Tuesday, June 30, 2009

More words I can't pronounce.

Will this ever end? Wait...don't answer that!

A little while ago, I received the forms via fax from our nurse for my Family Medical Leave Act paperwork. (again, that's a whole other issue...which I've deemed inappropriate material for my blog) Just when I thought I had Kendall's diagnosis understood and all the terminology, I read this:

"Patient has a history of reftactory asymmetric tonic seizures, history of birth congenital cataracts, neuroimaging showing a right porencephalic cyst, a left sided colpocephaly and multiple subcortical areas of cystic encephalomalcial and a history of Factor V Leiden Mutation."
Huh? I thought we had Infantile Spasms and Cerebral Palsy? Now I'm confused again. I'm sick of adding to the list. I've never heard about cysts all over her brain...and if we just have tonic seizures why are we on Vigabatrin? Are tonic seizures different from IS? ugh. It didn't say anything about the hypssarythmias...or modified hypps.

Anyway, my palms still sweat when I read anything with the Cooks logo on top. The other day we received the geneticist report. The last paragraph read:

"COUNSELING: I reviewed with Kendall's parents that it appears that her brain problems are related to the bleed that she had in the head which is probably secondary to her factor V Leiden abnormality, however, this does not usually cause cataracts. Kendall's parents have seen another ophthalmologist for 2nd opinion who concurred with the treatment and findings seen by her original ophthalmologist. Now that Kendall's mother is on aspirin, her risks for having a thrombosis has decreased. We did briefly discuss possible pregnancy in the future. Kendall's mother does not wish to go through treatment with heparin during the pregnancy, and thus, at the present time is not planning any further children. I still feel that there is a possibly another problem that we have not determined which has caused the cataracts."
UGH! I'm sick of this. This is like a to be continued line at the end of a horror movie. I'm done. Done with Dr.'s and what ifs. I refuse to live my life worried about what else Kendall has that hasn't been discovered yet. There isn't enough room on the paperwork at the Dr.'s office, therapy centers, insurance forms, etc. Its too much. So I'm over it.
The therapist this morning told my mom we need to order the splints for her little fisted hands. They've gotten worse. I'm a little bummed about that.
I did call the Medical Supply Company this morning again to harass them about Kendall's special needs stroller. My persistence paid off! We're getting the chair Thursday morning at 8:00! I'm super excited.
Positives, focus on the positives. Focus on the positives. Focus on the positives. Focus on the positives.

Sunday, June 28, 2009

A Random Weekend...


We had a great weekend. I've been so busy with work...and so overwhelmed with everything...it was just nice to relax and spend time with my family and friends. On Friday my friend Jill (who I call Jules...a long story) came over after work for a glass of wine and some down time. I've mentioned before Jules has twin boys. I don't know how she does it! They are beautiful and healthy, but I can't even imagine how tired she must be through the week! She was holding Kendall and Kendall locked eyes with her for a good 15 seconds....not something Kendall does often! I was very proud. We painted her toenails again...and I also gave her a Lauren Conrad braid. (I've been known to sport the same braid on occasion but Kendall wears it better than anyone...you'll have to look closely.)
Meanwhile, my boys (Kamden and Justin) left Friday afternoon for Oklahoma. They were eager to retrieve a camera out of a tree??!! or something like that. They were even more eager to look at the pictures when they returned home Friday evening. To my surprise this is what they discovered:
UM YEAH! Those are hogs. Wild hogs. Mean, ugly, scary, wild hogs. I think they eat people. My son is no longer allowed to run around out there. That is freaking scary. I wish I never looked at that picture. And as if that isn't scary enough...this is what they saw next:



