a contract on it. We have been watching for houses for a few months, but nothing was right. James found one this weekend! It is in a neighborhood that just a week ago I told James I would love to live in! We have put our names in for the lottery on the house and will find out Thursday if our names were picked. We are asking every one to join with us in prayer that if this is where God wants us to be, the doors will be opened wide. We walked around the outside today and talked to a neighbor. It appears to be a very nice house. It is way more than what we could afford otherwise! I am so excited, but trying to remember that it is ultimately in God's hands. There is a verse and I can't remember exactly where it's found, but it basically says, "Don't talk of tomorrow because you have no idea what tomorrow holds for you." God alone knows where we will end up and we have to rely on Him to walk us through this. Please pray with us that His ultimate will be shown to us!

We also went to our friends performance tonight with the Texas Childrens Choir. It's a choir that sings and dances in very contemporary style, but their mission it to share Christ with others. They paused before one of the last songs to dedicate it to the Fresch family because of the husbands recent cancer diagnosis. Because of the lyrics and the presence of God, there were not many dry eyes! Please pray for this precious family!

I also met another family. It was so weird, one second Caden is playing with these big boys, the next the kids Mom is stopping me to talk about NF. The son has chiari malformation and the daughter is being monitored for NF! Really amazing how the conversation came about, but so ordained by God. I am really hoping that I can be of some help for this family, they are really amazingly sweet. Please pray that there are no further symptoms of NF for this sweet girl!

It was just a really great day and lots of God stuff going on all around us! This has really relaxed me quite a bit about the upcoming MRI!

Please continue to pray for Caden and my sanity as we go through these next few weeks. Here's the dates :

4/26 - Opthamology, check for lisch nodules, optic nerve health, basic vision screening
4/27 - MRI of brain without and with contrast, check for changes in UBOs, brainstem lesion, and that there continues to be NO TUMORS
4/30 - Occupational Therapy re-evaluation, check on regression in fine motor skills, possible therapy solutions for behavioral health problems
5/9 - Geneticist, yearly check, annual review, discuss any new problems from last year

That's all I can remember off the top of my head!


praising God's faithfulness,

Kara

Friday, April 20, 2007 10:25 PM CDT

Oops! I injured Caden tonight. We were playing and he ran at me and when I put my hand up, it clipped him just under the eye. He started crying and he even bled a little. The funny thing is that he cried harder as I was putting on the neosporin and bandaid! He made a quick recovery when asked if he wanted to play gamecube!

He was bad at school again today. He even said so when Gram and James asked him! I don't know what to think about all this right now.

Thursday is his opthamology appointment. This comes with a bit of anxiety itself. They will look at Caden's eyes for lisch nodules, then they will dilate them and check for optic nerve health. The lisch nodules don't really matter anymore. He already has enough crap to have been diagnosed with NF, and lisch nodules don't really cause any problems, I don't think! The whole process comes with a huge sigh of relief when it's over, hopefully. Then the dreaded MRI. I am continuing in the prayers that nothing will have changed! There will be no more UBOs no more lesions and the ones that are there will not have changed. Last, but most important, there will be NO TUMORS!!!

Oh yeah, I put new pictures up! This is the first time I've done this myself. They are huge and I am not really sure how to do anything different with them, but they are there. Check them out!

Please continue to pray that we get good news in all areas. Please sign the guestbook, we love to know who's been here and who's thinking about us. The run down of our next few weeks so far are as follows:
Wednesday, 4/18 - ENT check on granuloma, ear tubes that are non-functional, etc.
Thursday, 4/26 - Opthamologist check for lisch nodules, optic nerve health, basic vision test, etc.
Friday, 4/27 - MRI of brain, check for change in UBOs, brainstem lesion, tumors
Monday, 4/30 - Occupational Therapy re-evaluation, check for any regression in fine motor skills, discuss therapeutic intervention for behavioral health problems,etc.
Tuesday, 5/1 - Orthopedic surgeon check, cast removal, x-ray, clinic visit, re-cast or orthotics
Thursday, 5/3 - Geneticist yearly exam for any changes, review year, discuss NF's affect on Caden, skin exams, skull exam, "spot count", etc.

I'm thinking that should be almost enough for one four year old boy who is actually decently healthy!


leaning firmly on The Rock, the Lord Jesus Christ,

Kara

Sunday, April 15, 2007 3:27 PM CDT

We survived the storms! The F2 tornado that hit here in Texas Friday night was around five miles from the house! We had tennis ball sized hail that made our yard look like it had snowed. James grill may have some damage and mom's car got a dent or two, but so far that's all we've found. God really had his hand over us. Caden did not do so well in the storm. He cried a lot and is still pretty clingy. He was also very mad because he missed his respite night care. We made it up to him by taking him for dessert last night. James works for Haltom City Fire/Rescue, in case you watched the news that's where the tornado and the majority of the damage was done. He works 24 hour shifts, but was working for someone and happened to work his first 48 hour shift, THE DAY OF THE TORNADO. He didn't have a lot of calls related to the storms because power was down, but they did have to be up all night at the command center. I'm sure they are doing some cleaning up today too.

Caden goes to the ENT this week. It's a follow up appt. for the granulomas growing in his ear canal. I was supposed to be doing steroid drops in his ears for them. I haven't been doing them though because Caden can't stand any liquid in his ears. Between his surgery and everything else that's been going on, the last thing I want to do is hold him down a couple times a day to put drops in his ears that may or may not work. I'm sure the doctor will get on to me for that, but oh well! We will also see if his tubes have finally fallen out on their own or if they're still just sitting there in his canal doing nothing!

Thursday is mom's b-day and I have no idea what we'll for her! I wish I had more money and I'd throw her a big party to celebrate that and the fact that she will soon make her last house payment! Yea Mom, way to go! Can you believe, 15 years and three months, that's how long it took her to pay it off, and and at least ten years of that was on her own with no child support while putting me through private school! Yep, she's a pretty amazing Mom and Gram! She's worked really hard and she'll be super rewarded in Heaven. She'll have so many jewels in her crown it will be too heavy to wear and you'll have to wear shades just to look at it! If you want to send her a b-day message, her email is in the guestbook with her messages to Caden from Gram Jan!

April 26 we go to the opthamologist to check for lisch nodules and healthy optic nerves! Then the 27th is Caden's MRI, this sends butterflies all over my stomach! I am praying for everything to be fine, but I would like to find some reason for his issues. I don't know when we'll know the results for this, but you'll know when I know! Please keep praying for his health and these upcoming appts! Sign the Guestbook too please!!!!


thanking God for his protection,

Kara

Friday, April 13, 2007 11:33 AM CDT

Howdy y'all! It's been an interesting week! Caden is back to his old "bad boy" ways. He has had numerous time outs at school. At home he's a little whinier than normal, but not bad. I just don't get it, but this is why the neurologist and I agreed that it's imperative to do a MRI. Here leads to the new concern, someone told us that we need to make sure they will do it. In case you don't know, the M stands for magnetic. Magnets move metal and Caden has hardware in his leg. We were told we're not sure they will do it with the rods and pins in his leg. I don't think that makes a lot of sense since it's just of the brain this time. Surely it won't effect his leg when the machine is just working his head! I'm trying to find some more information on this right now, but hopefully it won't affect anything!

We went to a Ranger's game Wednesday night! My mom's friend, Jackie, had free tickets that they couldn't use, so they gave them to us! We had so much fun and enjoyed the time out. Caden was a little restless, but watched some of the game and loved all the treats and games in the kid's area. We also get a night out tonight, hopefully. Caden gets to go to his respite night place. He goes once a month on a Friday night and plays and has a great time. A local church does it for free and staffs it with volunteers and therapists and RNs, any child with special needs and their siblings can go. He has a blast and usually is there with his best bud Emily. I'm not sure what I'll do, James is working overtime today. The fire department was short staffed so he has to work a 48 hour shift instead of a 24 hour shift! I think mom and I will do something fun. Caden is already asking to go!

We don't have any big plans for this weekend. Hopefully just some cleaning and house keeping stuff. Please pray for everyone in this area today. We have some bad storms that are supposed to move through starting this afternoon. They are forcasting hail and tornadoes! Please pray for protection and safety for us, especially while Caden's at school. That terrifies me for him to be out of my hands with weather like that, but I will as always put him in God's hands! Have a great week and God bless!



relying on God's mighty hands,

Kara

Monday, April 9, 2007 5:28 PM CDT

I know it's been awhile! I just hated to take off that last update. It is just one small example of what God has been doing in Caden's life. Since then, we have been equally busy. Caden went back to childcare at work with me on Wednesday and Thursday. He was so glad to see his friends there and they him. He also had his school easter egg hunt on Thursday. He had a great time.

Friday was opening day of the Texas Rangers, Caden wore his jersey and we watched a little of the game on t.v. They won!!!! I can't wait til we actually get to go to a game this year. We love baseball, especially the Rangers!

Saturday we woke up to snow! Yes, snow in Texas, in April! It was so cold! The church cancelled the easter egg hunt, but still did prizes and games and handed the eggs to the kids as they left. Caden had fun and I got to see my friend's miracle baby, Journey! I also got to hold the sweet angel on Sunday at church! He is so precious and belongs to such a blessed family.

Sunday we woke up and the easter bunny had filled Caden's basket FULL of prizes. Caden was very excited and loved all his fun stuff, especially his Charlotte's Web book and movie. We went to church and came home and had lunch and a quiet afternoon. It was a wonderful peaceful day. It was so wonderful to praise God after having a week of actually being a part of some of His wonderful works. It really made the whole day a celebration of His power.

Today we saw the neurologist. He has two interns right now. They talked with me and gave Caden a fairly good look over. We are so blessed to be at Texas Scottish Rite. The doctor really took his time with us and thoroughly answered all my questions. I did find out that he is a reactive doctor, he likes to do MRIs every 4-5 years unless there are symptoms. I am with the people of thought that once a year is a better idea. Especially with Caden, he has such a high pain tolerance and his behavior is so odd that I might never know if something is a symptom or Caden being Caden. I told him some of the "symptoms"/behaviors we've seen and asked him what I should think/do about them. He thinks they are probably more behaviors and coincidences than symptoms. Luckily, the neuro. does want to know for sure. I will get a call soon with our date for an EEG and Caden will have an MRI on April 27! So, while the doctor is reactive instead of proactive, he was definitely ready and willing to listen to me and do something for Caden. I am so grateful and just a tad bit nervous! Pray for good results!

We finished the day at the museum and the zoo and had a great time!

Tara, I played with a baby chimpanzee today! He was so tiny, probably around ten pounds! He was amazed by my engagement ring and sat there with his hand on mine looking at it for almost three minutes! You will have to come to the zoo with us sometime, I know it's a far way to come for a zoo, but if you really want to play with monkeys, it might be the only way!

Please also pray for a little NF friend of ours. She has recently started chemo for her optic nerve tumors, she is losing her hair and having all kinds of side effects from the stupid chemo. Please say prayers for her and drop her a note in her guestbook at www.caringbridge.org/visit/carlyschmidt . We really do need a cure for this horrible disorder. To many children are suffering from NF. Children's Tumor Foundation (see link at bottom of page) is the main place to donate for research. If you can do it, please do something for research for the cure! I am so blessed to have someone like Melissa so close by that is really taking steps to do something for the cure. Melissa, I can't wait for the tea. Every little bit will go such a long way to providing a future without NF! Our kids need so much hope and lots of prayer!


Thanks for the constant prayers and support!

praising God's power and might,

Kara

Tuesday, April 3, 2007 3:29 PM CDT

I feel like God may very well be laughing at me right now. I have this look of shock on my face and I know it's probably the same "shock" that he sees in my heart and my spirit. I know he's looking at me and thinking why is she so shocked, isn't this what you've been on your knees and pleading for.

That being said, our appointment went well health wise. The surgeon said everything looks good! X-rays look good too. He could see where he put the bone graph in and the rod and everything look great! I'm not sure that means there's growth yet, but looking great in only four weeks time, I'll take it! The surgeon was great today. He was telling Caden jokes and trying to make him laugh. It was so good for Caden. Caden needed some laughing, he didn't do so great. He screamed like crazy while they took the cast off, he screamed like crazy when they put it back on. He even screamed when the doc tried to take the steri-strips off of the incision site, so we left those on until the next time. He did great for x-rays as always though! We did get a smile on him one time! He gave the biggest smile and a huge giggle when he realized that the doc had put a SHORT LEG CAST on him!!!!! After only four weeks, he is in a short leg cast that he can walk on! We go back in only four more weeks and the doctor said we may not need a cast at all after that! Praise the Lord!

In fact, Caden just called me in the other room to see him "skateboard". I ran in there, who knows what he could be doing! He was standing there on both legs with his arms out to his side, "this is how you 'satedoard' momma". He had crawled over to the couch, pulled up, and was standing by himself! I am so proud.

Oh my word! He just called me in to see him walk! He is taking two steps on his own and is so proud of himself! He crawls over to the couch and then walks a few steps to his pillow! God is sooooo good!!!! He might actually be walking while he hunts eggs this weekend! I will have to stop calling the kids on the church flyer for the egg hunt the stupid happy walking and running children! Caden may actually get to be one of those happy walking children! It's about time. My baby deserves a little more happiness!


Thanks for checking in on us! Please sign the guestbook! Don't stop praying either! Caden has his neurologist appt. next Monday, an ENT appt. the next week, an opthamologist appt. the next week, and then a few more to follow! Please keep him in your thoughts and prayers! We still need continued healing and comfort for his leg! Thanks so much!


rejoicing in the Lord,

Kara

Sunday, April 1, 2007 7:27 PM CDT

We have had an awesome weekend! We woke up Saturday morning and the sun was shining so bright. It was perfect. Friday we had some very bad storms. There was a lot of flooding. There was a street a few blocks away that the water was waist deep. The mobile homes that James lived in for awhile with some friends flooded and had to be evacuated. Then the rescue team got stranded and had to be rescued. It was a little scary at times, but we made it through and only had a short electricity loss. Caden was very confused by the electricity loss! By the time we woke up Saturday the street in front of the house was almost dry!

We went to a park down the street for a "special bunnies" easter egg hunt. A group of employees and retired employees from AT&T put this egg hunt on every year. It is simply amazing. They do egg hunts and even have beeping eggs for the visually impaired. They have games that are set up for all types of abilitys and every player wins a prize. They have a bubble table with all kinds of bubble toys and huge bubble wands. They have a clown who does balloons and they do face painting and tattoos. Then, every child who's special needs signs in and gets a name tag. There was a lady at the sign in desk who would talk to the child for a minute while the parent signed them in, later she sought out each child, they had pre-wrapped baskets that she chose for each child she met. She came over to us with a hot wheels tin with candy and a racing bunny in it and introduced herself to us as the president of AT&T. I was floored! She had remembered Caden's name and came over and gave it to him. They also have free popcorn and snow cones for the kids. The special needs kids then get to build their own basket. They gave them the basket, the grass, a stuffed animal, candy, an easter cup, a pencil, and several toys to pick from. It was amazing and Caden had a blast. He came home with all kinds of goodies. All this and only a mile from our house! It was a blessing!

We followed that with even more fun! My good friend Seana and her husband, the best bike racer I know, Kevin Johnson, were in town. This weekend was the supercross race in Dallas. I got Caden and I a ticket and Kevin got us pit passes so we could spend time with them. We even had great seats. Normally I buy us super cheap seats and we sit in rider seating, but with Caden in a wheelchair I had to get us accessible seating. The accessible seating ended up being awesome. When everyone stood up, we didn't have to because we were elevated and could see over them. We were only two sections over from rider seating, so it was just as good of a view. Kevin made it through the qualifying race and then did a great job in the main event! He races such "greats" as Ricky Carmichael and Chad Reed and those kind of "well known" guys. However, Kevin does it with a passion. A passion for God, he races for Team Faith. It is so great to see him up on the platform throughout the arenacross season glorifying the Lord and thanking God for getting him where he was and giving him the victory in all manners! It is truly a blessing to have someone like Kevin for Caden to admire. And admire he does! He thinks Kevin is the greatest. In our book, Kevin definitely is. I had a great time with Seana, getting to talk and catch up. It was so wonderful getting out and just having fun. I even got blessed beyond having a great day. Some of the wonderful pastors who are always there for Kevin and some of the other riders started talking with me. Well, as always, things turned to Caden's medical conditions. We started talking about the power of God to heal and how he works in our lives. It ended up in an awesome and uplifting prayer session right there in the middle of the pits next to the rigs with all kinds of people walking by. It was so amazing to once again have that knowledge of how amazing my God is that he can work in your life know matter where you are! I really appreciated the prayers Larry! It is such an amazing thing Team Faith has going. Caden got spoiled rotten with all kinds of attention and candy and a hat and some stickers. He was so good and so patient. We were at the stadium for ten and a half hours! He only fussed a few times and it was mostly towards the end of the night when it had passed his bed time! He had a great time and so did I! Thank you so much Seana and Kevin! We really were blessed to be there and had a fabulous time. Thank you for sharing your love, friendship, time, and granola bars, oranges, apple, and water! It meant the world to us in the middle of our world that is constantly so tramatic. It really let him be a kid and enjoy life again! I will be reaping the benefits of that day for a long time! You will have so many jewels in your crown for putting up with the two of us! We love you guys!


Just a reminder, Caden gets his cast off and goes to clinic on Tuesday. I don't think we have x-rays yet, but we might. Pray that God's work in this will already be seen and the doctors will become aware that there is only one true Healer. Caden does not do well with the cast removal, please pray that a spirit of peace will reside in him through the process. We also go to the neurologist the next Monday, we need to get a MRI on the schedule and we need prayer that the neurologist there will do it for us so we don't have to wait til May to get one ordered from the geneticist. We follow that with appointments to the ENT and then the next week with the opthamologist. These are all be appointments that could very easily go one way or another. We are continuing to pray that nothing more comes out of any of these and the hand of God continues to reign over Caden. Thanks for checking in on us and please continue to sign the guestbook. Thanks to all you from the supercross who have come to check in on my sweet guy! We appreciate you lifting our family in prayer!


loving God's amazing faithfulness,

Kara

Friday, March 30, 2007 4:03 PM CDT

Well, I guess I can get on with this now! I had last reminisced about Buddy's first year, let's move on! I'm not sure I'm really in the mood to do this now, but here goes.


Caden continued to have chronic ear infections all throughout that next year. He turned one in November and from then to his second birthday he had around eight ear infections. He never fussed about a single one. His eating habits would change. He would be a little whinier than normal. Sometimes he would run a low grade fever. But those were the only symptoms he ever had, it took the second time with these same symptoms for me to figure out. From then on anytime he had those symptoms I took him right to the doctor. After the sixth I heard next one we'll send him to an ENT. We didn't actually get sent to one until the eigth, which was the fall before he turned two. He got his first set of tubes placed two days after his second birthday!

Caden developed a little slower than some of the other kids his age, but nothing that really sounded off any alarms yet. He was finally starting to gain weight steadily and healthy. We had a few incidences of "if he doesn't start doing this or that in a few weeks we need to get help", but he always worked it out.

Caden loved to swim! We found out around the time he was 18 months and summer was starting that he had a fascination with the water. He loved to splash and be "swam" around. We spent a lot of the summer in the pools at the local water park. Around mid-July I put Caden in his favorite pair of sandals. When he walked away his leg looked funny. I thought maybe it was just the way he was standing and blew it off. He started dance class in August. The teacher stopped me one day after class. I had been dancing at this studio for three years at this point so she was really concerned about talking to me and was really sweet. She had noticed Caden's leg and how it looked funny when he stood up and when he walked. I told her I had just noticed a few weeks ago. She encouraged me to take him to the doctor, so at his checkup for his ears two days later I mentioned it to the doctor. This makes me so angry, he gave his feet a quick glance and said, oh, he's just very flat footed, most babies are. He'll out grow it when he's two or three. Then he walked out. At this point I still trusted every word the doctor said, so I was happy. Nothing wrong with my baby, I can handle that, I really knew better, but wasn't about to admit it to myself. Caden's leg just continued to look worse and worse. For those who don't know I'll give a little info on Caden's leg from what we now know. Pseudoarthrosis is the thinning of a long bone. The bone will fracture and separate and does not have what is needed to heal itself. Caden's break was near his ankle and the deformity we see is at his foot. His foot hangs off to the side with nothing to hold it to his leg. We did not know this yet however!

Caden had four major falls this year, all due to poor balance. He fell and hit his fore head on our t.v., got a huge goose egg that split open. X-rays revealed a tiny hairline fracture to the skull, he had no problems from this. He slipped in the kitchen and hit his head on the pantry door. No fractures, but more x-rays. He then pulled himself out of a shopping cart and onto tile floor with me standing there right in front of him. He was buckled in and all! We rushed in for x-rays again because he didn't cry for about thirty seconds after the fall and looked a little dazed. He ended up being fine. The other time he was sitting on a bench and fell and busted his lip open. It bled for over fifteen minutes, but ended up not needing stitches! He recovered from each of these with seemingly no problems.

Because of Caden's recurring ear infections, with tubes, we went back to the ENT. Caden's tubes were trying to come out, but couldn't because some rare growth had attached itself to his ear and the tube. The growth had absessed and was causing a lot of problems. Just a week after Caden's 2nd birthday he had the growth surgically removed, the tubes removed, and the new ones placed. Caden handled the whole thing like a champ. Just as he had everything else!

After Caden's second birthday is when things went downhill for a while. It will take me some time to get up the will to actually write it all down. It was not an easy time for us and it forever changed our lives and the way we look at life.


Caden has his special needs easter egg hunt tomorrow morning and then we are on to the supercross! I am so excited to see Seana and Kevin. Caden is having a hard time remembering things right now so I am having to show him pictures of them. He definitely remembers the dirt bikes though! He is very excited to get to see them race again. I am too, it will be a fun day out for both of us. Please pray for our safety as I will be doing this day by myself. It will involve a lot of driving and maneuvering through traffic and crowds. I also have to find our way around, which is not good, I get confused sometimes in new places. It will be the same as last year though so hopefully I will be familiar with it all. I also will be pushing a four year old and not carrying a three year old, maybe that will help. Please pray that we have fun and that we stay safe and that Caden behaves well.


praising God for my precious gift,

Kara

Wednesday, March 28, 2007 9:52 PM CDT

I have been wanting to do this for a while, so here goes. This is a "brief" summary of all Caden has been through.

Caden was born not breathing. He came out blue and was making no noise. His initial scores were at a 0! They had to tube him and pump oxygen into his tiny body. Once they got him breathing on his own he had to be placed under a warmer because he had lost so much body temperature. His final score was around an 8.

By the next morning signs of extreme jaundice were already there. Caden was born at 11:19 p.m. and had to be forced awake the next morning. His eyes were obviously yellow and skin yellowing was starting to develop. He refused to eat at all. We had all types of nurses and such in the room trying to get him to eat. He wouldn't nurse and wouldn't take a syringe with formula, and wouldn't take a bottle. It took another four hours before he finally decided to nurse a little.

Caden's then thought "birth marks" were noticed the morning after birth and more continued to "appear" over the next few weeks. By two weeks Caden was still jaundice and it took almost a half hour at every feeding just to wake him to try and eat. We took him to the pediatrician and asked about the birthmarks (no big deal!) and decided on a treatment for the jaundice. Caden recovered from the jaundice, but developed new problems.

He spit up constantly. At two and a half months Caden got a fever and was crying constantly and fervently. He had his first ear infection! He was given antibiotics and recovered quickly. Caden was colicky as well through all of this. We now know that the colic was probably due to some of his sensory issues, reflux, and his ADHD/ODD. Caden did not gain much weight for the first six months and failure to thrive was discussed. He most likely would have been diagnosed as failure to thrive, but about that time I stopped nursing and put him on soy formula and he started taking an adult dose of prevacid for his reflux. He started gaining weight after about six weeks on the prevacid. At four months old Caden weighed under 10 pounds. At six months old Caden weighed a little under 12 pounds.

Throughout this time Caden continued to get ear infections. He would also vomit for hours if given even the smallest amount of dairy. Like when we accidentally gave him mac n cheese baby food not thinking about the whole cheese factor! Oops! He rolled over and did the army crawl thing very early. He started crawling on all fours around six months and sat up on his own around eight. He started pulling up and cruising around seven months! He took his first steps at ten months! He was in full walking style by eleven months! He also started falling a lot and had numerous head injuries that were accompanying ear infections. This is just what is coming to me off the top of my head in Caden's first year of life. All this while, the only diagnoses we had ever had were jaundice, GERD, ear infections, and dairy allergy.

I'm going to leave it at that for now and continue on the trip through the next year on a later date. It kills me to know that a child who was not necessarily "sick" went through so much in his first year of life. Yet, what doesn't surprise me is that even through this period of life Caden had that same sense of humor he has now. He loved chasing my chihuahua and growling back at her! He was sweet and very very funny. He even said dog, ball, and momma all before he was 1! In that order too, but I wasn't bitter! I knew he loved me the most! Please continue to pray for Caden. He has not ended this fight that he lives in. The end is nowhere in sight for him. He still struggles just to get the everyday things accomplished. The things that so many kids do so naturally do not come so easy to Caden. Pray that he continues to overcome as he did through that first year! Thanks for checking in on us and encouraging us as we battle NF and all the things it has brought to our family.


surviving in God's hands,

Kara


p.s. Caden did not hear the word chrysalis from school! I have no clue as to how he knew about that. They read a book at school about a caterpillar, it's cocoon, and it turning into a butterfly, but a chrysalis, we just may never know! If you don't know what I'm talking about you need to read yesterday's journal!

Tuesday, March 27, 2007 7:36 PM CDT

Happy penguin day! Caden had a blast today. I don't dare say he actually watched most of Happy Feet, but he sure loved the idea of the day. He got the movie and a Happy Feet watch. We then went to Build A Bear and got Mumble a new Mumble hat and shirt and his friend Gloria. We proceeded to the candy store and got gummy penguins and turquoise rock candy that we dubbed as "icebergs". We had ourselves some pizza and headed home. I popped popcorn and made some juice and got everything set up while Caden asked every five minutes if it was time to watch the movie. Kim and Ryan came over and seemed to enjoy the parts of the movie they could actually watch over Caden's endless jabbering. He enjoyed the movie, but enjoyed the candy a lot more! I have put an end to the candy eating tonight and he's not happy! He is still playing with his penguins and is very happy to have four now, since he's four! It's been a fun day and we've had a lot of laughs and smiles.

I was getting some pretty big guilt trips over him missing school today. However, I learned that his education is quite on track. As we were leaving the house this morning he asked me "what's that". I looked at the doorbell where he was pointing and there was a worm hanging from it. I told him it was a worm. He of course began to argue! He said, "it's not a worm, it's a ____ ." I said a what! He repeated the word again. I thought of every kind of worm I could think of, but it was none of them. After about five minutes of repeating the word over and over I figured out what he was saying. "It's not a worm, it's a CHRYSILLIS". I don't even know how to spell it! He said "it's a chrysillis and the worm is inside turning into a butterfly". I had no idea he actually knew about that. We've discussed worms and butterflies, but a chrysillis! How many four year olds do you know that can say chrysillis and know what it means? I'm just glad that he is actually listening at school. Thanks Mrs. Amy and Linda! I was super impressed!


We are planning on having Kim and Ryan over for dinner Thursday night. Saturday he has an Easter Egg Hunt for special needs kids at a park down the street. I'm going to try and get tickets to the super cross so we can see my friend Seana's husband, Kevin, race. We also have an appointment at TSRHC. He goes next Tuesday afternoon for cast removal, x-rays, and clinic! Start praying that everything looks good and Caden does well! Please sign the guestbook!


believing in God's grace,

Kara

Sunday, March 25, 2007 5:52 PM CDT

Well, we made it through the weekend! We did end up taking Buddy to the movies Friday night. He really enjoyed the TMNT movie. I knew he liked it, but didn't realize how much until Saturday morning. He woke up and insisted we watch "inja surels" or Ninja Turtles in english. He watched some and we just hung out. When I finally decided to get him dressed I forgot to put his pajama pants away. I walked out of the room and then walked back in to find the pants on his head! You know those bands that ninjas wear around their eyes? That's what he said it was. He had also put a pair of underwear on Mumble's head so Mumble would have one! As cute and funny as it was, we did get a picture, I didn't allow it to continue. I found some pieces of ribbon that were acceptible in place of pants. Caden and Mumble wore those ribbons on their heads all night! He even put it back on this morning, I informed him that ninjas do not wear there ninja bands to church and we must leave them at home! If anyone happens to know what those are called, let me know! It ends up he really enjoyed the movie and he has been talking about it all weekend.


