Lola on the move...

Will this video ever upload??!! This is just the short one - sorry for the teaser!

Lola's Check-up

Lola had a visit to her Pediatrician this afternoon, and we have set up a videofluoroscopy test (swallow study), a follow-up with her GI to discuss g-tube removal (pending results of test), an appointment to discuss possible orthotics for her right foot which seems to roll in a bit, and I think that's about it. Leni had Lola all dressed up in the cutest outfit, with her hair in braids with big ladybug barrettes that Mickey got her when she was in the hospital. So cute! Lola was so excited to go to the doctor's - until she realized why we were there. She gave the ladies at the desk a big grin, then came time to get weighed/measured. For the past ten or so months, this has involved me getting weighed first, then holding Lola, then subtracting my weight. And for height, she had to lie down. Well, today she stood on the scale all by herself like a big girl, and then stood at the wall and had her height taken! She was so cute when they slid the ruler down on her head - she scrunched up her neck and smiled. She did this a few times before they could get it. So my girl now weighs 16.5 kg (36.37 pounds) and is 99.5 cm tall (3 feet 2 and a bit). So she's 86th percentile for weight, and 76th for height. Not bad for eating 100% orally! She's holding her own nicely! So Lola walked into the appointment holding my hand. Let me tell you, that was the best feeling in the world. This dr. is replacing Lola's ped. while she's on maternity leave, but we saw her while we were inpatients. She hasn't seen Lola since January, and was shocked by the transformation. Lola was none too cooperative once we got into her office, however. She did NOT want to have her lungs/heart listened to at all, and she did not like being examined. Crabby girl! She promptly fell sound asleep in the van as soon as we were out of there. I think I should start to take her fun places - everytime I take her in the van, she gets all excited, only to find out that she's getting an EEG or going to the dentist. She looks all around at the cows, and fields on the way in - very exciting. She must be like, "Uh, thanks again, mom. I really love our weekly outings to pain and misery camp."
Tomorrow, Lola gets to go to playschool with her Aide, Deannie. Isn't it cute how her Aide and her Nanny have rhyming names? So her little Nemo backpack is all packed up with her princess lunchbox for snacktime. So cute.

Oh, and I tried all night to upload the video, but it's over a minute long (that's right - that means Lola was walking/standing for that long). Anybody have any suggestions?

These boots were made for walkin'....

Lola just took several steps across the room all by herself. Usually she will take a few steps to get from one couch to the other, or she can be coaxed to let go of the couch to walk a couple of steps to one of us. This time, she was holding onto the couch and just started walking by herself! Steve started yelling to get my attention - we're both in shock! Now she thinks she's really cool and she's done it several times.
I keep trying to get some decent video, but she's not cooperating. i'll keep trying!

Lola starts SCHOOL!

Lola started working with her Developmental Aide, Deannie, on Sept 8. She has been doing great things! She is much more steady on her feet, and has taken several steps to us on many occasions. She is eating tons, and we are 100% not using her g-tube at all. Wow.

Last week we went to ACH to have an EEG done, as well as a visit to Lola's neurologist. She did great during the EEG, and even fell asleep as she was supposed to. Unfortunately, she did have a seizure while we were there. Well, actually it's a good thing that it was caught on the EEG - but a bad thing that she had it. It was not detectable to the eye - they watched it several times on the video monitor, and she's just happily chewing her toy with a smile on her face. Anyway, they figure that she's grown so much that she outgrew her Trileptal dosage. So it's being upped and hopefully it'll make the seizures stop. Since we changed the dosage, she's slept through the night twice, and she's happier and less grouchy. We go back in a few weeks for another EEG.

Kraft Dinner....after a nine month hiatus

Here are some pics/video of Lola enjoying her twelfth meal of the day. She has first and second breakfasts, just like a wee hobbit. Don't worry, the KD was just a snack - she has been eating strawberries, watermelon, applesauce, cheese, chicken, etc. - all the food groups have been represented. In one of the videos you can see the start of a shiner just beside her eye - one of several bonks she took today. I just might start making her wear her bike helmet around the house - we threaten it all the time.

Liam had a great day out in Canmore with his buddy and his dad. They biked all day and he's looking pretty tired now.

Lola met her Developmental Aide today, and she is going to be amazing. She could not believe that Lola was the same girl whose reports she'd been reading from several months ago. She was honestly shocked when she walked in and saw Lola walking around the furniture, etc. She really wants to take Lola into town to the playgroups that are offered through the GRIT (getting ready for inclusion today) program. They run on Tuesdays, and will give her an opportunity to socialize and meet some new little friends.

Okay, off to do the bedtime thing.

Eating us out of house and home!

And we're just fine with that! Lola is now eating breakfast, lunch, supper, snacks and more snacks by herself (or with us feeding her). She is only getting pediasure once per day - and after a week of that, I will stop that altogether. She is doing much better with her drinking - up to 4 ounces at a time. Unbelievable. The hard part will be getting her to take her meds orally, but she is now only on two so it should be easier than when she was having to take many more. We are still so shocked she's eating - and cheer with every mouthful she takes. She's probably sick of our clapping and yelling.

As far as medical stuff goes, she has an EEG coming up next week. She has to be sleep deprived, so she's woken up at 4 am and her appointment is at 7:45. They will attach electrode/wire things to her scalp with this sticky gross glue which takes forever to get out of her hair, and they will record her brain's activity to determine if she is having any seizure activity. Her neurologist will get the results of this test and we'll discuss it at our appointment the week after. Fingers crossed it goes well. Lola HATES this test and will scream the whole time. (then I get to drive her home, then bolt back to work).

Lola's still working on the walking thing. She does a lot of "downward dog", and pulls up on the couch and walks around the furniture. She has some big crashes, but she's doing really great.

And she's just waking up for the day so I'd better go get her! Little Miss does not like to wait.