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!
 

Ghost Girl

Things have started to get a little bit better for Haddie since I last wrote. She is slowly getting over her bronchilitus and is eating better. She's still pretty knocked out and lethargic from her seizure meds. We wrote to our neurologist and he had us take down the Sabril medication starting today. So we will see if that helps with her alertness.

Most of you know Haddie had a level 4 brain bleed on both sides of her brain before she was born. Doctors have told us that she will not be able to do very much. She's already defied the odds and is doing way more than ever expected. But we have to admit, this is hard sometimes. We want her to do more and it seems that things often go at a snails pace with her. We dont know how much is sinking in...or if anything is.

I picked up a book this past week that has challenged me as a parent. It's called Ghost Boy. Maybe you heard about it on the Today Show. Its a book written by a guy named Martin Pistorius (not the blade runner, shoot his wife guy...that's Oscar). He was a normal little boy until he was 12. At that point for some reason unknown to doctors he started to regress both physically and mentally. He lost all of his motor skills, speech skills, and every other kind of skills. Doctors said he was brain dead. And in his book he says that's what he was...for four years. But then his mind woke up. He became aware of his surroundings. But his body wouldn't respond no matter how hard her tried. For 9 more years he was a mind trapped inside a body. He talks about how he would be dropped off at a care center each day and often would not get any mental stimulation all day. He'd watch Barney for hours. Most people treated him like he was an empty shell...a ghost boy. But one day he was given the chance to be tested using a computer that would help him communicate. It took a couple of years but he finally showed everyone that he was there all along. And now he's a college graduate, is married, has a job and a best selling book.

You never know what's happening below the surface.

That story fills me with hope and wonder. You can see in Haddie's eyes that there is something going on in her head. Some of the doctors and therapists encouraged us and told us that we have no idea how a growing brain like Hadassah's will compensate for the damage that has been done. Maybe she is learning...but her body just isn't showing what her mind already has comprehended. This challenges us to dig deeper and provide more stimulation and chances to learn. We do a decent job at that but sometimes it is tough when you don't get a response in return.

Martin never gave much of a response either.

There are days that we do better than others. We still ask for and need your prayers. God gave us Haddie for a reason and we are beyond blessed to have her in our lives. Thanks for reading.

God is good.