Sunday, May 31, 2009

Fun in the Sun

Well, to start off with, Kendall's seizures have been about the same all weekend. Since our increase of the Vigabatrin, she has just been sleeping a lot! Last night she woke up every two hours (her norm) seizing. At around 5:30, I gave her some Keppra in a bottle and she went back to sleep until 10:30. So did we! We were suppose to go to church at 10:50 for Kendall to be recognized and prayed for, but we slept right through that. Oops.

We did end up having a magnificent day though. I was able to fit in a long jog before it got too hot. Kendall ate a great lunch, then we went in the back for some fun in the sun. I'm so excited Kendall loves the water. I know it will give her a great place to work her muscles, plus it is much easier for my mom to hold her in the water weightlessly. We enjoyed listening to the birds and lounging in the hammock together.

When we got hot, we jumped in the pool.

The boys only splashed Kendall once...

She was pooped, so she rested in her chair! (note the gold sandles her daddy picked out!)
It was a great day and we're looking forward to a whole summer of them!

Thursday, May 28, 2009

So Lethargic

Kendall that is...well, and me too.

We increased her Vigabatrin and it has made her extremely tired. Hence, the reason I've spent the past 2 hours while she and Kamden have been sleeping fiddling with my blog.

She has slept a lot today and the seizures have not really changed. We are suppose to give her a week at the max dose I know I should be patient. Sigh.

We took her back to the ophthalmologist this morning and everything looks great. Her eye still turns in, but we definitely see improvement. We also picked up her new prescription for her glasses. While we were there, I make an impromptu decision to buy her prescription sun glasses as well. I guess I figured she is in the car and outside enough to warrant the ridiculous cost of the lenses.

About a week ago, our PT dropped off a stander. It is actually really nice, in great shape, with a tray, and it looks brand new. Unfortunately; because we did not have a "resume services" note from our Dr. she was unable to fit her for it. Today we got the OK to start working her again, but she has been way too sleepy to do anything. Hopefully this weekend she will be good to go and we can adjust it. I think she is going to love it.

So I mentioned I was working on my blog. Why, oh why, am I so wrapped up with this thing? I seriously have spent entirely too long trying to figure out how to make a button. I got the button part (see below) but have not had any luck with the "grab my code" part. I'm so over it. I guess I just need to accept that I am technologically challenged. (just ask my IT guy at our corporate office...when I called him freaking out that my wireless on my laptop wasn't working and then realized the wireless switch was turned off!) Spending hours on this thing when I should have been finishing laundry, packing lunches, unloading the dishwasher, and returning e-mails and phone calls was not the best choice!

Hope you all enjoy your weekend!

Tuesday, May 26, 2009

Seizures, ugh.

Can I just tell you, I hate seizures? They really have to stop sometime soon. They were really bad today. Kendall has been sleeping better, but when she wakes up or is eating, she almost always has more. I can't handle it. They make me absolutely crazy. Seriously, it either makes or breaks my day. When they are mild, she does great. She eats, laughs, holds her head up, plays, looks around. When they are bad, it takes it all out of her. I mean completely wipes her out. We increase her Vigabatrin tomorrow for the last time. This is it. Please keep her in your prayers this week.

Our nutritionist was here today. Not surprising, Kendall has lost weight. We figured she would with the surgery. Fortunately she had gained weight a few weeks ago. She also grew a half an inch! Oh, and her head circumference grew too. We're now at 16.5 inches! Still making a curve...just waaaayyyy below normal... ( I don't know why, but I obsess over her head size, every time we get a new measurement I run home to plot it!)

Justin and I met with the attorney today to set up the Special Needs Trust and change our will. It is really difficult to think about how your kids will survive without you. Especially Kendall. We put a lot of thought into plans for her. But both of us feel like we can breathe a sigh of relief that we've taken care of it. It was definitely money well spent.