We ate dinner with the Gainey family last night and really enjoyed our time with them. It's really sad knowing that there won't be any more memories made in that house. The new house will be beautiful, but I will miss the old one. We have spent countless holidays and "vacations" there. Caden had a blast and as I guessed spent most of the time yelling at Uncle Adam to play with him. He was decently well behaved and I enjoyed getting to see Kim and Ryan and Adam. Uncle Joseph and Auntie Melissa were there for a little bit, but had a previous commitment.

Caden is so looking forward to Tuesday and getting Happy Feet. He tried to convince us that today was Tuesday and we were going "wight now" to get the movie! We will go to speech on Tuesday and head straight to buy the movie, Mumble's hat, and snacks for our penguin party with Uncle Ryan and Auntie Kim! I can't even begin to imagine how many times we will watch that movie this week and for the months to come. I just love how he gets so passionate about things. He never really stops loving what he gets passionate about, he just gets a new passion. He really makes me laugh!

I hope everyone is having a great weekend. Please stop by a friend's page for us. Her name is Carly, webpage is just like Caden's except visit/carlyschmidt . She has NF1 like Caden and has started chemo recently to battle her brain tumors. She is struggling and I know it's not easy on her parents or young siblings either. Please leave them a note and say prayers for them! Thanks and God bless!


believing in God's healing,

Kara

Friday, March 23, 2007 1:24 PM CDT

Hi all! We finally got things worked out at the doctor's. It is so much easier to get him in and out of places now. It did however involve some anger towards the people at the doctor's office, but they felt bad for all the mistakes they made and took care of things immediately. I picked Caden up early from school yesterday and took care of all the stuff involved to get the tags and then we went to celebrate. We went to get ice cream! Caden got a kid's waffle cone with chocolate and rainbow sprinkles with chocolate ice cream and chocolate sprinkles! I got a cone of the delicious cheesecake ice cream! I was so good! Caden got a lot of ahhs while devouring his cone. He had chocolate all over his face and hands! The ladies from the beauty school next door were going gaga over him. It was quite cute and I'm mad that I didn't have my camera.


He woke up this morning with a cough. I think he's starting to get whatever I had last week. I am going to load him up on sudafed and pray it goes away. My little sister and her husband come in town tomorrow and I can't wait to see them. We are going to have dinner with them tomorrow night at her parents house, she's my "sister"- no blood relation. Her little brother will be there too. Caden is really excited to see them all, but we all know he'll end up wanting to play with Uncle Adam! We are also planning a penguin party with them for sometime after he gets the Happy Feet movie on Tuesday. We are making a huge day of this. I am keeping him home from school to go get the movie and then he gets a new outfit for his build a bear Mumble and some gummy penguins from the candy store! It will be quite a day, but something we both really need after all we've been through this month!


I think we may go see the Ninja Turtle movie tonight! James was a TMNT freak when he was a kid. His dad says there was not a corner of the house that there wasn't a ninja turtle in. Caden like them, but is not as crazy about them as James wishes he was. Oh well, we will see the movie anyway! It's going to be a busy weekend so I probably won't update again until Sunday or Monday, unless Caden goes ahead and gets sick on us. In which case we will need lots of prayers! I can't stand what his little immune system does to him. He just can't take much of anything. I have been wanting to journal sometime what Caden has dealt with from the time he was born til now. I might do that one day next week. My baby has struggled from the second he came out! Be on the look out for journal entries next week, I will try and muster up the courage to write it all out! Thanks for checking in on us! Please sign the guestbook!


finding God's peace,

Kara

Wednesday, March 21, 2007 4:11 PM CDT

I just have a quick bit of ranting to get out! Why does this stinking pediatrician make everything such a process. All I need from his is his signature and that of a notary. Does that really take 48 hours? I know we're not his only patient and he has a lot of other things to take care of, but seriously! I dropped off the forms to get a handicapped hang tag for my car yesterday after school. As of a few minutes ago he had still not filled them out. They are sitting on his desk waiting for a whole thirty seconds of attention! I should have just stood there yesterday and caused a scene and made him come out and sign them then and there. Now I have to go get them in the morning and then take them to the vehicle registration office. I am going to breathe one huge sigh of relief when I have the hang tag in my hands! It is a huge pain in the butt dragging that wheelchair across the far corners of the earth just to take him places. Although at school, I've just been parking in handicap spaces illegally! Some days that's the only place to park in the parking lot! I am just so sick of having to make a fuss to get things done with the pediatrician.


On the funny side, we took Caden to the zoo yesterday. A lot of you are reading this and thinking, they sure go to the zoo a lot! Last year I won passes for us in a silent auction for a very small fraction of the normal cost. This year the cost was discounted since we were returning members. With parking and discounts I pay for the passes in two or three visits. It is so nice especially since the zoo is only a few blocks from his pediatrician's office. Yesterday we got there just an hour and a half before it closed and it was thundering and sprinkling off and on. There was almost nobody there and the animals were loving the wind and humidity. The funny thing that happened was with Caden's act-alikes, the monkeys! We actually had a monkey playing with us! They have a thick glass wall that divides them from us in one section. The monkey was sitting against it with it's back turned and I knocked on the glass to try and get it's attention. It really startled us when it knocked back. We had that monkey going for almost thirty minutes! It would beat with two hands when we did. It would open it's mouth if that's what we were doing. It would follow our hands as we knocked left and right. It was the funniest thing! Caden was thrilled and we got some really good giggles out of him. We ended up attracting such a crowd that we left and let them play with it. I don't know how much longer it went on, but the crowd was still over there when we left the zoo ten minutes later! That will probably never happen to us again, but it was a really great memory!


Caden also discovered roly-poly bugs last night. We went on a walk and stopped to talk to a neighbor. He had roly-polys all over his grass and sidewalk. Caden thought they were pretty cool and let them crawl all over his pants! He was so funny, he wanted to know their names! Our neighbor is a grandpa, so he obliged Caden and named every one we saw! Caden also was the guardian yelling at anybody who was about to step on one! He is such a character!


He's had a good few days! He's done great at school and been in a decent mood at home. He only woke up one night crying in pain, but as soon as I gave him pain meds he went right back to sleep. He has come a long way and still has a long way to go. I still don't have an appointment date for our next set of x-rays and stuff, but I will call tomorrow to get that ball rolling. Pray for him until then! Sign the guestbook please!


praying for energy,

Kara

Monday, March 19, 2007 3:42 PM CDT

Yay! Caden went back to school today! He had a great day and I went and stayed with him as I promised him I would. He was very glad to see his friends and loved riding in his chair right next to his friend in hers. He did really well getting around in his chair too. He really only needed help a few times. I do have a hero award for the day though! Caden was messing around outside on the playground. We kept warning him not to get so close to the edge of the sidewalk, but in typical Caden fashion he did it anyway. Well, we thought he was going to stop himself before he hit the edge, but he didn't. He went over, wheelchair and all, he's buckled in so he goes where it goes. Then came Mrs. Linda to save the day. She jumped up and lept over to him to try and catch him. She pretty much made it, her coke didn't however. The coke flew out of her hand, she skidded on the ground, and Caden still fell over. Luckily he didn't fall head first! He just tipped over sideways. She sat there and had dirt on her hands and grass stains on her pants. It was truly heroic, not to mention a funny to watch! Caden was fine and I think Linda was too. I hope he learned not to do that again, but I wouldn't be surprised if he does it at least once more. Thanks Mrs. Linda! You're right, you do give your all for our kids! That's my funny story and hero award for the day!


We also got Caden's wheelchair all fixed up today. We ran over to the hospital this morning to have some things adjusted. They fixed his footrest and his seat buckle and a few other things. It is good to go and they are now aware of the adjustments that will need to be made in a few weeks for his long leg walking cast. We are so blessed to have a hospital filled with people who genuinely love their work and that we don't have to pay a penny for it. I really feel lucky that we live where we do and can recieve these services so easily. God really does take care of us!


We don't have any other big plans this week, just trying to adjust back into work and school schedules. Please sign the guestbook!



in God's grace,

Kara

Sunday, March 18, 2007 2:33 PM CDT

Thanks Gram for the previous entry! I just never know if this computer is going to work or not. Caden has had a good weekend. He's been very tired, but he's also been very active. We took him to the mall yesterday. James and Caden went to Bass Pro Shop and looked at all the cool boy stuff and animals while Mom and I went to the Grapevine Mills Mall and did some shopping. Caden enjoyed the animals, but was quickly ready to head over to the skate park to watch the big boys skate. I hope he eventually will get to have a skateboard of his own! He loves everything that has to do with boarding! He didn't last long past that. He got very tired and wanted to go home. Mom was also tired so she took him home while James and I stayed. Thanks to mom, I got a few new outfits and a new pair of shoes this weekend. Caden got a new "skater guy" outfit. It's very cool and was majorly on sale. I also bought him some fun stuff for his easter basket.


Caden got to go to church this morning too! He did pretty well considering the changes. His friends seemed to be very accepting of his new cast and wheelchair. He was very pleased that they liked his flashing wheel lights too. He did get very upset when his chair did not fit under the table like he wanted! They had to call me in to calm him down and explain to him why it just wasn't going to work. Poor boy, he's had to make a lot of adjustments and he just wanted to be at a table like the other kids. Other than that and not wanting to talk to grownups much he did very well.


We enjoyed the greeness of St. Patty's day and had a good time with it. We are now anticipating Easter. We love Easter. I have some great stuff for his basket and am trying to figure out what we'll do about egg hunts and stuff. We may just have to skip them all and have one of our own. I know his teachers at school are planning on making eggs easily accessible for him and his friend in their wheelchairs! We are so blessed to be in a class with great teachers who are so willing to work with his needs. Caden now knows that Happy Feet is coming out on DVD soon! He has been talking about it all day. I can't believe some of the things he remembers from seeing the movie back in December. We will go and get it the day it comes out, but I may hide it and save it for Easter. Charlotte's Web comes out on DVD just a week later, so I may give him Happy Feet and save "Wilbur" for Easter.


Thank you so much for the cards and prizes and visits Caden's received. He absolutely treasures each and every one of them. The movies have been especially wonderful. Please continue to pray for his healing. Please put your name in his guestbook as well!


enjoying God's blessings,

Kara and family

Friday, March 16, 2007 2:29 PM CDT

Hi, it's Jan, Caden's Gram. Kara's computer has crashed, so I'm updating for her. Caden is doing great. He's turned a corner the last few days and hardly complaining at all about "My cast is hurting, my cast is hurting." He can't say it just once and usually it's more than twice! He's no longer complaining about his rib site either, except when we forget and pick him up wrong. He's totally off his pain medicine during the day and handling that without any problem. Kara is giving him Tylenol and that seems to be working sufficiently. What a miracle that is! Kara is doing better as well. Her headaches are gone; although she is still battling the head cold symptoms.

James and Kara took Caden to the park in his wheelchair yesterday and he was so excited to get out of the house for a while. Even though he doesn't last being up very long, it was good for him to get out in the sunshine. The doctor said he could try school next week, so we'll see how he's doing on Monday.

Thanks for all the cards and gifts and visits and prayers. Caden loves getting mail and carries it around until the envelopes are wrinkled and worn. And thank God for movies and books! Movies have been a lifesaver since he's had to be immobile.

Melissa reminded us that Caden's green cast is perfect for St. Patrick's Day - of course that was planned!!! :) No chance of pinching for him because you can't miss the totally green leg!

Keep praying the Caden's bones grow and heal properly. God still does miracles and we need one for this little boy and so many other children we've met recently through his hospital stay.

Thankful for all of you!
Gram Jan

Tuesday, March 13, 2007 10:25 PM CDT

The Green Machine is back!!! Well, sort of, he's improved drastically today! I got a little bit of "my Buddy" back. He was definitely more playful and laughed a lot more. He of course still doesn't do much. Just moving from one side to another and scooting up or over while sitting is very difficult for him. His pain does seem to be a lot better though. I do wonder if he was being his dramatic self a bit. He is definitely in pain, but he was going a bit overboard with it. I finally told him if he was in that much pain that we needed to go back to the hospital and have his doctors look at his cast and back. His constant crying and fussing ended in about thirty seconds. He still complains and cries some, and that's so okay. I'm just glad that he decided it wasn't neccesary to do it all day. His pain meds are lasting their full time and occasionally plus some. When he's been a little more active he fusses about hurting a little more than an hour before his next dose is due. I've just been giving him a little Ibuprofen to hold him over and it seems to work, it could just be mental though! He has been a much happier boy today and for that I'm grateful. It's so nice to have that smile and laugh back. He also ate very well today. He ate almost his whole big corny dog from Sonic today and almost all his bowl of oatmeal tonight! Hopefully tomorrow we'll see even more improvement.

My migraine is gone, but I still feel pretty crummy. My breathing is fairly labored and my sinuses have a lot of congestion. I am doing a lot of OTC stuff and hoping it will go away soon. I think I probably got sick from not getting much sleep from all this, but it's nice that I got sick while Caden is still down a little. I get to rest a little more than I will ever have the chance to again. My mom even came home early to help out with Caden so I could make sure and rest. I am about to go to bed and hope I get to sleep at a decent hour. Thank you for all the prayers for Caden and I! They have really been felt! We are both on the mend and should make a quick recovery back into real life. Thank you so much for your unceasing support and love! Caden is loving all the spoiling he's getting. I don't plan to let it stop anytime soon! This baby has been through two very difficult procedures in just under six months time and has kept the same sense of humor and sweet personality through it all. He is absolutely amazing and deserves all the prizes he's getting! I love you Buddy, you amaze me each and every day!!!!


loving this Gift from God,

Kara

Monday, March 12, 2007 2:35 PM CDT

Thank you all for the emails expressing your concern as to where we are. I am happy to report we are now at home! We came home yesterday afternoon. Caden was very happy to be home and I was too. Not long after being home I got sick. My sinuses are all kinds of messed up. I have been laying around and resting since yesterday. We are having some major movie watching marathons here. It seems to be the only thing that keeps Caden occupied from the pain. He really has been in a lot of pain. It's so hard watching and hearing him cry and knowing there's nothing I can do to make it better. He hasn't fussed to much about the graph site at his rib, it's mostly his leg that's bothering him this time. I think he is really sore and forgets that he can't move his leg much in the cast and it hurts when he does. He had a hard time getting to sleep last night, but when he did he didn't wake up until 5:30. That was two hours past due for pain meds so I gave him those rocked him for a few minutes and put him back to bed. Well, my little morning bird slept until 11:30! He has since been watching movies and playing with his buzz lightyear. We also have gotten him to drink two cups of strawberry mile, a handful of nilla wafers, and a half of a grilled cheese sandwich. It doesn't sound like much, but that's more than he'd eaten yet!

Our stay in the hospital was really not that bad. The last three days we had a wonderful nurse named Erica. She was so sweet and absolutely adored Caden. She even brought a few of the other nurses to see just how cute he was. She always made sure he had exactly what he wanted. She was so incredible. She is almost through getting her masters, she wants to be a nurse practioner and either work in orthopedics or pediatrics. We wish her the best of luck! I also got to meet my friend Melissa face to face! She brought along her daughter ( who I've mentioned here before-she has NF also) and her son Colt. They were so sweet and Caden had a great time with them both. It's her daughter, Katsie, who's nana keeps leaving Caden those sweet, sweet messages and cool pictures in his guestbook. Thank you so much for your family's friendship, all of you!


Caden has generally been spoiled rotten this past week and I don't know how I am going to turn things back around. It will be so difficult getting back into "normal" life. Caden is wheelchair bound for the next month at least. Because of the incision on his back and the bent knee cast, he can't hold himself up or bear any weight himself. This is tons of fun as you can imagine! He isn't crazy about this either. He is not a huge boy, but you add a long cast to a 35 pound boy and throw him in the arms of a not so big momma, IT'S KILLING ME!!! My back is going to be so messed up after all this! Oh well, if we can get his leg growing, it's all worth it.

We are going to take it easy and stay home this week. Caden doesn't have the strength to be up and about for much more than thirty minutes, then he needs to lay back and rest some. If he's any better he can start school next Monday and he'll go to work with me on Wednesday. I decided to give him a break from speech for a couple more weeks. I'm not real sure how things will go at work, with him being in a wheelchair and all. The room is not real big and I don't think it will be much fun if he's confined to his chair. I may stick with my original plans and have James not work the days I do and the boys can just stay home. Other than that we have no plans to do anything.


Please pray for Caden's continued healing. Pray that the pain will end and he can get back to being himself again quickly. Pray that my sinuses will clear up and I can function as well as I need to take care of Caden. Thanks again for all the support. We really do feel blessed to have you all in our lives!


praying for God's comfort and healing,

Kara

Saturday, March 10, 2007 3:46 PM CST

We are still here! We are up to visitors any time today! Visiting hours are over at eight. Caden had a fever last night and a low fever this morning, but they took care of it and he's fine. We also had some minor pain management issues. I decided I wanted to make sure he was well and his pain was under control before I bring him home. He has been napping since about 1:30, which was an issue in itself. The good news is that we got him in his wheelchair this morning. He lasted around thirty minutes and then we had to take him back to bed. He just does not have the stamina for it this time. He has also learned how to roll around on the bed. He still has an I.V. in his hand, but is not connected to the fluids. They are threatening that if he doesn't pee after he wakes up then we'll have to put him back on for a few hours. He is finally willing to use both hands now so we really don't want this. He is still very grumpy, but has had some moments today where he is more like himself. My plan right now is to be out of here by around 10 tomorrow morning. It shouldn't change, but I will update if it does. I still don't know when he'll be able to go back to regular activities i.e. speech, school, church, etc. He will not be allowed to try a walker for at least two weeks. He will have to rely on his scooter board (a.k.a. plastic mechanic's creeper) and his wheelchair to get around. He can handle the wheelchair fairly well so I'm not too concerned. We still can't get him to eat much solid foods, but he's getting better. He ate some fruit loops this morning! It's all sugar filled, but it's something. I don't see how he could want to go home. Here he gets to have popsicles, jello, ice cream, milkshakes, slushies, and teddy grahams around the clock. He'll get some fun stuff at home, but nowhere near that good. We look forward to some very special visitors this afternoon and then getting to go home tomorrow. Please pray for a good nights sleep tonight and that he'll start eating and drinking better! We are so thankful for all the prayers we've gotten this week. We love you all.


loving God's goodness,

Kara

Friday, March 9, 2007 4:54 PM CST

I promise we are all still mostly alive and doing fairly well! Caden and I did not get much sleep last night. He was in a lot of pain and having severe muscle spasms. He also developed a blood clot in his IV line that they had to treat so his medicine and fluids could get to him. He has been having good output of liquids though, he really struggled with this last time. He has been very fussy all day and hasn't eaten or drank much. We finally got him to take a slushy and they unhooked him from his lines and let him get out of the room. We padded up the wagon and took him on a nice long walk in the park. He drank so much while we were out that he now gets at least two more hours free from lines! I just pulled out the scooby doo vanilla wafers he picked at the store and he was very excited and began eating. Hopefully as the evening progresses we can get him to eat a few other things as well. He only got sick once. It was yesterday and we tried a popsicle a little too soon. He ate some jello today and a few handfuls of cheerios and two small cups of juice. He slept for most of the morning and slowly has become a little more active this afternoon. The buzz lightyear the hospital gave him has been a life saver. He will do almost anything for and with that toy! Unless he improves drastically overnight, I am pretty sure we will be here until Sunday morning. I am so tired as I may have gotten around four hours sleep overall, only an hour consecutively. We are only having a few more visitors tonight so it should be fairly restful. Saturdays at the hospital are typically slow and we might have several visitors so I pray we get plenty of rest tonight so we can be ready to have some play time. He got his wheelchair, it's blue. We can't try him in it yet. He does not have the strength to sit up on his own. Hopefully tomorrow he will be ready. The spot under his left arm towards his back where they took the rib bone from is very sore and his leg is hurting him a lot too. He has a very long way to go before he's ready to get back to life, but he's been so strong and brave so far, I have no doubt we will get past this all very quickly. Please continue in prayer for us all.

SIGN THE GUESTBOOK!!!


relying on God's strength and energy,

Kara and family

Thursday, March 8, 2007 4:41 PM CST

We are back in our room! Caden did great in surgery and the surgeon seems pleased. He said he thinks it was very successful. Caden seems to be comfortable enough and is very alert for having been out of surgery for about an hour. The surgery took approximately two and a half hours. He is complaining of his cast hurting, but not much else. His cast is a long leg bent knee cast and it is green again. There is no split this time, so obviously swelling was not bad. He is on morphine again and is handling it well so far. He only allowed me to leave cuz I promised him I'd be in the next room and be back really quick. Please leave us a note in the guestbook. We still have the long road of recovery left to go. Tonight and tomorrow should be the hardest. Continue to pray against swelling, pain, and infection. We appreciate each and every one of you.


loving God's goodness,

Kara

Thursday, March 8, 2007 8:22 AM CST

I am still exhausted! Caden was not going to sleep last night. He finally decided to sleep a little after 10. Child Life brings all the inpatients a welcome bag with toys, activities and a poster of information about the child to help their doctors and nurses know how to best treat them and talk to them. Well, Caden's bag included a really cool Buzz Lightyear toy. He was in love. He did not put it down until I made him last night. He woke up this morning rolled over, rubbed his eyes, sat up, and said where's buzz lightyear, I want him. They really hit the mark with that one! The hospital is slightly short staffed on nurses, but they are hoping to be back up to numbers by tonight. Pray that Caden gets the quality care he deserves tonight! They are so sweet and go out of their way to make sure we are fine, but he's going to require some extra attention tonight.

The good news, they have moved surgery up to 12!!! Caden woke up and had a popsicle, jello, and apple juice shoved down his throat, poor kid, huh! That is all he can have today! We need prayers that he'll be distracted enough not to notice his hunger! We should have a barrage of visitors by around 11! We would really love to know everyone who says a prayer for Caden today! If you even just stop by, please put an entry in the guestbook! You don't even have to say anything, just names of those around you who are walking through this with us. You are all such a blessing in our lives!

One more time, here are the facts: We are in patient room 327. Caden is scheduled for surgery at 12, we will probably go down for sedation around 11. They will take x-rays, then take rib bone from his back, remove some diseased fibula bone, place the rib bone with some added power bone growing stuff into the fibula and attach it to the tibia. They will also be removing the old rod and putting a new one in. It will probably be at least 3 hours of surgery. Continue to pray for Caden's health and safety. Also for God's guidance of the hands of everyone who touches and treats him today! We are fully believing in God's power today and that God will use Caden to let everyone who treats him know of His Glory!!!


walking in God's Glory and Grace,

the Madison family and friends!!!

Wednesday, March 7, 2007 2:38 PM CST

I am EXHAUSTED!!! It's been a long day is a huge understatement! We are finally in a room! That's right, we've been admitted! All thanks be to God. Caden is in room 327. He was incredible today. He got very hyper towards the end of appointments, but overall he was so well behaved and patient. He didn't even cry during labs! He got tons of toys and prizes and stickers too. He is in the room right now with his friend Joyfull the clown. She has once again made a trip just for Caden and has made several kids smile today. Caden's surgery is tentatively scheduled for 1 p.m. We have talked to the nurse and she is going to try and move it up for us. That is a long time for a little guy to go without eating or drinking! He seems at ease and is having a blast playing with Joyfull. They will take the graph from a rib this time. They are also going to attach the graph to his tibia for added support for our next surgery to fix the ankle. They will replace the rod with a new one. He will be in a non weight bearing cast for at least a month post surgery. At that time they will reevaluate and decide whether or not to put him in a walking cast. Thank you so much for all of those who are praying for us. It was a long wait, we waited over two hours to speak with an anesthesiologist, but we made it through and are pushing on to tomorrow. I might try and update tomorrow, but I will probably be pretty on edge, so probably not! Please continue to pray for Caden's health and safety as he goes through this difficult procedure. Pray that he will not be hungry and that his pain will be manageable. Pray that the surgeons, doctors, and nurses surrounding him will be guided by God's hands. Pray for my family and friends as we walk Caden through another tough recovery!

Keep an eye out for updates on any changes. Any one is more than welcome to come see us. Again, we're in room 327!


thanking God for his faithfulness and protection,

Kara


p.s. Melissa, I can't wait to finally meet you and Katsie!

Tuesday, March 6, 2007 8:30 AM CST

Caden has made a miraculous recovery! His fever disappeared and his blood counts have recovered! We still don't know exactly what it was, but whatever it was the Rocephin injections really took care of it. We still don't know if Caden can have surgery or not. When we go for admissions tomorrow we will have an appt. with the anesthesiologist. They will do their own check up and we will discuss his recent illnesses. It is totally up to them. Please pray that the right choices will made by all. I don't want to postpone this surgery, but I definitely do not want to put Caden's health at risk. I personally feel he may be healthy enough, but I'm not the expert! We have a very busy day today and the computer's been acting up! I will have my mom update tomorrow as soon as we know ANYTHING. Keep an eye open and check frequently. We should know everything by around noon. My mom has already gotten a hotel room so even if surgery is rescheduled Caden and I will stay there and go to the Dallas Zoo on Thursday! I figure we've paid for the room and our bags are packed, so why waste it! Plus, the Dallas Zoo has a penguin exhibit, we'll turn our "tragedy" into a celebration! Please keep praying!


Kara

Sunday, March 4, 2007 9:25 PM CST

We need some major prayers. Caden woke up from his nap with a 106 degree fever. We took him to the Urgent Care Center. He has an elevated white blood count. We should find out on Wednesday exactly what is wrong. They took blood cultures and urine cultures. He got two shots of antibiotic in his legs. We have to go back tomorrow to check blood counts. I also have to call the hospital and inform them about the illness. I am almost sure that they will postpone surgery. This is two illnesses within two weeks. I can't see how they could clear him for surgery. He needs to get better quickly. We also need to pray that things work out with our surgery schedule.


Thanking God for the good days,

Kara

Wednesday, February 28, 2007 3:38 PM CST

I'm sorry about the length between updates. We've all been exhausted lately. Caden is having a lot of anxiety about surgery next week. Today has been the first day that we haven't really had any behavior issues. He had a really bad time from Sunday on. He has been sleeping a lot too. I think he may have also been exhausted from recovering from last week's fever weirdness. He is all better now. Thank you all for saying a prayer for him. His congestion is completely gone and he's had no more fever!

It has been so warm here this week. We have had highs in the mid to upper 70's so far. It has been gorgeous and made for some good play time. I am trying to get him moving as much as possible before surgery. It took him almost three weeks last time before he was mobile. He has also had a bath every night. Some lasting as long as an hour. I am dreading going back to sponge baths. He hates it and it's so difficult. I am going to have a meeting with his teacher next week to discuss some more ideas for him. I am going to have him bring his kite for windy days. I am also going to suggest that him and his friend Sarah, who's in a wheelchair full time, play some ball together and other games. I am also not sure what to do about end of the year party. They usually have a water party with slip and slides and sprinklers and water balloons and other types of water play. Well, he obviously can't do that in a cast. I hate for him to miss out, but it's also not fair for the other kids to not do that because of him. I will try and brainstorm with his teacher to see if there's any other solutions. That's been the hardest thing this time around. I now fully understand the things he'll miss out on. One of his best buddies will have a birthday in April. He will most likely still be in a cast and she will probably have her party at a bounce house place. Long leg casts and bounce houses don't mix well. One of his favorite things to do is swim. He will miss out on the swim therapy class he does on Saturdays and if this surgery goes like the last he will not be able to swim most of the summer. I try not to let him hear me talk about these things in hope he won't remember, but I'm thinking the chances are slim he won't know. He will know as soon as he sees kids on the slides at the water park we go to all the time and pass several times a week. I think I may have to go a long way around to get some places in order to avoid it.