THAT my friends is a chubacobra. If you don't know what it is, look it up. (although Justin thinks its a bobcat.) Either way...not something I want to run in to.
I don't like the wilderness. I like domesticated animals, but not wild ones. (by the way, I don't think you should shoot or hurt them either...I'm certain Justin and most of his family are rolling their eyes right about now.)
What I do like is sushi. Thankfully, Kendall, Kamden, and Justin do too. We went to dinner tonight to celebrate Kamden's green belt in Karate! Here's a picture of Kendall holding her chop sticks. She has gotten so good at going out to eat. We have carrying in her Special Tomato Chair and strapping it to the chair down to a science. We usually eat sushi at the same local place. We've been there hundreds of times. Tonight our waitress was one of the owners we've seen a bunch of times, but tonight she was infatuated with Kendall. At first we were smiling and laughing as she talked sweetly to her. Kamden was telling her all about Kendall, and I gave the short story. She left to get our drinks, then returned again to squat down and look at her. It went from sweet to just weird in like 10 seconds. Justin and I met eyes and I knew we were thinking the same thing. She kept sniffing her arms and moving her head and kissing her cheeks. She kept saying Kendall was going to be fine. She kept saying she was healthy. She kept blowing in my daughter's face. I really can't explain it. It was just weird. When we got up to leave she wanted to hold her and look at her again. SO weird. Anyway, I get irritated when people just stare at us, give us the sympathy look, ignore us, ask too many questions, or the most irritating of them all when they ask if she's sleeping. That's right. You really can't win with me. Its my problem, I know, but this was a first.

We swam a lot this weekend and did the usual weekend chores. Tomorrow, its back to the usual Monday routine. Ugh. I REALLY hope this work week goes better than the last....OK....since that's unlikely, how bout this: I REALLY hope my attitude and patience are improved from last week. And, I need to accept that there are just rotten, crummy, people out there who only care about themselves, and I shouldn't let their unhappiness ruin my day. Better?!

Wednesday, June 24, 2009

Had to Share

This blogging world for me has turned into something I never could have imagined. The amount of encouragement I get daily from all of you has helped tremendously. From equipment, to therapy, to reading material...I swear I learn something new everyday.

Today I read a comment on my blog from the mom of a precious little girl named Kelsey. She directed me to her site (you can link to it on the side of my page.) Anyway, Kelsey shares a lot of the same diagnosis as Kendall and is older. I was so encouraged by her site and this excerpt on the side of the page really moved me. I decided to share it with you all:

The Mountain

Author: Jim Stovall
From: You Don't Have to Be Blind to See
Publisher: Thomas Nelson Publishers


There were two warring tribes in the Andes, one that lived in the lowlands and the other high in the mountains. The mountain people invaded the lowlanders one day, and as part of their plundering of the people, they kidnapped a baby of one of the lowlander families and took the infant with them back up into the mountains.
The lowlanders didn't know how to climb the mountain. They didn't know any of the trails that the mountain people used, and they didn't know where to find the mountain people or how to track them in the steep terrain.
Even so, they sent out their best party of fighting men to climb the mountain and bring the baby home.
The men tried first one method of climbing and then another. They tried one trail and then another. After several days of effort, however, they had climbed only several hundred feet.
Feeling hopeless and helpless, the lowlander men decided that the cause was lost, and they prepared to return to their village below.
As they were packing their gear for the descent, they saw the baby's mother walking toward them. They realized that she was coming down the mountain that they hadn't figured out how to climb.
And then they saw that she had the baby strapped to her back. How could that be?
One man greeted her and said, "We couldn't climb this mountain. How did you do this when we, the strongest and most able men in the village, couldn't do it?"
She shrugged her shoulders and said, "It wasn't your baby."
I'm asked daily "how on earth do you do it?" I guess I have to chuckle at that question, cause I don't really know what I do...or what else I would do! Kendall is my baby. She drives me. Most moms would do the same thing for their child...that's just the way it is as a mom! (don't worry...I'm not going to go back on the baby bird tangent...you get the picture.)
Just wanted to share.
We still have a sick household. Kendall is doing better, but of course not eating. (and not sleeping, but that's nothing new.) Kamden came down with the bug this evening. He's been throwing up for the past 3 hours...only 22 more to go. My mother-in-law got it this morning. My sister and her husband got it this afternoon. I'm thankful it has been staggered a little. Can you imagine if we all got it at the same time? Oh goodness.
Oh, and this is random, but I have one more thing to share! Kamden drew a picture this morning at Vacation Bible School, and for the life of me, I couldn't figure out what it was. I know their fund raiser goes towards a hippo therapy place, so I figured the horses on the side had something to do with that. There was one horse all alone crying because nobody would play with him, and two other horses being loved on by some people. I went in his room expecting to hear some deep philosophical answer about a child with special needs or something, but instead, this is what I got:
me: Kam, what is this picture of?
Kam: duh, horses.
me: OK, what are they doing
Kam: hanging out.
me: and what is this in the middle?
Kam: oh, THAT? Well, that's a worm hole leading to a parallel dimension of zombies.
Justin and I laughed so hard we cried. That child is one of a kind for sure.

