A Lot of Changes

Well since I last blogged in May a lot of changes have taken place and there is more to come. I will start with the good. Hannah is able to walk around objects while holding on such as the couch and coffee table. She will now take steps forward if you stand behind her and hold her hands. Her fine motor skills are developing a little more. She actually can point now. She wont point at people or things she wants but she will point to pictures in a book. Mainly picutres of babies. She loves babies both real and dolls. She will give a baby doll a hug. I find this really cute. :) She can now raise her arms to us to be picked up. She still doesn't wave but she will raise her arm up in the air and hold her hand open. There just isn't any open and shut of her hand. This all ties in with fine motor skills. Verbally she does babble more but still doesn't say any words. Now for the other news. She pretty much came to a halt on her growth. She did get a little taller but she only gained 1/2 pound in 2 months. This lead to a NG tube which is a feeding tube through her nose. She gained a pound right after it was placed but none since. She will be having surgery Aug 24th to have a Mic-key button placed. This is a tube that will surgically be placed in her abdomen and into her stomach and she will receive nutrients through it. She can still eat if she desires to but that is the problem. She doesn't want to. Seizure wise her seizures have changed once again. Or I should probably say a different kind has been added to the other 4 types she was already having. Now she has seizures where she just quits moving, stares off in space, and quits breathing. She turns very blue from lack of oxygen and I have to give mouth to mouth. This is the worst seizure kind ever. I never know when it is going to hit. There is no warning. She has also become very heat sensitive. If she gets overheated she will have seizures. Just going from Walmart, walking to the car, putting her in her seat, and driving 10 min home she began to have seizures. Her medications have been increased once again. She takes 3 seizure medications twice a day. This past week she has started having massive amounts of seizures when she wakes up in the mornings, when she wakes up from nap, and even sometimes in the eve right before bedtime. Despite it all she is still a very happy baby girl. She tries not to let things slow her down. She will almost always have a smile for just about anyone.

Birthday Angel

A year ago today a beautiful baby girl was born weighing 7 pounds and 19 inches long. Hannah is the strongest little girl I know. In the last year she has been through so much and despite it all she always has a smile on her face. As of today she weighs 17 pounds 11 oz. This means she has gained 1 pound 2 oz in the last month. That is a great improvement and if she continues to gain weight like this then we shouldn't have to put in a feeding tube. Her siezures continue to be an everyday battle and some days are worse than others. However, because we are becoming more comfortable caring for her after her larger seizures she has not had to hospitalized since Feburary. If they last more than 3 min then we give emergency medications to stop them. Over the last 2 weeks we have had the paramedics out 3 times due to the lengthy seizures not stopping even after we give emergency medication. The seizures lasted 9 min, 15 min, and 20 min. She has been stable by the time the paramedic arrive so we have chosen to keep her home where she can be comfortable. She likes to cuddle after her seizures and doesn't like to be moved around. Once she wakes up and is back to herself we always see her big beautiful smile once again. This smile melts my heart and is like sunshine. Hannah's gross motor skills have improved quite a bit lately. She now sits up unassisted, can pull to stand, crawls on her hands and knees, and she can even walk along the side of the couch by side stepping. Her fine motor skills are on about a nine month old level so we are working on them on a daily basis. We had tubes put in her ears early in April and so far she hasn't had any ear infections. Her hearing seems to have improved and she does make some sound just not as often as she should. We have noticed that she makes the majority of noises when she is moving such as swinging back and forth. Only time will tell how much speech she will be able to obtain. Even still it is in the back of our minds that no matter what skills or words she gains it can all be yanked away in the event of one seizure. This is the way of Dravet Syndrome. But no matter what Dravet Syndrome has in store for us it never takes my baby girl's beautiful smile away. Happy 1st Birthday to my little angel.

Progress? Yes and No. Happy baby? Yes, Yes, and Yes!!

Let's see. Where do I start? Hannah is an amazingly happy baby. She smiles to show her four little teeth off all the time. She never meets a stranger although she has started tilting her head and tucking her chin like she is shy but trust me, it is all an act. She will let anyone hold her and will give them "kisses" with enough coaxing. Her kisses are not really kisses but instead they are full on open mouth slobering on your cheek as she says "ahhhhhh". To mommy they are the sweetest things ever though. :) She loves books. I think mainly because she has this facination with things that go "open and shut". I think she open and shut my Bible in church Sunday night 50+ times and I had to laugh as did my "neighbor" on my pew. That brings me to her sizures. Not only did she open and shut my Bible but she also had myoclonic seizures throughout the entire sermon. I was on pins and needles because they can lead to tonic-clonic seizures where she becomes unresponsive. She has been having the myoclonics everyday now for the last week and a half and somedays are worse than others. She has an epileptologist appt on April 18th so maybe we can adjust her meds and that will help. No only does she have that appt but she also has a GI appt that same day. This is VERY important because we just found out yesterday that she is growing in length but she is actually LOSING weight. We are not sure why she isn't gaining and now she is 3% and less on weight and height to weight ratio. Other than those two issues she is doing really well on her development compared to what she was. She is now crawling on her hands and knees, pulling up to a standing postion, and in the last day or two she is actually learning to let herself down somewhat gently from a standing to a sitting position. She doesn't always make it gracefuly but she tries. Hey she IS my child so she doesn't come by much gracefulness honestly. :) She is into everything as usual. Sometimes it makes it hard to keep things tidy around the house especially when you have to keep your eye on her all the time and then some just to make sure she doesn't have a seizure or hurt herself getting into "no, no" stuff. "No, no" makes her world come crashing down. She will scrunch up her nose, pucker her bottom lip, hang her head, and let out the most pitiful cries you have ever heard. It breaks mommy's heart too. Daddy says I spoil her but how can you not spoil a baby as sweet as this?

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?