Justin's traveling this week again, so Kamden will be the man of the house. Good thing he knows Karate. (he asked me to write that)

Friday, May 22, 2009

Life is Good.

Well, I have never been one to be very philosophical on my blog. I have a little bit of an issue with opening up to complete strangers, but I have something to say tonight, so humor me. It's been a long day and a long week, and I have an even longer weekend ahead with work, so I'm enjoying a glass of wine and quiet time in my office.
Yesterday I had Bunco at my house with my dear friends, and while I was preparing dinner (ha! alert the press, I made dinner!) I caught a segment on the news about "children of the recession." I stopped and just stared at the TV and realized...crap, times are really tough right now. Sure, I'm in my bubble with my own life. Justin and I are both fortunate enough to still have jobs in these tough economic times. Up until recently, we have spent money like crazy. Justin has his crazy gun hobby, and I love shoes, jeans, and clothes for my kids. I haven't had an issue with buying things that aren't on sale, and I rarely even look at my grocery bill before I pay. Don't get me wrong, I can and have lived on a tight budget! When it was just Kamden and I on my teacher's salary, I knew where every penny went. Recently, we went to a financial planner. Our purpose in doing this was to set up a Special Needs Trust. (turns out its actually a lawyer who does that, and there are a ton of things to know about making sure a special needs child is protected. If you're on a waiver program for instance, that child cannot have any funds in their name...or be the beneficiary to any insurance...or they go right back on the waiting list and they don't receive benefits for another 7-10 years. Once I know more, I promise to post solely on that topic) I had a reality check with how much money we we're on a financial diet now so we can actually enjoy our retirement later on! ANYWAY, my point is, we are so blessed. And I've taken that for granted. Sure,we have our struggles with Kendall's health, but all in all, we are so lucky. And it's not just money. We have our family and friends. We have support from complete strangers. I just think that sometimes we get so caught up in all of the bad, stressful, irritations in life that we forget to stop and breathe in the goodness. I know I do. But for the most part, I believe people are kind, life is good, and if we can just focus on the positives, we'll all be a little better for it. I'm going to try to do that more. Starting now. (er, maybe after the weekend...since I have to work while everyone is enjoying their families and the weather...)
By the way, the picture at the top was taken out of our hotel room on our honeymoon to Curacao. That is a time in my life where I remember laying in a lawn chair next to my new husband and breathing a sigh of relief. I remember thinking "wow! This is as good as it gets. This is what life is all about. I'm so happy. It can't get any better than this. My life is going to start going just as I have planned" Boy was I wrong! It does get better than that! Oh, and it totally isn't going to go as I plan! Someone has a bigger, better plan! And I'm learning to accept that. One day at a time.
Think I'll have another glass of wine!

Wednesday, May 20, 2009

We're Home!

The surgery went great. Her pressures are good in both eyes. Her optic nerve and retina look normal...(ha! normal! not so much a word we use with Kendall) The hearing test was great too. All completely normal. Surprisingly, Kendall came out of the anesthesia really well. She drank 4 oz. of apple juice immediately, and we were able to give her some pears with her Keppra, Vigabatrin, and Topamax right away. She kept it down, and we made it home early. Its amazing...Justin and I have navigating that hospital down to a science. The usually stressful things like where to park, what door to go in, etc...we have down pat now. We also know all of the nurses, anesthesiologists, and Dr.'s since we've seen most of them more than once! Everybody seems to remember the sweet little girl with the glasses (and her neurotic, hyper, over-reacting mother...and tall, calm father)

I was going to post a picture of Kendall with her little "no-no's" strapped to her arms, sleeping soundly in her crib, but she has blood dripping down her face, so I didn't think you all really need to see that! She looks way worse than she is right now. I will wait for a pretty, well-rested, Kendall and take a picture tomorrow. And maybe, just maybe, we will see her right eye-ball instead of just white! (actually, the papers say it may take up to three months to see results, if we see any!)

We have to take a break from therapy for a week...shucks...while Kendall recovers.

