Monday, December 28, 2009

Ugh.

So I kind of went back and forth on posting this. But I decided as long as I leave names out it should be OK!

Justin received a gift card to a chain of restaurants. We decided to venture out with Kendall to eat at one of them on Saturday evening. We were going a bit stir crazy and felt like a laid back dinner out that included Kendall would be nice. We lugged her wheelchair out of the car to go into the first one. The wait was extremely long, so we decided to go to another one not far away. (Both of which are in our "small" town. We like to keep business locally, but tend to eat at the "mom and pop" restaurants mostly instead of the chains. They know us, love us, and always ask about our family!)

Anyway, we arrived at our second choice. We were pleased to find that there wasn't a wait. I asked for a table for "two and a wheelchair" because I wanted to make sure there would be plenty of room for Kendall in her chair to pull up to the table and be included in our dinner (so what if she wasn't actually eating...she usually likes being out and about and taking in the scenes.)

It started pretty rocky, Kendall was arching and stiffening and beginning to fuss. We decided to order our meal to go because it looked like she wasn't going to make it.

Anyway...there was a family seated behind us, so Kendall had to be in the isle. Long story short...the waitress behind us told me we couldn't have our stroller in the isle. I ignored her. I was more focused on getting our stuff together and dodging the stares we received for a yelping baby. Justin agreed to stay behind, wait for our food, pay, and meet us in the car. Kendall likes to be on the go, and when she's in that mood, especially in a public restaurant, we oblige her.

So, no big deal. We were leaving. I was calm. The first waitress was a b. But I figured she was in the weeds and frustrated. I let it go. THEN, on our way out a tray was blocking us fitting Kendall through, so we waited patiently when ANOTHER waitress told me we weren't allowed strollers inside. I looked at her shocked, and said, "trust me, if we didn't need this special chair, we wouldn't be using it."

I headed for the door, wanting to duck out and run for the hills, but I reminded myself I have a new job. A job I didn't exactly sign up for, and don't get paid for, but a job nonetheless. So I told the hostess the table they sat us at wasn't wheelchair accessible. We were leaving, but not for that reason, just in the future, she and the manager might like to know and have another plan. She looked at me blankly. Then the hostess holding the door for us on our way out gave me a big attitude.

Honestly, I left feeling really bad. I was not at all embarrassed by Kendall. And goodness knows Justin and I have had our fair share of eating out with our jobs so it wasn't that either. I just left feeling for the first time in 20 months sad, disappointed, and angry. For the first time in Kendall's life, I felt that her special needs were inconveniencing people. All they wanted to do was get rid of us and ignore the situation. And that pisses me off.

I e-mailed the manager yesterday. He has yet to respond. I'm boycotting that stupid restaurant and their baby back ribs now.

Oh, and when we got home, we found our order was wrong. That pissed me off even more. I probably would have drown myself in a bottle of wine and lost myself in my silly Vampire book if it weren't for my husband. He told me "Look on the bright side of things. At least you have your next blog entry thought out. This shit practically writes itself."

And so it does.

Sunday, December 27, 2009

Christmas Pictures!






These first two pictures pretty much sum up our last few days! Kendall has been in a super great mood, or a super bad one! Poor baby woke up Christmas morning....yes, Christmas morning having seizures. Kamden waited so patiently for us to get her straightened out. Fortunately they stopped very quickly and we were able to keep them at bay for the whole day.


We enjoyed lots of time with our family, and as usual, Kamden and Kendall were showered with gifts. Completely spoiled yet again by Aunt Kristin and Uncle John!





We had a white Christmas this year. Some were calling it a blizzard... (ha!)





Kam had a great time playing in the snow with Chloe and throwing snow balls at everyone! (so did Justin)


Kam got a Pocket Rocket...he was thrilled. Not only do I have a huge fear of guns and completely disapprove of anything that remotely looks like one for Kamden (my efforts are ignored though) I feel the same way about motorcycles...




However; he will be fully decked out in helmets and pads, and only riding it under complete supervision across the street at the school track or parking loop. Grandad and Uncle John gave him a quick tutorial, but it was too wet and cold the next day to ride it.





