Wednesday, April 28, 2010

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!

Monday, April 26, 2010

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 :)

Wednesday, April 21, 2010

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 :)

Sunday, April 18, 2010

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.

Wednesday, April 14, 2010

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!?


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...

Tuesday, April 13, 2010

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 :)
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...

Sunday, April 11, 2010

Big Week Ahead...

This weekend was great. The weather was so nice for our garage sale. It went really well...we had tons of people, but I ended up practically giving things away because I'm a sucker. I made a nice chunk of change, but definitely not enough to start the Listening Program, though it will help get me there! (click on the link to see which one I'm referring to!) Thanks for the suggestions for other more affordable options. I will be looking into them this week.
The boys (Kamden and his best buddy next door) decided to brave the pool. I thought it was entirely too cold, but they were determined. It definitely got me excited for this summer. It's nice to be outdoors more. The sun definitely makes me (and Chloe our lab) happy.
Kendall discovered the trampoline thanks to her brother. I tend to be overly protective of Kendall. To a fault. It may be me that denies her normal childhood adventures. I don't want her on the floor unattended, because there's germs and dog hair. I can't stand for her to be around crowds because I'm afraid of germs. If I could put her in a bubble, I would. Kamden on the other hand, wants her in his room when he has friends over. He wants her outside swinging when he's playing. And it was his idea to let her jump on the trampoline. I held her at first and when I heard her squeals of joy, I decided to put her down. (on the filthy, nasty, dusty trampoline...without a protective mat or net...since it dry rot last winter!) She LOVED it. She was singing and laughing like crazy. It made my heart happy. I so can't wait to get her in the pool this summer when it gets warmer!
This week will be busy. Both my kids have an appointment with the Ophthalmologist tomorrow. Kamden's been having headaches and complaining of blurred vision...and he's soooooo clumsy. So I decided to make an appointment for him the same time Kendall has a checkup. I'm sure we will be scheduling her next examination under anesthesia tomorrow. I'd like to try to put it off until May because April is crazy for us.
AND...I told the Neurologist I'd consider doing a muscle biopsy if Kendall was going under for anything else. This puts my tummy in knots. I don't really want to know if she has a Mitochondrial Disease. I really, really don't want to know. I wish I could put my head in the sand and ignore it, but I can't. So, I'll be deciding this week if we want to just go ahead and do it.
Tuesday she has her follow up with the Urologist to discuss the results of the Renal Ultrasound. And the same day we are headed to the Neurologist for our checkup. Kendall hasn't had a seizure in almost 10 weeks. But I do think it's a good idea to have another EEG to be sure. I'm not sure where we go from here. I know he'll say not to change anything, but I'm anxious to get her off the Keppra. It would be nice for her to be seizure med free and see her personality really come alive! So I'm crossing my fingers!

Friday, April 9, 2010

Our New Look!

Big thanks to Holly for the new header!! This is a picture she took of Kendall at the Easter Egg Hunt. She's very talented :) I just love it!

We have a garage sale planned for tomorrow. And can I just tell you how much I hate garage sales? Justin too. (he's volunteered to sit inside the whole time with Kendall so he doesn't have to deal with the people!) So, why am I doing it? I'm not really sure, other than the fact the third part of our garage is completely filled with junk I haven't been able to get rid of yet. And of course the money. The Listening Program we were interested in starting Kendall on is VERY expensive. I mean VERY. We have to pay the OT for her services as well as buy the program. I'm not super big on alternative things, mainly because I don't have the time to do my research and adjusting to being a one income family unexpectedly doesn't leave much room to throw money around on things that may or may not work. But I've heard several success stories on how it calms the nervous system and even helps with sleep! So, I'm willing to try it.