The good news is some cool surgery prizes I've found for him. I bought him the Hungry, Hungry Hippos game today for only $3. I also found some Happy Feet fruit snacks and a few movies for him. He is going to be thrilled! I am also going to go to www.penguin-place.com. They have tons of amazingly cool penguin toys, and they are mostly inexpensive. They even have a penguin that "poops" candy. He is going to think that's hilarious. I'm not sure what else we'll get, but there's tons of stuff.


We don't have much else going on this week or weekend. I'll just be doing some getting ready for the hospital and recovery. I don't need to pack quite as much this time. Mom is going to only stay in the hotel for one or two nights and will be going back home for the rest. I figure I can leave some stuff home and let her take some stuff home and bring me back the rest. It is kind of nice having a better idea of what we will really need. I know this time to bring Caden lots of shirts and me lots of socks. There was a lot of excess fluid on him and the floor last time! Caden, the boy who wants the world, recently updated his wish list. His wish list is a list of random toys and stuff he points out at the store every time we go that his mean momma tells him no he can't have today. He does know that if he really wants it and I say no that he can add it to his list. We, his family, use it for holidays and prize needing events, like surgeries. I also keep the list in my notebook and he loves seeing all the things crossed off. He always ask what's crossed off and who gave it to him and what for. He's pretty good about remembering on his own too. I have written way to much, and your heads are probably spinning by now! I am so sorry. I am anxious as well and often only have a four year boy to talk to. He only wants to talk about penguins, so I don't get much of this stuff out! LOL!

Have a great rest of the week and SIGN THE GUESTBOOK!!!


Kara


p.s. We have a friend who's looking for a bunch of different rubber ducks! I have helped her find tons, yet she still wants more. If anyone knows of how we can find ducks of Disney characters, please email me or post in the guestbook to let us know. Thanks! Hi Diane, see I really do have tricks up my sleeve!

Friday, February 23, 2007 11:21 AM CST

I do have news, but I also wanted to get that last icky post off. I was in a little bit of a mood and very frustrated with Caden's fever. He woke up this morning and the fever was gone! He has been in a fairly good mood so far.

I called back to the hospital to talk to the nurse. This time she got back to me within ten minutes. As I thought, she got the message from earlier this week and understood and agreed that surgery would stay on schedule. I figured by not having heard from her that this was the case, but my family had to know for sure. She said that as long as his doctor said there was no problem, then we were good to go! This is such a blessing. Caden should just be ready to go back into public and maybe start walking some when Easter rolls around. We still need to pray that he continues to be well for the next two weeks. We need to pray that the fever does not return and that his congestion does not move into his chest. We need a happy healthy boy to be going into this difficult procedure. Again, if anyone wants to send him a card, it would be great to get them pre-surgery. That way I can take them with us and hang them in his hospital room for decoration. If you need our address you can email me. Caden loves getting cards and is known to carry them around for days. It means a lot to me as well.


We have no big events planned for this weekend so I may not update again until next week. If anything happens I will definitely post. Have a great weekend and please continue your prayers. Sign the guestbook!


walking in God's constant faithfulness,

Kara

Thursday, February 22, 2007 10:02 PM CST

Well, I'm not sure what's going on. We are living in a state of complete confusion. Caden has been fine for two days now. We've been back to "normal" life. His fever popped back up tonight. He still has no symptoms. His nose isn't even as stuffy as it was. It has started to run a little now, but it's still clear. He was a little fussy and cuddly tonight, but was fine all day. I don't get this kid. I still have not heard from the nurse yet. I was hoping no news was good news and we were sticking with the current schedule for surgery. I will call back tomorrow to make sure nothing has changed. I will be sure and update when I do know something. The worst of this all is that everyone else sees him as just another four year old boy. He is so not that. He looks like your average three or four year old. He does NOT behave like one though. His mind does not work like most kids. He knows he can't be understood and will not use words to express himself. I think another thing a lot of people take for granted is his pain level. I have no doubt in my mind that Caden has lived his whole life with an extremely high amount of pain from the multitude of problems his little body deals with. If an adult had half the issues Caden does I think some of them would give him a break every now and then. I don't want him to be given special treatment, I want him to know he has to follow the same rules as everyone else. Sometimes he just needs some extra help in following the rules. I don't mean to rant like this, but we had some issues just this morning at work. I just can't begin to explain to some people that you can't expect Caden to act a certain way. He is who he is and he's getting better about his behavior all the time. He works five times harder to do things that the other kids around him do. I think he deserves a huge amount of credit for accomplishing what he has. Some adults just can't get it. I will admit it is a complicated issue. Caden takes in the world in different feelings and thoughts than most people. He doesn't feel a hug the way we do. The sun isn't just bright to him, it hurts his eyes. The blocks that he spent a huge amount of brain power, a lot of energy, and much difficulty to build are not a small deal. Someone messes with them, it's like someone tearing up your paper you worked on all night and were planning on turning in the next morning. That's the kind of effort Caden puts into some of the "simple" daily tasks. Playing "nice" isn't as easy as it sounds. That takes herculean brain power and a lot more control on his part that most ten year olds have. As smart as he is, he just does not yet have the capability to think that way. I will probably update tomorrow to get rid of this because it's nothing but misery. After all this I do have this to say. My baby boy is incredible! He loves school. He loves other kids. He is soooooo sweet. He can jump and almost run. He can laugh and smile. He can learn. He has made some HUGE accomplishments in the past two years and he continues to make even bigger ones. He can talk about his upcoming surgery without so much as a quiver of the lip or the blink of an eye. He knows he will be in pain, he knows he will be immobile for awhile, he knows he will miss a lot of things, but he still does not complain or cry. My sweet Caden is brave! I am so proud of him and all that he has overcome. He has a long road ahead, but I know he will go all the way with a smile on his face. Please pray for my baby as you go about your day tomorrow. We need his fever to go away. We need him to be healthy so he can keep the current surgery schedule. Thank you for listening to the ranting of a crazy momma. God bless you all!


Kara

Tuesday, February 20, 2007 8:47 PM CST

It's an amazing feeling to have a doctor be puzzled by your child. Caden still had a fever. His nose is the only thing with congestion. His blood counts were all normal. There is no reason for a fever. The doctor thinks it will pass soon and buddy doesn't need any medicine. This is hopefully very good. He says there is no reason Caden shouldn't still be able to have surgery as scheduled. While he can't breathe well through his nose, he is still getting plenty of oxygen and it's not affecting his lungs at all. As long as the doctors and nurses at the hospital will accept this, we're still on for March 8. I left a message for the nurse today and should hear back tomorrow. Please continue to pray that Caden's nose clears up and his fever goes away. Pray that the doctors and nurses will go ahead with surgery as planned.


We did add some fun to our day today. Even though he has a fever, he is not feeling bad. So, we went to the zoo. As I have said before, the zoo is only a few blocks from the doctor. In fact as you drive down the road to the zoo you can see his doctors office from across the river. I figured as long as he didn't touch stuff or sneeze on anyone it would be fine. Caden was very tired so he didn't touch anything, he rode in his stroller and I picked him up to see the animals he couldn't while sitting. He had fun and only asked three times to see the penguins. He still can't seem to grasp the idea that we can only see the penguins when there's a special event. We did have to stop by the flamingos three times though. He just loves watching them and asking questions about them. It was a beautiful day and almost got hot in jeans and a short sleeve shirt. I am planning on taking him to work and maybe school tomorrow. I can't afford to take any more days off and he doesn't appear to have anything. I will take his dvd player and try to quarantine him just in case. If he wakes up without a fever, then I will let him go to school too. I doubt he will, so he will probably stay home and nap. I will update again as soon as I hear from the hospital and know what the final verdict is on his surgery schedule.


believing in Christ,

Kara

Tuesday, February 20, 2007 10:07 AM CST

We need your prayers! Caden still has a fever and his congestion is not getting any better. The nurse says that we need to find out what's wrong and let them know. If it's anything more than a small virus then they will postpone surgery. We have already made work and hotel arrangements and the timing works perfectly with some of Caden's school breaks. We need a miracle. We need a healthy boy. We need the anesthesiologist to give us the go ahead with surgery. Please pray for my buddy. He is acting just fine and is playing and eating like normal. He has an appointment with his pediatrician around noon. I will update this evening with what I find out. If he is still in good spirits after that, then we will go to the zoo! It's only two blocks from the doctor. Please pray that everything is fine and we don't have to postpone surgery!


believing in the power of God,

Kara

Monday, February 19, 2007 9:49 AM CST

I am beginning to be more and more sure of the fact that Caden will never be a "normal" healthy boy. We spent all weekend at home. Caden decided to wake up Saturday morning on fire. He spent all weekend with a fever that bounced around from 102 to 104. He had no other symptoms other than a stuffy nose. What makes things worse is that he can't have any tylenol or ibuprofen because of his surgery. He was in very good spirits considering, he played and laughed some. He didn't eat much, which was very concerning. I'm talking he turned down his favorites, corn dog, donuts, and ice cream! We did get him to drink a milkshake with bananas, strawberries, juice, milk, and yogurt. He gulped that down! He finally woke up this morning and the fever had broke. He is still a little warm, last time I checked it was like 99.8. Overall, he is feeling MUCH better and is back to his old ways. I am just hoping no other symptoms do pop up!


Not much going on this week. It's supposed to warm up a lot. We might try and get to the zoo somehow, but that will be hard to schedule. I'll update if anything exciting happens. Let's hope not! Have a great week. Please sign the guestbook. Keep praying for the surgery and for Caden.


Kara

Thursday, February 15, 2007 2:21 PM CST

Update: 10:45
I may have to turn this into a page for my mother. If any of you haven't heard there is a peanut butter issue. Some jars of peanut butter are tainted with salmonella. Well, my mom just helped herself to a snack with such peanut butter. I had been meaning to check the p.b. all day, but didn't remember until she asked after she ate it! Sure enough ours is one of the poisoned jars! Luckily, my small peanut butter lover has his own untainted jar that is just his! I will update if we have a p.b. death as is my mother's concern!

We are trying to settle from the rush of the week, but life just won't let us. Caden is still doing really well with his air cast boot on. He is walking much easier and not complaining of pain much. We went to his ear doctor this morning and it seems as though the cause of his ear issues is something called a granuloma. It is a local reaction to his tubes trying to come out. We are supposed to continue with the steroid drops and it should get better. Seeing how much Caden hates drops, this should be a lot of fun.


He had a fun Valentine's day and really seemed to understand the mood. He was hugging and kissing a lot and was just generally very sweet. He ate WAY TOO MUCH sweets. By the time I got to his class party he had already started eating and while I was there he had three cupcakes, two iced cookies, and one choc. chip cookie. I think he had a few other small treats throughout the day too. Needless to say he is a good bit wild today. He loved getting so many cards and thinks of them all as treasures. I'm not sure how he understood so well, but he did.


Now for the bad/good news, I'm not really sure what to call it! I got the letter from the hospital in the mail today. His surgery is scheduled for March 8. We will do admissions on the 7th. They will basically do the same thing they did last time. They will either adjust the rod or completely replace it, so it might be a little longer this time. They told me Monday that it would be mid to late March so I'm a little shocked. I am trying to work stuff out with work, I feel bad because it's much shorter notice than last time. It is three weeks so that should be enough time. Caden and I were talking about it this morning and all he'll say is he doesn't want another cast and he doesn't want lines (I.V.). He also said, shock of my life, he wants a purple cast because it's my favorite color. He is so sweet. I told him what if I change my mind and say my favorite color is pink, will he get a pink cast. He said no! I will try and get him to change his mind, I'm sure he will between now and then.

If anyone out there is willing to send him some cards please email me for our address.


Kara

Tuesday, February 13, 2007 9:06 AM CST

We made it through the appointment at the hospital yesterday! I wasn't sure we were even going to get there. It was foggy and raining and traffic was awful. It normally takes me about 45 minutes to get there, yesterday it took me an hour and 15 minutes! It was also during rush hour, so I guess it's not that bad. Caden did pretty well. They took him to a smaller x-ray room with no decoration and a lot more equipment and that scared him. He still did really well and laid really still for the x-rays. They gave him another hot wheels car for being so still and good. I got to see the x-rays this time. The internal fixation rod they placed during surgery is now sitting below his ankle. The gap in the bone is a little bigger and nothing else looks different. That's not good. It's supposed to look much different, there's supposed to be some growth in the bone. The doctor said to definitely put him back in the air cast boot, Caden is sooooo not happy about this. I don't think he minds too much, he is walking a lot better with it on and doesn't fuss about hurting so much. They also want to put a rush on doing the second bone graph and fixing the fixator. They are looking at mid-March! I will know a certain date within two weeks. I don't want a second surgery, but at least I'm better prepared this time. I also want to get this over with and let Caden get on to being a "normal" boy. This means we may get to do a few swim classes, but not most of them. If we do the surgery now, we should be out of the cast in time for the intense heat of the summer to kick in. I also told the surgeon that we have a deadline of October 7 so Caden can walk down the aisle with us. Please be in prayer with us that everything works out for our family with the scheduling of this surgery. I will have to be off of work again for a few weeks and that's not easy on me or them. Please pray that this surgery is a huge success and we see fast results with this bone graph. Please pray for Caden's comfort and understanding as he goes through yet another difficult and painful procedure. Please pray that his innocence and childlike faith remain in tact and that he stays emotionally secure. Thank you Jesus for protecting Caden thus far and please continue to hold his hand as he walks through another trial!


The fun part of yesterday is that the zoo was visiting the hospital. They have a traveling outreach program that we've seen many times as zoo members. Part of the program includes the penguins! Well, they were at the hospital yesterday and we finished in clinic in just enough time to see the program. Someone took Caden's picture and it may be on the hospital website sometime soon. I'll let you know if it makes it. Caden loved the show as usual and then we went home and then to school. He did really well at school too. He was a little on the wild side yesterday and it was definitely an exhausting day for both of us. We are skipping therapy today. We are having the plumbing pipes replaced and they are doing work on them today to get ready for them. I can't shower and Buddy can't bathe. I don't really feel like presenting myself to the ladies at therapy like I am right now. Caden is relaxing and watching toons and eating. What a life! I will update again after our appointment with the ear doctor on Thursday, unless I miraculously hear from the hospital about surgery before then. Thanks for stopping by! SIGN THE GUESTBOOK!


Kara

Saturday, February 10, 2007 11:26 AM CST

Caden did a little better yesterday. He is still not bearing much weight on his leg, but he was a little more willing to be mobile. He went to his respite night last night. A wonderful church in the area takes the second and last friday of every month and watches special needs kids and their siblings for free. It is at times impossible to get in, but the work is worth it. They have bounce houses and movies and all kinds of cool stuff for the kids. Caden loves going and his good friend Emily is usually there with her brother. Last night they said that Emily and Caden never left each other's side. They obviously even played a pretty true to life game of "house" complete with arguing and hugging! James and I spent the evening eating and registering for wedding stuff!

I did finally get to talk to Caden's nurse at TSRHC and she set him up an appt. at 8:30 Monday morning. That means we will have to leave by 7:30 to get there against traffic. I am so not a morning person! I am sure they will take x-rays and discuss what our next step is. Until then we've been told to put him back in the boot :( . He told me yesterday that that makes him sad! Poor kid he just got released and now he has to be bound again. I am just glad it will help with some of his pain. The other good news is that our zoo is having a presentation Monday morning. One of the guests is supposed to be the penguins. I don't dare tell Caden in case something happens, but please pray that we get out of clinic in time to see them and that the penguins do get to come.

I will update more after our appt. Monday and let you know what's happened! Thanks for checking in on the little man!


Kara

Thursday, February 8, 2007 12:53 AM CST

We are having a rough week. Caden way overdid it on the playing and having fun stuff over the weekend. He is having too much fun without a stinky cast. He has been in a lot of pain and is not walking well. He has barely walked at all today. He has also wet his pants twice! He has been potty trained for a year and a half now. He has also been crying about hurting. He has a very high pain tolerance so I know he is really in pain. I am waiting right now to hear from his doctor's nurse at Scottish Rite to see what we need to do. I am keeping him home from school today to let him rest his leg. Please pray we get some relief soon. He is unbearably fussy.


He had a great time at all his parties over the weekend and will go to his respite night care for children with special needs tomorrow night so James and I can go out. That will hopefully be very refreshing. I don't think we've gone anywhere just the two of us since the night we got engaged two and a half months ago! I need to go try and get him to take a nap. Please sign the guestbook!


Thanks,
Kara

Wednesday, January 31, 2007 1:58 PM CST

Well, we're back from the hospital. I can't say we have good news, but we're pretty happy anyway. Caden did amazing during x-rays. He usually cries when we first lay him down on the table and then is fine. Today, he never even fussed. I sat him down and he asked to hold my hand. I gave him my hand and he laid right down and stuck his leg on the board! He didn't whine, fuss, cry, or move. When it was over he sat there and waited for them to make sure they turned out. He smiled at the student and asked for a sticker and the student said he would see if they had something better than a sticker. He came back with both a sticker and a hot wheels car. He gave Caden a high five and said he was so impressed by how good he was! It took FOREVER to see the doctor in clinic. Okay, not forever, but we've never had to wait 45 minutes before. The surgeon says there is still no change. The rod and pin have definitely slipped, but not a lot, and the bone graph has still not grown at all. He did, however, feel comfortable with letting Buddy go without his boot!!! CADEN IS WEARING TWO SHOES!!!!!!!! The last day he wore two shoes was admission day on September 18th. This is even the first time he has worn tennis shoes without a brace since spring of 2004! He said we need to watch him very closely, but he can do whatever he wants. He now gets to go to his friends birthday parties this weekend and do swim therapy when it starts back up. He was very stern about us watching him for limping, favoring his good leg, and pain. It will be hard for a while watching for limping. He has such bad atrophe (he can't bend his ankle) that he naturally will have a little limp for a long time. He suggests letting him run and do four year old things for therapy, but since Caden's gross motor skills are already a little behind, I think I will go ahead and get him back on schedule with his physical therapist. We took him to McDonald's for lunch and then to school. He was so proud showing his teacher that he didn't have his boot. He even made an effort to show his friend Sarah. She goes to Scottish Rite, too. We will take him after school to pick out his post-hospital prize! I am so happy he gets a little bit of boy hood back. We go back in two months to x-ray again and once again we'll see where to go from there. The surgeon still says we need another bone graph, adjustment of the rod and pin, and tethering of the ankles growth plate to fix the deformity of his leg. Luckily, he thinks we can wait a little while and do all these procedures in one! I am really grateful for that. That way Caden might only have to have one procedure instead of three or more! Thank you for checking in on us. And last but most important, thank you Jesus for the good day and for taking care of not only my sweet baby, but also his spirit.

Please sign the guestbook!!!


Kara

Monday, January 29, 2007 1:01 PM CST

Hello! I feel like we've been in another world lately. Things have been really busy around here and Caden's been doing his best to keep me on my toes. Friday was the official "diagnosis/test result" day with his psychologist. It almost went as expected. The fact of him having ADHD was confirmed. That was not a big shock to me and not something I'm overly concerned about. The one that through me off was the other half of the diagnosis. His doctor says he has Oppositional Defiant Disorder (ODD). This was a little bit of a shock. It makes sense with what we've been dealing with at home, but I just figured it was a phase he was going through. It still does not clear up my concerns with other things being wrong. There is no certain known cause for ODD, but it has been investigated that it can be caused by problems in the brain or chemical imbalances in the brain. The fact of the sudden onset of Caden's case really causes me some worry. So you can understand what this really means and how our lives have been daily affected these are some of the diagnostic requirements: often loses temper, often argues with adults, often actively refuses to comply with adults' rules. I know this sounds like a typical four year old, but this occurs in our house on an almost daily basis and sometimes several times a day. It was embarrassing to talk about because this has been going on around here for months. I forever thought I was a hopeless mom and I was doing something wrong. Now I know I'm not doing things wrong, just not the way to handle Caden's issues. It is something that can be therapeutically treated, and I am going to really start working on that. I like to look at all this as it doesn't ruin Caden's life, he will just have to work a little harder to achieve some things. We have his annual school meeting this Thursday to discuss his new objectives for next year. I am sure this will include some ideas as to how to deal with these issues at school. He has a lot less issues at school than at home because of the structure level at school and the way his friends take care of him.


We shook off all this info and gave it time to absorb during our trip to Houston over the weekend. It was a better drive than I expected. Caden had fun and did really well. We didn't do much other than go to Chuck E Cheese on Saturday. It was great seeing Mandi and I enjoyed our time together. It was also nice just getting away for awhile. While we're on the talk of Houston I have a few requests for you. Our neighbor's x-husband and father of her three boys has gone through major surgery to help rid him of esophegeal cancer. I got a call from her just a few minutes ago, and he's not doing well. He needs prayers for healing and the family needs prayers as well. Also, my friend Melissa and her family and daughter, Katsie need prayer too. They are in Houston and Katsie will have her MRI tomorrow. Katsie has NF like Caden and lives in Dallas. She has been sick lately and having lots of problems. You can check in on her at a site similar to Cadens www.caringbridge.org/tx/katsierane . Please lift both of these people and their families up to God.


Caden's ears are still not great, but are seeming to look/smell not as bad. It kills me everynight to have to hold him down to put the medicine in them, but it has to be done. I have tried explaining things to him, bribing him, and having him help, but he still screams and fights everytime. I sure hope we figure out what's the reason for all this. We go to TSRHC on Wednesday morning to x-ray and go to clinic. I am hoping we will know enough then to know whether we'll do more surgery or not. On one hand, I want Caden's leg to have the best possibilities and to not cause him anymore problems, but it's getting to the point where he's starting to miss out on things. He has two birthday parties next week and his attendance hinges on what the surgeon says. We are also facing the possibility of no swimming this spring or summer. He has had to drop both gymnastics and dance, and I was also going to let him play little league t-ball this spring. He may be able to swim and may be able to attend the parties, but gymnastics, dance, and t-ball will be out of the question for this spring no matter how his leg has healed. I can't imagine him doing this at an older age with as much as he understands now. I am hoping we will finish any surgeries he needs in this year and won't have to have any more until he's much older.


This is so stinking long and I have lots of laundry and picking up from our trip to do. I will update after our clinic on Wednesday! Thanks for checking in on us and please sign the guestbook!


Kara

Tuesday, January 23, 2007 11:08 PM CST

It's so late and I'm not sure why I'm online and not in bed, but quick update. Caden's ear problems are not getting better, they're getting worse. We are now having to hold him down every night to put drops in his ears. The earliest available appointment with the ENT is Feb. 15. It has been a very frustrating week and it's only Tuesday night. His behavior has been horrible. We go to the psychologist on Friday for test results. Then, it's off to Houston! I can't wait. It will be so fun to get away and be with Mandi all at the same time. I have all sorts of other wedding things going on this week and next. I will update as soon as I can. Please pray for Buddy. I don't know how much longer we can go on like this. He is not happy with his behavior either! I gotta get some sleep!


Kara

Thursday, January 18, 2007 9:25 PM CST

Wow! Today has been a whirlwind of a day. I was talking to my best friend, Mandi, yesterday. She lives in Houston and I haven't seen her or any of her family since November. I have missed them all like crazy. Well, we are planning on going to Houston next weekend to celebrate her daughter, Malia's fourth birthday. Mandi is having surgery on Monday and needed to take care of some stuff at work today and Malia didn't have a babysitter. So her dad, who still leaves up here, picked her up and brought her to his house. Malia did not want to go to her old sitter's house and her dad had to go to work. So, I got Malia! Caden was so excited to see her. They had a great day together and we had lots of fun. I couldn't even make Caden go to school. I let him stay home and we went to see Charlotte's Web again. It was definitely exhausting, but she was very well behaved. Caden even behaved really well with having to share everything and his schedule being out of whack. I can't even imagine how great it will be to see Mandi next weekend!

Caden is still not really doing any better. One of his ears has now started oozing nasty stuff. He is also complaining about it hurting, which he NEVER does. Then, tonight he started fussing a lot, wouldn't eat his dinner, and then his cheeks started turning a tell tale red. Sure enough, he has a 100 degree temp, if not higher, I don't know how acurate our ear thermometer is. I don't know how this is possible since he's been on antibiotics for six days. I'm hoping it will be gone in the morning and there's nothing to worry about.

In case you haven't heard, it's been snowing in Texas! We had our freeze over the weekend and then Tuesday was calm. Tuesday night they forecasted Wednesday's high around 36. You can imagine my surprise to wake up at 6:30 and hear talk of snow and look out my window and see my lawn covered in it. It snowed off and on all day. I didn't go to work and schools were closed. By this morning the only thing that was left was snow and ice on cars and elevated areas. Now they're saying we might get some more this weekend. This is crazy! I love it because I know it's killing off a lot of bugs and allergens!

I had an almost wedding crisis yesterday, but it ended this afternoon in a triumph! As long as it doesn't majorly freeze over this weekend, Mom and I are going to a big Bridal Show. I'm hoping to get lots done there. That's all for tonight, hahaha. I hope everyone has a great weekend and stays warm. Please sign the guestbook to let us know you've been here, even if it's just to say hi.


God bless,
Kara

Sunday, January 14, 2007 2:55 PM CST

BRRRRR! It's cold in Texas! We have had rain and freezing rain and ice all weekend. It has not gone above 32 yet either. They are saying we can expect one more good rain and the temps to drop a little. Morning rush hour might be dangerous! The roads aren't bad as long as you stay off or bridges and overpasses. It's strange to hear of accidents from both ice and flooding on the same day. It is so pretty though. The trees are bare and have ice covering them. I have never seen anything like it.

I didn't take Caden to the doctor yesterday morning. The highway to the doctors is nothing but overpasses and I just didn't want to take the chance with my baby in the car. He did get to go to his train car parade. The library is just a mile or two down the street and the roads were mostly just wet. He had fun and James said his train car was comparitively nice. He was definitely proud of it. I will take him back to the docs to do the bloodwork and testing another day when the weather gets a little better. The other good news is that school is already out tomorrow, so no make up days or missed school. James will be at the fire station so we might go catch a matinee of Happy Feet at the movies down the street. We'll see what I'm feeling up to then!

Mom and I went to a bridal "show" yesterday and it was pretty lame. I got to see a friend of mine and show off the bling. Otherwise, there wasn't much to see or do there. We are heading to another show next weekend and that one is well established and known to be very good. We are starting to get some good decorating ideas and other stuff in our heads. I am still a little depressed by the thought of just how much it costs to have a wedding. It is starting to look up and I'm hoping to get some better ideas and maybe win some prizes at these shows!

Caden was so cute today. His buddy Malia called him from Houston today. They talked and said they missed each other. They both asked for the other one to come to their house. Malia understood it's not easy because she's made the trip several time, but it was really hard trying to explain to Caden again. He just doesn't seem to get that Malia doesn't live in her old house and she didn't just move across town like last time. I used the example of when we go to James family's land in North Texas. I think that helped, he understands that it takes longer to get there than to work. I reminded him how we have to ride in the car for a long time and how he can watch one whole movie and a spongebob cartoon before we get there. Well, then I told him to get to Malia's house he could watch two movies and two spongebob cartoons. I hope that helped! I am going to try and call Mandi today and see if we can drive down for Malia's birthday in two weekends. If not, it will be her first birthday that we have not been there. I'm not sure Caden would realize it, but I've already cried today thinking about it.

I have plenty to do so I better go. I am finally admitting that it is half way through January and it's probably close to time to take down the christmas tree. It's just so pretty! I think it's also a little sad since this is the last tree I'll do in this house! Oh well, life goes on and all will be good. Hope everyone's had a great weekend and stays safe!


Kara

Friday, January 12, 2007 6:40 PM CST

Once again just a quick update. Caden's going to be in a train car parade tomorrow at the library and I need to finish his train car. His is all green and he wants penguins on it, surprise, surprise!

He has been okay the past few days. The pediatrician said his ears looked like they had had some bad stuff in it, but put him on mild antibiotics just in case. One tube is definitely out and the other is somewhere else?!? I'm so confused. He will stop eating and drinking tonight at 9 and go in around 9 tomorrow for a glucose screening and blood tests. I am hoping we can get the results fairly quickly. I know at times it has taken a few weeks to get blood work back, but I think maybe this time it will be different.

He had the remainder of testing today with his psychologist. He was a little more "normal" Caden with him today. He did not do so well with the questions either, but I don't know if that's because the questions were harder or what. The psychologist seemed to agree with me that if nothing worked out with the issues we're adressing this week that we definitely need to get an appointment for an MRI.