Kendall's favorite gift was her Ekorre Swing from Ikea. Aunt Kristin surprised her with it! She loves it. Our ceilings are way too high to hang it in the living room where she can enjoy it more, but we are working on a solution. (OK, Justin is!)







The greatest gift Justin received was Kendall's repeated use of the word Daa Daa. She started on Tuesday night and has said it more and more frequently and with such purpose. This makes my heart happy too!







One of my greatest gifts came on Tuesday evening when I took Cooper to the vet, completely ready to hear his death sentence. He's been so neglected: not taking his seizure meds regularly, not being groomed regularly to the point he had matted hair, and I completely ignored the last warning about the two tumors he had growing on his leg and chest. My Christmas miracle came when the vet told me his heart sounded perfect! We could discontinue his meds, and he looked great! He's on a diet (apparently 49 pounds for a Cocker Spaniel is unacceptable! who knew!) He's on antibiotics for skin issues but expected to make a full recovery! His tumors are just fatty tumors that don't cause any harm. Ha! Justin said he was going on Hospice...he was wrong!








We had an amazing Christmas dinner with Nonny, Poppy, Grandad, Nonna, Uncle Josh, and Val and her family! Kendall and Kamden received more gifts there! (big thanks to Tara and Chloe for the suggestions on books...Nonnny bought these two books for Kendall and they brought tears of hope to all of our eyes!)






So, it was a very merry, white Christmas in Ft. Worth this year! Hope you all had one too!

Monday, December 21, 2009

New Stander...

I thought I'd post a picture of our new stander. We were thrilled to get it, and Kendall is getting stronger by the minute in it. The only problem is her constant need to be moving while in it! In order to get in an hour a day, we have to push her around the house a lot. But hey, I guess you gotta do what ya gotta do...


Oh, and Daddy's do not know how BabyLegs should be worn:

Saturday, December 19, 2009

School's Out...

And I celebrated with Kamden and Kendall on Friday as we made the 30 minute drive to pick up Kendall's diluted insulin from the compounding pharmacy...(there's a long story behind why this is the only pharmacy I go to... and why we still find ourselves paying co-pays each month that cost more than a nice car payment!)

Anyway, we had a nice afternoon with ice-cream and lots of talking in the car. Kam made the suggestion to stop by the Ft. Worth Botanic Gardens on the way home. This is a place near and dear to our hearts. Kamden and I spent many days having picnics there when I was a teacher and off during the summer. Justin and I got engaged in the rose garden . Our wedding was also there. So, I enjoyed the walk down memory lane yesterday. That place always makes me smile!

I didn't get any really good pictures of Kendall, which was a bit odd since yesterday was a really good day for her. But we had a great time together!

Justin is off work now for a while, and we are excited to spend time with our family and friends in the upcoming days!












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Wednesday, December 16, 2009

"The World is a Beautiful Place"


I'm reading This Lovely Life by Vicki Forman for the first time this week.
So far it has really made me evaluate where Kendall is, and where I (honestly) am in this whole process of raising a child with special needs.
I think my mood changes still...daily...depending on how each day goes for Kendall. God knows we have our good days, really good days, and our tough ones. I am really trying to live in the now with her.
If there is one thing I've learned from Kendall, it is to just be still. As the world rushes by, and Christmas cards of kids Kendall's age standing, running, etc...fill up my refrigerator door, I look at her, that very special smile, and I'm reminded to love her for who she is. Right now.
I believe she is changing a lot of lives that way.
Here's an excerpt from the book that really touched me.
There was a time when I said, "The day I get to hold him will be my big payoff." And I believed it and meant it. That day has come and gone- like the day he came off the vent, the day he started on breast milk, the day I heard him cry-and I'm putting new goals out there as fast as the old ones are met. I've relished all these moments, but they haven't made me complete. The day he starts talking? Walking? Can write his name? Read? When Josie {her oldest daughter} was born, I enjoyed holding her and loved her infancy and was in a hurry all the while for the days she could accomplish the things I thought would make me happy: hold a toy, crawl, sit up, take steps, say a word. It's so difficult to love another person and yourself for who they are and not what they do or who they could be. To stay in this moment and know it in all its pleasures and its pain. The world is a beautiful place. How often do we say this aloud?

Tuesday, December 15, 2009

My Star!



I just have to say I was a proud Mama last night!!


