Wednesday, January 16, 2013

Still here!

Well hello there blog... it's been a while. I have a legit excuse... really! Addie dropped my laptop again... and crashed my hard drive again and I just can't bring myself to fix it when she's probably going to do it again. That's THREE hard drive crashes in one year for those of you playing the home game. The last two times were under warranty but no such luck this time. Thankfully I had all our pictures backed up - ha! Learned the hard way. 

But blogging from the kids iPad isn't as easy as it is on a laptop. I'm a typer. I need the feel of real keys under my fingers. So blogging has not been as easy sans laptop. As it is now, I am taking the time to sit down on the old desktop computer we let the kids use and am making myself update this puppy. 


Things are moving right along in the big 2 0 1 3. We are officially 16 days into the new year and we are trying to start the new year off right. Everyone is trying to help out around the house more and eat healthier. Everyone is trying to focus on family time. 


I am happy to report that we have only had one doctor's appointment so far this year! YAY! Addie saw her neurologist on Jan 7th - the first time since her repeat seizure episode. We have started her on Lamictal and are slowly bringing her up to full dosage. A process that will take 8 wks. There are very few side effects to this med which was our main concern. So we are feeling good about this decision. We are praying that she does not develop an allergic reaction in the form of a rash - the most common side effect for this med. Which is why we have a very strict dosing schedule to adhere to. Gradually bringing them up to dose is one way to counteract the potential reaction. So far we have noticed no reactions or any side effects and we are very grateful for that. We won't know if the medicine is helping with the seizures until if/when she has another one. She went 2 months and 10 days between seizures the first time so we are marking the calendar and are prepared but hopeful that it won't happen again. I spend entirely too much time watching her sleep via her video monitor, but it's well worth the peace of mind. Dr. K did express relief that the Diastat worked as well and quickly as it did. It gives us a little more freedom as far as any future traveling is concerned. But as of now, we are grounded. We aren't planning on going anywhere for a while. 


I have emailed Duke and informed them that we will not be returning for her third stem cell infusion. What a bittersweet decision that was. There were a lot of factors and we spent several months debating and praying over this decision. For now, we feel it is safer to err on the side of caution and not fly half way across the country until we get a better handle on the seizures. I know a lot of kids that travel with epilepsy but the whole situation in Orlando has left me a little weary and I have learned to listen to those feelings. So for now, we are postponing her 3rd infusion indefinitely. There are obviously other factors involved, but her new diagnosis of seizure disorder definitely sealed the deal on that chapter. 


Addison is growing by leaps and bounds! She's 33 inches tall and 32 lbs! Her head circ is up to 53cm but it's growing at a nice steady pace so no cause for concern. She has about 30 words now and has really taken a leap in her receptive language. I can ask her to throw away her diaper and she'll do it! She'll bring me the remote, go find her juice, etc. It's awesome to see proof that she understands so much of her world around her! She is tall enough to reach the top of the counter tops which has been quite interesting! She can reach the top of the stove!! So anytime we are cooking, she is relegated to baby jail aka her pack n play, which she hates. 


We finally got her shoes for her smo brace... real shoes this time, not Crocs and we are working on building her up to wearing  her brace full time. It makes a difference for sure, but we aren't sure if it's the smo or the lift part. Her new PT, Sam is amazing. WE love her! She thinks Addie's leg length discrepancy is actually her leaning to her stronger side as opposed to her legs actually being shorter on one side. Which makes sense! We are watching that closely. Now all of our PT focus is on her hip and getting her to bring it forward when she walks.


Speech is pleased with her progress! Her new goal is 50 expressive words and we are on track to meet that goal in a few months!


OT is still working on her left hand weakness from her hemiparesis, as well as eating with utensils and pre writing skills with her strong hand. We are going to bump her up to 4 times a month in OT since we've been working on her utensil goal for a while now. Addie has the concept of eating with a fork. In fact, we spent an evening out at a restaurant loading her fork with every bite so she could feed herself the entire meal with a fork. She knows she's supposed to be using one. So now we just have to catch her fine motor dexterity up with her brain. 


Her favorite thing is still the Wiggles on iPad or our phones. It's generally the first word out of her mouth when she wakes up in the morning. She makes me put on my 'gasses' (glasses) before I can do anything else. She's quite a little character!! 


Whew.... I am a typer :)


I will do my best to get pics uploaded to this computer soon !!


Blessings ~ 

Aimee

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