Easter Egg Hunt

Justin, Kamden, Kendall, and I went to the annual Beeping Easter Egg Hunt for Visually Impaired kids in Ft. Worth on Saturday. It was a very sunny day, but the wind was horrible. This was also Kendall and Caleigh's (and Justin and Eric and me and Holly's) one year anniversary of being friends.

Kamden had a blast. He made some friends of his own, and as usual, was very competitive in hunting for eggs. They had a bounce house and lots of activities for the kids. Kendall did better this year than last as far as interacting. She seemed to like the Easter Bunny. I think the noise from the bounce house and the incredibly heavy winds may have been a little much for her, but she did OK.

Justin was a great daddy and took her out of her chair to take her around to the activities. Kamden was right there to hold her hand and make sure she was included in the fun. It was a nice morning visiting with old friends and making new ones.

We feel blessed to have opportunities like this to meet new parents and connect with other families who "get it."

Thankfully my mom's spinal tap did not show meningitis, but she still feels wretched and isn't able to get any good rest. Thanks for all your well wishes.

I'm up early this morning making my to-do list. This week I will be meeting new therapists and making some tough decisions about Kendall's weekly physical therapy. It stresses me out, but I feel confident that it will guarantee the best outcome for Kendall. We are going on our third week without Physical Therapy, and I'm ready to have some help with that. Having sessions twice a week gives Kendall a little extra, and gives me new ideas of things to do with her each day. But switching things around results in our routine being thrown for a little while. Ugh.

Hope you all have a nice week.

More Stress!

This week has been crazy. Kendall hasn't been sleeping. I've started a diet. We're re-doing our backyard. We're switching up our therapists. And the combination of all of those things has made me crazy.

On top of that, Kendall's granulation tissue around her button was out of control. I took her into the Dr. yesterday and he burned it off with silver nitrate and sent the silver nitrate home with me to do if it returns (yeah, like I can really do that.)

Also this week my mom had some really bad pains in her joints. The treatments she's on is pretty rough on her. She's losing her hair, and looks really peaked most days. The side effects are suppose to cause "flu-like symptoms" but it has gotten really bad. So, Wednesday my dad took her into the ER and they did a CT scan and then an MRI. As far as they can tell everything looked OK, so she was discharged. Well things didn't really get any better, and the meds have made her really incoherent. So, now she's back in the hospital today having an spinal tap done to rule out spinal meningitis. We're eagerly awaiting the results as I type this.

Some days I truly think I might lose my mind...other days I wake up and think I can do this. I guess you just take it one minute at a time and count your blessings. But right now, I'm pretty much over everything...and am leaning more towards losing my mind! I woke up this morning after a horrible night with Kendall and told Justin I needed to take a sick day. It quickly occurred to me that wasn't an option. (Justin did offer to go in late so I could sleep, but I figured I'd better put my big girl panties on and deal)

On the bright side, we have a very fun weekend planned...and Kendall and Kamden are doing really well :)

Words.

Thanks for all your comments on the "Mama" post. I feel the need to tell you that video really didn't do her justice! She will repeat Mama when asked almost every time now.

And "dog" (when they bark or shake)

And "egg"

And she's back to saying "Dada"

We've also recently heard the B sound.

I'm thrilled. It is so fun to wake up in the morning and witness Kendall's speech evolving so quickly.

It seems when we can keep her healthy for an extended period of time, she makes huge strides in development. I feel so encouraged by this.

And, I have to tell you this story...I was with a few of my girlfriends Saturday night and of course, bragging about Kendall. I pulled out my phone (Blackberry) to show them the video. My one friend tried to pull it up, but it was taking too long to load, so I just kept "clicking" on video over and over on my phone until it said it was loaded. Then a video started playing.