My precious baby boy gave the best performance at his 3rd grade program. He nailed every line. His solos made me smile. He did a great job. And I couldn't have been more proud. A good time was had by all...Kendall included! (we did miss my mom...she was too sick, and too at risk for infection to go...sniff sniff....but we have good video and loads of pictures to share with her...still...not the same without her.)


This is a crazy week with Christmas parties at school and lots of Dr.'s appointments. Kendall's Neurology appointment went well this morning. I do have a few things to share, but will wait for a later post...


Here are a few snapshots of our wonderful night...



Our Family:
Kendall and her Poppy

Aunt Liz, Aunt Kristin, Kamden, Grandad:


Nonny and Kendall:


One of Kam's solos:

video













Monday, December 14, 2009

Wanted to share!





































A cool website I spent a good portion of the day fooling around with! http://www.photofunia.com/


Kam's program is tonight....so I will post pics and videos tomorrow...
















Saturday, December 12, 2009

A Couple Pictures and a Video



Here it is...Kendall's new trick!




The video really doesn't do it justice, but the fact that she has made the connection and knows what she's trying to do makes my heart really happy.




video





She also gives kisses when asked too!!





Here she is with her awesome OT bearing weight on her hands while on her knees. Kendall is usually very resistant to this, but has made so much progress. I am so proud.






And here she is in her old stander (we get her new one on Tuesday!!!) She's getting so strong thanks to our wonderful nurse and her diligence getting her in it for extended periods of time and making it enjoyable for Kendall.


Doesn't she look so big!?

Friday, December 11, 2009

More Appointments


We have a lot of Dr. appointments. Each time we enter a specialist's office, I secretly have a knot in my tummy.
I have the drive down to a science. I used to get confused in the parking garage. Now I know all the secrets and shortcuts. We've been at this a while now. I know which handicap doors operate properly, and which ones are always broken. I'm on a first name basis with most of the front desk people. We know the regular volunteers by name too.
But no matter what, that familiar sick feeling returns in my belly each time we open the door. I guess it's a fear of another diagnosis, or something they missed earlier.
Whatever it is, I want it to leave forever. I hate being a worrier, but I can't make it go away.
The Geneticist appointment went well. No new news. That's good. The Endocrine appointment went well too. All appointments are now spacing out. That's good too. So, why is that feeling still in my belly???
Kendall is doing great. Her vision has improved a ton. She has a new "trick" that gives me a tremendous amount of hope for her. (I will post a video as soon as I am successful capturing it!)
She's smart. Yes, smart. She knows what she wants and she knows how to get it. She knows her routine and anticipates the next step. If you waiver from that, she's resistant. She listens. And now talks back. She's turning into a little girl from a baby. I couldn't be happier with her cognitive progress. Or her sleep pattern now.
But I have this yucky, nagging, when-is-the-ball going to drop feeling in my tummy. That I hate. And I want it to go away.

Wednesday, December 9, 2009

KIDZ post

Today Kendall's full story (which I haven't read over or thought about in a long time...) is posted over at Kidz:



Thanks for your support with the chair! I have decided to keep it of course...Even if it is close enough to the ground that Chloe (our lab) can walk over and pull Kendall's socks right off her feet. Yes, she really did that.

We're off to the Geneticist. My favorite place to go. (sarcasm)

Have a blessed day.

Tuesday, December 8, 2009

New Chair...?



Ok...so everybody needs a comfy chair, right? (all physical therapists...look away!)


For the past 18 months Kendall has reclined in her boppy papasan chair. I've taken a million pictures of her in it. It has lasted way longer than I ever expected. We usually set her there when we need to get something done in the kitchen, or administer meds/check blood sugars. But with her recent weight gain, she's bottoming out.


I've been searching for a replacement. Today at a local discount store, there it was...the only one of its kind...at the end of the isle...all lights shining on it and telling me to purchase it.


So I did.


But now I'm not sure. She kinda likes it, but is a little skeptical. So I'm trying to decide if I want to keep it. What do you think? It doesn't give any support whatsoever, but I figured it would serve the same purpose as the boppy. A comfy recliner she can hang out in when she's just relaxing. And I think it's really cute!!!


