Some big changes in a little package!

Wow! It's been so long since I've posted anything- lazy me! London is doing well... we've increased her Keppra dosage and seen some positive changes so hopefully soon we'll take her off of the Topomax and she'll feel even better! She went 6 whole days about a week ago without a seizure!!

She celebrated her second birthday on October 7th at home with family from both sides. Of course she got completely spoiled! I'm glad that she's got such great grandparents, aunts, uncles, and cousins that put so much thought into a gift for her- sometimes it's hard to find a toy that she's interested in or that will have any sort of therapeutic benefit.

Another big thing that's happened in our little family is that it's grown! I had our little boy, Kannon Keith Bowman, on Tuesday, November 3rd! He's been such a good baby and we're (I'm) so glad to be able to hold him in my arms and not my belly! :) London doesn't really react to him... she doesn't mind his crying though so that's good! He seems to really like her- if he's fussy sometimes I can lay him next to her and he calms right down. It's pretty sweet!

I will try and post more often now that things are settling down!

My poor little London...

So on Monday night, London had a seizure at about 11:30pm... it was her typical seizure and she didn't have too hard of a time getting back to sleep. The next morning however she was super-fussy and really restless. She stayed that way all day and most of the afternoon then seemed to be doing fine... So I didn't think much of it. Then THAT night she had a seizure at about 4am and couldn't get back to sleep. She was very tense and very shaky and she wouldn't eat or drink anything. At about noon, when she hadn't shown any improvement, I called her pediatrician and asked what he thought about it- he said to be on the safe side to take her to Primary Children's ER. So I packed her up and drove down there... And just envision this: Here's 6 1/2 month pregnant me, with a diaper bag, medication bad, my purse, and a lethargic, disabled 2-year-old. They valet parked my car, which helped, but I was still pretty flustered and worried (obviously). We get in there, they take us back to a room at about 1pm and no doctor or nurse even came in to see her until 3PM!!! The only people that came in were the girl that got our insurance information and a tech that took her vitals. So here's little London, still not taking any food or drink, shaking, whining, and generally not herself and nobody cares to check her out...? Not to mention that I hadn't had anything to eat or drink since the previous night... Needless to say I was upset and scared that something could be seriously wrong with my baby and nobody was acting like it was an 'emergency'. Why not call it the 'come in and we'll see you when we see you' room? Not 'emergency' room. ANYWAY- Eventually I got her to take a little applesauce and some water and the doctors came in to see her. They couldn't find any signs of illness so they called the neurology team to come talk to me about changing her medication dosages... She started to perk up a little around 7pm so I said no to doing a lumbar puncture and asked if we could maybe go home and I'd call her regular doctors the next day... They FINALLY ok'd us to leave around 8pm but didn't get around to bringing discharge papers until almost 9pm. Again, picture this: 6 1/2 month pregnant me, with my purse, a daiper bag, a medication bad, hadn't eaten or had anything to drink for nearly 24 hours (except a granola bar I had in my purse for some unknown reason), with my disabled 2-year-old who also has had very little to eat. I was just so upset about the whole thing! I finally got London to drink the last of her bottle (which is a special diet so the hospital didn't have any more for her) and she was getting hungry again and they are taking their sweet time letting us go... I had to keep pushing my call button and bugging them... they were probably SO glad when I finally walked out the doors! She had another seizure last night at about 2am, she didn't get back to sleep after a while and slept til almost 8am this morning... When she woke up, she ate her bottle just fine but she just couldn't get a burp out... She was crying and crying and finally just puked everywhere. Then came the fever. So that's my little update- not very uplifting but hey, it's life I guess! I'll post again when something changes....

A fabulous mom shared this poem on Circle of Moms and I loved it so much I wanted to post it on my blog! It's such a wonderful message! Hope you all enjoy! (I changed it from saying 'his' and 'he' to saying 'her' and 'she')

Heaven's Very Special Child

A meeting was held quite far from Earth.
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.

Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets down there.

She may not run, or laugh, or play,
Her thoughts may seem quite far away.
In many ways she won't adapt
And she'll be known as handicapped.

So let's be careful where she's sent
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven's very special child.

By: Edna Massionilla
December, 1981

Here are a few pictures of London in her 'stander'. She's not too fond of it but she's getting better about spending time in it.Hopefully we'll see some good results from it!

Did I speak too soon...?

Well, for a while there, London was going two to three days between seizures and I was so thrilled I posted it- then she started having one nearly everyday! :( Did I jinx her? She didn't have one last night but she did end up having one early this morning. It wasn't too bad but it breaks my heart every time no matter what. I recently began reading and commenting on posts from other moms of kids with seizure disorders on Circle of Moms- it's been so great to hear all the supportive stuff they say to one another and to me! I'm hoping more people will join my blog page and share the same kind of support so if any of you know someone who may be interested- send them the link! :)

London had another seizure last night... she was sound asleep again and at about one in the morning it started. It was maybe 15 minutes long... but the spasms came so close together she couldn't quite take a good breath between most of them. It breaks my heart. Afterward, she seemed like she was going to fall right back to sleep so I went back to bed- then she started whining and getting fussy. I went in and tried patting on her back for a while and talking to her but nothing was helping. I was so tired I just started to cry. Luckily Thomas came in and held her and rocked her and gave her a drink so I could go back to bed. He's pretty good about that- he usually knows when I'm just so tired and frustrated that he needs to come take over. So far this morning she seems to be doing fine... I'll see what today brings...

Well London had a yucky seizure last night... she was sound asleep and woke up jerking then went about 20 minutes having her usual spasms. I could tell it was hard on her this time though because not only did it wake her up and probably scare her but with each spasm she was crying out. I can't think of anything that occurred yesterday or that she ate yesterday that might have triggered it- in fact she had a good day! Thomas was giving her 'raspberries' on her cheeks and she was really smiling about that- she even came close to laughing! It was really something else to see her act that way, REAL smiles are very rare for her and the only time she's ever laughed is in her sleep- and the last time she even did that was a long time ago. She's still got a cough and a stuffy nose so I guess we'll see what today brings and I'll try to keep posting updates more often!

Well London is pretty much completely off the Ketogenic Diet now... she's loving all the foods she gets! She seems to be going about 3 days between seizures but I'm hoping that some of her teeth that have been bothering her will come through and she'll be having even fewer seizures. She's also had a little cough so maybe when that goes away she'll have even fewer! :) She's getting so big too! I think she's gained a pound or so since being off the diet, which we expected. She's not rolling completely over but she loves rolling onto her side- sometimes I think she does it because she gets sick of everyone in her face all the time! :) We're still working on building up her muscles and trying to get her to reach out for things all on her ow... it's an ongoing battle but I'm not giving up! I can tell sometimes when I look at her that she knows what we're saying, she just can't communicate back to us... so I continue to have hope- I can see in her eyes that she's just like every other almost-two-year-old!

We have started to wean London off of the Ketogenic diet and since going down on the ratio, she's gone nearly 5 days without a seizure!! Keeping our fingers crossed that it will continue like this!

Just a few pictures of London from February

Ketogenic Diet

London has been on the Ketogenic diet since mid-December now and we've seen very little in the way of getting her seizures under control. We are going to start weaning her off of it and then maybe try a different medication. Hopefully we can figure out how to get them to go away so she can start hitting some developmental milestones!

London's Bridge!

I'm new to blogging so I'm hoping that all this will turn out and that London'sBridge will be a place where moms and dads of specially-abled kids can come together for support, advice, information, and shoulders to lean on! Please, if you know someone who has a child with special needs, give them the blog address! You never know what kind of information can make the difference in the treatment of a special needs child!