Tuesday, June 23, 2009

Misery...

Ugh. So Justin's stomach virus turned out to be a 24 hour bug. He sucked it up and caught his flight on Sunday so he could attend his Monday morning meeting. Guess what?! I got the same thing on Monday morning. Then guess what? Kendall got it last night. I'd like to think I'm pretty tough, but this knocked me on my butt. Kendall has been a trooper too. Thank God, my wonderful mother-in-law, Connie, came to the rescue last night. She stayed up with Kendall until 4:00. Kendall was just singing away all night. She didn't eat or drink anything except Pedialyte, but she was pretty grumpy.

This is the first time ever Kendall missed a dose of medicine. I called the Neuro and he said to just give her the meds 2 hours apart. Easier said than done when she couldn't keep anything down. So, she's eating right now and hopefully catching up on her medicine. Want to know the weird part? Seizures have been extremely mild.

Anyway, please keep us in your prayers. I'm afraid to eat or drink anything since I have to go to work, but I'm hoping Kendall and I are at the end of it, and Kamden doesn't get it! Ugh. I feel like I've been hit by a semi.

I haven't returned any calls or e-mails cause I haven't had the energy! But we're all on the mend now!

Saturday, June 20, 2009

Happy Father's Day...

Just want to wish all you fathers out there a Happy Father's Day. Of course, I need to pay tribute to my own father....so Dad, Happy Father's Day to you. I love you so much. Thanks for all you do for me and my kids. Your constant upbeat attitude and energy touch everyone you come in contact with. I don't think you've ever met a stranger, and you are one of the most interesting people I know. Thanks for always being there! And Coy, I couldn't have asked for a better father-in-law. Thanks for being you and always being there for our family. I miss our ice-cream sessions....and can't eat a cinnamon roll without thinking of you. As for my own grandfathers, this is my first year without both of them :(

Kendall is not only blessed with amazingly loving grandfathers, but a wonderful Daddy too. Justin takes everything in stride. He has the most laid back attitude and completely grounds me. He is so big, when he hugs me, I barely come to his chest, so when he holds Kendall it is so precious. His big arms wrap around her and soothe her when nobody else can. It's no surprise Kendall is a Daddy's girl. As soon as he walks through the door I swear she looks for him, then greets him with an ear to ear smile! I would say Jussy holds Kendall at least 3 hours a day! He's always talking sweetly to her and is so patient when she's eating...probably why she eats best for him!

Poor Justin is super sick tonight. We got up and ran 6 miles this morning around 6:30am with the baby jogger. Then he came home to mow the lawn. He swears he drank enough Gatorade, but he's had a very, very, very upset tummy tonight. He can't keep anything down. He's suppose to go out of town tomorrow on business for a Monday morning meeting, but I have a hunch we will be in the Emergency Room before the night's over. My dad just went to the store and brought him some more medicine...so hopefully it will do the trick. He's running a 102 fever. I thought it could be the Swine Flu, but he says not....

Anyhow, our house is almost completed, I finished a crappy week of work and (no thanks to my boss) my company is going to allow me to take 4 days off for Kendall's hospital stay without dipping into my vacation. I will be taking FMLA in the near future still though. Thank God people in our HR department have hearts. I hope you all have a great weekend and Father's Day.

Thursday, June 18, 2009

On Second Thought...

I'm retracting my last post...I think I was just at my wits end. Probably not the best idea to speak unkindly about my son's father or my boss publicly! By the way, in case you read it, I have changed my mind about posting it, not what I wrote! This blog is such therapy for me, I guess I lost my good judgment reacting emotionally instead of logically. (me? never.) Anyway, its gone forever. But not really. I printed it.

Have a great day.

Tuesday, June 16, 2009

We're All OK!!

I've gotten a few e-mails today to make sure everyone in the Briggs household is OK...and we are. I've just been super busy with work, and the next few weeks will be even worse. Also, as if I have time for this, I started to redecorate my house with the help of my talented friend Theresa. Not sure what started the project, but it has been a great outlet for me from all the ridiculous stress I've been under lately. Unfortunately, once we get started at 9:00 at night, we don't finish until pretty late. Justin is so encouraging and supportive of all my endeavors...and I'm pleased to announce today he agreed to moving the gun safe! WoooHooo!