Oh, and it comes with a cup holder (so what if she doesn't need one!) And the bottom of the cup holder reminds the owner "this is not an ashtray" Um, yeah. No kidding?


So its a test run right now. Think we should keep it? I already ordered a bean bag for Christmas... Help me justify my buyer's remorse.


Monday, December 7, 2009

Swinging Along...

Thanks for every one's comments. I did get over my temporary upset about Holland...for now.

I wanted to share the video of Kendall on her Wingbo swing. She used to love it, then hated it. I battle with her every day on getting in quality tummy time, and am exhausted daily with her constant need to bounce and move. So, we made the swing higher so she wouldn't freak out about her feet touching the ground. Its just a swing for the time being. And she loves it.

She's been doing really well these past few days. She is so social and loves listening to everyone. Her little personality is showing more and more. I absolutely love that. She has also started moving around a lot more. She wiggles her way down her bath chair, and almost out of her pink lounge chair. No rolling, but hey, I 'll take what I can get!

Today when her vision and orientation and mobility teachers were here, she gazed from one object to the other on a black background. I was very impressed. She was evening turning her head to the side she doesn't like to. This is big progress. She has vision. Now we have to teach her to use it.

This week's off to a good start!

video

Saturday, December 5, 2009

Holland

I love this time of year. I love family get togethers and hanging out around the house when its cold outside. Wearing pj's and slippers all day makes me happy. I don't love getting sick. I managed to make it through the hospital stays and frequent Dr. office visits without catching anything. Until now!

I have a nasty cold. My poor nose is red and I can't stop coughing. Ugh. Thankfully nobody in my house has it. I pray it stays that way.

This time of year I become a germ-a-phobe anyway. I took a page out of Holly's book and placed a sign on my door reminding everyone to wash their hands as soon as they enter. Kendall is in lock down. We're refraining from taking her out into the cold or around any public places. She really can't get sick. Really.

I managed to get a bit of Christmas shopping completed this morning. Even though I felt like crap, I was in pretty good spirits. Until it hit me again like a ton of bricks...we're still adjusting to life in Holland! Kids Kendall's age in the store now are not in strollers or infant carriers anymore. They are running up and down the isles. They are reaching for candy in the checkout lines. They sing Christmas carols. At the gym this morning, Kamden was playing with a little girl Kendall's age, and then asked me why Kendall couldn't go to the Kids club with him. (I thought he understood...but apparently not completely) So, its just been a little depressing. I'm going to blame that on my cold. I'm going to publish these precious pictures of my little girl, count my blessings, take a shower, and have a new attitude in about 30 minutes I'm sure. But for now, I don't like Holland. And am really jealous of those in Italy. Ugh.


Wednesday, December 2, 2009

Seizure Video

This morning it started to snow. Kendall was in her cozy pajamas, and our morning was going as planned. She woke up early and we were enjoying a fire and walking around the house looking out the windows at the big snow flakes. Then, like always, it came to a screeching halt with seizures. I immediately gave her Klonnopin and they started to fade, but the whole cluster lasted 45 minutes. Kendall fell asleep in the middle of it all. She rarely has seizures (that I know of) while she's sleeping. It may be time for an increase in Keppra since she's starting to gain more weight (even though I never really was convinced it worked) And it may be time for another VEEG since they have changed their look. I have a call in to our Neurologist's nurse to wage war on these damn seizures again.

I have to remind myself that since starting the Ketogenic Diet things have gotten better. Much better. But her seizures are starting to increase again and I can't let that happen. I won't let that happen.

We used to see these spasms steadily throughout the entire day. Now they are just every 15-30 seconds for around an hour every 3 or 4 days. I need to remember that this is an improvement!

I'm posting a video of the nasty things after she fell asleep. They tend to get worse and more forceful before they get better, but they did finally stop. This is the tail end of the 45 minutes. Her respiratory rate was 24 and heart rate was 125 through it all, so I didn't worry too much.

Oh, and oddly enough, her ketones and blood sugars were fine right before they hit. Ketones at 6.1 and BS was 183. Ugh. I hate seizures and the damage they do to my baby's already broken brain.

****I just watched the video and it seems she had them more than every 15 seconds....as this video was taken when they had lightened up. So, you can see the spasms at 23, 36, 50, 118, and 133.

video