SO, thanks for all your thoughts and prayers and well wishes. Like always, we feel extremely blessed to have such amazing friends and family. Much love to you all.

Tuesday, May 19, 2009

Surgery Tomorrow...

Kendall's surgery is scheduled for 7:00 am tomorrow. Yep, that means I have to wake up around 4:30 to be at the hospital by 5:30. I am definitely not a morning person, so ugh.

Anyway, please say a prayer for our precious Kendall. She is also having her pressures checked, an examination under anesthesia, and the ABR to check her hearing. We will hear the results from the audiologist ('d ya like that pun?) immediately following the test. We also suspect her Ophthalmologist will visit with us about his findings after her surgery.

It's been a crazy day, and I have more to share... but with a very busy evening ahead, I will need to update later.

Please remember to say a prayer for Kendall! (right now would be a good time!!)

Friday, May 15, 2009

New Computer!

OK... So, I got a new desktop computer...and can I just is life changing. My screen is so much bigger than my laptop! I can now navigate Facebook way faster than before...and Blogger...oh. my. gosh. You people are so much cuter than you were before! I'm so excited!
Kendall drank out of a straw today. Speech brought a new Nuby cup that has a straw that actually changes its flow based on the child's sucking ability. Our Speech Therapist thought it would take her about a month to catch on...nope. She did it the second try. She was biting it a little, but she definitely sucked. So it begins...we underestimate Kendall, and she proves us wrong!
She's been a little tight. Her feet are pointing a lot and her heels have a lot of wrinkles. I have been stretching them a lot, but I'm concerned. If anybody has any suggestions to loosen her feet, please share. The PT's haven't really mentioned it.
Hope you all have a great SEIZURE FREE weekend!!!


We took Kamden to the Dr. seems he may have a hernia. Yes, a hernia. We went to the Urologist for another issue, and during his examination Kamden explained that below his belly button and above his hip, he has this "little golf ball that shows up under the skin." Um, yeah. First time I heard this. So, once again, I find myself needing an apartment near Cook Children's Hospital. They've scheduled a bunch of tests and we are going to monitor him closely. He's not in any pain or anything...right now. Keep him in your prayers!

So, Kendall sort of slept through the night last night and the night before. I don't know if it is the medication or what, but I'll take it. She also didn't have any seizures during dinner last night or before bed. This morning was another story, but they do seem to be decreasing. We increase the Vigabatrin again tomorrow. Hopefully we will see improvement.

This week with Kendall has really encouraged me. Just spending more time with her during the day, I notice a lot of little improvements. She seems to be taking in more of her surroundings, even if it isn't visually, she is aware. She really enjoys her swing outside too. Here's a picture of her in her swing!

She likes to listen to the big kids swimming. I can't wait for the water to get warmer, so she can participate! Thanks Aunt Kristin for the awesome covered swing. It will make this summer way more enjoyable for all of us :) (and thanks for the very generous gift card to sunglass hut, and Avante...that will also make the summer more enjoyable for me!)

Wednesday, May 13, 2009

Stay at Home Mom!

I am enjoying being a stay at home mom this week! Kendall has been a joy. Yesterday our day was full...we enjoyed being outside a lot. The day started with the nutritionist. Kendall has gained a pound and a half back. Then we enjoyed meeting Caleigh and Holly for coffee. Then we hob nobbed at the playground with the other PTA moms (ha!) while waiting for Kamden to get out of school. After that, Kam had a friend over to swim and then we headed off to Karate. Kendall was such a trooper the whole day. She crashed last night and almost slept the whole night.
This morning, seizures were terrible during therapy. When we went to the nursing home to see my grandmother (who, by the way, thought I was my mom the whole time...saying how great I looked for being so old) her seizures were unbearable. I have a call in to the Neuro to find out if there's anything we can do. I'm thinking maybe her recent weight gain could be the cause. I don't know...
We also have an ABR? I think. scheduled on Wednesday after her eye surgery. They are going to check Kendall's hearing. Looking at her MRI, one would think she would have hearing issues, but she seems to hear fine?! Who knows...since she will already be sedated for her eye surgery, they are going to meet us in recovery to perform the test. I haven't wanted to address this subject because hearing has always been one of Kendall's strengths as far as I'm concerned. So, we'll see.
Miss Kendall is waking up now. I'm headed to her room to get her stretches and exercises in (see, Nonna...I'm making her work!)
Hope everyone is enjoying the warm weather! So glad it finally stopped raining...