That's all I can do for now, but hopefully I'll be able to get back to this soon. Thanks for checking up on us!

Kara

Wednesday, January 10, 2007 11:48 AM CST

Quick update before I run Caden to school. I think some of Caden's recent issues might be because of his ears. I don't know what made me do it, but I had the school nurse look at them yesterday. She said they look really bad and I need to get him in to the doctor soon. We're talking blood and junk and redness everywhere and in both ears. We have an appointment at 3:40 today with his pediatrician. His ENT said they couldn't get him in until May, but after a talk with the pediatrician that WILL change. He has been so fussy all day today and I'm going crazy. I hope we can get something done and soon. Also, please pray, the school nurse says we need to discuss with the doc his eating and urinating issues. She's thinking possibly diabetes. So not what we need right now. I am off to get him to school and then I'm gonna run off my stress at the park! Thanks for checking in on us!

Kara

Saturday, January 6, 2007 9:11 PM CST

Caden had a great first week back to school. He was so happy to go, and honestly I was too. We celebrated his last day of break by taking him to see Charlotte's Web. It was very cute and he loved it. He had a rough time at work and had several melt downs. I think he finally learned from his behavior though. After his second fit none of his friends would play with him. After the third, he got taken to the bath room to talk and calm down and he lost the toys he was playing with, which happen to be his favorite toys. I thought maybe the unusual frequency of his meltdowns had to do with being out of routine, but this one happened when we got back in routine and they've continued. I am trying some new calming techniques, but they're not working yet. I may need to go back to more frequent skin brushing and see if it's something sensory related. I am still praying it's not something brain related.

I told Caden this week of the possibility of more surgery and bone graph. We were driving past the water park and he mentioned what he loved to do there. He then of course had to ask when we could swim there. He then also asked when he could swim with Ashlynn again (swim therapy/exercise class). I couldn't not tell him. I explained to him that momma hoped we could swim with Ashlynn really soon, but the water park didn't open til it gets much warmer outside. He wanted to know if he could swim with Ashlynn tomorrow. I then had to tell him that I was praying to Jesus and asking Jesus for Caden to be able to swim when swim class was ready, but I didn't know if he could. He is four so of course he asked why. Here's where it got hard. I told him in four year old terms that his bone from his hip that was now in his leg had not grown in his leg and his doctor might need to take more bone from his hip and put it in his leg again. I explained to him that this meant more casts and more casts meant no swimming. He bawled and cried and bawled somemore. He has not mentioned it anymore, but I'm sure I'll hear about it sooner or later. It was so hard fighting back the tears myself, but I was strong and managed. I am grateful that he still has a leg and for the things he can do. He has definitely not lost his sense of humor either! I pray he continues to be just as wonderful at handling all this tough stuff as the years go by.

We met with my friend Jill Harper, owner of Selah Photography, today. She will be doing my bridal portraits and wedding photography. I have known Jill for quite some time now, probably close to ten years. She is absolutely amazing and does amazing work. She is being so generous with us and so helpful. It was really fun getting to talk about wedding stuff with her today. We will tour Diamond Oaks Country Club tomorrow afternoon. I am hoping this will confirm that this is where I want to be married and have my reception. The best thing is the consultant there is named James Bond! How cool is that. I have really gotten the ball rolling with some great ideas for decorations and stuff and Jill was a huge help today with more ideas and some names and thoughts on florists. I am still not feeling too stressed yet as I keep reminding myself and my mother that we have nine and a half months left! I feel that's plenty of time to plan a beautiful cost effective wedding!

I got our appointment to finish Caden's psychological exam rescheduled. We go back this Friday, the 12th. I am hoping he will be in good spirits and participate well and we can find out what we need to really soon. Other than that and a possible need for some "ear tube is out, but not coming out of the ear" intervention, we don't have any appointments scheduled until we go back Wednesday the 31st to TSRHC. Please pray for all these issues and believe with us for God's continued hand in Caden's life.

with much love,
Kara

Wednesday, January 3, 2007 3:27 PM CST

So here goes... I'll update with not so good news first that way, you can then be uplifted by the positive. We had our appointment at TSRHC a few weeks ago and things were same as usual, cast removal, x-rays, doctor visit, follow-up care. This time there was a glitch in the visit. Our past visit I really did not expect Caden to go home a free man, I kept my hope, but figured he would be in a new cast. I was right, at least he got a short leg one, we're getting closer. This appointment I thought for sure he'd be freed. I was so excited about the thought of a cast free Christmas and New Year. One of my Christmas presents I really wanted was a footprint of Caden's now that he was going to be "fixed". Well, shows what I get for hoping so high. Caden's growth has not changed at all. In fact, the rod and pin appear to have slipped some. The doctor says we will most likely need to go in and fix it. He also says that if at the six month mark we still don't see any growth, we will need to do another bone graph to try and help "jump start" this one. We will then see what happens and figure out if or when we need to do the next procedure to slow down the growth of his tibia so the fibula can catch up. This of course means a limb lengthening procedure when he's older. All this so close to the holidays and in one visit. So, as I said before, we need some major prayers for some quick growing, or basically, a miracle.

The good thing is that the doctor let Caden out of a fiberglass cast and into an air cast or 3d boot. Basically, a removable cast. He got to go straight to the store after the hospital to pick out a new toy and some bath toys! He chose, surprise surprise, the Happy Feet game to play on the gameboy. I let him have some kind of bath as soon as we could. He had bubbles and play soap and water coloring stuff and toys galore! It was exactly three months and two days since he had been in our bathtub. He has since asked to take a bath everyday and sometimes five or six times a day. I have kept him at one a day and once let him have two one day. He has been known to be in the tub for an hour plus. We do have to watch him closely. He is not allowed to put any weight on his leg without the boot. This makes getting dressed and going to the bathroom a little difficult at times, but we've gotten creative. He has figured out how to undo the velcro on the boot and loves helping take it off at bath and bedtime. He is also refusing to let anyone call it a brace. He replies, I don't wear a brace anymore, it's a boot. He gets around on it just fine and doesn't seem to mind it at all. I am hoping to move him out of his crib and into a big boy bed soon while he knows he can't get out of bed because of his leg. I figure maybe if he can't physically get out on his own, it will help secure in his head that he shouldn't. We'll just have see how this turns out. I just figure maybe a four year old should sleep in a bed and not a crib! I don't think he minds though!

We had a great Christmas. Caden got his Leapster and loved it! He has barely put it down. He got a lite brite and a stomp rocket and rocket alarm clock that he loves as well. He also got Cars and has watched it about ten times since Saturday. I got some awesome stuff as well. I love my fun yet practical gifts. A lot of it was stuff for married life that I am so happy to have. I even got a gift certificate for a keyless entry system for my car. I will be so grateful for that. It was a weird Christmas season, but very fun and wonderful. New years was a different story. I basically pretended like nothing was happening. I didn't leave the house or get dressed on New Year's Eve or Day. I figure that there's not much to celebrate considering this new year promises to hold the same events for us only with less money and a wedding. I hate being so blah about things, but all the things we were looking forward to are out the window. Caden can't go back to dance, I still can't bare to tell him that; he may not be able to go back to swimming or play at the water park, already told him that and he bawled and I barely held back tears; and I can't go back to dance because I don't have the money and I don't have the time to teach to pay for the classes. I can't tell you how many times I've cried over that one. For those of you who don't know me that well, dance is not just a hobbie of mine it's a love of mine. I have danced off and on since I was two. When I wasn't dancing I was doing cheer and gymnastics, wishing I was dancing.

I have made some headway in the wedding planning. I have several appointments in the next few weeks and will be kept busy by trying to keep up with those and Caden's appointments. I am sorry this is so long and I kept people waiting for so long to hear all this. Thank you for loving us and being in prayer and supporting us. We are grateful for you all.


with all of God's love and faith,

Kara and Caden


p.s. Grandma Kris, if you're reading this thank you for Caden's gift card. He has no clue about it yet. I'm hoping we can save it for another prize after our next appointment at the hospital on Jan. 31. You are too sweet!!

Monday, December 25, 2006 9:43 PM CST

Sorry it's been so long since an update. I hope everybody had a Merry Christmas today. Ours went much faster and much easier than I had expected. It was difficult not being in our normal Christmas routine, but it was a fun different. James had a slow day at the fire station and we enjoyed time with our HCFD family. Caden got some fun presents and I did too. The majority of his presents he will get on Saturday, which is when we will be holding fake Christmas. We will go about all the normalcies of real Christmas, it's just not on Christmas day, hey, it's the spirit of the season, not the day itself, right!

As far as Caden's leg and our trip to the hospital, I'm not sure I'm ready to put it into writing yet. I will leave it at, it did not go as well as expected.

Caden has a head cold and it appears to be creeping into his chest, so not what we need right now. He has had a low grade fever, but only at night. I am giving him some prescription decongestant and hoping it will just pass.

He is having a blast with all the Christmas going ons and should have a great week. He definitely has plenty to do and play with. Hopefully, I will sort out my mind soon over the matter of his leg and be able to fill you in. Just please be praying, we REALLY need a miracle and quick! Any positive uplifting thoughts in the guestbook would be much appreciated.


Merry Christmas,
Kara

Tuesday, December 12, 2006 9:52 PM CST

Caden had a great weekend. He got lots of one on one time with his Gram and Miss Donna. This of course means not a lot of Momma time. We had a very busy weekend. James fire dept. party went really well and I had a great time. I came home with a CD alarm clock radio that you install under a kitchen cabinet. James got a basket of food! Hahaha. I also bought my wedding dress!!!!! It is beautiful and so much more than I thought could have. It was a fun day. It was just Mom and me and we had some much needed laughter and fun. We finished with an appetizer and diet cokes at a local steakhouse. Caden came and saw the dress and said it was pretty. He was having a good time with Miss Donna and was on his way to pick up her 11 and 15 year olds who love him. He is so spoiled when it comes to love. I couldn't be more grateful for that. Finding a place to hold the wedding is proving to be a struggle. I have already cried twice over it. I think we found some places that will work today. We will hopefully check them out in the next few weeks and pick one. James and I have also compiled our basic guest list. Please pray for my family's stress level as we plan this wedding.

Caden is still amazing me everyday. He still tends to have moments of wildness and an obsessent need to make some kind of noise, and usually very loudly. However, he has had no time outs at school for almost two weeks and the ones he has had at school recently have been for screaming while playing. He is still having issues at home, but I know some of them could be fixed if I could get some issues worked out personally. He is still healthy and is luckily keeping away from all the winter bugs so far. This is the longest he's ever gone without being sick. His cast is starting to stink, but I only have to live with that for another week!!!! That's right, a week from today my baby will be a cast free boy! I'm praying he will be brace free too. There is rumor that this is a possibility. It would be the first time since the beginning of 2005 that he will not have a brace or cast on his left leg. I'm not real sure how he'll do with walking without the support he's used to, but I know he'll be so much better at the end.

We have psychological testing on Thursday and cast removal and x-rays next Tuesday. That's all until the big rounds start up again in the spring. That's when we go for MRI, opthamology, genetics, neurology, etc. I am already a little nervous, but confident that God really has his hand in Caden's life. I have God's word in my heart at all times and know that no matter what Caden has to go through, we will go through it with the love of Christ shining in our hearts and on our faces.


Have a Merry Christmas,
Kara

Friday, December 8, 2006 5:02 PM CST

I went with Caden's class on a field trip to a Christmas tree farm today! It was a lot of fun but very cold. My toes were numb by the time we left! It was so much fun. We watched a video about how the trees were grown and cared for, roasted marshmallows, played in the hay jump barn, took a hay ride, played in a three level treehouse, and ran through a big maze. The kids had a great time and barely noticed the cold.

James and I have two parties this weekend. Caden will stay with my mom, which he will love. He has had another really good day. I think we're down to about three screaming moments a day. He is learning ang growing so much. I can see a real difference in his self control. Mom and I will try and do some bridal gown shopping tomorrow if we can get someone to watch Caden or figure something out for him. James will be on a motorcycle ride for a charity. It's the coolest ride. Thousands of bikers of all kinds riding from both downtown Dallas and Fort Worth with toys on the back of their bikes. It's a really neat thing to see and a neater thing to be a part of.

All we have medically is his psychological testing next Thursday and then, YEA, his cast comes off on Tuesday the 19th. I am already planning on taking him to Target on the way home from the hospital. They have some bath gift sets that he's been wanting, so I have already told him that I will take him and let him pick one out and he can take a bubble bath that night. I don't know who's more excited, him or me. Pray that he handles the removal of the cast better than last time and that all looks good. Please also pray that we find out everything we need on his psychological testing and that's he's cooperative through both.

Have a Merry Christmas and be safe!


Kara

Monday, December 4, 2006 11:59 AM CST

We had a great weekend. We stayed very busy, but had lots of fun. I almost made Caden's toes freeze a few times by forgetting his sock to go over his cast, but they got warm again and were fine. We did some fun Christmas activities and Caden actually let someone paint his nose! This was huge for him. They had a table where the kids could have their nose painted red and get paper antlers to wear and be Rudolph! Caden had never let anyone paint his face or do a tatoo on it or anything before. He can't even stand a tatoo or sticker on his hand for more than a few minutes! He loved being "Rudolph". I was so excited for him. We have a few more Christmas parties and other activities throughout the month, so it should be fun.

Caden's behavior has continued to be alright. He's had a few screaming moments and some fits here and there, but he's come down from them a little quicker. Only a week and a half until his psychological tests! He gets to go on a field trip this Friday to a Christmas tree farm. It's on a farm that I've been to before with a Homeschool class I taught when it was set up for pumpkins. It's a really cool place and the kids should have a great time. I'm going with him and James might be too.

Thank God for AAA! I had a bad flat tire Friday night and I was at a store about 15 miles from home with Caden. My mom was about an hour away and James was at the fire station and it was very late! I called AAA and they got there in about thirty minutes and put on my spare very quickly. Luckily, my tire was just flat and not ruined so all I had to do was air it up and I was good to go! I'm just glad Caden was mostly asleep and didn't think anything of what was happening.

Other than that things are relatively calm around here. We are hoping for a more normal week, but who knows! Have a great week. God bless and Happy Holidays!!!



Kara

Monday, December 4, 2006 11:59 AM CST

We had a great weekend. We stayed very busy, but had lots of fun. I almost made Caden's toes freeze a few times by forgetting his sock to go over his cast, but they got warm again and were fine. We did some fun Christmas activities and Caden actually let someone paint his nose! This was huge for him. They had a table where the kids could have their nose painted red and get paper antlers to wear and be Rudolph! Caden had never let anyone paint his face or do a tatoo on it or anything before. He can't even stand a tatoo or sticker on his hand for more than a few minutes! He loved being "Rudolph". I was so excited for him. We have a few more Christmas parties and other activities throughout the month, so it should be fun.

Caden's behavior has continued to be alright. He's had a few screaming moments and some fits here and there, but he's come down from them a little quicker. Only a week and a half until his psychological tests! He gets to go on a field trip this Friday to a Christmas tree farm. It's on a farm that I've been to before with a Homeschool class I taught when it was set up for pumpkins. It's a really cool place and the kids should have a great time. I'm going with him and James might be too.

Thank God for AAA! I had a bad flat tire Friday night and I was at a store about 15 miles from home with Caden. My mom was about an hour away and James was at the fire station and it was very late! I called AAA and they got there in about thirty minutes and put on my spare very quickly. Luckily, my tire was just flat and not ruined so all I had to do was air it up and I was good to go! I'm just glad Caden was mostly asleep and didn't think anything of what was happening.

Other than that things are relatively calm around here. We are hoping for a more normal week, but who knows! Have a great week. God bless and Happy Holidays!!!



Kara

Friday, December 1, 2006 1:01 PM CST

So our fun day of snow is over! It is sunny outside and all the ice and snow has melted away. However, it is still very cold. The normal high is around sixty and today we're not supposed to get over fifty. Right now it is just under forty and I am freezing! Caden went off to school wearing his hat again. He did fall on the way out. He stepped out the door and saw the ice and water and said it's melting. Just as I was telling him to wait for me because it would be slippery, he slid. I thought for sure he was going to fall apart, but he just laughed and said "silly iceberg". Remember, he thinks he's a penguin right now. Luckily I put him in waterproof pants and his jacket, so he hopped back up, I wiped him off, and we headed to school.

Yesterday he was one of three who came to school, but today everyone was there. We are going to another Christmas festival thing tomorrow evening and then have our church's Christmas progressive dinner on Sunday night. It should be lots of fun. Please pray that Caden continues to have good health through this winter. Neither he nor I can afford any more time off. Caden has his testing with his psychologist on December 14th. I am both hopeful and worried for what they may find. I need to know what is going on with him and get things taken care of, but quite normally don't want my baby to have any more issues to deal with than he already has. Please bless someone in this holiday season and remember the blessings you have even through the hard times.


God bless,
Kara

Thursday, November 30, 2006 4:07 PM CST

IT'S SNOWING IN TEXAS!!!!!!! It is so gorgeous. I can't believe it was eighty yesterday, and today it's thirty! Caden is loving wearing his warm clothes. He has not wanted to take off his hat or mittens all day. His hat is soooo cute. It velcros under his chin and has a blue, a white, a red, and a green ball on the top. He is so adorable, I wish he could wear it more often. The snow and sleet is supposed to stop tonight so I hope the roads will be nothing more than wet in the morning. Have a great day and God bless!


Kara

Tuesday, November 28, 2006 8:34 AM CST

Hello! Once again I've let it go, I'm sorry. I can't believe my baby's been four for a whole week. He handled his birthday like a champ. He cried for a few minutes when he first woke up about just wanting to stay three. However, when I informed him that he can't have his birthday donut if he's not turning four, he started to change his mind. He was on his best behavior the entire day and had lots of fun. He went to build a bear and made the penguin, we ate lunch, did some shopping, and he even got a free ride on the carousel since it was his birthday! We finished the day with dinner, his choice, from Sonic. His request was a BIIIG corny dog and a strawberry slush! Imagine that!!! I think that's actually his choice every day if we gave him that option. He had a chocolate chip cookie cake with Happy Feet decorations, and it was sooo delicious. We had our friends the Hunt family over and James dad and opened all his presents. He got some great stuff and has really enjoyed it all.


We had a wonderful Thanksgiving. We did almost lose my sister's dog, an adorable german shepherd puppy named Dallas! Luckily, someone down the street found him and got him on a leash and was walking him in our direction. It would have been a pretty crappy day if we hadn't found him. Dinner was great and we all had fun together. We finished off the season with some wonderful six am shopping Friday morning. I just love this. I am the one who six am is not known typically. I think I could count the number of times this year that I have woken up at six or earlier. Most of those weren't intentional either! We finished almost all our shopping and truly got some amazing deals. I think we saved around $150 dollars on stuff, plus got some store "credit" for buying so much. I got some great quality time with my sister and got to have some good laughs. Now for the really good stuff!


James took me to see the Rockettes on Friday afternoon. We then had reservations for a really nice restaurant that evening. I had suspicions all week that this might be "the night". Well, when he told me that following dinner we would watch the parade of lights in Downtown Fort Worth, I lost all hope. I stayed well prepared all night, looking my best, looking for outlines of things in his pockets, just looking for "signs", but went back and forth all night as to whether or not it would happen. In fact, on the car ride to the Rockettes I was thinking to myself that I needed to remember to not be disappointed if nothing happened tonight. Well, I was WRONG!!!! After all that stuff we went to the middle of downtown and got right up under the tree to watch it being lit. When everyone counted down and the lights went up, James reached around me with a ring in his hand and whispered in my ear, "Will you marry me"!!!!! This is where it gets kind of funny. I grabbed the ring before I turned around or said anything! LOL I said yes, of course. It was very romantic and very sweet. Then, a group of giggling ladies walks over and says, we saw the whole thing, that was so sweet, let me see the ring, and a whole barrage of other comments. It was so funny, James was just stunned. I guess he didn't count on that even with it being such a public place. We walked around downtown for a little while talking and stuff before we started the myriad of phone calls I "had" to make. It was definitely a very long day, but not one I will ever forget. We are hoping to get married around October 2007. We are not completely sure yet, but it should be sometime around then. I have some ideas, but not anything firm yet, I'm not sure if I've just commited to suicide or what. I mean in planning a wedding, not marriage! LOL!


Caden had his four year well check yesterday and got three shots! He was not that happy, but handled them okay. All his bloodwork came back fine and everything looked good. He has moved up in the percentiles! He is now 39 inches, which puts him at 25th in height and 35 lbs., but that's with the cast and clothes, so that falls around the 35th in weight. That's the biggest he's ever been in the weight category! His pediatrician said that he looks good otherwise and that if I have any more concerns that he wants what I want and to let him know. I was pleased and said I will probably give him a call in a few weeks to get a scrip for physical therapy when he gets his cast off. His orthopedist just wants him rehabing on his own, I'm not so trusting in that decision, but we have a few more weeks before I have to really worry about that! So for now everything is going pretty well, except that this is a freakishly long update. I'm so sorry. I guess if I update more often I wouldn't have so much to say, NOT LIKELY! Have a great day and a wonderful week if I don't get back soon!



Kara

Monday, November 20, 2006 5:06 PM CST

I'm back! My friend's visitation went "well". I didn't know anyone there at the time, so I just went in signed the book, looked at the pictures and flowers and left. Caden is quickly recovering from his sinus infection. He hasn't been doing much coughing, so I'm hoping he just won't.

His penguin party went off without a hitch. His friend, Isaiah, came instead of Malia. Malia was of course doing worse than I was without her momma being here. She and her dad and brother drove to Houston and had a wonderful weekend together. We missed her, but I was glad Isaiah got to come. Happy Feet was looong, almost two hours! It was sooo cute though. Caden is now saying he wants to take the tap and ballet class when he gets up and running again! I couldn't be more thrilled. I know as far as growth and muscle build for him this class would hold the most promise. I just hope he will stay on his spot. I will have lots of "talks" with him about this before he goes. He's so funny! He keeps calling me and James momma and daddy penguin. He had a great time! He wanted to wear his birthday hat, but got mad when I told him he couldn't have the three on it. He said, "I'm not four yet, I'm still three!". We both decided to just wait for tomorrow and then he can wear it with a four. I just can't believe my baby will be four! I will probably write more of a tear jerker about his birthday later. I have to much to do to stop and get all sad right now! He has speach therapy in the morning and then we're off to the mall. He gets to make "Mumble" the Happy Feet penguin at Build a Bear workshop! He is sooo excited and I'm hoping he's not a crazy psychotic mess tonight and in the morning. We went to the store today and got his Happy Feet cookie cake ordered. He thinks the whole idea of a cake that's a cookie is just incredible. We will enjoy dinner and cake tomorrow night with us, my mom, James dad and cousin, and our good friends the Hunt family. These are all the same people who were there for his first birthday dinner! He will start the morning with our annual birthday donut with candles and all! It's a silly little tradition I started with his second birthday. It might sound nuts to you, but the morning of his second birthday was the first donut he had had in his life! Between the candle in it and the yummy treat, the look on his face that morning was priceless. After that, I can't let that not be a tradition. It should be a blessed day! I will be celebrating in a huge way. It is such a blessing to have a healthy child who I can hug and kiss and love! The life he holds is so precious and this past year will make it very hard to forget just how fragile life is!

I love you Caden James!!! Happy 4th Birthday Eve!!!



Caden's blessed momma,
Kara

Wednesday, November 15, 2006 11:07 AM CST

Having a tough day!!!!!!!!

I can't remember if I spoke of this in an earlier journal or not but here goes. A girl I have danced with for the past three years died last Thursday. She was on her way home from the college she attends in a neighboring city. It's a drive she makes four days a week for the past few years. She was rear ended in a crash that involved five cars and fourteen people and she never even made it to the hospital. She died right there on scene. This is one of those tragic accidents that there is nothing she could have done to have prevented any of this. She was only 24 years old. It has made me realize once again just how fragile life is and you never know which day will be your last. Her visitation is tomorrow night and the funeral is Friday afternoon. I will be going to the visitation but not the funeral. Please be in prayer for her family, that they will find comfort in the Lord. She is a Christian so Praise the Lord she is now living in Heaven!

Caden is very snuggly lately and even a little whiny. I am wondering if he is just very tired or if he's trying to get sick. I pray he's just tired, it would be crummy for him to not feel well for his party. More sad news, his best buddy Malia might not make it to his party. Her mom is my best friend that just moved to Houston for her better job position. Malia and her dad and brother are still here, but they miss there mom tremendously and will most likely go there to see her this weekend. Caden cried when I told him this, but I reminded him that there is still a chance she might come. I think I have convinced him to invite a boy if she can't make it. His other two friends will definitely be there though!

He is still not very mobile and wanted to be carried all morning. It's so hard figuring out whats going on with him. Good news is that we had major success at speech therapy yesterday. Caden said his name right. He can't say is "k" sound, but yesterday she got him to say it several times and even got him to blend the sound into his name. The bigger thing is that he not only did it for her, but he came out to me and did it for me!!! I am so proud of how far he's come. A little progress is so encouraging. I am so grateful to all his therapists for all the hard work they do with him and that we have insurance that covers this.

I need to get him fed and ready for school! I have a busy day ahead of me. I need my shower, I need to get food for his Thanksgiving feast at school tomorrow, I am going to help pack meal baskets for needy tonight and need to pick up a few more things to put in the baskets, and I need to finish getting things together for his penguin party. YIKES!! At least I have real expectations of myself and know that not all of this will get done or at least not until late tonight. Again, if anyone reading this is in the area and wants to join in on the penguin party this Saturday, the more the merrier. Just email me for the details.

in God's gracious love,


Kara

Tuesday, November 14, 2006 9:33 AM CST

You guys must have been praying cuz his leg is getting better already. I was up most of the night emailing and researching what I could do to help him. This morning he has lifted his leg several times on his own to get in or out of pants and hasn't even wimpered about it hurting. Yea!!!!! Praise Jesus!!! He is still walking funny, but getting better.

His Birthday party is official. He's taking "just three girls" to see Happy Feet this Saturday. I just bought the tickets. If anyone else wants to come, the more the merrier. We are seeing it at Southlake Town Center in the afternoon. If you want to join us just email me and I'll let you know the exact details. This and the Happy Feet penguin from Build a Bear Workshop is all he wants for his Birthday! So we'll do the movie on Saturday and his Birthday is next Tuesday and we'll take him then to make his penguin. I don't think he realizes it is so soon, but boy will he be excited.

Our appt. with the psychologist went well. Caden played pretty nicely while we talked and the doc wrote lots of notes. We go back for the testing on Dec. 14th. The doc is going to try and push for educational testing too, but insurance makes it really hard. The doc said because of his medical situation and the risk factors he meets for dyslexia alone he should be able to get it done. Please be praying that these tests find everything we need to so Buddy can get the proper help he deserves.

I need to get in the shower so I can get him to therapy. Please also pray that I can get him the help he needs to get back on track with mobility. Not much would bring me greater joy than seeing "Mr. Independent" going at full speed on his birthday. This is really going to be another birthday that we will truly celebrate and marvel at his life. He has come so far in the past year and gone through so much. He is such an awesome kid and deserves so much more than I can give him!!! I love you Buddy!!!!


Thanks for believing in my Miracle,

Kara

Monday, November 13, 2006 11:36 AM CST

Quick note, This weekend went really well!!! Caden was actually very very good. He only had a few discipline requiring moments and those were just him getting too wound up with playing. He whined a little when we were out doing stuff that he just wanted to go back to our "buildings", that's what he called our hotel. But all in all he did great, he even did well during the drive. I am quite sick and pretty much felt like just laying around and still do. All the congestion and stuff has moved into my lungs now and I am closely monitoring my asthma. Knock on wood, it's been almost a year since I've had an emergency and I'm hoping to make it through the winter without one. Luckily, this whatever I have has not turn into anything contagious. Everything has stayed clear and "normal". I don't know what I'd do if Caden got sick.

He has his first appt. with the psychologist today. We just have a small meeting and some inital stuff and the testing and evaluation stuff will be another day. Please pray that we can get a handle on his little mind and figure out where some of his stuff is coming from and how we can help him. I know he tries so hard to be good and to learn, but he just can't seem to get things to work sometimes.

