Nosey Rosey

Hannah is a growing! She has went up on the growth chart from 3% to 10% for weight and she is about 50% for length. That increase from 3%-10% made us very happy. She is now crawling! No more army crawl for her that is unless her dress or shirt gets in the way and she can't get her knees up under her. She is getting around and pulling up on everything. That about gives mommy a heart attack because she is very unsteady and falls a lot. The unsteadiness is getting better little bit by little bit. She understands "no, no". She should though because she hears it a lot. :) She likes to get into everything and she is very nosey. We call her nosey rosey quite a bit. Two days ago she actually mimicked my mom. My mom was tapping her chair and Hannah started patting her 16oz water bottle she was playing with. I was so excited. The understanding "no, no" and mimicking may seem small acomplishments but for us they are big. This all has to do with her brain development and when you have a baby that is having as many seizures that last as long as Hannah's seizure do the brain development is going to be affected. One problem we have been having is keeping Hannah well. She keeps having numerous ear infections. This causes her to run fever which in turn causes more seizures. So today we go see an ENT and get evaluated for tubes. Our prayer is that no more ear infection or a decrease of them will in turn mean less illness and less seizures. Well I have to wrap this up because as usual nosey rosey is getting into stuff. :)

Great News and Messy Situations

We just found out some wonderful news yesterday! The FDA may approve one of the main drugs used to treat Dravet Syndrome this fall!! It is called clobozam and it will be marketed as Onfi here in the states. We are so excited and hope to hear more good news as time goes on.

On the other hand we have experienced messy situations x 3 the last two days. Hannah had shown to have put on a whopping 5oz at her last visit to the dr this week. Since we are worried about her growth this was less than what we had hoped for but at least it was a gain. Well needless to say she has probably lost it between yesterday and today. She has been VERY constipated the last week so I decided to feed her a SMALL jar of prunes. I probably will just stop there becasue I am sure you can imagine the outcome. I decided from now on I will just put a dropperful into her other food every few days to keep things moving. :) Maybe one day I will be able to say she put on a pound but it seems that today is not that day. Overall she is doing ok. She has been having myoclonic seizures everyday this week and one day she had the 5 min tonic clonic but overall is has been a pretty calm week. I am learning a lot of new information everyday and I sometimes feel like my brain is on overload but I welcome the knowledge. Knowledge is power and I plan to use it in the fight for my daughter. She is my promise.

The Unknown Future

I think it is the unknown future that is the hardest with Dravet Syndrome. Hannah can be doing really well and then "bam!!" just like that our day is halted by seizures. Hannah went 10 days without a seizure after we got our diagnosis and now the last 4 days she has been having lots of myoclonic seizure activity. Today she actually had a tonic-clonic seizure, her first since Feb. 14th. We seem to do ok for a little bit when she starts new medications and then they don't seem to do their job after a while. A friend and I went out today to run errands and we kept noticing that her face was getting flushed and she looked feverish. We would take her out of her carrier and a little bit later she would be fine. Now mind you it is far from hot outside. It never got out of the low 70's today and she was very lightly dressed. This will be Hannah's first big summer where she actually will be out in the heat. It may become a problem. Children with Dravet Syndrome can have a hard time regulating their body tempature and they may not sweat to cool themselves down. This summer may be interesting. I guess it will be light clothing, fans, cool washcloths, and possibly a cooling vest when she gets bigger. We never know from one moment to the next how things will be going in our house. It can go from calm and relaxing to a full fledge hurricaine within minutes. Like I said, The Unknown Future.

Runaway Sewing Machine

Sewing is always a challenge when you have kids but especially if you have Hannah. She is into everything! I am in the process (have been for some time) of making Hannah the cutest little dress. Since she is not growing at a fast pace I don't have to rush and it is a good thing since I can't seem to find the time to finished it. Well the other day I was sewing the hem of the ruffle and what do you know but the machine starts sewing at full speed!!!! I am thinking, "WHAT IN THE WORLD?!" Yep. You guessed it...Hannah. She is on the floor underneath the table "helping" me sew. I did the fastest thing possible to save the poor dress and reached over and shut the power to the machine down. Needless to say the dress is still not finished. Hannah helps me around the house a lot. She dusts my coffee table (as she crawls between the opening in the middle), cleans out my kitchen drawer (taking everything out to explore it all), and even helps me keep my floors clean (can seem to find the smallest thing that the broom or vaccum left behind). Who needs a maid when you have Hannah?