A Good Birthday.

Kendall had two great appointments on her birthday yesterday. The first was GI. He wasn't convinced her arching was related to reflux. He agreed to start her on 20 g. of Nexium daily. The second was Endocrine. It lasted exactly 10 minutes! Her Hemoglobin A1C is perfect. We're doing a great job, and he didn't make any changes. yay! I love all our Dr.'s. Especially our Endocrinologist. He made it a point to say I know my daughter best, and should go with my gut! I asked him about the muscle biopsy to test for Mito and he also thinks it should be done. He suggested I have them do it and tell them I don't want to know the answer. Really? So, I'm still torn about that. I have on other Neurologist I am going to ask on Monday at our Spacticity Clinic appointment. This is the Dr. who told me when Kendall was really small, that no matter what...we should do things "for" Kendall instead of "to" Kendall. I'm interested in finding out what he thinks.

Kendall and I took a long walk this morning and visited my mom. She's still very, very, very sick. She looks and feels miserable. So please continue to keep her in your prayers. The Infectious Disease Dr. has ordered a bunch more tests to see if this could be something more than just typical side effects of the Interferon. It's a double edged sword for us. If it is something else, that just sucks....and if it isn't she may get off the treatments, and she only has a few more months to finish the cycle. Either way, her quality of life right now is not good. My dad, sister, and I are at our wits ends. It is exhausting fighting Dr.'s for answers. (trust me!)

This morning Kamden woke up feeling wretched. I made him go to school for his Reading TAKS test (in Texas this is the money maker for the districts. It is a terrible test which, in some cases, measures how well the teacher can teach to the standardized test. )I don't know what came over me, but my 9 year old who was already extremely nervous, (even though I knew he'd ace it) sick, and all I could say was "you don't have a fever, get dressed." As the day went on, and I began to feel guilty for making him suck it up and get out the door, I decided to make him an appointment with his pediatrician to rule out strep. Fortunately, all the tests came back normal and we left with 3 new allergy prescriptions for him! My poor child was red eyed, coughing, and cold sweating and forced to sit at his desk until the entire 3rd grade finished their tests, when he should have been resting at home. Ugh. They have the teachers, kids, and parents a nervous wreck about this test. It is definitely one of the things I don't miss about teaching 3rd grade.

So, after a bunch of Dr.'s appointments, it seems my trip on Friday is still a go! And let me just tell you...I am very excited!

Quick Update!

Things are crazy around here...we had a wonderful weekend. Kamden had 2 friends spend the night on Friday (and this is what we woke up to)



Then Saturday we spent the day at my friend Theresa's house for a BBQ. It was our second annual Susan G. Komen Race for the Cure after-party! This year it was much different, as our friend Carmen is in remission. Last year, she had just been diagnosed, and this year we had a celebration of her victory :) Kendall enjoyed being outside, but was ready to head home after a couple hours. Justin, Kamden and Kendall headed home and I was able to stay and play for a while!! Needless to say, I was recovering a bit yesterday.



Tomorrow Kendall turns two officially! We are celebrating the day by spending the entire day at Cooks for appointments. We have GI at 11, then Endo at 2. Another fun day! Too bad they had to fall on her birthday...


We have switched nursing agencies, and I couldn't be happier with the decision. It was a bit stressful the past few weeks making sure everything would line up and Kendall wouldn't go without her two nurses. Thankfully, it has all worked out. Two of my friends from high school started Vivicare, and I am so impressed with the level of compassion and professionalism they've shown. ALL people dealing with children with special needs should take a page out of their book. Unfortunately, I found out the hard way, sometimes people care more about advancing their careers rather than taking care of people. A shame, really...but thankfully the stars have aligned and Kendall will be getting the same great care, and I will keep my sanity. It was definitely the best decision for my family :)

And finally, barring any unforeseen issues in the next 3 days...I'M GOING TO SEE TRAIN ON FRIDAY!!! Yep. My sister and I are making another road trip to see our friends Pat, Scott, Jimmy, and Hector at Winstar Casino on Friday night. We're spending the night in Oklahoma and returning on Saturday. I'm sure I don't have to explain how excited I am! If you read my blog back in November, you already know we're a bit obsessed! Lookout Oklahoma, the O'Rourke sisters are on their way :)

Normal Labs

Just wanted to share that all Kendall's labs came back normal. Well, they did want to make me aware that her blood glucose was high...205 (ha! we'll take that!)

We have a very busy day today with nurses, pt, ot, music therapy, and a new dishwasher being delivered (thank goodness) Hopefully Kendall and I will be able to fit in some swinging too.

Because of my dear sister's generosity at Kendall's birthday party, I ordered The Listening Program yesterday. We were able to order it and initiate it ourselves without an OT. I can't wait to get started. Anything to help Kendall sleep at night is worth a try. I think Kamden may also start it too *you know, get our money's worth!

So, all is good here. Just living the dream :)

Birthday Party

We had a small celebration for Kendall's birthday on Saturday. We wanted to keep it low key so Kendall wouldn't be subjected to any germs or illness! Hopefully we accomplished that.

Her birthday isn't until the 27th, but our April is very busy so this weekend worked best.

We were very sad Kendall's Nonny was out of town. And very sad her Nonna is still feeling too miserable to leave the house. And very sad her BFF Caleigh was running a fever and had an unexpected visit to the ER. So it wasn't the same without them.

Growing up, my mom always made our birthday cakes. So, Justin and I decided to give it a whirl this year (probably not the best idea when your dish washer is broken) But I think it turned out OK. Not sure if we will continue the tradition, it's way easier to just go buy one!

We had a very nice day with the rest of our family and friends. The big kids actually went swimming (they did the same thing last year...) And that water was crazy cold. They painted birdhouses and played their hearts out.

Kendall chilled out inside with the adults and took everything in! She was a perfect angel the whole afternoon. No crying at all! She was playing the "arching" game when Uncle John was holding her, but other than that she was great.

We are blessed to have so many people who love and look after Kendall.

I can't believe she's almost 2.

Fine. Fine. Perfectly Fine.

Thanks for the support. I'm much better today. Things always do seem to fall into place. That... or I just end up changing the way I think about them.

No matter that my air conditioner, dish washer, and microwave have all gone ca put in the same week. They'll be fixed. These things happen, right!?

Yeah.

Anyway, my mom is really having a tough week. I talked to her this morning (because, let's be honest... she's my go-to person when something breaks...and 9 times out of 10 she knows how to fix it!) She's really down. The interferon poison she has to take shots of every week is wreaking havoc on her tired bones. Her hair is really, really, really going bye-bye. She's sad and miserable. And I'm miserable for her. And although her poor body is fighting, all she seems to do is apologize for not being there for me and Kendall. I know it breaks her heart to not be able to see her and work with her every day. Life just isn't fair sometimes.

But, we are totally fine. I've reached a point with Kendall where I know it's all going to be OK. If something catastrophic hits us again, we'll suffer through it and figure it out. Because that's what we women do, right?! And come back stronger...