He also is still not getting around any better. He has almost put me to tears a few times the past couple of days. He still acts as though his leg is in a long cast. He does bend it very slightly occasionally, but overall he cries when I bend it for him. He also can't seem to get his mucles to work right. We've tried having him kick things and he just couldn't do. I guess I need to give him a little more time, but he is uncomfortable and in pain. It kills me to watch him sometimes. He walks around and just drags that leg behind him. It is constantly turned outward and doesn't want to walk much because he keeps falling. His orthopedist did not want to write a scrip for physical therapy, but I am going to talk to his physical therapist and get an opinion from her. If she thinks he needs it I will call his pediatrician and get a scrip from him. I just know he would be so much happier if he could get around on his own. My very own Mr. Independent!!!

Please, please, please lots of prayers for us right now!!! I am almost struggling more with this right now than in the beginning. It doesn't help that I'm not feeling well either though! I have to go force feed myself now before his appointment so my hypoglycemia doesn't attack and I faint! Wouldn't that be a lovely case to present the psychologist with!!!!

Have a great day and SIGN THE GUESTBOOK!!!

Kara

Friday, November 10, 2006 1:23 PM CST

I can't believe I've let this page go so long without an update. I have been sick, we've had a lot going on, and life has taken a few odd turns. We had a great halloween, the entire weekend before was full of activities. Caden loved his Stitch costume and was adorable in it. There were only four other Stiches that we saw all weekend. We went trick or treating at the Zoo, at several churches, and then our church's fall festival on Halloween night. It was so warm on Sunday that he wouldn't wear the head of the costume, then Monday night it was so cold he wouldn't take it off. My best friend, Mandi, and her family came with us and we did not hold up well. We stayed at the church for about thirty minutes, let the kids do the games and bounce houses and slides and stuff, and then told them it was too cold and we left. We spent the rest of the night at Ihop, eating pancakes and drinking hot chocolate. The kids had a great time and didn't seem to mind our odd night. It was really hard carrying conversation that night. I had been told just days previously that Mandi was moving to Houston for six months to a year and she was moving in only two weeks. We enjoyed the time together and made plans for another night out. We took the kids to see Flushed Away on Monday night and it was hilarious. Mandi's mom went with us and I think she enjoyed the movie more than the kids. She was cracking up with laughter the whole time. It was a funny movie, but maybe not that funny. Mandi and I kept ourselves going by acting up. Right before the movie started everyone was moving around and passing around snacks and drinks, so Mandi said we look like a zoo. We looked at each other giggled and started making animal noises. I think Caden and Malia thought we had officially lost it, but it was quite funny. Between that and throwing an occasional piece of popcorn down each other's shirt, we kept our minds pretty well off of the reason we were there. We were leaving the movies and thought we had it made, but when we said goodbye we lost it. Poor Caden just didn't understand. We left with a big hug and trying to hold back tears, I know she moved for the right reasons and it will be harder on her kids than me, but I am going to miss her so much. Caden still doesn't understand what's happening and probably won't until it's time for the kids and Mickey to move to Houston. He's going to miss Malia so much! Well, that's what happened this past week!

Now for some happy news! Caden got his long leg cast taken off on Tuesday!!! He did not do well with it being taken off. It took two of us to hold him down and one more to try and distract him. It was so loud and the vibrations of the saw scared him. When they took off the top of the cast there was dried blood everywhere. His leg was packed with gauze and all the gauze on the top was soaked in dried blood. I was slightly concerned about what it was going to look like underneath, but when they cut the gauze off it was not so bad. He had steri-strips over the incision and they were a little bloody, but nothing else was. I don't know how that happened, but I was relieved. He wasn't as excited as I was to see his leg, but he was definitely intrigued. We took him to radiology and waited for x-rays. He cried some when we laid him down for x-rays, he has gotten so used to being able to stand for x-rays, but he laid good and still and calmed down as soon as it was over. We went back to wait to see the doctor, which proved to be a very long wait - he was in surgery at the time. I had brought a package of wipes with me so I could clean his leg in case we needed to put a new cast on. I started wiping his leg and he just loved it. His foot had started to stink so bad you could smell it from across the room. I got it good and clean and smelling so good I kissed it, lots. I got his leg somewhat clean too. It was still pretty rough and scaly when I stopped, but at least it is better than it was. The doctor looked at his x-rays and then came in. He took off the steri-strips and he and I both were pleased with the incision. It has completely healed and looks really good, it almost looks better than the one on his hip. It is probably about seven inches long and fairly narrow. It extends from his ankle to mid-calf on the outside of his left leg. The thing that made me so happy, is that his left ankle and foot look just like the right one. That's something I haven't seen since he was eighteen months old!!! The one thing I'm insisting on having for Christmas is his left footprint! The x-rays did not show enough growth to let it be, so they re-casted (another not so happy experience). Luckily, this time it's only goes up to his knee and it's much more narrow. He should be able to wear all his jeans and pants now! He is still not walking normally and it is still slightly painful to bend his knee, but he's doing really well. He will have this cast on until December 19th. The really odd thing is, he's werewolf! He has lots of dark fuzzy hair on his leg where the cast used to be. His skin is not back to normal yet either and has tons of little red bumps all over it, but that could just be from it being sensitive after having been covered for so long. Anyway, it's very odd and I'm hoping it will go away soon.

We had a fun zoo night again last night! We went to a members' only zoo bbq dinner and tour of the conservation center. Caden got to see his beloved penguins and we saw a lot of neat things about these animals lives behind the scenes. It was so much fun. The food was good, everyone was so kind and willing to answer all kinds of questions, and the rides on the carousel and train were free. Caden loved it all, especially the cupcake bar, when we asked him his favorite part, can you guess, yeah, the penguins! It was fun and we all had a good time, I'm so glad went.

I'm still not feeling well, sinus/allergy stuff, and am hating how busy today is. We are going to McAlester, Oklahoma tomorrow for the weekend. We are picking James up from the fire station at 7 A.M. and getting going. We will be meeting my mom's parents there and spending some time with them. It should be nice and awkward. I haven't seen them since I graduated almost six years ago and they've never met Caden or James. McAlester is a tiny town with almost nothing to do, it's half way between them and us, so there will be lots of quality time. It should be interesting, wish us luck!!!

Please keep praying for Caden's recovery! We need that bone graph to start growing and take over and make that leg grow and be healthy. Caden needs some rehab and needs to start bending that knee so his leg can get stronger, please pray for him!

Sign the guestbook!!!!


Kara

Wednesday, October 25, 2006 11:02 PM CDT

Okay, so busy, this is going to be so fast. I am exhausted. Caden and I both have finally gotten back into a routine of sorts. I think it's really hitting him hard. He has been going to bed by 7:30 every night and sleeps the entire night. I think dragging that cast around takes alot out of him. He has done great at school and has only had one time out since he's been back. I'm still not sure what that is about. Previously we have been averaging about one or two a day. He wants to be held and carried all the time, though. I would not mind if it weren't for the fact that I am having a lot of back and neck pain and he ways 35 lbs. It is killing me! We have a busy weekend coming too. We are going to the zoo tomorrow for the trick or treating night, we have a birthday costume party for him Saturday morning and a costume party for big people that night, a church down the street's fall carnival Saturday night, two church carnivals on Sunday, and our church's fall carnival on Tuesday. It should be lots of fun and bring in lots of candy. The greatest thing is that there is a local dentist who offers money for candy. I don't think it will be too hard to convince Caden to participate. He has come to realize that money means toys and movies and music and fun outings. I know I don't need the candy around the house. I have the BIGGEST sweet tooth. I have to go to sleep! Have a great weekend and thanks for checking in on us.

One last thing, Caden gets his long leg cast removed November 7th and has x-rays. They will most likely put him in a below-knee cast at this time. Please be praying for him. This will be a tough day for all of us and we need good reports on his leg. I know he won't deal well with having the cast removed and he hates x-rays, they better still have stitch stickers, and then he'll have to get another cast. Luckily, Cars comes out on DVD that day, so it may be a good bargaining tool!!! Anyway, please be praying for that day. Sign the guestbook and let us know you were here! Love you guys!!!

Kara

Monday, October 16, 2006 11:33 AM CDT

Our trip to the pumpkin patch was awesome! Caden had a great time and we only had one mishap - he bumped his head on the bus on the way home when they hit a bump. He recovered quickly and loved the bus despite it. He was so excited about riding the ramp up and down to get on and off the bus. The new girl in the class is really cute. I think she'll fit in really well with the others. She seemed to have a great time on Friday and was so cute. Caden loved having someone else in a wheelchair, her's is more permanent, she has spina bifida. It will be fun having a new friend!

The open house at James' fire dept. went really well despite the light rain that was off and on. There were lots of people there and it looked like everyone had a great time. We even got to see James at work! On our way to the station we were behind a wreck. We pulled over to make sure they had called for help and didn't need anything and then we decided to stick around because we figured James would be there soon. Sure enough, his truck was the first one there. James didn't see us because he went to the car on the other side and that was okay. I didn't want Caden standing there screaming at him while he was trying to work. Luckily there were no major injuries, just some bumps and bruises, so we went on to the station and waited for him there. There was lots of fun stuff for the kids and free food and drinks. I may be a bit partial, but it was by far the best fire dept. open house I have ever been to. Caden had a blast and was fairly nice to all the guys.

I have been a bit under the weather this weekend and am finally starting to feel a little better. Caden is still doing well. He is walking more and more each day. He asked to go to the bathroom the other day and I said who's going to take you - he's been needing help - he replied, Caden will take himself. Yea!!! Back to independent Caden! He is still fairly attached and still not letting anybody but me do most stuff for him, but hopefully that will subside soon. It usually takes him about two months to get over it and a whole lot of pushing. Sometimes I will just outright refuse to help him and let someone else take over, he will then cry for a few minutes, but once he realizes I'm not budging he'll get over it. I'm hoping this will be another good week, but I'll just take one day at a time for now! I got to get him ready for school, I'm not sure if I'll update again this week, but be on the lookout!

One last thing, his Stitch costume came in the mail on Saturday. He is the cutest alien ever! He was so thrilled and could not stop smiling, I love seeing him smile like that! I'll try and get a picture of him in it up, but I am so technology challenged! My mom had to put up the other picture for me! I just don't get it! Oh well, my talents are in other places! Have a great week and SIGN THE GUESTBOOK! Yes, that even means those of you who have signed before! And you Mrs. Amy, I know you read this and I know you see us everyday but be a good example for everyone else and SIGN IT, you to Ms. Linda!!!

Thank you all you guys at Haltom City Fire Dept. who have been checking in on us and signing the guestbook it means a lot to James, Caden, and I. We love our Fire Dept. Family!!!


Kara

Thursday, October 12, 2006 4:50 PM CDT

Caden has had an awesome week! He has been good at work and school. He has only had one bad night so far. He is now off of the Hydrocodone and taking just plain tylenol for pain. I think he decided that if he didn't get up and start walking, he'd be left behind at school. He doesn't even want to use the walker anymore. I take him in in his wheelchair and he uses it some, but mostly walks or scoots around the class. He has had no time-outs and has been very funny lately. I was informed when I picked him up today that he put on a puppet show for his class. He ORDERED everyone to sit in a chair and he got his favorite puppets, a monkey and "Nemo", and did a "show". According to his teachers it was really funny. He is such a turkey! Tomorrow he goes on a field trip to the pumpkin patch! I'm going with him to help out. He will be one of two in a wheelchair on top of the nine other special needs kids. His teachers said there are plenty of volunteers going so it should be fine. I'm still thinking it will be interesting. One of Caden's best friends has an older brother who's special needs in another school district and his class will be there too. It will be fun getting to see them too! It is supposed to be a nice sunny cool day, around 72 degrees, so it should be just perfect. We also have open house for James' fire dept. on Saturday, so we'll probably be there for a good part of the day. Have a great weekend and please sign the guestbook!


Kara

Sunday, October 8, 2006 7:45 PM CDT

We had a great time at the family reunion. As I suspected, Caden's older cousins were a HUGE help. One in particular, Alli, absolutely had a blast pushing Caden around in his wheelchair. When they weren't doing that, her and her younger sister, Jamie, were chasing the dogs around, picking them up, and putting them in theirs and Caden's lap to pet. He did very well and only took his pain meds twice. He loved the hay ride pulled by the real John Deere tractor. He thought is was great when the horses, Roman and Roxanne, followed us and were eating hay out of James hand. Oh, the simple joys for a child! He also got to go to church this morning! We got really lucky, his teachers this morning were parents of a special needs child, he died about three years ago. So, my confidence in them dealing with his challenges was high, and they definitely did wonderful. He had one "moment" and they handled it very well and it passed very quickly. His friends were glad to see him and recieved him very well, cast, walker, and all. We have a few days until school starts again so hopefully we can get in some trips to the park and zoo and other fun stuff! I'll update soon, but remember for us, no news is good news! Have a blessed week.


Kara

update-10:54 p.m.

bad news- Caden is still awake and crying, why, I'm not sure. He's had his pain meds and he was asleep, but now he's not!
good news- we found his halloween costume. I bought him an inflatable space shuttle really cheap on e-bay that he'll just wear normal clothes under, it sits around his waist and is held up by suspenders. Then, he saw a picture of a stitch costume online. Total 180, now he wants to be Stitch. More good news, the costume was cheaper on the Disney Store website than I could get it on e-bay. So, Caden will have two costumes to choose from for each halloween event he does and two awesome make-believe outfits and I got the two combined for about the amount I would have paid for a regular astronaut costume that every child in the world could own! I hope no English teachers/majors ever read this. That was about the longest sentence ever and I know it was not grammatically correct, but I'm not in school and I don't care! I bet that one wasn't either! LOL!!! I better stop before I make myself or any of you crazy!

Please sign the guestbook!

Kara

Friday, October 6, 2006 11:34 AM CDT

It has been an interesting few days! Just moments after my past entry of praising Caden's progress we had a huge setback. He woke up screaming and crying. He said his leg was hurting and was in a lot of pain. We gave him some Motrin and kept switching from his Motrin to his Vicodin all night. He finally went back to sleep around 3 and woke up about every hour just fussing. He was very lethargic all day Wednesday and needless to say, he didn't get to start back to school. He was really disappointed, but got some good rest and was ready to go yesterday. I took him to school and stayed with him. I helped his teachers so they could see what he could do and how he needed help. I also got a good picture of what I'll need to be sending with him so that the days will be easier on them all. He only had one meltdown and was a little bored when his friends played outside in the sand, but I think he will get used to it and find things he can do. He has off today through Tuesday. He'll go back Wednesday and has a field trip to the pumpkin patch on Friday. It should be a fun week for him. This weekend we have family reunion. We are only going on Saturday because James has to be at the fire station by 7 for work on Sunday. I'm a little worried about how Caden will do out on the farm. His cousins are really good to him and his Papa Joe will be there. I just hope he doesn't feel to left out not getting to run around. I am planning on taking a lot of his really cool toys in hopes that some of the kids will take interest in them and stick around some to play with him. I guess we'll see and if things don't go well, then it's only about a two hour drive home and we'll just have to go.

One last thing, I NEED YOUR HELP!!! Caden's utmost desire right now is to be an astronaut for halloween. Last year he wanted to be a SPACE SHUTTLE! I got him to settle on being a surgeon with space shuttle scrubs! I can't find a costume that is 30 dollars or under. 30 dollars is already over my budget, but I know I can't find one for much under that. If anybody knows of one that we could borrow or but for that price, or if anyone knows of somebody who could make one at that price. PLEASE PLEASE PLEASE. If anyone has an idea of how I could make this wish come true for him please let me know ASAP!

I'm off to start getting things together for the trip to the farm! Have a great weekend and please sign the guestbook!

Kara

Tuesday, October 3, 2006 10:23 PM CDT

YEA!!!! We have started returning to "normal". Caden had his clinic visit today. They closed up the split in his cast they had done to allow for swelling and checked his incision at the graph site. His doctor was pleased with his progress and released us to the public. We celebrated by eating in the mall food court, we figured you can't get much more public than that! He did really well with everything and is being quite a champ. He got to go to speech therapy and see his former occupational therapist. He is still in good spirits and has only momentary outbursts and fussy times. He is thrilled beyond belief to get to return to school tomorrow. Here's how a conversation goes that he had with my mom yesterday, I took a good nap. Ms. Amy call, I go back to school, she miss me lots, oh, Ms. Linda too. However, Ms. Amy did not call, we think he dreamed this! He is sooo funny! He also fixed my leg yesterday. I made him give me play by play so I would know what he was doing. It seems he thinks you cut open a leg and put glue inside to fix a broken bone! I wasn't about to try and explain that that isn't the case. If that's what helps him understand right now, then so be it!

Huge news- HE WALKED!!! He took about four steps tonight all by himself. We were sure he wouldn't do this for another week or two. He fell alot and definitely wasn't stable, but it was a wonderful start! He went back and forth between the couch and the bench for about five minutes. He was so proud of himself and for good reason.

He will be in this cast until November 7th and then they will put him in a short, below knee cast. Good news, it will be short, bad news, he'll have it on his B-day and Thanksgiving. I guess we won't have a B-day party after all. Oh well, he's still too young to realize it! My only worry is getting pants to fit over it. I don't want him to have to wear sweatpants all the time, not to mention sweating him to death in our TX heat, but jeans won't fit over the cast. I guess I'll figure something out! If anyone has any ideas regarding this problem, let me know.

I still have not yet found the identity of the wonderful D. Fisher who sent us the ball! Please if anyone knows, let me know. I need to get things together for tomorrow and try to get some sleep! My face looks awful from all this stress and lack of zzzzz's. Please sign the guestbook and thanks for your continued prayers.


Kara

Thursday, September 28, 2006 4:25 PM CDT

Wow, is this week almost gone already?! Caden is doing well overall. We have had dinner provided by our church family almost every night since Friday! It has been so much more helpful than we ever thought. Today, Lt. Waters from B shift at Haltom City Fire Dept. brought us some delicious looking and smelling Mexican food for dinner. This is just amazing considering that his own son is going through some rough stuff right now, we are praying for you too, Jared! The awesome response I've had from friends from the NF bulletin board is almost overwhelming. Caden has been receiving all kinds of mail, stickers, prizes, craft activities, and other things from around the country and Canada! Today, are you ready for this, he recieved a BALL!!! A plastic? bouncy ball like you buy at the store with characters on them, with our other mail, with stamps on it, addressed to Caden, and a sweet message, the ball was printed with bounce back soon on it! Soooo Cool! He loved it, I'm sure that was needleless to say! I do have a problem though! It was sent from a website, sendaball.com , but the purchaser was a " D. Fisher", the problem is, I know two D. Fishers. If you, the D. Fisher that sent this, is reading this PLEASE e-mail me.

Caden so far has only asked about twenty times to take the cast off! I thought it was going to be much worse, so that's not too bad. I feel really bad because I keep forgetting he can't do certain things. A few days ago, I asked him to sit still too many times, frustrated, I told him to sit criss-cross applesauce and be still. He put his right leg in and then fussed, I immediately realized what I had just done and apologized to him profusely and got him laughing about it. I felt so bad. Then, each night at dinner when he asks to be excused I say yes and then just sit there. He looks at me like, well, aren't you gonna help me, and I look back almost oblivious until the whole table erupts in laughter, I apologize and move him to his toys! I guess I'm still not used to it yet. He scoots everywhere, is asking to "walk" (with his walker) usually about once a day, and enjoys his scooter board. He may be home bound for another week, but maybe not. We go back to the clinic on Tuesday afternoon. They will fix the split in his cast- they split it up to his knee when they put it on to allow for swelling- they'll rewrap it, which should be really pleasant. Caden wouldn't even look at the doctor while we were in the hospital, he would close his eyes and cover his ears, so I'm not real sure how fun this appt. will be. However, this appt. should clear us to go back out and start "life" again. I have to go back to work on Tues. morning, James will stay home with Buddy. Caden may or may not be allowed to go back with me the other days I will work. He will be going back to school, hopefully, as well on Wednesday. Our district has a break next Friday thru Tuesday, so his first two weeks back will be short, I am so glad about that! Also, I know if he can't go back next week, definitely, the next, this means he'll get to participate in the field trip to the Pumpkin Patch!

He is handling things like a true champ! I am very proud of him and his courage! I keep reminding him that being brave is doing what you have to do even when you're scared! He has been very brave. He remains to be cute and funny and silly even when he's not feeling so well. For those who will be in personal contact with Caden soon, some things to remember: he has a nasty approx. five inch long scar on his back left hip and is still tender, he can do things and is capable but is very insecure in his world right now-please be sensitive and allow a little more than usual, he is the same old Caden and still a little boy- most of you will understand what I mean about that-he'll surprise you, WATCH OUT!, and last but definitely not least, be encouraging and try to make him smile!!!! Thank you everyone for everything! Please keep the prayers coming, we're still not out of the woods. His little bones still have a lot of healing and growing to do! As always, PLEASE, PLEASE, PLEASE SIGN THE GUESTBOOK. I feel so encouraged seeing all the people who care for my little guy and he will see all this when he's old enough to understand! I know it will mean a lot to him in the future. Even if you've signed before, sign again! You don't have to say anymore than Hi! It would be appreciated! We love you all and God Bless!


Kara and Caden

Friday, September 22, 2006 10:29 AM CDT

WE'RE HOME!!!!! We got discharge orders around 7 last night! He slept well, only woke once for a potty break and once because he couldn't get his leg back on his pillow (we're supposed to keep his leg elevated as much as possible). He is doing very well. He still complains a little about pain and is kind of whiny, but he's being very good. We had some rough moments in the hospital, but everyone was very helpful in getting him to calm down. We had LOTS of visitors and he got TONS of prizes. There has been so much mail for him and he is sooo thrilled. I even got a care package! The hospital was simply amazing. He did not want to leave, he loved his bed, the park, and of course child life. He has taken several steps with me holding him up by a belt and using a walker. They said within two weeks he should start walking on his own without even the walker, but we'll see. He has to stay home for two weeks! They are permitting him to go to school for speech, but nothing else. He has a split to his knee on his cast with a spacer in it to allow for swelling. They will take the spacer out and rewrap his cast when we go back in about two weeks for a checkup. That is when they will release him to be out in the general public. Good news is that he can still have people over. They just don't want to put him at any higher risk of infection or injury. We have a wheelchair to get around when we can get out and he's already figured out how to do it on his own. He has been so strong this week! He was a good bit irritable at times and not the nicest boy, but he was pardoned because of all he's been through. He even got to take pictures with the board of trustees for some advertising and maybe the calendar. I got to meet all these men and the hospital chief of staff, they were very kind and worked with Caden and the other kids to make them happy for the pictures. It was as good of an experience as an inpatient stay could be. I need to get back to my sweet boy now, but I will try and update really soon. Thank you for all your support through the beginning of this long road! We can still use your prayers! Thank you!


Kara

Tuesday, September 19, 2006 1:40 PM CDT

Yea!!! We're outta surgery! Surgery only took two hours, we were told two and a half if not more. He did really well and is still sleeping off the drugs. They will keep him on a steady morphine drip to control pain and he will be on valium for the next 24 hours at least to keep him sedated. Dr. Johnston is very concerned about his activity level and us needing to keep him calm for these next few days, so we might even go home with a mild sedative. The hospital continues to be a wonderful place. Everyone here is so accomadating and kind. They had Caden laughing as he went into surgery. They were putting a surgical cap, booties, and mask on him that was just like theirs. He started answering questions within 45 minutes of coming out of surgery. His speech is still very slow and slurred, and he's a little irritable, but all in all he's doing great! We had several friends come to sit with us during surgery, which was excellent. Our Pastor and his wife are due any moment and we think some the firefighters from James shift might come up and see him after awhile. I could not have hoped for a better experience! Please keep praying that recovery is quick and easy and that the rest of our stay is just as nice and comfortable. Oh, the cast is most definitely green! He also has his I.V. wrapped in green and they gave us extra to wrap teddy bear's arm and leg, he smiled when he saw that! I will try to update again later. Thanks for all the prayers and gifts and support. It has definitely been felt! We love you all! God bless.

Kara

Monday, September 18, 2006 2:59 PM CDT

Hello all, I'm back! As Gram mentioned before surgery is at 9:15 A.M. Caden is as active as ever and none of todays going-ons seem to have bothered him at all. We have played in Child Life, on the playground outside, in our room, and now are walking around. The wonderful news is that his cast will not be bent-knee. It will be a walking cast, but it will still be full leg. His doc said walking on it will promote bone growth! His graph will be taken from the back of his left hip, they will remove a small part of bad bone, and then put in the graph and a rod. He will be on a pain killer with some sedative effects for at least two days and we are looking at coming home on Thursday as long as there are no problems. Once again this hospital is soooo awesome. They made a sign all about his likes, dislikes, and needs and hung it over his bed. They also brought him a "welcome bag". It has a teddy bear, a rescue heroes toy, a big game, a coloring book, a musical book, a book with moveable parts, some colors, a toy bath frog that talks and makes noise, a toy flute, play-doh, and a box of colors. To top it off, EVERYTHING that could be green is! They are sooo wonderful! We had a visit with Caden's favorite clown, Joyfull. She is the owner of the monkey Caden is hugging in the photo. She brought him some prizes including his own toy monkey! He was very excited and I'm hoping some of the good of this day will hold over to knock out the BAD that tomorrow will bring. Please keep praying! We need prayers for Caden's safety and quick healing and for our family's peace of mind. I don't know when I'll be willing to leave Caden again, but I will try to have someone update whenever anything else happens! Anyone is more than welcome to come and see us or give us a call. Visiting hours are from 8-8, the same with the phone, the ringers are turned off outside of these hours. If you know my cell phone, you are more than welcome to call me up 'til 10 at night! Thanks for the prayers and please sign the guestbook!

Kara

Sunday, September 17, 2006 11:08 PM CDT

Hello! About to go to bed before the insanity starts! We have to be at Texas Scottish Rite Hospital at 9 in the a.m., so it will be a looong day. I am hoping to know before noon what room we'll be in and the exact time of surgery and other such details. My mom/Jan/Gram will update as soon as we call her, which should be as soon as I find out. Be on the lookout for several updates through the next few days. Caden knows what is happening and is handling things okay. He almost made us cry tonight. He told my mom he wanted to hear a story about his house because after he goes to the hospital he won't live in his house any more. I don't know where he got this from, but it was so sad to think he thought he wasn't going to come home again. In the name of Jesus, yes he will, and he will be stronger and healthier than when he leaves his house. He will not have any infections or nausea throughout this experience, he will be comfortable and not be frightened. This will not cause fear of doctors and hospitals and he will come out of this having seen God's grace in his life and the overwhelming love of God, AMEN!!! I have to get some sleep. Please pray for my "buddy" Caden and for me as well. Sign his guestbook and show him how much he's cared for! I want him to feel it and see it! Thank you for believing with us for God's almighty hand to be in this all the way!


Much love,

Kara

Thursday, September 14, 2006 11:06 AM CDT

Wow! So our last full week cast free is almost over! It's hard to believe that this little boy who can barely sit still, except to eat, will be in wheelchair and immobile this time next week. It's still kind of scary and I'm still a little nervous, but I'm feeling ready. Caden knows it's coming soon and he hasn't been acting out any like I feared he would. I've had him say bye to a few of his friends who he won't see for the two weeks we know we'll be out. I think tomorrow will be the hardest, for me and him. It's our last day of school, work, and having Alexis over after school for at least two weeks. I hope he behaves well enough for it to be a good day.

I met with his teacher yesterday, and I am really encouraged as to how school will be while he's in the cast. She wants to make sure he has every opportunity that the other kids do and is already thinking of strategies and ways to make sure that happens. We made a tentative plan for going back and got some ideas on how to make things work when he is back. She made sure he would still be able to attend the pumpkin patch field trip and wouldn't feel left out with stuff they do there. We brainstormed some ideas for things he can do when they go to the playground. It was a wonderful meeting and I think he'll transition well back into class. We are so blessed to have a teacher who is so willing to make things work, and who has not only one, but two awesome assistants! Thank you Mrs. Amy!!!

I have Caden's bag packed for the hospital and have to do two loads of laundry before I can begin to get mine ready. Luckily, I already know what I'm going to take, so the stress of that is off. Friends from our NF board have started to send him cards and little prizes. It is just so amazing to me how these people reach out to someone in need, even though it's someone they've never even met before. I could not ask for better support. I know Buddy will be thrilled to be getting all this mail and attention.