Kendall's seizures are pretty much the same. My mom has been reading the Ketogenic Diet book and started to make Kendall lots of new foods with Mayo, eggs, hamburger meat, etc. Just trying to get her little taste buds ready for the massive change she's about to undergo. She seems to love all the new flavors. In fact, she's been eating so well lately we've been mixing her Pediasure with skim milk so she doesn't bulk up too much! shhh, don't tell our Dietitian. It seems our PT has strong opinions about Pediasure, thinking Kendall will put on too much weight and develop Diabetes if we continue. Everyone has an opinion it seems. This is one reason I think I like the concept of ECI and everyone working together as a team. No conflicts of interest! We are looking into going to Our Children's House at Baylor for a collaborative team of all the different therapists. Also, we are on a waiting list at the United Cerebral Palsy school in Dallas. I don't know much about it, but if it is as great as I've read...it seems worth considering. It starts at 18 months, and costs less than most day cares, so it would be well worth the drive. Lots of things for Little Miss Kendall in the pipeline. We'll see. In the mean time, keep those prayers coming!

On another note, Justin and I are in the throws of training for an 18K trail run in Austin on August 22. Its going to be grueling in the Texas heat but should be a good time! I've enjoyed getting back to running long distance again, plus its given Jussy and I something to do together. We've been holding each other accountable too! Ask anyone who knows me, I'm a happier person when I'm running...so this should help me not be such a stress ball. Plus I'm looking forward to a weekend away with NO KIDS! Running and Austin, sounds like a good recipe to me.

I have more cute pictures so I'll post with them next time...right now my pillow is calling. Not my mattress. I need a new one. Any suggestions? HA!

Friday, June 12, 2009

So Sweet

video

I am blessed. I can have a terrible-horrible-no-good-very-bad day, but look what I come home to. My family cheers me up. They are the reason I work hard. They are the reason I do pretty much everything I do. They give my life meaning. They are so precious. It just doesn't get any better than this (Ok, well maybe winning the lottery so I could stay home with them every day...with lots of spending money, a house keeper, trainer, and personal chef)

Tuesday, June 9, 2009

1st Haircut and Ketogenic Diet

On Monday we went to the Geneticist. No new news. As far as I'm concerned, at that office, that's good news. She looked at Kendall's hip again and isn't concerned. She was intrigued by our findings with the blood, but seemed more interested on what that meant for me (and the possibility of more children...a subject I'm not ready to discuss!) She wants to see us back again in 6 months. She still seems perplexed with the cataracts. We don't have a reason for them and she'd like to be able to give us a diagnosis. I hope she never can...cause that would mean nothing else pops up.

Kendall had her first haircut today! My good friend Denise did an amazing job being patient with her. As you can see, Kendall didn't exactly enjoy it. You may be thinking "why on earth would they cut her hair, she doesn't have any." But, actually she does. It was just really uneven, oh, and let's not forget about the mullet she was born with. We're hoping this will thicken it up more and help it grow! Everyone at the salon gushed and gushed over her. Before we sat down she was really hamming it up for everyone with her signature smile and "ahgggggoooo" noise.
On the way home from the hair appointment this morning, our nurse called us back. It seems Dr. Malik has decided to start Kendall on the Ketogenic diet before ACTH. We will continue with all the other medicine, but she will be hospitalized in July to get her started. We got a book a while back on the Ketogenic Diet, and I started reading it. Like everything else, it will be trial and error with no guarantees for any results. It really doesn't sound too bad. If you have any experience with it that you'd like to share, please do!
At physical therapy this morning, Kendall tested out a new gait trainer they just got in. It was awesome. She is still a bit too small for it, but when she grows I hope we can get one. Its like the stander, but closer to the ground, and when she moves a bit, it rolls.
On another note, I just want to whine a little. I hate Target now. It used to be one of my favorite places to go, but now, in order for me to browse the fun isles, I have to pass by the isle where they have ballet clothes and dress up clothes, and little girl gardening stuff with matching galoshes. EVERY SINGLE time I do, my heart sinks. I thought by now that would go away, but it hasn't. I know Kendall won't be "normal", and I have to be OK with that. But it sucks. It really sucks. It really really sucks. It really really really sucks. I want her to dance, and walk and skip, and garden. I want her to make her room messy and sneak cookies out of the cookie jar. I want her to get sent home from school with a note for talking too much. I want her to drive at 16 and go on dates(OK maybe not that) But you get the picture. It just sucks.

