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...

What a Day.

Have I mentioned that I have a full time job? The hardest full time job EVER! Have I mentioned that I never, ever, ever had the desire to be a stay-at-home mom? Days like today remind me why...

Days like today also remind me how blessed and lucky we are. I have a nice car to drive all over the metroplex to appointments. We have insurance and are able to receive the best care at one of the best places. I have the best nurse! EVER!!! She helps me keep my sanity. She makes long days like this bearable. She deserves to win some sort of award for being the most amazing "special needs baby whisperer!" I have great support from my family. My dad makes sure Kamden gets home from school safely when we're stuck on the other side of town at appointments. I have great friends to listen to me vent and cry and bitch and moan through my tough days. Trust me, I know things could really be so much worse...

But today was just one of those days. The ones where you really want to retire.

My head hurts.

I have a toothache.

My blood sugar is apparently low.

And I'm exhausted with the politics involved in EVERYTHING Kendall related :)

Ugh.

Anyway, besides being emotionally and physically drained, here's the latest.

Kendall and Kamden's eye appointments went really well. Kamden's fine. No glasses needed. Kendall is tracking and completely impressed the office at the PO. We are scheduling the Examination Under Anesthesia in the next few weeks. We will be measuring her eyes and assessing the pros and cons of possibly inserting in ocular lens implants. She will have her pressures taken more accurately, and will definitely leave with a more accurate prescription.

Our Pediatric Ophthalmologist is willing to work with Neurology. Our neurologist thought long and hard today (literally, shut his eyes and I think mentally went through her entire chart in his head for about 5 minutes) before telling me he thought we should move forward with the Muscle Biopsy to check for Mitochondrial Disease. We have been very apprehensive about this. It's mainly me. I need to hang on the the hope that Kendall doesn't have anything progressive...but it would probably be a good idea, since she's going to be out, to go ahead and go through with it.

Neurology brought a few surprises. It is time for Kendall to attend the "Spacticity Clinic" at Cook Childrens. This is a collaborative approach to treatment of movement disorders. Our beloved old Neurologist (who we saw before the seizures) will assess her May 5. We love him and are very anxious to hear his thoughts now that Kendall actually has some tone :)

I voiced concern about her arching. He insisted we visit with a GI Dr. soon to check for reflux. I thought this was coming for some time now, so it has. On her birthday we will go to the Dr. In the event he thinks she needs a fundo (which I truly do not think is necessary...nor do I think I would go for it) we will tag that on to our Muscle Biopsy, EUA date.

Our Neuro ordered another EEG before our next appointment. We will talk about plans to wean from the diet in 4 months. (obviously, she can't be on it forever, and we knew that) It will be a very slow wean probably going from a 3.5:1 ratio down to a 2.5 or so. The idea being eventually she will be off the diet and the seizures will be gone forever.

He wouldn't even entertain the idea of dropping Keppra. Maybe I can work on him again next time, but seeing as she hasn't had seizures in a while, I guess we shouldn't change anything.

No need for another MRI. What's done is done.

Then we went and had a ridiculous amount of blood drawn.

With time to kill, we went to the Botanic Gardens, then headed to the Urologist. Apparently I had that time wrong, and just when I thought we were going to be sent away, they called us back. We waited for the Dr. to come in and tell us the Renal Ultrasound was completely normal. I just stared at him and our nurse had to explain I wasn't used to normal results :) So no kidney stones, just encouraged us to continue giving her proper fluids and when she retains her urine to check constipation and increase her daily dose of Miralax. Simple enough. Structurally her kidneys and bladder are fine. No surprises.

So, overall good news today. My stress comes from my over-analyzing, worrying self. And being in the car all day. And dealing with people who view my very special daughter in dollar signs (but I can't really go into that on my blog today.) I'm sure once I get some sleep tonight, I'll have a new attitude tomorrow. I refuse to lose faith that there is more "good" in people than bad. That people only stare at my daughter because she is so stinkin beautiful. And the majority of people who deal with Special Needs children do so because they really do genuinely care about their well being...