We talked with him the other night about a cast and what it was. We told him it would hide his whole leg and he wouldn't be able to move his foot or knee for a little while. He acted like he thought that sounded funny, yeah we'll see what he thinks when it's actually happened. I told my mom I should start a counter for how many times a day for the next six weeks he asks to take it off or get it off. He did however get really excited over the fact that it can be green. Oh how he loved the idea of having a green leg! His teacher has taken to calling him the green machine sometimes. He only colors in green, the other day I gave him fruit loops and he tried to eat only the green ones, when I spike his hair he wants me to use his special gel and make the spikes green, and he only holds the green ribbons on his taggie blanket! He is green obsessed!

I have lots to do today! I have to go to the bank and do laundry. I promised Caden and Alexis that I would take them to the park after school today, I figure this won't happen for a while after surgery. The only wheelchair accesible park is half way across town! The awesome thing I get to do is fix next week's supper. I know you're thinking why is that I awesome and Kara, you hate to cook, but hear this. I got a gift certificate to Dream Dinners, it's one of those places you go and fix the food and then freeze it until you're ready to cook it! I get to go tonight, all by myself to top it off, and make three huge portions (serves six) of delicious steaks and chicken dishes. This way, when we come back from the hospital we won't have to have fast food all the time and won't have to worry about fixing or buying food. It will all be waiting for us and there'll be lots of leftovers and it's free! What a blessing! There are plenty of other things to do as well, and I better get started!

I will be at the hospital all day Monday doing admissions stuff, and I don't know if I can access this site from the computers to update or not. I will have my mom post surgery time and any other news as soon as I find out on Monday. If I cannot access this site, then I will have her do updates for me! Please sign the guest book and please, please get those prayer engines going! We need prayer that the surgery does not get cancelled or postponed for any reason, that God guides the hands of the doctors and nurses that will be in contact with Caden, and for a quick and easy recovery! Thank you for believing with us! This could be a scary time, but with God's angels surrounding Caden, there is nothing to fear. I am standing firm in my faith that God has his hand in every part of Buddy's journey. Thank you Jesus!


Kara and my sweet silly Buddy

Tuesday, September 5, 2006 10:52 AM CDT

So another week has gone by! Only 14 days til surgery now. Caden is still loving his brushing and joint compressions and we're still seeing huge results from it. He had a great week at school with only two time outs. That is just amazing! He has off today for staff stuff, so this has been a real fun day so far. HaHaHa. We puppy sat this weekend. Our neighbors have a 13 week old dachsund and they were going to visit family in Mexico. Caden loved having a puppy in the house and did decently well with it. I had a great time with him too. The cutest thing is that the puppy's name is Jefferson, but Caden can't say Jefferson, so he spent the entire weekend running around the house yelling, "come here 'Jesserin'". It was too funny and very cute. It was nice having a puppy, but was also nice giving him back and not worrying about him messing on the floor or eating things.

We did a lot of pre-surgery cleaning this weekend. We figure we probably won't have much free time post-surgery, and these things need to be moved and cleaned before Caden's scooting around on his bootie all over the place. Speaking of scooting, one of Caden's favorite things to do at occupational therapy is ride on the scooter boards. Lucky for us, we told James' dad about this and he found some stuff that he thinks he can use to make Caden his own. If I'm really lucky, Caden will be able to use this to transport himself a bit around places. If not, well then he can use it after and still really enjoy it. We drove over near the hospital Sunday afternoon and checked out the hotels around there. I can and will stay with Caden, but my mom and James want to be as close as they can. We found one that gives really good rates through the hospital and looks very nice. It is a whopping two minutes from the hospital at the most, so that will be nice. Mom's hoping I can go there to get a nap sometimes and maybe a shower. I'm also going to have her and James have food in the room, so we don't have to buy and eat hospital food. Lots to do to get ready, but I'm still feeling like I'm kind of on top of things, lets just pray it stays that way.

Caden is begging to play a game on a website so I better go and give him some time. Thanks for stopping by and as always, please continue to pray and sign the guestbook so we'll know you were here.


Thanks lots,

Kara and Caden

Monday, August 28, 2006 1:33 PM CDT

So, post surgery he was great! We even went to see Cars on Saturday and did some shopping, but boy did I pay for it! Sunday he was very quiet and slep a lot and Monday was excuse me, but HELL. We went to therapy on Tuesday and his therapist started brushing. She has been reluctant to do it because of his leg, but decided to go ahead and just leave out his left leg. It was fabulous. The change in him was immediate and amazing. We have done it as close to every two hours as we can. He really enjoys it. He gets about five minutes of brushing and then joint compressions. He has loved it and had three days of school with no time outs!

This weekend was our new church building's grand opening celebration and it was awesome. It kept me busy and totally exhausted me. We had a kid's performer on Friday and then made punch and got things set up for Saturday. Saturday was open house with bounce houses and water slides and giveaways and drawings. Caden loved the inflatable slip and slide. This is where Caden met Millie the Monkey and enjoyed time with a clown for the first time ever. My dear friend Lana Sue does clown ministry. She goes to hospitals and parties and events. She has a marionette monkey that rides a unicycle. It is small and very cute. Caden fell in love. He had this amazing smile on his face and followed that monkey up and down the halls for so long. He even got to the point of hugging and kissing it. He has continued to talk about it over the past two days. I am going to see if Lana Sue can come make a personal visit to Caden while he's in the hospital, and of course bring Millie.

Please say prayers for both Caden and I as the big week draws closer. I realized yesterday just how close we are. Caden has all of a sudden been allowing only me to do things for him. He has even been crying when I try to leave him, even with my mom. I don't know if he's still just adjusting to all the sudden changes or if it's something bigger. Please pray for my peace of mind so I can be there and be strong for Caden. 21 days and wishing I wasn't counting!

Thanks for stopping by! Oh yeah, way exciting, Caden can now say ABC's from A to G! Go Buddy Go! Thanks for your prayers and support, and as always, please sign the guestbook so we'll know you've been here!


lotsa luv,
Kara and Caden

Friday, August 18, 2006 2:50 PM CDT

We just got back from Cook Children's Medical Center in Fort Worth. Caden got his adenoids out this morning. He did so well! I am so proud of him. He is such an awesome patient. In fact, he was in recovery phase 2 for about 5 minutes before he sat up and screamed that he wanted the IV out. He made everyone laugh and got a second popsicle for the performance. He was so good and is only a little fussy now, but I would be too in his shoes. He hasn't eaten since last night at 9. I haven't eaten since 11 this morning and I'm hungry. He gave a special request for a BIIIIG Corny dog from Sonic, so we're waiting for it to get here. He is such a trooper and I hope things go this well for his pseudoarthrosis surgery on Sept. 19th. That will be a little more difficult recovery and a lot more pain. He says he has no owies right now, but I'm going to give him a little tylenol with codeine just to see how he handles it so we know for his future surgery. They also gave us some lovely phenergan (anti-naseua) that we'll keep around for any other occasion. Food is here so I've gotta go. Thanks for the prayer and support. Please sign the guestbook and let us know you were here. Thank you Jesus for a quick and easy surgery!!!

Kara and Caden

Thursday, August 3, 2006 4:05 PM CDT

Quick update. Surgery still scheduled for Sept. 19th and adenoids on Aug. 18th. He's doing okay, we talk about it casually and with very little detail. We'll get into it a little more as we get closer. My sister gets married on Saturday so we are very busy with wedding stuff. I have the bachelorette party tonight, the lingerie shower tomorrow morning, the rehearsal and dinner tomorrow night, and then the big day. It will be fun and very, very exhausting. Caden has already met the groom's nephew, who will be the other ringbearer, and they hit it off fantastically. They are just over a month apart in age and were just so cute together. I can't wait to see how they do actually going down the aisle! Thanks for checking in on us. When I have more time I'll discuss our neurology appointment we had on Monday. Please sign the guestbook!


Much love and thanks,

Kara and Caden

Wednesday, July 19, 2006 10:08 PM CDT

We have a date!!! Caden will have his leg surgery on September 19th. We will be admitted into TSRHC on Monday the 18th and wake up the next morning for surgery. So adenoids (which is outpatient) at Cook's on August 18th and leg at TSRHC on September 19th. If not earlier, he will get out of his cast on or around Halloween day (exactly 6 weeks). He will not be doing dance this fall, since it doesn't start until the week of Labor day. I am hoping he won't realize that he's missing it, if he does I'm going to be in big trouble. I'm hoping he won't be too far behind that I couldn't have him start in Nov./Dec., I guess we will see. He will also not get to do swim class or gymnastics this fall. Swim ends in October and gymnastics runs from September to the beginning of November. This is going to be some kind of fun fall. I did talk to his former physical therapist and she is going to put him back on the calendar for after his cast is removed. Hopefully he will be slowed down for awhile, so he won't go crazy while not having his activities as an outlet. Please keep the prayers coming, I'm very nervous about all of this.

On the fun side, we got to do some fun stuff today to get my mind off all this stuff. We went to the Dallas World Aquarium with some friends. It was so neat. It is very expensive and I wasn't sure I could do it, but I figured we could use the break from life. We went and our friend's mom, who happens to be in town from Mississippi, payed for all six of us to get in. I was thrilled!!! It made it that much more special and more of a treat for me. The animals were so wonderful. Caden and I both loved the penguins the most. They are warm weather friendly, so they love the Dallas heat. If you are ever in Dallas, this is a cool spot to visit. It's mostly air conditioned and they have a lot of unique animals, not just fish. It was so much fun, and I bought Caden a cool stuffed penguin with the money I saved. He has not let it out of his sight yet. It was a wonderful blessing and at a great time. Thanks Miss Bev!

Sorry this is so long! I seem to be able to write my thoughts better than I can say them. Can you imagine being in my head!?! Yikes, and my family says I TALK alot. Haha.
Please keep up with us, keep praying, and sign our guestbook so I know you've been here! Thanks!


Kara

Monday, July 17, 2006 2:46 PM CDT

Update 9 P.M. : Went to ENT today and got what I half way expected. He wants to remove Caden's adenoids on August 18th. That is just 3 days after school starts, but at least he will have the weekend to recover. It is outpatient and they say he should be feeling fine by Saturday morning. Also, my mother and James have reminded me of something I forgot. Dr. Johnston at TSRHC said they wanted an MRI for a baseline. In the "oh, my gosh, they're going to operate on my baby" I forgot about all this. That means Caden going under anesthetics 3 times in 4 months! This is going to be interesting! Gentlemen (and ladies) start your engines, we need some winning prayers and fast!



Okay, so full reality of what they want to do to my baby has really started to sink in. I am fully confident of all the staff at the hospital. Dr. Johnston is an Assistant Chief of Staff and the Head of Research for the hospital. I am just becoming more and more aware of the fact of having to hand my baby over and what will then happen. When Buddy's had his tubes done they take him from my arms and carry him back to the OR. The MRI was bad enough when I had to leave him in the room for them to finish sedation, and then they weren't operating, just scanning. This is the big time. I'm afraid I'm going to be a wreck. The last thing I want is Caden to see me scared or worried. We still have no date for when the surgery will be, I think that will help a little. I will then be able to become my super-planner self, and work things out. Hopefully, that will help take my mind off things.

I have already started thinking about how to handle certain aspects of life while Caden's in his cast. I am hoping we'll have a wheelchair to make everyday life a little easier, but I also want a wagon. We may have to miss a few annual events due to this; James' family reunion, alumni festivities from my high school, and a few others. I guess I can't really know until we get the date set. I have started to read to Caden about hospitals and books about characters going to hospitals, but haven't yet informed him that it's going to happen to him. We won't do that until just before the hospital stay.

Gotta go now, Caden has an appointment with his ENT and he's still napping. Gotta wake him and get him there in 30 minutes, this ought to be interesting! Sign the guestbook, PLEASE!!!!


lotsa luv,

Kara and Caden

Wednesday, July 12, 2006 10:10 PM CDT

We had an awesome and surprising appointment at Texas Scottish Rite Hospital for Children. It took forever and ever as I somewhat expected. We got there on time and waited for about 1 1/2 to 2 hours to get in an exam room and then another 15+ minutes to see the doctor. The doctor had a good discussion with us. He listened and asked questions. He joked about Caden's hyperactivity, which I didn't think he was at his craziest today, and if he was on medication for it or if we needed it. Caden got a beanie baby and some popcorn. He played well while we waited and they just happened to be having a book fair, for those who don't know me I am crazy about kids books and Caden loves to be read to, that kept me busy and from getting bored. I bought a Curious George book that I probably won't let Caden touch, it was printed in 1964 and was priced then at 50 cents, funny thing is that's what I payed for it today! I want to find out what it might be worth before I let him play with it, it's in really good condition. However, lets get back to the boring medical stuff. After we saw the doctor, he wanted x-rays of his leg. Luckily, the waiting room there was space themed so Caden was thrilled. They even had a thing that looked like a space ship with a round bench inside with a computer looking thing that had buttons that the kids could push that lit up and made noise. Caden loved that and it kept him well distracted from the torture to come. I got him to leave it by promising that he could do it again when we were done. He of course started to get upset when we got in the room. I got him calmed and cooperative by showing him that he was going to stand on a table to do the xrays. I explained to him that he never gets to stand on tables and he better do it here cuz it's not allowed anywhere else. He thought that sounded pretty funny and very logical. We struggled with him about the protective "cape", but I put mine on and told him it was his backwards Superman cape and he settled down. He took three shots did them well and got rewarded with SIX stickers, no not one, not two, but six. They were Lilo and Stitch stickers to top it off. They kept him occupied for quite sometime. We went back to the room, after pushing the space ship buttons a few more times of course, to wait for the results and here what the doctor had to say. Me of course the pessimist in all medical personnel was expecting some simple comments and what procedures we might face in the future. Well, he said we would need to graft hip bone into the fibula and attach a steel rod to stabilize it. I'm thinking a few years, but no he of course is talking in months!!! I was thrown back a little, mom says I looked "shell-shocked". I'm thinking, "Wow, answers, thoughts, and procedures on our first visit!". So, it's a little frightening that my baby is going to have a major surgery, but I will be glad to get this over with and move on with life. The rodding will help protect his tibia from breaking from pressure and the grafting will (cross our fingers) help the fibula grow back together. If all goes well, his fibula may start growing, it will probably never catch up to what it should be, but just growing is good. They may eventually do a procedure called tethering to help his ankle straighten out, but that is a ways off. With all good news there also has to be some bad. As a result of the procedure, Caden will spend two to three nights in the hospital for pain and swelling. He will also be put in a long leg bent knee cast to insure that he can't put weight on it for four to six weeks. Please pray for his emotions as we go through this. He is so strong when it comes to pain, I am only slightly worried about it. It's the fact of not being able to walk for so long and being kept in the hospital and all that will come along with it. He's at an age where I don't know that he'll quite understand all of it, but I think he will be very mad and upset about everything. Add on top of this all of his sensory sensitivity and this may just be a huge nightmare. I'm looking at a couple weeks off of work and a few weeks out of school for him. We're already discussing thoughts and plans as to keep him connected and involved. As I said this is still a few months off, but it's so fresh in my mind. Sorry for rambling on once again, this is probably why noone reads any more, but oh well. I find it almost therapeutic hahaha. It's nice to get these thoughts out of my head without driving my family crazy. Please start praying now!!! Email me if you want some specific things that you can pray. Any prayer is appreciated!!!


lotsa luv,

Kara and Caden

Monday, July 10, 2006 2:33 PM CDT

So I'm really pretty sure nobody at all reads this anymore, but I'm gonna keep writing anyway. If you are reading please let me know. We had a great 4th of July and the weekend before. Our baseball game had a little rain, but it was fun overall. My best friend Mandy came with her family to make it that much funner. Caden thought it was great getting to watch a game with Malia ( Mandy's daughter and Caden's best buddy). My birthday lunch and shopping was great. I got a cute Coach wristlet from James that matches Mandy's , they're different colors though. I love it and have been using it constantly. We woke up 4th of July morning and let Caden be in the city citizens parade. He rode in his fire truck medal pedal car, although I had to push or pull him the ENTIRE way. He still hasn't learned how to pedal with his feet. He got to see a friend from school and ride along side him and his sister. It finished with popcorn, snocones, cookies, tattoos, face painting, etc. I think he had a really great time, and I got a great workout and sweat hahaha. We finished the day at the firestation with James, everyone on B shift from all 3 stations, and their friends and family. Then we watched the city fireworks with everyone at the site where the fire truck was posted. It was a lot of fun and it was nice getting to meet the guys and their families. We finished the week with some family fun and some good rest time. My good friend Laurie got married on Saturday. It was a beautiful, elegant, and way too big wedding. There were a lot of people there who I haven't seen in a long time, that was just plain weird to be honest.

I'm very excited about this week and what it may hold for Caden. We go to Texas Scottish Rite Hospital for Children on Wednesday. It will be our first time there and I'm a little nervous about it. From what I understand, everyone there is very helpful and very nice. I hope we can gain at least a small bit of helpful insight into the future with Caden's leg. I realize that Caden's current issues are very small, but as I see it, to a mother any issue big or small that separates her child out and does or has potential to hold her child back is too big. I feel as though I can't do enough to give him the best for his future. My prayers are that TSRHC can give me enough assurance for the future that I can relax and really enjoy "today". Please pray that we get there on time and find our way around easily. Also that I will be comfortable and confident with any decisions made by doctors and staff. I hope that Caden can get an even better brace for his leg and that maybe they can help me with the shoe situation. I know that they give shoes to kids who get braces there, but I don't know how it will work for Caden since he just wears one brace and typically needs two different sized shoes. I guess I will find out when I get there. I better go for now. Caden is awake and needs some mom time before gymnastics and maybe some swimming. Have a great week!


lotsa luv,

Kara and Caden

Thursday, June 29, 2006 8:03 PM CDT

Wow, how time flies! Summer is here and we are still keeping very busy. Caden is loving swimming and has taught himself how to swim. He has graduated from physical therapy, is expected to graduate from occupational therapy in September, and will never graduate from speech therapy (ha ha ha). He is however expanding his vocabulary and is getting to be a little more understandable. We are however having a difficult time with his sensory processing. He has seemingly unreasonable fears of lots of strange things including, noises, big machines, certain textures, and various other things. These "fears" have gotten worse over the past few months and have therefore made life a little difficult. When he experiences one of these things he either screams, cries, or shuts down. All of which are very difficult to bring him out of.

We had our dance recital a few weekends ago. Caden was the cutest, he had a great time and did a wonderful job. It was absolutely exhausting for me as I danced in 5 dances in the first recital and in the second recital I had 5 of my classes dance and I performed in 1. I was so exhausted, but it went well and was lots of fun. We are going to celebrate my birthday this weekend. We are going to a minor league baseball game with tickets for the exclusive club, which means free food and drinks all night and incredible seats. I'm so excited! James started work with a fire dept. and is loving it. He is spoiling us to death now that he has more money. From what I can get out of him and my best friend, this promises to be a great birthday with some good gifts.


Caden has an appointment at Texas Scottish Rite Hospital for Children on July 12th. I am so hopeful as to what they can tell us and do for him. I think Caden will really love it there, as everyone who works there chooses to be there and is not there just because it's what they get paid to do. I can't help but think that they will be much more helpful and friendly.

More good news, a little birdie has suggested that someone could be getting engaged withing the next few months. This week has been busy with lots of stops in jewelry stores and such talk of those kind of things. Other people have not been talked to about this, so for now this is just a hey, this might be being thought of, so let's keep this on the D.L.

Gotta go, there's a baby that needs to go to bed. By the way, does anyone even read this anymore? At least write a hi on our guestbook, that's all I ask. Thank you!!!


Happy Birthday to me on July 3rd!!!! The big 23!!! woooo... getting old now aren't we!!!


Lotsa luv,
Kara and Caden (buddy)

Tuesday, May 2, 2006 11:10 PM CDT

Okay, okay, so I doubt that anyone even still visits us anymore because it's been like months since I've updated. Life is so crazy I'm only getting online maybe once a month. That is, until now. We have a new "scare", but first some fun stuff.

On February 13th Caden started school. He goes every day for 3 hours. It's called PPCD or Preschool Program for Children with Disabilities. He loves it and I've stayed very busy with not having him all afternoon. His social skills and desire to play with or at least closer to other kids has grown so much. He receives speech therapy while there and the occupational therapists works with him when she has extra time on the days she's there. I don't know how he'll take not going when we're out for summer. I have a feeling June will be rough.

Caden graduated from physical therapy last Tuesday. He has accomplished so much in the past year and I am so proud of him. He has charts to do home therapy with me and we'll have phone conferences with his PT every month and a re-eval. in August. He will likely have graduated from OT in August. He's made some drastic improvements in the past few months. He will, however, be in speech therapy for several more years. He has awesome language abilities, but his articulation is very bad. He also has vocal nodules, which can be helped with therapy, and surgically helped when he's much older. He has fallen in "love" with his school speech teacher. She's a cute, young teacher with a very sweet smile, it would be hard for any 3 year old boy to resist.

On the side of not so good, I think in my last update I mentioned Caden being sick. Well here's the story, Jan. 11th-ish he had a very high fever, 104-ish, did antibiotics, got better. Feb. 24th he had a 105 fever took antibiotics, got better. March 16th he got sick again, another 105 fever. The really strange thing is that with all these fevers he never had any other symptom, just a super scary high fever and discomfort from the fever. He ate the same, played the same, slept a little more, and tylenol only brought it down some. Every time urine samples showed nothing and blood tests showed moderately low white blood counts. The last time around we didn't do antibiotics to see if any symptoms would appear. Do you wanna guess what happened, yeah, nothing. He had a fever for 4 days that slooooowly went down, still with no other symptoms. Luckily, it has yet to have come back.

If only I could say that was all that was going on, however, it's not. Yesterday as Caden was getting his haircut, the hairdresser found something. It was the same hairdresser who's cut his hair the past three times. She said, oooh mom, he must have hit his head hard here to make this bump! I can't even explain to you the WHAT BUMP terrified look on my face. She said feel right here, and sure enough there's a marble sized bump on the right side of his scalp near the hairline of his neck. My heart sank immediately. On an NF kid there's not many possibilties of getting good news out of a bump like that. We finished his haircut and I got 3 minutes away from home, after a 20 minute drive, before it really started to sink in. We were already late for school, but I stopped in the nurse's office just to see what she had to say about it. With tears bulging out of my eyes, I showed her and said, don't worry you can't give me bad news, I already think it's the worst case scenario. She gave me a few options and said if I didn't know the situation, I'd think it were one of these things, but you might be right. I called the doctor and got an appointment after school. The pediatrician was as usual completely not helpful. He said it looked like a dermoid cyst and explained what a dermoid cyst is made up of and that we were just going to need to make sure it doesn't grow and that was all. I came home, did research, and got really upset with him. A dermoid cyst is a benign tumor. HELLO! EARTH TO DOCTOR! I have a child with a tumor-causing disorder! You don't diagnose him with a tumor and not check or reassure us that that's definitely what it is and it is benign and not embedded in his brain. His last MRI showed lesions on his cerebellum, but not this that occurs at birth! Yeah, that makes lots of sense. I needed to schedule his once yearly visit with his geneticist anyway so I called today. They scheduled me for 31/2 weeks away. I was not real happy, but it could have been longer. This, however, is not the end. They called back and said that someone had scheduled for that same appointment at the same time so we needed to reschedule. I was speechless, I just told her I just don't want it to be further away. She said, oh no, in fact we just had a cancellation for next Monday the 8th. I was not speechless, I think I said thank you ten times. I know this was a God thing. Last year out appointment was 5 weeks away. Thank you to everyone who prayed for us today, I know your prayers helped make this possible. So hopefully the geneticist will go along with my thought that a MRI would be a good idea. She has a lot of knowledge about NF and she's very good about keeping me informed on the why's of her decisions. I was grateful for her saying last year that we wouldn't plan on an MRI for the next two years, but now I'll be grateful for her getting us one. Isn't it funny how things change. Please pray that this is just a dermoid cyst and that we'll figure out what the best course of treatment for Caden will be. Please also pray for his protection through this all.

Off to bed, it's been a very long week and it's only Tuesday night. YIKES!!! I am going to be so anxious for Monday, please also pray for my peace of mind, comfort, and rest. Oh yeah, and we've found a church we really like. I visited for the first time Sunday, it was Mom's second. They have emailed us and brought us cookies and reached out when this happened yesterday. That's such an incredible feeling from people who you've met once. Thank you Jesus for people who truly love and care, that's what get's you through the rough times.


Thank you for reading through my constant rambling that you thought would never end.


Kara

Wednesday, January 25, 2006 12:21 AM CST

Wow!!! I did it again. I went way to long before updating. It has been an adventurous new year. One of my best girlfriends, Seana, was in town the weekend after New Year's. Her husband, Kevin, is a professional motocross racer and they were here for the Dallas Arenacross races. It was so much fun getting to watch him race and spending time with Seana. They hooked us up with pit passes for the whole weekend so even Caden went. He only cried about the noise once when a bike zoomed passed him from behind. He otherwise was incredible the entire weekend. He was out way past bedtime and was still sweet and happy. He insisted that Kevin was his buddy and cheered him on in every race. The look on his face when Kevin would race past and fly over the jumps was so incredible. He would get this huge grin and his whole face would light up. Watch out Ricky Carmichael, Caden's going to be big enough to ride a bike someday!!! The educational benefit was that Caden now recognizes the number four, it was Kevin's race number! Thanks Kevin, I couldn't get him to do it any other way!!!

So while that weekend was great, what followed wasn't so wonderful. Caden came down with a bad cough and a high fever. I took him into the doctor who took blood and did some tests and was sure it was just a virus. He put him on cough syrup and sent us home. However, the fever stayed above 100 for five full days and the cough worsened. On top of that, Caden, who hadn't had an accident in about a month, started wetting his pants. We took him back on that fifth day and they put him on antibiotics thinking it was something like bronchitis. The antibiotics worked well and the steroids helped with his cough. Sadly, we have continued to have a few more accidents and his behavior has been awful. Neither me nor his therapists are really sure what's going on, but I'm trying some different tactics to try and get things back to normal. His sensory issues have even hit an all time high. I'm just hoping it stops soon, because I've already called a few zoos asking if they have any room for a monster, but nobody's taking!

Good News! Caden is being evaluated on Monday for the school district's preschool program for children with disabilities(PPCD). Please pray with me that they accept him. We both need him to be there. It's five days a week for three hours a day and they will do many different types of therapies with him there along with learning stuff that I am having no success with him. It could be worse, but I've faced some opposition from people lately because he looks normal and typically acts somewhat normal. I'm having a hard time explaining to people that because he's smart and play with other children doesn't make his disabilities any worse or better than other disabled children. He's had issues with his own disabilities lately. That's probably been just as hard as me accepting all of this and working through it. He asked for a new foot because "this one foot is bad, it's broken, I want a new one". He went on like this one night for ten minutes. I was so stunned that I didn't know what to say to him. It took lots of prayer for me to realize that he neither meant it or fully understood what he was saying. I'm telling you, a lot of this stuff is really just a psychological battle. He got a trampoline from his buddy Malia, when their family moved and cries when he jumps because he "can't jump high". I tell him he jumps as high as he can and he should have fun doing it, that everybody jumps as high as they can and you won't ever be able to jump as high as everybody else. It's so hard explaining things like that to a three-year-old. Six months ago he couldn't jump at all, I just consider it a success for him to get two feet off the ground. I wish I could show him how hard he's worked and what progress he's made. It's also been almost two months since he's fallen up or down stairs, he can even do some without holding on to anything. I guess I could consider it good that he wants to keep being better and isn't settling for what he can do just okay. Someday that will benefit him, it just makes things harder on me right now.

