21 Months Update

Whoever thought that parents should count their kids age in months up until they are two should be slapped 23 times. That's hard to keep track of! I'm glad it stops at two. In case you were wondering I am currently 343 months old. But I don't look a day past 300!

Anyways, Haddie is doing great. Last week we lowered the Sabril from 9mls to 4mls in the morning. And the next day she woke up. It's amazing to see how much more alert she is. She reaches for things and is awake most of the day. I'm sure this is what has been messing with her development. She's been too out of it to do much. And the good part is that after 3 days the seizures went away. This is what we call the sweet spot...alert AND no seizures. Hope to stay in the zone.

We got some AFOs (ankle/foot orthotics) this past week as well. Haddie's toes point downward due to her low muscle tone. We are constantly stretching her so they don't get stuck like that. These orthotics will make her feet go at the 90 degree level and will relieve some of the tension...and the time we put into stretching. We start with 15 minutes 3 times a day but eventually will work up to her wearing them all day long. She likes them a lot. And why wouldn't she? Take a second to point your toes downward. Feel that pressure in your calf? Now bring your toe back up to the normal position. Ahhhh, much better.

We had an all day doctors appointment yesterday that went well for the most part. The dietitian and the gastroenterologist are really pushing for us to get a G-tube. Thats the port that would go into Haddie's belly that we could give meds and extra nutrition through. Haddie has not grown in a few months and they think she is malnourished. We aren't so sure about that. Haddie eats a lot and we give her a lot of high calorie food. And I'm not sure they really consider how much energy a normal toddler would use as compared to Hadassah. Due to the meds she pretty much lays most of the day other than when we play with her. So maybe she doesnt need the numbers they want us to shoot for. But we do know that she needs to grow. So we are upping her calories again to see if we can can growth in the next month. If she's the same we will have to consider the G-tube. Everyone we talk to that has one likes it...but for us...eating is the one of the normal things Haddie does well. We want to give her a chance to do it all on her own for going to the tube. We will give her the month to decide on that.

Everything else went good. We are going to continue to lower Sabril at a slow rate and hopefully she will wake up even more.

She's making good progress. Thanks for the prayers. This post is getting long so I will end it here. Thanks for reading! Have a great week!