GREAT DAY!

Paisley got hooked up for another EEG today and was a champ like usual. I'm not a doctor, but I could tell that the zigzags from her brain on the screen actually had some order to them. When the test was over we got our sticky haired baby and walked over to Dr. Gammeltoft's office to get the news. He told us that the EEG wasn't normal (probably never will be "normal"), but it was a tremendous improvement since her last chaotic EEG. He didn't see any sign of infantile spasms and there was minimal seizure activity. He was shocked at how good it turned out and said to keep fingers crossed for the seizures. So far the ACTHar has worked wonders.

 Holding her head up during tummy-time like a big girl! Picture courtesy of Andrea, Paisley's developmental teacher.

And since we left the office, Paisley has not stopped cooing! This is something she hasn't done since we started her treatment, and I am so excited to have my vocal, smiling little baby back! Andrea came over for her weekly visit with us and Paisley did such a good job holding her head up for her today!

Equip

Today, Paisley got to meet Dr. Trainer, her physical rehab and medicine doctor. I really liked her and we were only there for an hour which including checking in and out for a first time visit is nearly impossible! She got right to the point and is ordering some equipment for Paisley. First of all, we're getting a bathing chair. Right now our bathing situation consists of using a tiny infant bathtub that's very uncomfortable, or Brandon or myself sitting in the shower trying to hold a soapy, slippery baby. Here is the bath chair she's ordering:

Also, she is ordering Paisley a fitted stroller/chair with a tray which will give Paisley a lot more support for playing and will be easier than trying to carry this fat baby in an infant carrier seat when we go out. I'm not sure which model we are getting, but I do know it is going to be pink!

And last but not least, she's ordering Paisley soft wrist splints (which will be pink too, of course!) that will hold  her thumb out for better grasping and will give her wrists support so she won't be so stiff and curled up. One of my big concerns this week is how Paisley has been holding her left arm up to her chest with her fingers curled. I don't want her condition to cause anymore anomalies that she wasn't already born with. It's probably going to take a few months to get everything going with the insurance, but I am so excited to get more help for my baby.

Progress?

Paisley now grips skinny toys, cloth toys, and doll hair with not only her preferred left hand, but also her right hand, and for many minutes at a time. My baby lost her smile to infantile spasms, but when I pulled down Paisley's bottom lip to show my friend her new teeth, she smiled! I did it again, and she smiled again. And I did it again, and it wasn't funny anymore... But the best thing that has happened is last night Paisley was lying in bed half way on her back and her side. I noticed she was rocking her shoulders trying to roll completely over on her side to get more comfortable. I watched her for a while and finally had to grab her leg to help her roll over, but I still have never seen her put effort into moving like that! It's funny how the littlest things like this make me so grateful and so hopeful.

We get to meet with our helpful developmental teacher, Andrea, and a visual specialist in the morning, then we get to meet a social worker from UT Genetics, and then I get to go apply for Children's Special Services for extra help. Taking the day off, so busy!

Sunshine

Two weeks of a high dose of ACTHar, and now we're entering the final two weeks of tapering off of the hormone. Still no signs of seizures/spasms! But as we stop the ACTHar therapy, the more nervous I get. Even though Paisley hasn't been her self during these two weeks, it's still so nice to have a more aware baby. Paisley had her nine month check up and it went well. She's growing just fine!

This is kind of old news, but I haven't had a chance to update: UT Genetics called and gave us the okay to have more children. Brandon and I's chromosomes are normal and they even did extensive research in our 17 chromosome. They give us a 1% chance of this happening in a future pregnancy and that's because there could be something so small that they just can't pick up and it's definitely not impossible. Prenatal testing would be recommended. We not really sure what that means for us and what we're going to do with this new information. We're kind of a mess when it comes to our future family.

But here's a brand new picture of Paisley! I bought her a sock monkey and a Lemon Meringue doll because they have hair to hold onto and she really likes this doll at therapy with hair. Her grip is getting good!

Much Needed Update!

The ACTHar injections usually stops infantile spasms on the 3rd day of therapy. Not much changed the first couple days and Paisley had a cluster in the morning on the 3rd day and a really bad seizure that night. It didn't look promising. On the 4th day of injections she didn't have any clusters, but another bad seizure that night too (maybe not a infantile spasm, it looked kind of clonic/tonic; I don't know). That was on Monday and that was her last seziure/spasm, and it is now Friday! One more week of the high dose (2 shots a day!) and we start to taper off. So far so good! Althought the doctor is expecting the spasms to start up again after the therapy is done.

A home health nurse comes twice a week to check Paisley's weight and blood pressure. Everything is going well with that, except she has gained a whole pound in a week. She is so fat in the face, legs, and belly. She has been very grouchy and very hungry. When she eats she sounds rabid! She also has teeth coming in now. FINALLY, and it's not just one or two, but FIVE teeth really popping out. I'm going to miss that gummy grin. Her therapies are going great. She is rolling from her side to her back, holding on to certain rattles for minutes at a time, and holding dolls by their hair, haha. She even tracked objects a little bit.

I colored just my bangs a dark auburn, almost black. With my light face and bleach blonde hair it's a lot of contrast and I am more appealing for Paisley's eyes to focus on. I don't think many people like it, but my baby does so oh well! Also, I'm hoping to start a new shift at work to have more time with my baby and hopefully not miss so much work to go to her therapies, doctors, etc.

Keep sending those good spirits our way!

ACTHar Begins

Yesterday Brandon got his new insulin pump! We had to go to a really long class, but so far his blood sugar has been awesome and he feels better. After that we had to do Paisley's barium swallow study. It was creepy. Basically a speech pathologist fed her barium in a thin liquid from a bottle, then a thick liquid, and then some baby food while they watched her eat on a video X-ray. She has penetration in her airway, but she clears it and is not aspirating. She also has delayed swallowing. They said it's nothing to worry about now with her thin food, as long as we keep her elevated while feeding.

This morning we had to go to Children's ER to give Paisley her first ACTHar shot. She had to be in a controlled setting incase of a reaction and a home health nurse had to show us how to do the injections (even though Charlie could do it with her eyes closed). She tolerated it fine and barely cried. So two more weeks of two shots everyday, then we start tapering down to finish the four week treatment. I can't wait for this to be over, and even more, I can't wait for this to start working (even if it's just while she's doing the therapy). I need my baby to progress in development to have a longer, more healthy life.