Okay, now for some amusing Caden things. Caden learned a new word while watching cartoons on Sunday, lucky for me not a bad word. He says with perfect clarity and pronouncing every letter, "Mississippi". Now, how my son can say Mississippi clearly and not his own name I'm not sure, but we sure do get a kick out of it. As I have mentioned before Caden is into all things relating to any super hero. The newest is Superman, or "Su-PA-man". He will be playing Batman and then all of sudden get in some weird position and say I change into my superman suit and fidget with imaginary clothes and then run around saying I superman I save you. My mom taught him to say the superman line, but from him it's, "look, sky(as he points in front of himself), it bird, it plane, no it su-PA-man. Then he giggles and runs around some. The not so great part is that just about every other sentence is I watch superman or I watch Batman-Scooby Doo. He doesn't quite get my one a day rule, that or he just doesn't see any harm in continuously asking anyway. He still loves riding his amtryke and will now showoff by puttin his hands in the air and pedaling with just his feet, a feat both he and I am very proud of. The next step is to see if he can pedal his fire truck since that doesn't involve any balance. He is still enjoying his dance class and improving every week. His therapist is still wanting me to have him take again next year, because of the coordination and strength issues it will continue to help resolve. He will begin swim therapy again in March and I can't wait. He loves it so much and even his OT says it's good for his sensory processing. That I'm glad to hear, it's hard to do much of what would help him with sensory processing because of his fractured leg and the fragility of the bone. We are continuing to pray for more healing of that leg and more strengthening of the bones. In fact, every night one of his prayers is to keep his bones straight and strong. It's the sweetest thing to hear him talk to Jesus that way.

One last thing, James may have a fire-fighter job(another prayer of Buddy's every night). He tested with the city of Mansfield a few months back and the only reason they didn't hire him then was he had not yet taken the paramedic boards, but he's taken them now and passed. Yea, James!!!! They have given him a conditional job offer, he just has the pass the psychological exam and a physical and he has a job. It's a well paying job with great benefits and it's only a short distance from where he lives in Kennedale. Please join us in prayer that he gets the job quickly and with no setbacks.

Thank you for checking back in with us and sorry this is so long, can you imagine an actual conversation with me, for those I've never spoken to, if this is how I write. Yeah, I can talk! I guess these might be shorter if I wrote more frequently, but probably not by much, Ha ha ha. James keeps poking his head in the room and saying you're not done yet, I need the computer before 2 please. Yeah, well, what am I to do, it's just who I am and the way I am. Thanks to every one for the support and encouragement and friendship. Caden doesn't yet realize how many people care for his life, but he will someday. God bless.


luv,
Kara

Thursday, December 29, 2005 3:48 PM CST

Oh my word, there is so much going on right now!!! It has been a tremendously fun month. We are still having computer problems and it takes a lot to get anything done online. Caden is doing fairly well. His ears are back to normal and I don't suspect that they'll be a problem again for awhile. He does have a small cold right now, but it's not bothering him too bad. We had an excellent Christmas. Caden got his "more batman", hulk, spiderman, and green color just like he asked Santa for. He got all that and more. We have been very busy lately having lots of fun. Our dance studio had our annual Christmas skating party and Buddy was a skating fool. He has the little tikes my first skates and does considerably well on them. He's still enjoying his amtryke and rides it frequently. We also got to ride on the Polar Express, which delighted him in all kinds of ways. He got a bell and got to sit on Santa's lap. He had his first experience with hot chocolate as well. We had so much fun. We are going to Frisco this weekend to stay in a hotel and do some fun shopping. They have some stores there that we don't have around here. It's only about an hours drive, but it will be fun just to "get away". Caden is making huge strides in therapy. In just the past two months his speech has drastically improved. He is saying about twice as many things and is finally using 5 and 6 word sentences. However, we were just starting to understand him most of the time, now it's back to probably 60%. Oh well, we're working on him. He has decided that it is so very much cooler to wear boxer shorts and boxer briefs. Lucky for me, he will still wear briefs, have you ever tried to find boxers in a size 2/3 that don't cost five dollars or more a piece. It's ridiculous!!! I know I'm jumping from topic to topic, but it's been so long and I keep thinking of different things. You are currently getting a real view of my personality, complete spaz. Caden also got an awesome Texas Rangers jersey. Not the kind you can buy at wal-mart or a sports store, but the authentic kind, it even has his name on the back. It also has Michael Young's number (10) on it, if I had chosen it would have been Nolan Ryan's number, but it was a gift from my sister and Young is her favourite. We are big baseball fans, we love our local teams, both minor and major leagues. Even Caden will sit through most of a game. Mom and I recently got the "Star" treatment. We were given tickets and parking passes to a Dallas Stars hockey game. Not nosebleeds either $135 seats that were about 10 rows up from ice. Neither of us are big hockey fans, but who passes up a free game with parking. It was pretty awesome and we had a great time. I'll have to go soon, Caden is asking to play with his new baseball tee/pitching toy. I'll have to do that with him before he decides to start without me and bat inside. The balls are just foam, but that still wouldn't be pretty!!! My good friend Seana is coming in town the weekend after new year's. I can't wait to see her, it's been since her wedding in August since we've seen each other. Her hubby has an Arenacross race in Dallas and James, Caden and I are all going to go, hopefully with their passes, but either way it will be fun. I'm praying Seana and I can go to ballet together while she's here, but I've been having some arthritis type pain in my left knee so we'll just have to see. I hope everyone has a wonderful new year's. I can personally say 2005 is a year I could have done without. I will not be sad to leave it behind and start fresh. On a positive note here is a list of the wonderful things that did happen this year, some funny, some serious, some miraculous:


-Our Thomas the Tank Engine ride the day after finding out that Caden was tumor free
-Finding therapists who are proactive in his care and took up for his case
-Caden's tibia being restored to perfect health and being straight and strong
-Finding a pair of shoes that actually fit over his brace and his other foot and him not falling all over the place when walking in them
-the shoes not costing a million dollars
-Nordstrom's department store for their policy of splitting different sized shoes at no extra cost, when we had to buy yet another pair of shoes
-the Nordstrom shoes not costing a million dollars (this fall under the miraculous category)
-finding friends and comfort at ctf.org, the nf website
-being able to express myself and my feelings openly the best way I do, by writing, to people who listen, my friends and family who visit this site
-the fact that my son's head has diamond strength and nothing, and I do mean NOTHING, can split it open, he's "tried" several times
-i discovered just how brave, smart, strong, and so darn cute my little boy is even when facing struggles and harsh adversity
-getting front row seats, free food, free parking, gifts, and a tour at a Frisco roughriders game from a complete stranger at a time I needed it the most, that was awesome (stranger is a client of mom's and the roughrider's are a minor league baseball team)
-Caden recieving his Amtryke therapeutic trycicle, having a party, eating donuts and orange juice, and bowling
-My sister's wedding, Caden walking down the aisle without teddy or taggie, carrying the pillow like a football and dragging Madeline down and then standing at the end not knowing where to go; him and Madeline slow dancing and agreeing with Madeline that they had just gotten "mawied"; him sticking his finger in the cake
-his love of watching "so you think you can dance" with me and trying to copy the mens dance moves.
-his first dance recital, God please let there be many more to come
-Caden being one of the "well behaved" kids in his dance class, I really have to enjoy this it may never happen again
-the government funded swim class that Buddy loves
-realizing one day that he is actually talking like a 3 year old, we'll just over look the fact that we don't know what he's saying ( a kid actually asked me a few weeks ago if he spoke english)
-his third birthday
-him wanting to be a doctor for halloween, doctors have not always been so gentle and given nice feelings to him
-asking to be a doctor after i informed him I could not let him be a space shuttle because I don't know how, not to mention cost if I could figure it out
-Our Polar express ride and seeing the "magic" in his eyes that everybody talks about
-that we are constantly blessed financially, emotionally, spiritually, and physically.
-the knowledge of how precious and fragile life is and having your world and life changed by one doctor on one day

Because of the year 2005, our lives will never be the same. It has been full of ups and downs and emotional roller coasters. I have grown to a fully new understanding of life and all things contained in it. We have made new friends and had experiences we will never forget. There will likely never be another year like this, or so I pray. This new year brings even more unknowns and I face it with an eager heart, an open mind, and a will that's ready to face anything that comes my way. I am stronger, smarter, and wiser because of my son and what he deals with in life. Here's to a new year, may God bless it and make it a good one. Happy New Year!!!!

Wednesday, November 23, 2005 9:27 AM CST

Hello all! Happy Thanksgiving! I am still on the crummy slow computer and it's very difficult to use. Caden celebrated his 3rd birthday on Monday. It was a great day. We went to the zoo and all the animals were very playful. He had a great day. Some quick updates. Caden recieved a theraputic tricycle on Nov. 5th. The place donated it to us and had a bowling party for the kids. It was a blast. Caden rides every chance we get. We've been having ear problems again. He had an infection and then a growth was spotted. They treated it with drops and then had to go in and surgically remove it along with his tubes. The old ones had stopped working, so they took them out and replaced them. He handled it all pretty well until his right ear got infected just two days later. He was in a lot of pain. He has antibiotics and drops now so he's much better. He still cries when we change clothes because he's afraid his shirt will hurt his ear. He is making big advances in therapy. His speech seemed to get better over night. His articulation was tested and he didn't do so well, so we are now concentrating more on that. We have also uncovered a lot of sensory problems and are working on those. There is still no more progress on the scale of the doctor problems we've had, but I think about it often so at least I'm keeping on the brain even if I'm not physically doing anything. Life has had some abrupt blows lately. There have been some major changes in our lives and it's so hard to sort "things". Caden however keeps amazing me and making me so proud. He has learned around 5 letters of the alphabet and can(and does) recognize them on EVERYTHING. He is working on more and can get some others half the time. His color naming is even improving. He gets those right 3/4 of the time now. As one of his therapists says, he definitely doesn't have an intelligence problem. He is very smart, and doesn't forget a thing. Which isn't always a good thing with his OCD. That's all I have time to say now. I have to finish some housework and then some boys are coming to play. That should be interesting with all the new birthday toys and my injured foot (Caden left an empty plastic bowl on the floor, that then got covered by a blanket, that then got stepped on by me, that then got broken into pieces which one happened to find it's way into the bottom of my foot, Caden was crying cuz his bowl was broke and I was crying cuz there was plastic in my foot, yikes it's been quite a morning). Have a happy thanksgiving!!!

Friday, October 28, 2005 5:29 PM CDT

Hi all! We are still alive and decently well! We had our computer burn, so it is no longer in use. This included a lovely visit from the fire truck. I can use an extra computer every once in a while, but it's very slow and doesn't work well. Caden has had a good month. He should get his new modified tricycle any week now. He does have a growth in his ear that has wrapped around his tube. He is not handling the steroids in the medicine well, so we go back next Thursday to discuss just going ahead with surgery. Family reunion was great. We all had a good time, even me. We are having some problems at church and a lot of people are being hurt and divided. Please pray for quick resolutions. We started the halloween festivities last night and have something for the rest of the weekend. Caden is loving it! He asked to be a space shuttle, I was not sure how to do that, so I convinced him to be a doctor and wear scrubs with space shuttles on them. He is very cute and he loves them. He is still doing well with potty training and has only had one bad day this week and it was really just a bad two hours. I have lots to do online and not much time so this has to be it for today. I will try to give more details when I have access to a real computer. Sorry to keep you waiting.

lotsa luv,
Kara and Caden

Friday, October 7, 2005 4:06 PM CDT

Okay, so I didn't update as soon as I had hoped, but do I ever?! Life is a little more at rest right now. I am still very angry and very upset. What is going on with my sweet "baby" is still just as hard to watch, but I've grasped a little more control since that last post. I am working on the issues and trying to figure out what is overwhelmed mom issues and what is a true problem with other things. We see his pediatrician, the one I want to "fire", on Monday. I will have a short talk with him about some of the issues we're having. I just am going to have to be strong and stand up for my baby. Now if only I can figure out how to do that.

We have James' family reunion to go to this weekend. It is always fun. I think Caden usually has more fun than anyone there. He gets a whole weekend to "run" and play outside and there's lots of kids and animals on top of all that. I'm just praying his OCD stuff doesn't kick in and we have issues while we're there. I think he'll be fine though.

Let the trumpets sound! Caden is officially all the time wearing underwear. He had about three accidents a week for the past few weeks. This week his only accident so far was at therapy, poor kid. He had worked so hard with Ms. Jane and then he goes to OT with Ms. Gayle and he stops dead in his tracks, starts crying and says "tee-tee" as it starts streaming down his legs. I think he was just so exhausted and his muscles were so spent that he couldn't hold it or stop it. I felt so bad for him and Ms. Gayle and Ms. Pat who cleaned the mats while I cleaned him. I am so proud of how well he's doing. He has also stayed dry every night for the past 7 nights now!!! I didn't think that would happen until he was 7! When he was a baby I had to buy overnight diapers in a size bigger to hold all of his urine. Now he can go all night without urinating ANY!!! I will still put pull-ups on him, just to be safe.


The good side of his accident at therapy this week was the reason he had worked so hard. Ms. Jane brought out a trycicle for her to see how he handled it. I informed her that at home he fall over along with the bike and he can't pedal or steer. She brought out one that has some pretty awesome modifications and let him on it. He thought that was great. He actually pedaled some and could handle the bike. It was one of those pinpoint moments in motherhood. I could not have been much more excited for him. His face was so funny. He was trying to concentrate and work on it, but every once in awhile he would relax and his face would light up. He had that precious I'm so proud right now smile. It was priceless. He can pedal with his hands or feet, so he can actually do it. It's a gorgeous trycicle be the German company Kettler. It has some awesome modifications like the hand pedal ability and straps to secure his feet and an adult handle in the back so we can help him steer. The best of the best is when I told her I had put his trike away because he gets so upset that he can't do it. She informed me that this trike he was on is one of those things that the hospital will loan you to take home and let him use it while he needs it. I was ecstatic. She sent us home to try out his trike again and see if he does any better on it. I took it out and he still can't do it, I took him to the store and he couldn't do the other trikes or bikes or big wheels either. We should get to bring the modified trike home with us on Tuesday or soon thereafter. I am so excited for Buddy! He'll have a great time riding and feeling like a big boy!

I'll let you all know how things go this weekend. Thanks for your support and prayers. Please keep checking in on us.


Lotsa luv,
Kara and Caden

Wednesday, September 14, 2005 12:45 AM CDT

Okay, I will apologize beforehand for the great big pity party that's about to come. I am so blessed to still have a child and to not have to worry about constant intense medical problems. However, God doesn't give us more than we can handle, and right now I've just about reached my max. I have had problems with Caden's pediatrician's relaxed attitude about medical care from the start, but now I am just fed up. We went through constant, severe reflux for 8 months, it took three months and almost being diagnosed as failure to thrive before they finally put him on meds. It took 20 ear infections, the first one being at 2 1/2 months old before he really did something about it. Which, by the way, was sending him to an ENT specialist to get tubes. He was delayed at nine months in some fine motor skills, but "he'll figure it out eventually", and he did with momma being mean and pushy to the poor baby. He ignored my concern about Caden's leg and foot at 20 months and said he just has flat feet, he'll grow out of it. How can both feet be flat and one foot look so different? Here's how, they can't!!!!! Something was wrong then and we could have figured it out, but he didn't take the time to really look and listen. I can no longer be talked out of the thought that we have been treated this way because 1. Caden is on Medicaid and 2. I'm a young, single mom. People assume that I know nothing and I can be pacified and looked over. Well, they have another thing coming. I knocked the socks off of a neorusurgeon for knowing so much about my son's particular conditions. Why won't any other doctors listen to me? His orthopedist is aware of the break in Caden's fibula and the condition he walks in, but wouldn't do anything for him. He admitted to me that he's never dealt with psuedarthrosis before, much less the rarity of Cad's pseudarthrosis of the fibula. I asked about casting and leg brace and other things, but he said that since the fibula is such an unimportant bone that he didn't feel that any of this was needed. I decided to pull Caden from Cook's orthopedics and take him to Texas Scottish Rite. I delivered the referral papers to the pediatrician and he wrote that Cad has NF and there are no problems with it so far, we just want him at TSR for follow-up. I was so angry. He also wrote that there are no developmental issues. At the time Caden was 30 months old and was aged by the Early Childhood Intervention program. His physical abilities age was 18 months, his speech was 25 months and his fine motor skills were at 14 months. His ped. had these papers that stated this and he had recieved notification that Cad was accepted for therapies by Cooks. I took the referral back and asked him to fill it out again and it still did not get much better. So now I have new referral papers from Texas Scottish Rite and I want to be there when he fills them out, I also need a physician's approval for water therapy, but they won't let me schedule an appointment to get these things. They want me to drive another 30 minutes to drop off the papers, again, and have the ped. call me about them and then drive the 30 mins. again to pick them up, just to hope that things were actually done right this time. I DON'T THINK SO!!!!! I am irate. I want to switch pediatricians, but the only ones any closer to us that are available for medicaid patients are either stinky or in bad neighborhoods. I feel stuck and this really sucks! I feel like I can't do anything to help my child and this is not a good feeling. I am lost as to my next step. Again, sorry about the pity party, but I just can't take all this crap. Maybe I'll write again later when I'm not crying every 15 minutes and really upset. I hope your days are going more smoothly than mine. Thanks for "listening" and being there.


Lotsa luv,
Kara and Caden

Thursday, August 11, 2005 1:09 PM CDT

I have good news, no, GREAT news!!! The buddy is potty training!!! I didn't think this would ever happen. We started last Friday afternoon and he has done so well so fast. He's been having B.M.s on the potty about 60% of the time for several months, but he's finally started to come to me before he has them. So I decided it was time to try this potty thing out and he has AMAZED me. He was only having accidents around bedtime and naptime through the weekend. Yesterday, he went ALL DAY without any accidents. He stayed dry even through naptime. Then, to top it all off he stayed dry overnight. That was unthinkable, I mean we're talking about the same little boy who used to have to wear an overnight diaper in the next size up in order to not soak through. On top of all that, he came and told me this morning when he needed to go and he wasn't telling me as he was going, he actually held it til he got to the potty!!! Now, I am sure this is not normal. I feel like I could start putting him in actual underwear and he'd be find at least 90% of the time. Now if he can only get the whole "aim" thing down. It doesn't matter if he stands or sits, it still happens to go everywhere occasionally. Oh well, I guess that's a fact of life with a little boy. I have to say that I couldn't be a much prouder momma than I am now. I have an excited feeling that his life really will be a miracle. He has pushed through so much and conquers things with such strength and much silliness. This is definitely another milestone to celebrate. Thank you for being in celebration with us. Please pray for our continued potty success. I know Jesus cares about things such as this and he has blessed me with puick success. He knows I couldn't have handled much more stress in life.


Yea, yea, and more yeas. Our friends from Arkansas are supposed to be coming over labor day. Mom has a trip planned with some girlfriends and I hate being in the house alone. Now I won't only have to be alone, but have the best company I can imagine right now. Ginna's daughter Whitney survived a brain tumor when she was little and now goes through lots of therapy and wears a brace just like Caden. We were close even through all that and now our connection is even stronger. We always have fun when they're here. We are also supposed to meet them in McAlester, Oklahoma in a few weekends. We spend the night, go out to eat, and do a little antiqueing. It will be nice to get away for the weekend, last time we went was right before Mother's Day 2004. It's definitely time again.

Not much else going on aroung here. I will start watching my neighbor's daughter for a few hours after school, starting next week. I'm also trying to get a hold of someone to give us some exercises in water therapy that I can do with him. If I can find someone, then I will get a pass to a local swim center and add that to our therapy time each week. I hope I can with as much as he likes water and swimming. Have a blessed week and keep up the prayers. God bless.


lotsa luv,
Kara and the big boy who goes on the potty, Caden

Monday, August 1, 2005 6:14 PM CDT

Hello all!!! A fairly uneventful couple of weeks! Caden has indeed been enjoying his new power wheels jeep. He still stops for gas and to do the windshield wipers more than he actually drives it, but that's okay. I don't know if I remembered to mention this or not, but Caden's hair is back to the spikey look. I deciced that the long and shaggy look was too hot for the Texas summer so we cut it and spike it now. In fact, he gets pretty ticked when it isn't spiked. He's so funny. That's one of those OCD things that's just plain cute.

We're now doing speech, occupational, and physical therapy. All on Tuesday, It's a long day but it saves my sanity from driving back and forth all the time and he handles it well. Last Tuesday was our last day with his PT, Sarah. She was really great and they have yet to replace her. :( However, the manager of the clinic is also a PT so she's going to take on Caden until they hire someone else. I'm hoping this will be a good thing. I'm also glad that we don't have to miss a few weeks like we thought would happen. Caden needs as much help as he can get. Ha ha! His arms are all scratched up again because he fell down the stairs at church yesterday, once again. I don't know what to do with that boy. It's a good thing his pediatrician knows that he's accident prone, otherwise I might have problems with CPS. He has scratches and cuts all over his arms, bruises all up and down his legs, and two big bruises and bumps on his forehead from walking into a table! Not to mention the lovely red area next to his ear where he got stung by a bee while swimming on Saturday!!! Poor boy!!! We were at a friend's birthday party and having a great time at the neighborhood pool. The bees were out in full force and not really bugging us too bad. Yet, one of course landed on Caden and when he reached up and touched it, it stung him. I jumped across the kiddie pool and swatted it down into the water and scooped up Caden. Caden, of course, was screaming and I was trying to remain calm. I had a friend help me remove the stinger and I held him so I could watch him closely. I am allergic to EVERYTHING. I'm one of those nerds who has to carry an inhaler everywhere. I do not know as of yet if Caden has any severe allergies, and we were a good ways from any hospitals. So I'm sitting there trying to calm him down and thinking, Oh no, what do we do if he is allergic. If he had a reaction he most likely would have had to be careflighted to a hospital. I was a little concerned. Luckily, there is no allergy to bee stings, so that was the good part. That was the ONLY good part. I spent the next hour and a half calming down an OCD 2 year old every five minutes because there were still bees. Even after the bees were killed, there were still crickets and flies around. Any time one came even relatively close, he would completely fall apart. It was a mess. He calmed down in enough time for the cookie cake and 30 more minutes of swim time. Although he is still talking about it. You can quite often hear him playing and going " bzzzzzzzzzzz, BITE!!!", as he zooms his fingers through the air and lands them on his or something else's ear. It's kind of pitiful, but kind of cute at the same time.

Many of you may have heard of the huge chemical plant explosion last week here in Ft. Worth. Well, my mom is the manager of a company that sells chemicals in a nearby city and the plant that had the explosion is her main supplier. She knows just about everyone who works there and has known many of the employees from jobs they had before there. Luckily, there were only four injuries and no fatalities. All but one of the injured was released the same night. However, the one who wasn't released was sent to Parkland Memorial Hospital in Dallas, who is known for having the best burn unit in Texas. Sadly, this is one of the guys that delivered to mom's office everyday for years with another company. His name is Kent. The burns were kept to pretty much just his face, head, and his arms. His arms were completely covered in 2nd degree burns and the top of his head is burned and a few spots on his face. We went to see him Friday night and he didn't look too bad. He is still in alot of pain and he hasn't eaten much. He sleeps alot, but that's probably a good thing. He could have been much worse off and we praise God he wasn't. His family is really sweet and a great Christian family. They have been holding us up in prayers during our hard times. Please pray for a quick recovery for Kent and to help his family deal with all of this. His son was working at the plant when it happened and watched his dad run out of the building on fire. He then held his dad in his arms until the paramedics got there. There will have to be a lot of investigations to figure out what happened and the future of this location of the company is uncertain. Please, please, please be in prayer for all who are involved in this!!! On a side note, please also pray for a family I met while we were there whose 9 year old was in Burn ICU with 85% of her in 3rd degree burns. They lost a 7 year old and a 5 year old in the fire. They desperately need prayer as they struggle in this time of pain. The little girls name is Maggie. Please lift her and her family up.

Enough of the sad depressing stuff. James has another Chief's Interview with an area fire department on Thursday. So, please pray that he does well and that God will put him where he's needed. Not much else to go on around here. I got tickets to an Avril Lavigne concert in a few weeks so I need to decide who to take with me! I will also start picking up my neighbor's daughter from school next week and keep her for a few hours. I'm not sure how that will go yet, but we'll see. I think it will be fine. I'll update next time anything decently worth repeating happens. So keep on knowing that no news is still pretty much good news. I will add something real quick, I am a major shopaholic and love buying great bargains. I came across the motherload last week. I was at Target and they had marked down there toys to 75% off. I bought pretty much all of Caden's birthday and Christmas stuff. All but one thing cost me in between 75 cents to 3 dollars. Isn't that awesome!!! I spent way more than I have right now, but I figure it is worth it in the long run, when I don't have to scramble in the holiday craziness to find presents for him! Praise God for the little things that make us smile each day!!! Give him your thanks and have a great week!!!


lotsa luv,
Kara and Caden

Sunday, July 17, 2005 10:20 AM CDT

Yea, Yea, and a great big huge YEA!!!!!!! We got the battery for Caden's Power Wheel Jeep on Friday. My mom went out and bought it claiming that she got paid so she can afford it, but I think she couldn't stand it anymore than I could. We charged up the battery and let Caden see it for the first time yesterday afternoon. He was so delighted. His eyes lit up and he ran and climbed into the truck. He played on it for about 45 minutes until mean old momma made him go inside to cool down. It was so humid outside that there was sweat rollin down his face. His favorite part was the windshield wipers. You turn a knob and they actually work. He stopped about every three feet to do that and "give it gas". There's actually a gas cap and a hole in the back. He doesn't quite have down how to drive it, but with a little help he does fine. I have great pictures on my digital camera, but I have to figure out how to get them from there to here. I'll figure it out soon enough. Be warned, when I do figure it out, you'll have to check out the picture page often, because I've been having lots of fun with my camera.

That's all for now. I think I might have a sinus infection I've been trying to fight off for a few weeks now and Caden hasn't been sleeping well. He woke up this morning with his vioce sounding funny and a friend told me there's a sore throat bug going around. It's not strep or treatable, it just bothers them and makes them not feel well. So I took the safe side and kept us home from church today. Hopefully he'll nap well today and I can do laundry. YIPPEE! Have a great week and I'll update if anything exciting happens. Otherwise just know that no news is probably good news! Please go back and read my last few weeks journals if you hadn't already! I've updated more often than I had previously and I don't want anyone to be lost.

Thursday, July 14, 2005 5:07 PM CDT

Caden had his opthamologist appointment today. He was good for the doctor and tech. Great news!!!! They found no problems, last visit they said he was near sighted and would eventually need glasses, but this time they said he's seeing 20/25. He also said that at Caden's age there is a margine of error because of their short attention span, but that his was probably more like 20/20 than the other way! That's really good news that he doesn't need glasses, but now we have to figure out what will solve his visual spatial problems.


A little sad news. We have been at some stores looking at the power wheels jeeps just to make sure its not to big for him before we bring his home. I was looking at the batteries because the jeep has none, and found out it will cost us 50 dollars! I am so bummed, there is no way we can do that right now. Caden was so excited that he might be getting a "biiig truck"- for those of you who don't know Caden personally, when he says "big" anything he does so in a deep voice and a funny face. I hate that he doesn't have anything he can ride on. Poor buddy has stuff, but he can't pedal his firetruck toy and he falls over on his trycicle, forget about even trying to pedal that or removing the pedals for it to be a push toy. I just want something that will work for him that I can afford. I guess the "biiig truck" will have to wait for birthday or Christmas. At least he won't know the difference, it's momma that has a hard time with it.

Nothing much more going on for the rest of the month so far. Just be praying for my boyfriend, James. He has several interviews and tests for various local fire departments, and we want the best. When your such a wanted man it's hard to figure out where to go! Haha! Please pray for the right department to give him a wonderful job. For those of you who don't know, James graduated with the highest grade of his fire academy, and has only 5 months of paramedic school left and has stayed in the top (I think) 5 throughout the whole thing. For anyone who knows, that's hard to do when your also working to pay for all this. He's a hard worker and deserves the best. "Jayes fi-er job" or James fire job to those who don't speak Caden is the first thing Caden wants to pray for at night. Please join Caden in that prayer.