Sunday, May 10, 2009

Happy Mothers Day!

Hope everyone had a great Mother's Day. I certainly did. My loving husband bought me flowers and let me take a nap. My mom left for her vacation this morning, so I wasn't able to spend the day with her. But I talked with her this morning. I hope she has a peaceful, relaxing, much deserved break.

Nonny and Poppy kept Kendall and Kamden last night at their house, so Justin and I could attend a barbecue with some new friends. We had a blast. I didn't think I would be out til after midnight two days in a row...but I was! That's probably it for me for a while! My liver hurts. this is totally not Kendall related, but have any of you read the book "Skinny Bi*ch" Its a diet book (obviously) and I started it thinking, hmmmm, this all makes total sense. This lady really knows what she's talking about. Then as I read on, I realized that she may be a vegetarian, then as I read further I realized yes, she definitely is...a Vegan. Then I continued through the chapter talking about cruelty to animals, etc... Definitely made me think. I might be able to do this...(although today I devoured the chicken Justin grilled) So, I am going to try now to gradually change our eating habits. We could definitely use more fresh fruits and vegetables around here. Also after reading about all the horrible things in our processed foods, I was actually a bit scared for my kids' health. Kendall certainly doesn't need any more problems, and Kamden has a few issues too. I'm not planning on quiting cold turkey (no pun intended!) but Justin and I agreed we should probably start making healthier (organic) choices at the grocery store. Oh, and Splenda is its own food group as far as I'm concerned, so there is absolutely NO WAY I will give that up. But, I could probably start drinking decaffeinated tea at Starbucks instead of lattes. Check back with me in a week...we'll see how that goes. I personally like "dead carcasses"A LOT. Steak in particular. And there is no way Justin would ever give up meat completely. Can I be a half -way Vegan? Probably not.

Anyway, this week is packed full with appointments and therapies. And I will be on my own. Wish me luck!

Saturday, May 9, 2009

Night Out!

My girlfriends and I got together last night in celebration of my 2nd 30th...I say that because last year on my 30th, I had a 2 week old and was recovering from a c-section! Who knows, maybe I will continue, as my friend Jill says, to celebrate my "annual 30th" going forward!
We had a great time. When we all get together we are a little crazy, and last night was no exception! However; I cannot hang like I used to...Don't get me wrong, I can dance "for inspiration" with the best of them, but when I'm done, I'm done! So my sister and I cut out around midnight and chowed down on some Wendy's just like the good old days! It was also great to see my good friend Jillian (jules as I call her) and reminisce about our pre-baby days! My how kids change you! (even healthy ones!) Thanks to all of you for making my 2nd 30th memorable! (oh and by the way, I now have some awesome video I am hanging on to for blackmail)
On a Kendall note, her seizures have been really awful. Her Vigabatrin came in a few days ago, so she has been on it for two days now. We are no where near her max dose yet, so we will be patient.
Kendall's PT also just started her Kinesio Taping. We have two strips down her back that will stay on for 4 days. We hope it will help her remember what it feels like to hold her back in proper form..... I'm sure I didn't explain that properly, but you can Google it if you're really interested in what it does!
Have a great day!

Wednesday, May 6, 2009

Daddy's Home!

Justin returned from his trip to a happy Kendall. She melts our hearts the way she responds to us when we come home. It can totally turn a stressful day around. This is a video of Justin greeting Kendall and at the end Kendall smothers him with kisses....something she has started to do a lot.

