Neurology Appt...and our next steps!

Well...we just returned from our appointment! Dr. Malik did a great job going through everything with us. He even took us in the other room and went over the MRI. After further review, Kendall is not a surgical candidate. I guess I feel a little disappointed with this, since he made me think at first she was. The seizures are coming from both sides of her brain. Also with the added risk of Factor V, the risks outweigh the benefits for her.

On a positive note (at least in my mind) her MRI shows two Porencephalic cysts...a bleed on both sides, but structurally everything else is in tact. Now, I feel safe saying her main diagnosis is Cerebral Palsy. She will develop... just delayed. He said she will probably have a left sided weakness, but could not predict her future. No "life expectancy" was given! In a weird way, that makes me feel better. We just need to be patient with Kendall. And these darn seizures need to stop!

So, the plan to stop the seizures: Since we are still not at the max dose of Keppra, we will be increasing that, since the Topamax hasn't ever worked, we are decreasing it. After 10 days on max dose if we don't see any improvement, we will start Vigabatrin. (they are calling a pharmacy in Calvary?? if we can't get it there, Mexico.) Then, if that doesn't work, ACTH. Justin seems relieved we have a plan. I'm relieved there's still 2 more options before ACTH. Kendall's still her happy, giggly, sweet self...with annoying seizures!

I'm off to Kam's Open House...and tomorrow we have therapy early and blood work to check the medication levels after that! Justin will be out of town all week on business and I have a ridiculously busy week with work too! Keep us in your prayers!

~This is a picture of Kendall enjoying the beautiful day yesterday after church in her Child Rite chair!

The Littlest Heroes Project

I have this ridiculous obsession with photographs. I love looking at others' pictures and while I was pregnant with Kendall and couldn't sleep, I would surf the Internet at night and look at photography sites! I am always in awe of people who posses the talent (and patience) to capture great pictures...especially of children.

Anyway, before I knew about the journey we would face with Kendall, I looked at the website for The Littlest Heroes Project. So about a month or so ago, I applied...thinking it would take a while to set everything up. After viewing Megan Hamilton's Photography website, I knew she was a match. Her pictures are absolutely beautiful! (you have to check it out!) A few weeks ago I was notified that we were accepted and Megan would be doing our pictures. I totally thought we'd have to wait a long time....but she fit us right in!

I've really wanted a good family picture for a long time, but with our crazy lives, that seems next to impossible. Megan went above and beyond to make our photo shoot relaxed and comfortable. We had a great day as a family and felt "normal" for a while! Kendall was a bit fussy, so I was amazed at the pictures Megan was able to capture. If you have a chance, check out our pictures here!

Yesterday we ordered a pediatric wheelchair and bath chair. I knew the time was coming...and while we are really in need of these things, it was bittersweet. Kendall has a Neurology appointment on Monday (ugh...) so Justin and I will know our next plan very soon. My mom has an appointment with her Oncologist on Wednesday too... so MANY, MANY prayers needed for our family this week.

Hope everyone has a fantastic weekend!

Hot Yoga!

On a totally unrelated Kendall topic, I have a new addiction! I haven't been running much since the White Rock Marathon in December. I just haven't been motivated. But, things have been so ridiculous with work and Kendall, I decided I need to find another way to de-stress! So, thanks to my friend Jill, I went to Hot Yoga at a Yoga studio here in town. This was my first time attending, and I swear I sweat more than I have running outside in the Texas heat. And oh.my.gosh. let me just tell you it was 1 hour and 30 minutes of pure bliss. I felt so completely rejuvenated! This morning I woke up and my neck (which is usually completely tense from stress and driving) did not have one knot! So, I'm hooked.

Kendall has been giving me fits every morning and evening with her eating. She simply has lost all interest in spoon feeding. ALL of her medicine requires her to eat, so we are really faced with a dilemma. Since her swallow study was OK, Speech has suggested we start introducing other foods. More table foods like mashed carrots and potatoes with ranch dressing and ketchup. I'm hoping this will do the trick.

We do have some new things to share! I recently gave Kendall a sippy cup with a bit of juice in it, and she held it on her own!!! (her hands look fisted, but they aren't. The cup has handles!) Also, ECI brought us a switch toy. It's a cow that moos and wags his tail and walks toward her. As you can see, Kendall gave him sugars! She loves it! Also, our wonderful OT has been working on Kendall using her hands more. She started holding links and banging them together. She is actually starting to play!! So exciting! These are things we've been waiting for for a very long time!

That's all I have! Hope you have a fantastic weekend. Where did this week go???

Swallow Study

Well, we had a very busy day today. First Kendall had PT and did remarkably! After that we rushed home for OT and she had a really good session with OT too! She took a good nap, then we were off to the Swallow Study.

It was relatively painless. She refused to eat solid food..big surprise (sarcasm) She took about 22 sips of the barium. They were able to hear the "wheezy" sound she makes when eating while they were imaging. She also had 2 seizures during the study.

So...the results? Drum roll... she is not aspirating. It was a safe swallow. I wish that made me breathe a sigh of relief, but the Dr. quickly told me with children like Kendall, there is always a chance of decline. It was not a normal swallow...but it was in the normal range. She had an "intermittent delay in triggering swallow." and "10% laryngeal penetration." In those 22 swallows, "noaspiration was noted, and while congestion was audible, no residue or food was present in pharyngeal area or trachea." Not even during her seizures! So, I guess we're in the clear for now.

Whew. Now, if we could just get her to eat solid foods again without such a fight. I kind of think the taste of the medicine every time we feed her has caused her to dislike eating, but I guess the most important thing is warding off the darn seizures.

I made it though another stressful day with only one Hershey's bar! WoooHooo!!

The Weekend

Sometimes, OK...a lot of the time, I think these numbers are reversed!!! Doesn't he just look thrilled to have his picture taken? I'm sure he'll be even more thrilled that I put it on my blog!! Oh, Justin! You are one of a kind...a man without a crowd...a gun-toting Democrat, a man of few words, the BEST two stepper, with the biggest heart, a very loving dad and step-dad, and unquestionably the love of my life! Happy birthday to the kindest most patient man I know!

And here's my wonderful father-in-law who has the same qualities...minus the man of few words part...ha! I love you, but if you ever leave a spit cup around and I drink it again, you're so fired.

We had a wonderful weekend...up until this morning when Kendall developed a stuffy nose and a fever. Boo. But the weather was beautiful and I really enjoyed spending time with my family. Justin and I went out for his birthday on Saturday night with friends and had a great time. Sunday Nonny (had a good picture of her and Kendall but the light was blurred...so we'll try again next time) and Poppy (pictured above) came over along with the rest of the fam to celebrate my big baby's birthday! We grilled steaks, and even though Kendall was feeling under the weather, she put on quite a show for everyone. She is such a sweetheart! Full of smiles and personality despite everything.

We have a busy week. Ophthalmologist appointment first thing tomorrow and speech after that. Then Tuesday is her swallow study followed by PT, and OT. Just another routine week of appointments and praying Kendall will eat so she can take her medicine twice a day. (B6, aspirin, Topamax, Keppra.) Please pray they don't find that she is aspirating on Tuesday. Enjoy your week and hug your babies!