Thank you for checking up on us and please keep signing our guestbook. I like to know who's been nosing into our lives. Haha, Just kidding! Really please sign it and visit us often, the bottom of the page has a counter and I love to watch the numbers go up! Have a wonderful week!


lotsa luv,
Kara and Caden Madison

Monday, July 11, 2005 1:18 PM CDT

So once again I have not updated in forever. I'll try to keep it short, but we've had a lot of blessings lately. I guess I'll start with July 3rd was my birthday and it went by without any sickness or great doom. My last two birthdays Caden and I had bad tummy viruses. The worst thing that happened is that my car is falling apart and we had to pay a lot to fix it. It doesn't help that I hate the car, please pray that we can figure out what we should do about the car situation, we are really strapped for money right now, most of which is my fault. I got to go to Corner Bakery for lunch and then see fireworks that night. I got a digital camera for my b-day and i love it. Hopefully now I'll get picts. put up more frequently. We took Caden to Chuck E. Cheese on the 4th and he loved it, it was his first time. He loves to pretend and try to play big boy video games. It was so cute, we watched more fireworks that night.

Tuesday we went to OT and PT and they went well, but both therapists are concerned about his vision so we go this Thursday to have his eyes checked again(last check up Apr. 21). Thursday night we had the awesome gift of going to a baseball game. One of the guys my mom buys stuff from at work asked if she or the family would be interested in going to a Frisco Roughriders game (the riders are a AA minor league team of the Texas Rangers). I said "heck ya". Then he goes on to tell us that they are front row behind home plate and it includes free parking passes and free food and drinks through 7th inning. At this point I'm rolling on the floor giggling with excitement, then he tells her he's setting up for us to get a tour and free souvenirs and autographs. I was so elated. I have been a baseball fan since I was five and discovered the incredible Nolan Ryan. Caden appears to be heading in the same direction already. I would've taken the tickets by themselves, but with all this extra stuff, I was in heaven. The game was pretty good and the stuff was fun, Caden had a blast and that's what was important. However, I literally got ants in my pants, but I was ok and got a free t-shirt out of it.

Saturday we were offered our good friends Texas Ranger tickets which are also home plate and in the 23rd row. Way awesome seats and free VIP parking on top of a game that kept me on the edge of my seat that we finally won. Once again, way awesome, plus the Chick-fil-a cows were at the game and dropped stuffed cows over the balcony, of course Caden caught one. He carried it around and took it to church on Sunday!!!

Sunday my "sister" and her hubby took cad to Build a Bear for his prize for being in the wedding. He picked out a soft green "ribbit", he's so into frogs right now, and Auntie Melissa helped him name it Hopper. He chose a firefighter costume for it, imagine that- the first thing he wants to pray for at bed is James to get a firefighter job, and Melissa insisted on buying him a Texas Rangers outfit for it too. He's so loved and that makes me so happy. He had fun playing and refuses to keep it's clothes on because it's softer without them. I guess that's one of his sensory issues and I hope it will help him in OT because undressing is something he's supposed to be working on. He's so cute with it and loves hearing it make its ribbit sound. He also thinks it's pretty cool that momma has a bunny that can share the clothes, I have a Build a bear bunny that i got a few years ago. I hope we haven't started something!

Today my mom's boss' sister brought my mom her grandkids old powerwheels jeep to give to Caden. I have to buy a new battery for it and hopefully we'll get to bring it home tomorrow. Caden will be so excited, he gets so frustrated about not being able to ride a bike, so hopefully this will help. We'll play it up real big and hopefully I can find a hand powered "bike type" toy that I can actually afford before he outgrows the jeep. Can you believe our God and the blessings he's poured out to us. I had very recently been praying for Jesus to give us some form of rest and time of freedom from this weird sort of normal we've come to know and He answered me in so many ways with lots of blessings. I would still kill to have an actual "vacation", I haven't gone anywhere since August of 2003. Yes, you read that right I have not traveled past a 2 hour radius of Fort Worth in almost 2 years. It's really time, but like I said, we have no money so for now i'll settle for wonderful blessings and fun times.

I guess this means it's back to reality, no more presents, no more fireworks (boom-pops to Caden), and no more breaks from the day to day stresses. Thank you Jesus for the opportunities you give me and the things and people you provide for Caden. He has yet to realize that this world and life can be cruel and for that we are blessed. Please pray that the doctor can figure out what's causing the problem in Caden's visual-spatial perception and be able to fix it. We know he'll have to have glasses by kindergarten, so if they will help him now I want him to wear them now. Please please pray that we'll figure out what's wrong and that it can be easily fixed. Thank you.

lotsa luv,
Kara and Caden (and Hopper)

Monday, June 20, 2005 1:03 PM CDT

Wow! I've been really bad about this whole updating business! It's been about a month since I've done anything! Life feels like it is finally settling down some and we're getting a little bit of a routine back. We have been keeping pretty busy and I've been enjoying a break from the concerns of problems with NF1.


I don't know how much I spoke of about Caden's healing previously, but I'll lay it all out there for you now. Caden was diagnosed on February 28th, 2005. I had concerns about his foot and took him to an orthopedist. They did x-rays and discovered congenital psuedarthrosis. This led them to the discovery of NF1. Caden had a bowed tibia and his fibula was short, thin, and fractured. Well, one of the main issues of psuedarthrosis is that that break will most likely never heal, however, pseud. typically occurs in the tibia (tibia is big shin bone and fibula is little bone next to it). His doctor sent me on with no info and said we'll see you in 6 months, but I want you to see all these other specialists to make sure there's no other problems. I was in total shock! My baby had been walking around with this disease for 2 years and noone had ever said a thing. I did a lot of research and some of it scared me. Since I had seen the bowed tibia I researched for what might be done. I was quite shocked when I found out that he needed to be in a brace so it didn't brake and if they can't get things to heal right that amputation was an option. I said in Jesus' name it is not and shut down my computer! Well, in a really odd coincidence our church held its first two miraculous healing ceremonies ever in the two months following the diagnosis. I took Cad to both and had him prayed for. Everyone we could find was adding Buddy to their churches prayer chain. I finally with the encouragement of some moms on the ctf.org bulletin boards set up an appt. to talk to the orthopedist again with some new questions and lots of knowledge about his condition. They took more x-rays and the doc came in and said well he still looks good and we won't do anything, here's the clencher, because IT HASN'T AFFECTED THE TIBIA AT ALL, I'm sitting there going , what!?! He said the fibula is such a non-important bone that we'll just keep watching him to see if it ever starts affecting the tibia, I'll see you in a year and we'll check him out again. I am baffled and speechless and confused once again. I know what I saw the first time and now he says it hasn't affected the tibia. I didn't even know what to think. I let a month go by without doing anything about this, but then he was evaluated for physical therapy and I was right, he was very far behind and would need some help. I now consider his physical therapist to be our best friend, without me asking she said what would you think about bracing him. I wanted to squeal and hug her, but felt that inappropiate since I only met her 15 minutes prior. Now at a point of anger with his orthopedist I decided to apply to get Cad into Texas Scottish Rite Hospital for Children where they specialize in orthopedics. I got a crummy referral from his pediatrician and decided I would have to do this on my own. I called his orthos. office and said I will be by today to pick up Caden's records and x-rays because I am taking him to Scottish Rite. I brought home the x-rays and fell to my knees in tears. There is his x-ray of Feb. 28 and a bowed tibia, then there's the x-ray from Apr. 25 (after the healing services and hundreds of prayers) there is no sign of bowing whatsoever and the tibia looks even stronger. The fibular issues are still there, but we are believing in Jesus Christ to continue to work there. If anyone has a problem believing this then you can call the fifty other people that I have shown the x-rays to before telling them what to look for. We have even had doctor friends say oh my gosh i can't believe that when looking at the x-rays! I truly am the wonderfully blessed mother of a miracle! WE GIVE ALL OUR PRAISES TO THE LORD JESUS CHRIST!!! Caden also now has a brace to help him walk better because of his fibula and we were worried he wouldn't like it, but instead he is asking to wear it. Amen and praise Jesus! Thank you so much to those who have offered the prayers for us. You were definitely a part of this miraculous healing.

I just went off like nothing else so I will save the rest of what I have to say for another day, I just couldn't hold this in any longer. Although I have been carrying the x-rays around for two weeks showing anyone that I thought might care. Praise God and I hope you rejoice with us in this healing!

Love from us and God,
Kara and Caden

Tuesday, May 24, 2005 12:24 AM CDT

Sorry it has been so long since I've updated. Life has been kinda crazy. I hope to make this short because Caden has his Occupational Therapy evaluation in one hour. My "sister"'s wedding went beautifully. There were truly no problems. Caden was adorable in his suit and he did a wonderful job. He and the flower girl just love each other and danced together all night. It was quite precious. I spent most of the morning in pain. I had to go to the doctor and get some major pain killers and help. I got better with about two hours in which to give Caden a nap, feed him, get him dressed, shower and get myself ready! That was quite an experience. I got there on time and Caden was an awesome ringbearer and I read my scripture well. It was a great time and very beautiful.

The whole weekend was crazy. We had the bachelorette party on Thursday night and the rehearsal/dinner/casino night on Friday and the post wedding brunch on Sunday morning. It was a good fun time of relaxation.

Caden had his auditory evaluation done the Thursday of the bachelorette party (the 12th). His hearing is PERFECT!!!!! I was so ecstatic. They tested him with the equipment they usually can only use with the older kids and the appointment was done ten minutes early because he behaved so well. He played the games and followed directions so they tested him on every single pitch and he was 100%. This is great news because before he got his tubes in his ears in November he was barely hearing (35%). He hadn't been tested since then, so I definitely wasn't expecting this great of news. The ladies were walking him around the clinic bragging on him. I was so proud. I am also glad that we now also have a baseline. They will check his hearing yearly to watch for any NF related problems. Yea Buddy!!!!

We finally got things rolling with our leg issue last week, which is a huge answer to prayer. I had concerns that our orthopedist didn't know enough to give me answers about Caden's leg. I asked Buddy's pediatrician for a referral to Texas Scottish Rite to be seen by Dr. Sucato who I met at our NF conference. Dr. Sucato and I discussed Buddy's unique situation and he said he would love to treat him AND that he's seen this before. YEA!! Well, the pediatrician on the referral wrote that there were no acute problems and that we just wanted to be followed! I'm thinking, WHAT! So, I called and asked for the pediatrician to call me back and sure enough, he just hadn't thought through what he wrote and had me bring the papers back to redo. Praise the Lord. I should have the papers back soon and from there it will be about six weeks before I hear from Scottish Rite.
Another awesome thing is that I had Caden evaluated for physical therapy, we will go once or twice a week. The awesome thing is that she wants Caden's feet in orthotics because of their flatness and she wants his leg braced where it rolls in. I had been wanting this and didn't even mention it and she did it!!! Isn't God awesome. I asked and I received! Caden will get measured and fit on Thursday, June 2nd.

We have a busy weekend ahead. Caden and I have dance recital this weekend. I have 5 dances and I help Caden's class with their dance. I will be one tired momma. I am so not ready and I pray everything goes well. I also pray that this stupid sunburn from all the swimming we've been doing goes away. It was 99 degrees on both Saturday and Sunday. We spent Sat. at a friend's B-day party swimming and Sun. we went to the waterpark. We were all red. Caden's is better because he had sunscreen, but stupid momma didn't put hers on! Oh well, what's done is done. I hope everyone has a happy memorial day! So much for this being short. I couldn't write a short anything no matter how hard I tried. Please sign our guestbook and come back often. It really lifts me up to know how many of y'all care. Yes, I did just type "y'all", I am Texan, born and raised after all, and proud of it. God bless and keep you safe.



lotsa luv,
Kara Elizabeth Madison


p.s. forgot to mention Caden got his first pet, a male betta fish. He's red and Caden named him Prize. I tried to get him to give it a normal name, but he would only settle for either Yellow or Prize. I wasn't going to have a red betta fish named Yellow, so we stuck with Prize. I have never seen a fish who's received this much love. That crazy cute Buddy! Please pray that Prize will live a long life.

Monday, May 9, 2005 3:48 PM CDT

Hi everyone and happy mother's day to all the moms!

Time is passing so quickly right now and I really don't mind. This phase of life has taught me a lot, but I really won't mind moving past it. Mother's day was very interesting in our house. We lost all electricity in the middle of getting ready for church so we just didn't go. We went to lunch and spent the rest of the day preparing for my "sister"'s wedding on Saturday and messing around outside. It was not exactly the peaceful relaxing mother's day I would have enjoyed, but it was definitely memorable.

I had lunch with my new friend Dana last week and really enjoyed it. She was really nice and our baby boys got along nicely. Her eight year old son also has NF1. It's nice to have someone close to talk to. I'm hoping we'll get together more often.

We also met with Early Childhood Intervention last week and have started doing assessments for therapies. It's going well so far. Caden and I both like Amy a lot. He warmed up to her very quickly, which is a good sign. I am also taking him to Cook's Children's to be evaluated for therapies by them. I told them that I just want to explore all of my options to see what everyone can offer us. We have a month full of appointments.

The Texas NF Foundation held its annual symposium (for people like me, this is a dumb name for a type of conference) on Saturday. It was completely free and they gave us lunch! They had several local doctors and even one from Children's in Cincinatti come and speak to us about everything from genetics to research to therapies and so on. It was really nice and pretty informative. I talked to an orthopedist from Texas Scottish Rite Hospital and he wants to see Caden. I explained to him our unique situation and told him our doctor was not real familiar with this. He was very kind and fairly informative. I also spoke with a physical therapist from Children's in Dallas and she agreed with me that it would not be a bad idea to put Caden in a small brace to support his foot at least while he does therapy. I will discuss this with the physical therapists who do his evaluations and the dr. from Scottish Rite.

Caden and I also took pictures for dance on Saturday. They were so good about distracting him and he didn't mind his costume one bit. I hope they turn out well. We have recital in two and a half weeks and I am not ready. I will be by then, I have to be!

We have a week full of pre-wedding events, the wedding, and post-wedding events. It will be fun and probably slightly chaotic at times. Caden is going to be the ring bearer and looks so handsome in his suit. Auntie Melissa and soon-to-be Uncle Joseph are taking him and his friend, the flowergirl, Madeline to build a bear. He has never been and I think he will be blown away. I can't wait to see what he picks out, he always surprises me. It will be fun and I can't wait for it all to start.

I want to give you some quick facts I learned about NF this weekend, May is national NF awareness month:

1. The NF1 gene makes a protein called neurofibromin which is part of a tissue growth regulater and NF1 is a defective growth regulator

2. A neurofibroma is a nerve with a fiber filled lump growing around it

3.NF1 occurs in 1 per 3,000 births - 50% are spontaneous mutation, like Caden, which means neither parent passed it on

4.High likelihood of learning problems- 60% have problems related to ADD/ADHD, 30% incidence of reading disorders, 30-40% incidence of visual spatial & math difficulties

5.The likelihood of NF1 becoming cancer is roughly 5% a year, where as with a person without NF1 it's 2.5% a year


There is no way of knowing whether Caden will experience any of these problems ever, but we will keep praying and keep having faith in the Lord that nothing will diminish my sweet boy's awesome spirit and incredible sense of humor. Thank you for remaining in prayer with us.


lotsa luv,
Kara and Caden

Sunday, May 1, 2005 4:21 PM CDT

Hi everyone!!! It's been a busy couple of weeks at our house. We have had some great news and some fun times. I'm sorry it's been so long since I've written. This may be long for that exact reason, so I apologize ahead of time.

Caden had his opthomologist's appointment a few weeks ago and that went really well. We love the doctor, he's really nice and Caden was really good about everything. We got a thumbs up, good report. Caden is a bit nearsighted and will need glasses before he goes to school, but that's it! I expected that anyway with me being so blind, but he has none of the eye problems that so often come along with NF. Caden's Gram (my mom) came along with us to the appointment and took us out for fries and milkshakes afterwards. Caden's first milkshake and he LOVED it!!! We will now see the opthamologist once a year. YEA!!!!

We also went back to the orthopedist for a "momma is worried and can't wait til August" appointment. I'm sure most of the moms who've dealt with this know what this is like so I didn't feel too bad about doing this. For those who haven't read my past journals, Caden has a bone disease in his left leg. It is called Pseudarthrosis. It causes the bones to bow and thin and break, and makes it almost impossible to heal. Caden's is very rare and is only affecting his fibula (little bone next to shin bone-tibia) for right now. I'm almost positive his tibia was a little bowed on his first x-rays, but now it's not! I can only believe that this is by all the prayers that have been said for him. Anyway, the doctor says since the tibia is not affected, we don't know if it will ever be, we don't need to and can't do anything right now. That's good news for us. I celebrated by doing my favorite thing, I bought Caden a pair of brown leather sandals from Oshkosh that are so cute. If Caden's tibia was affected he'd be in a brace and wouldn't be able to wear sandals. So that is yea more good news!!!


Another reason I have been so busy is my mom's cousin Rick came in town to stay with us. We had a lot of fun and really enjoyed the time with him. Usually a whole week is a long time for someone to be in your house, especially when you still have to deal with the day to day stuff, but this week really zoomed by. I would do it again anytime. We did a lot of fun stuff that were firsts for most of us. Rick seemed to have a good time too. Caden absolutely loved Rick and had a blast having a new playmate for a week. We're hoping to go and see him in Savannah (Georgia) next time. He has two acres of land with a pond that has lots of fish in it. I love fishing and hope for Caden to have that same love for it. I have never been to Georgia and I know that would be a really great time for us all.


We have been really blessed with lots of good times and great memories since all this heartache has happened. God has really turned things around for us. My heart feels so much lighter and I am feeling much more peace about things. I really appreciate all the prayers for both Caden and me, they have really been seen and felt. I have a meeting with a new friend who is a fellow mom of a NF child. She lives very close and we are having lunch tomorrow, I am so excited. I will follow that with a meeting with a lady from Early Childhood Intervention. We then have an appointment with the geneticist on Thursday and the NF Symposium on Saturday. We also take pictures for dance on Saturday. Another crazy week as usual! I hope to update you on how things go when it is all over, but I may be passed out from exhaustion! Thank you for the support and please keep coming and writing.


*Kara*

Saturday, April 16, 2005 2:28 PM CDT

So once again YEA!!!!!!!!!! for no tumors. I think all the anxiety I've had over this stuff is finally started to fade away. I still have some concern over the lack of treatment for Caden's leg, but am trying to walk in faith that it will all work out.

I'm sorry I have been so bad about posting, it's been two weeks now. We had the best time riding Thomas the Tank Engine. There were tons of activities to do besides riding the train, and we did them all at least three times. Caden's face was just so incredible to watch. He amazed me and everyone around us as we played. He loved watching the animals in the petting zoo. He didn't get to pet them because I'm a selfish momma and didn't want to suffer from my allergies for the rest of the day. He hopped like the bunnies and oinked (or "inked" as he says it) and grunted with the pigs and teased the goats with his papers. He loved getting the temporary tattoos, a first for him, of James and Thomas. He got to pick a prize and not so shockingly picked a stuffed Thomas that whistles, chugs, lights up, and vibrates. It's really quite cool, it moves when you put it on a hard surface. He really loves things that he can cuddle and play with. I also got him a Thomas sandwich container and juice box holder to give him an actual useful prize. It was such a blessing to know we could be there to actually celebrate his good MRI report. I would look around and think how lucky I was to have Thomas be here the day after our wonderful blessing, and realize that we were possibly the only ones there to celebrate and not just because it was there.

We ended up not seeing Dora's house because the line was like at least an hour long and it was 45 minutes before it was supposed to shut down. We figured Caden and his buddy Malia were to young to realize they were missing out on anything. We had already had a day filled with McDonalds and lots of play time for the kids. We moms got to shop and then we went home and let the kids play outside. We ended up going to eat dinner with them as well. We are so blessed to have friends like Mickey, Mandi, and their kids to have a good time with. We have never not enjoyed a day with them, even when we helped them move. It helps that the kids get along really well.

We continued to have pretty average weeks that followed that. I've been on the phone a lot with doctors offices. We have a pediatric opthamologist appointment on Thursday. It's a safety follow up that out Ped. neurosurgeon recommended, because the opthamologist will have more sophisticated machinery that will catch even the smallest of tumors and other NF1 related complications. I have also had to schedule appointments with the geneticist (May 5) and that will lead to an appointment with the pediatric neurologist. This is all ever so crazy, but I will forever do what I can to keep my baby boy's life happy and long. I have asked questions from other moms and been doing research on Caden's bone disease (congenital pseudarthrosis) to find out why his doctor is not doing anything for now.

It is so hard and very faith building to not know anything about my son't personal treatment. I don't go long in between thoughts of doubt about his lack of treatment, but at the same time I am asking for God to heal him. I am so pulled as to which way to go, do I seek out more aggressive treatment or do I just rely on God that it will be taken care of. I keep praying that God will let me know what to do and that I'll have peace about the right solution, but I can't get rid of the nagging feeling that more needs to be done. I'm confused as to if this is the lack of peace I'm requesting or if I'm still not walking in the faith that God requires. Please pray for my peace and knowledge. I have tried to call his orthopedist three times this week but hung up not knowing how to ask or what to ask. I think all the stress has started to affect my daily life. I'm not sleeping well and get very overwhelmed very easily. Please please pray for Divine wisdom to be given to me and for me to realize that's what it is.

On a much lighter note, I had an awesome weekend last weekend. Our church had a women's retreat and I got to go. It was the first time for me to be away from Caden for 24 hours or more since he was about 9 months old. I was just at a hotel about 45 minutes away so it wasn't a big deal and he had a fun weekend planned with James and some friends. I got to relax and enjoy time with other moms and rejoice in the Lords faithfulness. It was a wonderful weekend that came right in time.

As always, thanks for the prayer and support. It is much felt and very appreciated. Please keep it coming.

By the way, definitely not to be forgotten,
HAPPY BIRTHDAY MOM!!!

My mom, Jan, celebrates her "36th" + birthday on Tuesday, April 19th. You can send her an e-card to janmadison@aol.com. She has been so awesome and supportive (when she's not crying) through all of Caden's stuff. I am glad she has been here for another year with us and pray we get to enjoy her and be blessed by her for many many more. Thank you Mammer and Papa for birthing a great mom.

We love and appreciate you all. Thanks for the friendship in whatever manner it has come.

lotsa luv,
Kara and Caden



Check out the new pictures of Cad on the photo page. There might be more soon.

Thursday, March 31, 2005 8:44 PM CST

PRAISE THE LORD!!!!!!!!!!!

God is so faithful! We went to the neurosurgeon this morning and Caden has NO TUMORS!!! We are so thrilled beyond belief. I feel like I can finally breathe again. This is a big sigh of relief for our family. I don't have to even think about this stupid disease again until May. I know I will, but I don't have to. That is such an awesome feeling, especially after the past few weeks of not knowing what was to come. This basically means that as far as the NF1 goes we don't have any other complications, so far, other than the bone deformities. We still have to see a geneticist, an opthamologist, and a pediatric neurologist, but we don't see any of them until May at the earliest.

I'm so grateful we get to have a fun weekend that isn't about trying to forget our "problems". We actually get to relax and celebrate our good news. We are going to take a special train ride on Thomas the Tank Engine tomorrow afternoon in Grapevine. Caden and I are both very excited about this. Sir Topham Hatt will be there and there will be tons of other activities. On top of all that fun, there's an interactive replica of Dora the Explorer's house at a local mall this weekend. Not only are we going with Caden's friend Malia and her family, but it's FREE. I am so excited! This will make for such a weekend to remember. I pray that Caden will remember it as well.

Thank you for all of your prayer and support. Please keep it up. We need it even in these times of rejoicing. Also, please keep the other children and families we've come to "know" in your prayers, they have not all had the same great reports we've had. THANK YOU SOOOO MUCH!!! God bless you tenfold!!!

lotsa luv,
Kara and Caden

Saturday, March 26, 2005 2:43 PM CST

Hi everyone!


This week has been fairly uneventful. We went to an Easter egg hunt on Saturday at the park. Caden didn't want anything other than the nasty candy coated marshmallow eggs. I finally convinced him to get some of the others as well. He didn't want to do any of the activities they had either. I think he was afraid his basket full of eggs might disappear if he left them. Two-year-olds have such a funny thought process.

He's felt much better this week. His cold is completely gone and he will finally leave my side without screaming, Thank you God. He did have a tough time going back to dance class. He spent the first ten minutes in Mrs. Laura's arms, then I told him if he wasn't going to dance and play he had to sit on a mat by himself. He got up and started dancing about two minutes later. He couldn't handle his friends having so much fun without him.

Either his balance is off this week or he is just that accident prone. I'm not sure which but we had three bad accidents Thursday at mother's day out alone. He tripped over someone the first time and slammed into the wall. We still have bruises and cuts from that one. The second one he tripped over his own feet and fell into a toy. The third he was running outside on the sidewalk and fell on his knees ( he was wearing shorts). They were very badly scraped and bleeding, but he didn't cry until I cleaned them. He's such a brave boy!

We had a fun Good Friday. He stayed home with his Gram in the morning since she was off of work and momma wasn't. For lunch we went to Chili's with the Hunt family. In his mind, the day couldn't get much better than that. After that, we went shopping in Southlake and he got a balloon and some Easter puzzles he could color from the Oshkosh store. Now I know it sounds like he had all the fun, but think about it from my perspective. I got to go to work by myself, which meant one less kid to watch( I work in the childcare at a ladies fitness center). I got a lunch on my mom that was really enjoyable. I also got to go shopping and find some really great deals- $7.99 for jeans for Cad(I bought a pair for next fall and the one after that)from Oshkosh. I had a pretty great day too.

It's rainy and cold today and is supposed to be the same tomorrow. YUCK!! What an awful Easter Sunday to celebrate Jesus. I hope I can find something to wear I won't freeze in. We found Cad a really cute tie that matches a dress shirt he already had. I'll get a picture to post of him in it.

I hope everyone has a wonderful Easter and a blessed week. We will see the neurosurgeon on Thursday at 2. I will try and post when we get back. Please continue to pray for Caden and all his NF buddies. Thank you for all your continued support. God bless.


lotsa luv,
Kara and Caden

Friday, March 18, 2005 6:26 PM CST

Hi to everybody. The love and support we've gotten this week has been incredible. Caden's MRI results are back and we take them to the neurosurgeon on Thurs. March 31st to have them looked over. I am so nervous, but completely faithful to God that they will be clear of any tumors. The MRI really took a hard hit on the poor buddy. He's had a hard time with separation, which we've never dealt with before. He cried for a while after I left him for dance class on Tues. I think they didn't come get me soon enough after the MRI, and he woke up in a strange room with tubes coming out of him and strangers all around him. I think I'd have been freaked out too. We're starting to come around though. He of course had no problem with leaving me to go to Mrs Barbara and Mrs Kathryn's room on Thursday. Imagine that!!!


We had a pretty fun day today. We went to the Fort Worth Botanical Garden's butterfly exhibit with his buddy Annabelle. I don't think he could think of anything as not fun with Annabelle. The flowers and plants and trees were cool, but the butterflies were AMAZING. Caden loved it when one landed on Momma's hand. He wasn't to sure about touching it, but Annabelle was probably the funniest. She walked through the entire exhibit with her hands on her head. She was scared the butterflies (or "bu-a-fies" as Cad calls them) would land on her head. They had a great time together and its days like this we need more often to get our minds off of reality.


Thanks again for all the thoughts and prayers. Please continue to pray for Cad and all the other kids afflicted with this disease. As there are so many that are worse off than we are right now. I thank God every day for the health we have had and a beautiful young man with an amazing personality and a precious smile that I still lovingly refer to as my baby boy. God bless and thanks again.


lotsa luv,
Kara, James, Caden

Monday, March 14, 2005 9:56 PM CST

This is our first journal entry and I'm very excited. I hope I can use this to keep everyone up to date on Caden's doings- both medical and the crazy day to day stuff.

Today Caden had an MRI and was not a happy camper the rest of the day. We'll find out the results in a few days. He has a cold and is pretty miserable. So pray that that ends soon, because he's being awfully clingy.

We're working on potty training and it's going okay so far. I've slacked some lately because of all the stuff we've been really busy with. Hopefully he'll be done by this summer if not earlier.

If anyone needs or wants to know more about neurofibromatosis(NF1) there are some really great websites out there. One is ctf.org (Children's Tumor Foundation). They have those great stretchy wristbands that they're selling for funds for research. You can buy 10 for $10 and hand them out to friends. Another good website is- understandingnf1.org.

Our whole family greatly appreciates your prayer and support. It has helped us get through this tough time. We love you all and thank God for having such wonderful blessings in friends.

lotsa luv,
Kara and Caden

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