Oh Dear,

So True to Kendall form...she's taking us for a ride.

We had the muscle biopsy, cauterization of her granulation tissue completed, the new button...a mini one non balloon, thank you very much, and her examination under anesthesia. Her pressures were high in her right eye, 38, and normal to high in her left. Her eyes are growing but her corneas are thick and may be the reason for the higher pressure? But that's the least of our concern!

We came home and Kendall turned blue from not being able to breathe. It was the most scared I have ever been with her. It was a no brainer to come back to the hospital. Of course we were taken immediately back, given a racemic epi and a steriod through her gbutton. Apparently she may just have that reaction to breathing tubes. The last time she had surgery she had the same thing. So were back in the er and I am using kendalls iPad to update! We are being admitted, not sure if we will be on the floor or the ICU. It just sucks. Again. I'm exhausted and will try to be more specific in later posts.

Thank you all for your prayers and encouragement. I will keep everyone posted through the blog. She is just the sweetest little angel in the world. Poor child woke up this morning with a grin on her face, and now she just looks miserable :(

Oh, and that muscle biopsy scar is really 3 inches long...

Pre-Op

We just returned from a 2 and a half hour pre-op for Kendall. She was a little angel through the whole thing. It was interesting to me how she woke up in such a great mood...all chatty, lovey, and smiley... then as soon as we stepped foot in that hospital, her mood changed. She became guarded and cautious. Eyeballing everyone who came her direction. She knew where she was and why.

I've been trying harder to talk to Kendall about things that are happening. Our nurse, Angie, does a fantastic job modeling this for me. She tells Kendall everything she's going to do and why. And boy, does Kendall listen! Unfortunately, I am sometimes guilty of just whisking her away, grabbing her hands to do sugar checks, change diapers, set up feeds, etc..

But we've been talking about the procedure tomorrow. She knows what's coming. The anesthesiologist came in and in not so many words was trying to ask if Kendall interacted. He kinda stumbled with his words when asking, so I helped him out. Is there a light on in her brain?! Well, yes, there most certainly is! We've gone back and forth on whether or not to give her a pre-anesthesia drink. You know, the one they take while in the room to calm their nerves before they are sent away with the strangers. At first we said yes, then no, and now I think its yes again. I think we should all continue to treat Kendall the way we would any other 2 year old. She has emotions and fears, she just can't voice them.

There was a lot of talk about the "uniqueness" of the Ketogenic Diet and being Diabetic. We've heard it all many times before. But with surgery, it gets even more complicated. If her sugar drops during surgery because she's been NPO for so long, they normally give a glucose drip through the IV, but then we blow ketosis. Again, its going to be a balancing act...and I feel pretty confident our friends at Cook's know her well enough to stay on top of it. They may have to call our Endocrinologist a few times, but he's the greatest...so I think she'll be OK.

This will be her 6th time to be under, so I shouldn't be worried...but I really, really am. I have had a ton of anxiety about this particular time. There are just so many factors to consider. And then of course, waiting for the results of the muscle biopsy. But I'm putting it in God's hands now. So, if you think about it, say a prayer for my baby girl tomorrow morning please.

First Week of Summer

This week has been insanely busy. We had a lot of appointments, and on top of that, Kamden developed a really bad case of swimmer's ear. Unfortunately, that lead to sleepless nights. Poor baby. He was actually moaning in his sleep when he was sleeping... On Wednesday he just laid on the couch for 5 hours watching t.v. and not wanting to move.

Justin was out of town, so the evenings have been all my responsibility. Handling Kendall's stuff and trying to stay on top of Kamden's pain and medication was challenging. Kendall has had 2 three hour crying fits this week before bedtime. When she gets in that mode, the only thing you can do is hold her. Even holding her sometimes doesn't quiet her down. At one point I put her in her chair and called Daddy to talk some sense into her. And I swear, she actually stopped crying and looked at the phone the whole time he was talking to her! When he hung up I could tell because she cried again. I kept calling him back until I realized he was trying to navigate through LA and his only form of GPS was on his phone! oops.