Nothing could have prepared me for what came next. (the look on my friends' faces was totally priceless!!) The video playing was not Kendall's video at all. It was an "adult video." The first words out of my friend Sara's mouth was "is that Justin?" And I froze. Completely mortified. What the heck?! Immediately I called Justin and ordered him to my computer to make sure it wasn't on the blog that way...like if it was hacked into or something. Thankfully it was fine. And while we all had a seriously good laugh (the kind where your tummy hurts the next day) I'm still baffled by what happened on my phone.

So, if any of you had the same experience trying to view that video from your phone....and I really hope you didn't....please know that was not what I "captured!" Don't want to lose my Blogger privileges!!!

I captured it!

Allergies?

On Monday afternoon Kendall started with congestion again. I ended up taking her into the Dr. just to be sure her lungs were clear. Thankfully, they were. The pediatrician's appointment ended up taking waaaay longer than I thought it would. But we left with a new prescription for a nasal spray (nasacort). I've heard it's pretty uncommon for Dr.'s to say a child has allergies at such a young age. But our Dr. is a little out there sometimes. So I kinda rolled my eyes as we were leaving, planning to continue the breathing treatments. I humored him and filled the Rx and started Kendall on it Wednesday. It actually worked, and now she's a ton better. Could it be so easy? Guess we wait and see.

She's been sleeping better, but it takes her such a long time to go to sleep. I guess she's a night owl. It kills me because she is so active everyday. She's been standing in her stander for at least an hour each day, sometimes twice a day, eating by mouth three times a day, and getting some sort of therapy for an hour a day, and some days swinging for 20 minutes 3 times a day. I'm so surprised she's not getting more tired around 8 or so. Instead, she sings and goofs around fighting sleep each night until midnight, sometimes later. Then she's up by 8 for insulin and only takes an hour nap. I wish she'd go to bed earlier!!! But I am thankful she's been going back to sleep after I re-position her (every 2 hours!) So I'll take what sleep I can get.

We're looking forward to an uneventful, lazy weekend. Hope you all enjoy yours too.

Music Therapy

We are starting music therapy with Kendall on Thursday. Our plan is to do a session once a week and hopefully share a session with Caleigh and Holly once a month (assuming we can figure out our schedules!)

I've been considering music therapy for some time now. I've been looking into music classes for about a year, but something always came up. I was never too keen on the idea of a group class with other kids Kendall's age. Because of germs (and the heart-break involved attending activities among kids her age) it never worked out.

When Holly suggested we meet a music therapist who would come to our homes to meet with the girls, I decided that was the way to go.

Last week we did meet the therapist. Her resume is impressive, and upon our first meeting, I could definitely tell she has a heart for the kids. She seems very passionate and wasn't scared off by Kendall and Caleigh and all their issues :)

So this Thursday she will be setting goals and objectives during her first evaluation with Kendall. I'm very excited. Kendall enjoys all her therapies for the most part, but I'm certain this will be one of her favorites!

Music is a big part of my life...and Kamden's too. I know this will be something the whole family will enjoy. Because it will be private pay, we'll have to make a few sacrifices to make it happen...but we're ready to do that. (I won't get on my soap box and gripe about insurance not covering it...we want her to have it and feel confident it will help her, so we're taking matters into our own hands)

Dare I Say It?

Kendall hasn't had a seizure in 6 weeks. This is the longest we've ever gone. Is it possible those nasty monsters are gone for good?

Oh, and she's interested in eating again. Not sure if it's the z-vibe exercises, and new oral stim exercises I've been neurotic about completing every day...or the love of mayo...whatever it is, I'm thrilled. She gobbled up her old favorite beef and broccoli super fast yesterday and today. Its not a pureed texture either. Its pretty chunky and she has to chew quite a bit. Now if we could just get her drinking again...

Anyway, so that's all good news! I pray the rest of the week continues this way!!

What A Week.

I have been a horrible blogger. I haven't kept up with my blog AT ALL. Nor have I kept up with any other blogs this week. It has definitely been one of those weeks.