As I've been sorting through all of our things, it has been very bittersweet. I have a bizarre attachment to Kendall's old clothes. Who am I kidding? I have an attachment to Kamden's clothes, and mine too. It seems I have a story about every piece of clothing. I can remember events that happened when wearing certain things. So, a lot of memories of the past two years flooded back. I've spent a lot of time in the garage standing there in silence, looking around at things. I guess it was therapeutic, and getting rid of it will be too. Gosh, its just a garage sale! I need to get over it!

Things have been about the same all week around here. Kendall's not sleeping, and Cooper (my cocker spaniel) is getting into everything. Our house gets crazy around 3:15, and doesn't settle down until around midnight. Then, we wake up and do it all over again. I've come to love my coffee and time between 7:45 when the house is silent til 8:15 when Kendall gets up for meds. Its my time to blog and catch up on Tivo'd reality shows :) So, I'm off to do just that.

Wednesday, April 7, 2010


We've been enjoying the nice weather. Kendall's been swinging a lot outside. She also has enjoyed being pushed in the jogger. (not slow, but fast...or over bumps!)
Things are starting to get back to our normal routine around here. Kendall has a new Physical Therapist we see twice a week. So far, we're off to a good start. She's definitely not going to be one to let Kendall run the show...and for those of you who know my little angel, you know she tends to think she can do that. Monkey Mouths Speech therapy is going well. They have opened another location in Flower Mound, so unfortunately our current therapist will be leaving. We should be starting with our new one this Friday. Since my new found focus on Kendall's oral motor development, she is babbling more and more each day.
Yesterday I was shocked and very saddened to find out our amazing ECI Speech Therapist Kristi is moving. As soon as she told me I started to cry. Through our journey with Kendall, her therapists and team of people who work with her on a daily basis have become my family. I don't handle saying goodbye very well. Especially when it comes to people who love my kids. I guess this is something I need to get used to. I'm sure we will have nurses, teachers, and therapists come and go...her whole life. But still. I'm sad. Thank you Kristi for all you've done to help Kendall (and me) over the past year and a half. You will be GREATLY missed :(
Yesterday Kendall also had her Renal Ultrasound. I swear the sonographers must take a class in how to have a "poker face" because I couldn't read his face one bit. Next week we meet with the Urologist to discuss the results. Ugh. I hate waiting. I figure if it were good news, we'd probably just have an appointment with the Nurse Practitioner, or get a phone call...
Kendall had music therapy again today. Because she didn't sleep much last night, she was a little groggy. But Nikki our therapist is really good with her. I wish I had the patience she has to wait for Kendall to make a move or a choice. Hopefully, I can learn that by watching her. Kendall has such determination on her face when reaching for an instrument. She's also learning to master cause and effect. When she plays an instrument, the song goes on. When she stops, it stops. Kendall would rather just arch her back and start screaming to make it go again...but we're trying to change that :)
Kamden is doing great. Despite recent inappropriate language at school, he's having a great year. I'm so proud of him. He will receive his advanced purple belt in Karate this month, and he can now flawlessly play 6 chords on the guitar, and one scale. And I'm sure he's going to learn even more in the next two weeks, seeing as he is grounded from ALL video games for 2 weeks!!

Monday, April 5, 2010

Friday, April 2, 2010

Butterfly Exhibit

Today Kendall's speech therapy was canceled, and since she was already all packed up, Kam and I decided to take her to the butterfly exhibit at the Ft. Worth Botanic Gardens. It was a lovely day. Kendall was enamored by the beautiful butterflies in every color. Several times they flew past her and she reached out to grab them.
Kamden didn't have school, so we spent the day at the gardens, then shopping for flowers for our flowerbeds. It was the perfect spring afternoon for sure! (minus Kendall's meltdowns and my stubbing my toe on the shopping cart AGAIN!)
Easter dinner is at our house again this year. I'm excited to do an Easter egg hunt with the neighbor kids, and to spend the day with our amazing family. Hopefully my mom will be feeling better and able to be with us. There's lots to prepare for tomorrow, so I'm off to get some rest!