Sunday, June 7, 2009

Summer's Here




Just to let you know, this was the baby bird Thursday morning. Yep, she flew up in the tree. Not long after that, she flew up to the fence, and not long after that, she was gone! Thank God. I truly don't know what I would have done if that bird didn't make it!

I got into trouble by Justin for mentioning when he's out of town. I guess he's afraid someone will break into our house and kidnap us when he's not here with his handgun to protect us...ha! That person would probably take us back after about 5 minutes! Anyway, I can't mention it anymore, but I will say he was gone last week, and when he returned he just rolled his eyes at our bird situation, saying that's just what birds do. But I beg to differ. This was an exceptional bird that laughed in the face of adversity, and with strength and perseverance was able to beat the odds. So there. (Justin also criticizes my use of exclamation points!!! I do that for emphasis! Its a blog people, not a term paper! My sister likes to tell me when I misspell words too grrr...sorry I don't have my MBA from TCU, or a Bachelor of Journalism from Texas...)

ANYWAY...

The past few days have been crazy. Kam finished up his 2nd grade year. He was one of two kids on the A honor roll all year. (yes, I'm very proud!) We decided since there's a chance we may be starting ACTH soon, and that means this house will go into "lock down" to be germ free for Kendall, we'd have an end of the year pool party for Kamden's class ~WHAT was I thinking?


The kids had a great time, but since grandad is a sucky lifeguard I had to dive in after a younger child in my clothes, resulting in my cell phone being ruined. I have 320+ work numbers in that phone, so needless to say, Friday was a scramble to get it all figured out. But, I did! whew! Anyway, the same child had to be rescued by Justin about 5 minutes later. After that I made her wear a life jacket. Kendall enjoyed the day with her new shades!

We finally got the stander up and working. She seems to enjoy it, depending on her mood. It is going to be a great addition to her daily routine. It has wheels, so we can push it up to a window, take her outside or whatever. It gives her a new perspective (assuming she can see!)


Justin's cousin turned 40 yesterday so we attended a surprise party for him. The whole family was there. Kendall was held by her great grandfather for the first time. Of course, I forgot my camera, so I'll post pictures when they are e-mailed to me.
Here's a video I took this morning of Kamden putting on a concert for Kendall. Ignore the fact that he's in his underwear! He played in her room with her for about an hour. It was great. I finished the laundry!

video

We go to the Geneticist early tomorrow. Not exactly sure what she'll tell us, but it should be interesting. In the mean time, please keep Caleigh (Kendall's friend) in your prayers this week. She was admitted into Cooks last week, and we want them home soon!

Hope you all enjoy a great summer!

Wednesday, June 3, 2009

Time's Up...

Well, today marks one week for Kendall's run with the max dose of Vigabatrin. No dice. I'm calling tomorrow to see what our future holds...



I have this bad habit of thinking I can ignore something and it will go away. For instance, I pretend I don't see Kendall's seizures when I'm here with her alone. We're supposed to keep a running count, but if nobody else is around, I pretend they're not happening. It doesn't work.



So, when I came home today my mom was upset about a bird situation in our backyard. We have been watching the bird's nest for a while now. Apparently, the mama bird decided it was time for the babies to leave the nest. My mom said the mom perched on the fence almost all day trying to teach the babies how to fly. Around noon, my mom went out to check on them and found one of the babies drown in the pool. She told me about the birds, but remained optimistic that the second baby still had hope. The mom hadn't left the second baby's side in hours. My mom said it was as if the baby wanted to fly, but couldn't. The mama bird (sparrow) kept flying down and walking in front of the baby to show her how. Like, "come on, this is how you do it, I won't leave you, watch me, I'll show you how." I've been checking on the baby all night, making sure our dogs don't go outside and harm it. She's still huddled next to the fence, its getting dark, and the mom is still perched on the fence cheering her on.



I'm sure I don't need to point out the symbolism. I sat in the backyard tonight and bawled my eyes out. Not just cause I think the baby bird has Cerebral Palsy, but because I think the baby bird could also be me. With my mom perched on the fence coaching me along with undying encouragement and love.



It's been a rough year. But my mom hasn't wavered, not once. I can only hope I can be the mom to Kendall that my mom has been to me.




Tuesday, June 2, 2009

Yes, I really did.


Because this is what happens when it takes Kendall 2 hours to eat and take her Topamax and Vigabatrin by spoon. My ADD kicks in. (yep, she has bedazzled big toes)