For one thing, I have been completely emotionally spent with Corey's passing. I never imagined it would have affected me this way. I cried more tears this week than I have in my entire life. A healthy three year old boy taken too soon from his loving family is incredibly hard to comprehend. For me personally, it hit home in numerous ways. For one thing...I have a healthy son of my own...a child who completely changed my life unexpectedly at a very young age. The thought of something so sudden and tragic happening to him chokes me up. The things I have taken for granted with him, I never will again. So, watching Corey's mom Courtney make so many impossible decisions this week was life altering to say the least. Of course, it hit home too with our precious baby Kendall. The man conducting the service on Thursday night is the Chaplain in the ICU at Cooks. This man literally held my hand during some of the worst hours of my life. The reminder of our horrible week, a week when Kendall was unconscious and facing the very real possibility that she wouldn't make it, all came flooding back to me. No mother should have to face losing a child. But with Kendall (and I'm sure many mothers of medically fragile children feel the same way) Justin and I actually hope to outlive her. Our minds have been somewhat prepared for that. Although we don't know what the future holds for Kendall, we do know her complicated issues aren't going away. The thought of anyone other than us being responsible for her care is a difficult one. I think I had been hiding those feelings up until this week. This week I've been thinking a lot about that. It has drained me physically and emotionally.

I have to say that Corey's family has handled things with such grace. I am in awe of the way this family pulled together. Obviously this little boy has changed many lives.

Justin has been out of town and Kendall hasn't been sleeping at all. Fortunately today Nonny and Poppy offered to keep Kendall. Kamden and I dropped her off late this morning and have been spending the day together. We ran a few errands, then saw Alice and Wonderland and went for sushi. Now we plan to cuddle in bed and catch up on all our tivo'd reality tv. Then.....sleep!!! I don't plan on doing laundry or housework until late tomorrow. Sleeping, reading, watching movies, and relaxing is in my near future. Thank goodness!!! (and Nonny and Poppy.)

The weather has been beautiful here, so hopefully early tomorrow Kam and I can take Cooper to the park for a run. Then, by the time Justin gets back into town and picks Kendall up, I will be back to my human form. (and not the crazy, emotional, stress-monster I've been all week :))

I promise to blog this week about the exciting Music Therapist and new Speech Center that will join our weekly agenda with Kendall. And, the latest Kendall accomplishments!! Goodnight!!

Corey

Tonight Corey went to heaven to be with his great grandfather.

In heaven there are no seizures. No fevers. No undiagnosed illnesses. He is playing in the park everyday. He's playing soccer too. And smiling. And chasing his kitty cats and spanking his puppy dog for eating furniture. He's at peace. And totally healed.

I spent the evening with his dear family. They are handling things remarkably well after a very hard day. Please continue to keep his family in your prayers. His strong mommy, gamma, mimi, and handsome uncles Mason and Bailey are hurting right now. I pray they will find comfort very soon.

Corey's smile and zest for life will never be forgotten. He touched everyone who knew him. And definitely taught me to hold my babies closer and cherish every moment.

Seizures suck.

Guess What Kendall Said Today...

Mama! Yep. And I have wittnesses.... Kamden and Angie were there to hear it. Angie (our nurse/ "special needs baby whisperer") was feeding her fudge and she was going mmmmm, so I came over and said "mama?" and kendall sat there silently moving her lips and trying hard to say it. Then "ma" came out...then "mam" then......"MAMA!!" So, I'm going to take it. She said mama. If she did it once she can do it again. I know it!

Good News

My dad's biopsy came back fine. No Cancer. Thank God. He visited with the neurologist last week too, who said surgery is not in his future yet either. Just wanted to share the good news. Definitely put a smile back on my face!

Kendall didn't sleep last night at all. I tried to get in a nap a little while ago, but since I drank so much coffee, I just laid there twitching and thinking of all the things I have to do. I'm sure I will crash eventually...