But we made it through. All I can say, is thank goodness for nursing! I absolutely,positively do not know how people do this without extra help. I only have 2 arms and I'm not getting any younger. I have no idea what was wrong with her. I guess it could be seizure related, or tummy related, or sleep related, or my favorite, just neurological. Whatever, sometimes the guessing is exhausting too.

Today Kamden and I are taking Kendall to speech, then across town to pick up her new AFO's. These are to be worn more than her current ones, so we will see how that goes.

This weekend Kendall and I are on our own again...so hopefully it will be uneventful!

Updates and Speech

I am finally sitting down to blog. It has been a very busy week. My 3rd grader is now a 4th grader (sniff sniff) and we celebrated the end of school with our 4th annual end of the year pool party. The kids had a blast and played their hearts out. Then, we had a few friends over along with their kids, and continued the party. I'm exhausted and sunburned today, and very much looking forward to a good night sleep.

I haven't seen any seizures in Kendall during the night at all. But, as predicted, our Dr. has increased her morning Keppra dose to 3ml's and scheduled a 24 hour EEG later in the month. Hopefully everything will be all clear and we can continue doing what we're doing.

She's been sleeping so much better lately. And we are making more great progress in Speech. We followed in Holly's footsteps and got Kendall an iPad. (Thank you Nonny and Poppy for your generosity!) Caleigh has been doing such amazing things communicating with her's, that we were inspired to follow suit. I will explain our approach in a later post. I am still in the throws of programming it to have all of Kendall's items and get them in a format that she is able to touch. We have also begun prompting her more with vowel sounds. After one time through the "famous" Monkey Mouths flash cards (I know they're called something specific...but it's slipped my mind) Kendall is repeating vowel sounds after us. She's also sucking a straw, and eating pretty much every texture. Yes, that includes liquids :) So, huge improvement there. This Wednesday we are meeting with the AAC specialist, and adding her to our weekly routine. It will be a challenge this summer motivating Kamden to attend Kendall's therapies, but I'm sure some bribery will do the trick. It'll all work out...because it has to!

We had a neurologist tell us early on not to get to wrapped up in therapies to the point our family suffers. Honestly, I understand where he's coming from, and maybe we will eventually reach a point where it evens out, but right now I do have the energy, the means, and the motivation to continue pushing forward and seeking out the best possible treatments. I know the first 3 years of any child's life are critical in development, so as I would with a "normal" 2 year old, we will do whatever it takes to help her reach her fullest potential. This is my job.

Seizure Monster

We had a great weekend. Justin and I were able to have some adult time on the lake with our friends on Saturday, since Kendall stayed with her Nonny and Poppy, and Kam had a sleepover and went to Six Flags with a friend.

The rest of the time we spent enjoying our family, and getting Kendall used to the water again. Needless to say, she definitely has the fish gene everyone in my family has! She loves the water. Yesterday we pulled out the trusty neck ring and she went after it again!

We're looking forward to starting water therapy with her next week. Our incredible PT is going to check out the layout of our pool this Thursday and then get her in the water on Monday. I think she'll be impressed with the way Kendall can move in the water!

Kendall and I have also been enjoying our morning walk each morning before it gets too hot. She's taken an interest in the ducks on the golf course. We bring bread and feed them each time we pass by. We've found a nice shaded spot and Kendall will talk and talk and talk to those ducks! I had a small panic attack this morning when her arm was out and a curious duck (a BIG one) thought she had some food and got a little too close! But it is definitely something I look forward to each morning!

So, although we had a wonderful weekend, and are welcoming the Texas heat with open arms (sarcasm) it all came to a screeching halt when Kendall had a seizure Saturday night. She was with Nonny, and fast asleep on her back. But those old familiar jerks and spasms returned. When I heard, I almost passed out. I can't explain the feeling of disappointment that ran through my body. I've come up with every excuse for them to be anything other than seizure activity...but my gut tells me it was a seizure. We have a call into the Dr. to find out the plan. I'm guessing either an increase in Keppra (she has had some weight gain) or another 24 hour EEG, or my Dr. will just say....hmh. And not do anything at all. I think seizures are a bigger deal to me than they are to him. But it is pretty catastrophic to a parent to see the seizure monster return when he's been away for over 4 months. I pray they aren't back for good.