***DISCLAIMER*** Justin doesn't normally talk like this, and "whicapacachiu" is a sound one of her toys makes that makes her laugh. Its become a part of our daily vocabulary around here! Oh, and Justin has no idea I'm posting this. But he never looks at the blog anyway! So I should be safe!

My Daddy returned home safely today too! And I am so glad. We ALL missed him!

Seizures are still bad. They have also changed a bit. Instead of just jerking her left arm forward, she is now throwing both hands up in the air, much like the startle she used to do in her first few months of life. Again, they don't last long, but they stress me out. Maybe it's the weather?

Tuesday, May 5, 2009

All Better

Justin's been out of town on business, so I was able to dress Kendall in her longhorn t-shirt. Her Sooner Daddy...not a big fan.

We went to the Dr. this morning and had her ear checked out. She still has a few days of antibiotics, but her ear looked healthy. She received her immunizations and I realized we've come a long way. (both of us) I remember when Kamden was little I couldn't bear to watch the needles go into his legs. Now, it doesn't even phase me. Kendall was a brave little girl too, with only a little yelp.
Seizures were really rough in the middle of the night last night. And this morning, I lost count. They were happening one right after the other. I would have been worried, but she snaps back immediately, and never loses consciousness. They are a pretty violent jerk (like if she were in her high chair, she'd hit her head on the tray) followed by her eyes dancing for a few seconds. I thought they were getting better, but apparently not. The pharmacy in Canada called yesterday to say they were sending the Vigabatrin. We should expect it in 5 days. Wish it were sooner.
In the mean time, we have a very quiet week with therapy. Her PT is out of town and we don't have Speech, OT, or Vision again until next week. Good thing, cause work for me is out of control busy. I'm very much looking forward to my week of vacation at home with Kendall next week (Nonna and Grandad will be on vacation, so since I won't have child care, I happily took some vacation days!)

Monday, May 4, 2009

So Hilarious!

So, I had to post this because it made me laugh out loud. I don't know these kids, but I wish I did. My sister thinks that about 1 minute 5o seconds through...the girl in the background performs my signature dance move. (Justin...I knew this would make you laugh!)

I'll update more about Kendall stuff later!!!

Sunday, May 3, 2009

Weight Gain!

Well, I am proud to say Miss Kendall is gaining weight. Her appetite has really come full circle. She loves the Pediasure and has been eating everything without any fuss. Kamden and I have been "puree junkies" putting anything and everything we can think of into the food processor to give Kendall a variety. I wouldn't be surprised if they take her off the Pediasure since she is gaining weight. Guess then she goes straight to whole milk. Yep, that's right. She's officially weaned. She's only nursing at night. I feel better now too. It's been nice to go head to the gym or store without thinking...hmmm, will Kendall need to eat first!? I feel like I'm getting my independence back....somewhat!

Sad to grandfather passed away on Friday. Just a few days short of his 95th birthday. He lives in DC, and my dad flew up on Friday morning, but got there too late. His memorial service is on Tuesday. I won't be able to go to the service, but my dad, Granny, and aunts are in my thoughts this week. I miss my dad so much. Its been a reality check for sure having him out of town! My sister and I have been blessed to have our Grandparents as long as we have. My other grandpa (who I was REALLY close to) passed last summer. So I'm fresh out of grandpas now:(

Kam and I made a trip to the bookstore yesterday and loaded up on books. We're reading Twilight together right now. (don't judge me! Kamden is a very mature 8 year old...and I need to see what all the fuss is about) He got some Magic Tree House books, and I was successful in getting a book that didn't have anything to do with Special Needs, or Therapy or Self Help! Actually, I'm embarrassed to say I bought a book called Bitter is the New Black. Totally mindless read! But I've been enjoying it!

Hope you all had a peaceful and relaxing weekend like we did! Have a great week!