Kendall is doing better. She just seems like she has a cold now. Hopefully tonight will bring rest and tomorrow will be even better.

By the way, for those of you concerned...my blog identity crisis is over for now! I guess changing my blog background is the equivalent to me wanting to rearrange furniture in my house. Except much easier on my back. I was feeling unsettled do to the lack of sleep, therefore I couldn't commit to a background for very long. I don't know. I told you I'm a bit neurotic. But I'm over it now :)

Hope everyone is has a great week.

My Husband

I want to post this, not because I want to brag, but because I want Justin to know how much I love him, and could NEVER do this without him.

It dawned on me this morning (no pun intended) when I awoke at 4:30 to check Kendall's sugars. My amazing 6 foot 5 husband was sleeping soundly on approximately 6 inches of sleep space on the side of our bed. Kendall slept in our bed last night because she couldn't get comfortable in her crib because she had to be propped up. Chloe the 90 lb black lab was at the bottom of the bed making herself comfortable under Justin's legs. And Kendall had inched herself off the pillow propping her up all the way over to Justin's cheek. Snoring right in his face. He didn't even flinch. I'm sure it was a miserable night's sleep, but he didn't complain once! I must have bitched and moaned a hundred times this weekend due to lack of sleep and sore shoulders from carrying Kendall, but Justin didn't complain at all. (well, ok maybe a little in the wee hours of the night Saturday...but who could blame him!?)

Trust me, I know I'm a lucky girl to have a husband who is such a good daddy. He works super hard all day, and as soon as he walks in the door, he eagerly takes Kendall from me to love on her and hold her until bedtime.

I know from experience that raising a healthy child isn't easy for a mom who works full time and has to care for a child and keep up with all the household responsibilities. And caring for a special needs child is even harder. So I certainly do not take for granted that Justin is so selfless and loving that he puts Kendall's needs and mine before his own. Men like him are few and far between.

So I just wanted to post this to let him know how much I love him, and how lucky I know I am to have him. He's given up his bachelorhood. His quiet house, free time, and spending money, all to provide for me, Kamden and Kendall. And best of all, he's done so with a smile on his face. He's always happy to see us (or at least acts like it :)) at the end of the day. He always makes me laugh. And even though sometimes it makes me crazy that he leaves his dishes and clothes all over the place, and completely tunes me out while playing video games, he is the love of my life. I'm blessed to have a male role model for Kamden who models what it's like to be a man and step up to the plate when the going gets tough. He never quits. And I know that is hard to come by, especially in a situation like ours.

So, Justin, thanks for being such a good daddy. I love you dearly.

Oh, and by the way, do you think you could use some of your vacation time this spring to care for Kendall so I can head to the next TRAIN concert series in North Texas and Oklahoma?!?!? xxoxoxoxox

And Back Again...

Yesterday Kendall was miserable. Saturday night she didn't sleep AT ALL. She wanted to be held and walked around all night. And so we did just that. We would have put her down and let her cry it out, but she was getting herself so worked up she would choke and stop breathing. By yesterday afternoon around 12, she was really laboring to breathe. The breathing treatments weren't helping and we were back to the same croupy sound, even worse than Friday.

So we took her in.

I'll save some time by not recapping the whole experience there. It was almost exactly the same as Friday night. This time they were concerned it had moved to her lungs. So of course we were whisked back right away, bypassing an even more crowded waiting room. They ordered a throat x-ray and lung x-rays. And gave her another Racemic Epi treatment which worked almost immediately. I asked to add a strep test just to be sure we kicked it.

All tests came back fine. She sounded better, and again we headed home.

Last night was her first decent night sleep in 4 days. Thank goodness. I was unable to sleep though. Worried she may have stopped breathing or her sugars were high, I checked her like every hour. So I'm totally spent and praying when she wakes up she doesn't have a repeat of the days before.

Poor child. She needs a break. This croup virus is soo nasty, and has knocked her on her little bottom for sure. I just want her to feel better.