So as it gets closer to the holidays, of course many of us start thinking about photo cards to send to all our loved ones...
Ever tried Shutterfly?? If not, YOU MUST! They have a huge selection of fabulous holiday cards! I won't go anywhere else for my cards and here's why:
1. It's SO easy!! With London's disabilities, I can't just pack the kids up any time I want to and run errands. With Shutterfly, all I have to do is upload my photos, choose my card, and personalize my message! I can do it between diaper changes and feedings!!
2. It's free to sign up! There's NO charge for getting a Shutterfly account! Can you beat that??
3. They deliver!! That's right, my cards come right to my mailbox. I don't have to brave the winter roads or the holiday shoppers to pick up my fun photo cards!
My favorite holiday cards are the ones with multiple images- I can do a family photo and one of each of my kids on the same card! I love it! I love that my kids can be in the spotlight but I can still add a photo of all of us together. For Christmas this year I plan on doing just that! :)
Not only does Shutterfly offer all these great cards, but they have TONS of photo gifts as well! Puzzles, mugs, calendars, photo books, mousepads, magnets, and lots more! Check them out and get all your Christmas shopping done in one online stop!
Here's a link to the hippest cards around!
http://www.shutterfly.com/cards-stationery/holiday-cards
Friday, November 19, 2010
Monday, August 2, 2010
A Little Since June...
So the day after my last post, we had to take London to the ER because she had a fever that just would not break, she wouldn't eat or drink, and she just cried and fussed nonstop. They couldn't find any reason for her to have a fever but I really think it was just from her Topomax, which makes it so that she can't sweat, and the high temps that day... Her fever was 102.5 and she was very dehydrated. They gave her IV fluids and sent us home...
As of this posting, she's down to about one seizure per week; although she is having a lot of what I call, "seizure activity". Her little body will start to go into a seizure- the clenching of all the muscles in her little body at once, the quivering, the glazed over eyes- but I can usually talk to her and she can somehow fight it off.
We had some family pictures done in July- London actually did better than we thought she would. It was a super hot day and we were very worried about her getting TOO hot again and having to take her back to the ER but between shots, we kept her in the shade and gave her lots of cool juice. The pictures turned out cute and I can't wait to get one up on our wall! :)
We got London's EagleEye system in July and it's been so great! She hasn't had a lot of good days where she's been able to tolerate anything, much less being hooked up to it, but we've done it a few times and it's nice knowing that we can do it any time! :)
Here's a picture she 'painted' for my brother, who's serving in the Army in Afghanistan! She has 'painted' many times, but this is the first time I've ever seen her do a pattern like this...
Here are some more pictures of London using the system:
Our next big hurdle will be taking London to the dentist and then she'll start preschool in October! I will update as they take place!
As of this posting, she's down to about one seizure per week; although she is having a lot of what I call, "seizure activity". Her little body will start to go into a seizure- the clenching of all the muscles in her little body at once, the quivering, the glazed over eyes- but I can usually talk to her and she can somehow fight it off.
We had some family pictures done in July- London actually did better than we thought she would. It was a super hot day and we were very worried about her getting TOO hot again and having to take her back to the ER but between shots, we kept her in the shade and gave her lots of cool juice. The pictures turned out cute and I can't wait to get one up on our wall! :)
We got London's EagleEye system in July and it's been so great! She hasn't had a lot of good days where she's been able to tolerate anything, much less being hooked up to it, but we've done it a few times and it's nice knowing that we can do it any time! :)
Here's a picture she 'painted' for my brother, who's serving in the Army in Afghanistan! She has 'painted' many times, but this is the first time I've ever seen her do a pattern like this...
Here are some more pictures of London using the system:
Our next big hurdle will be taking London to the dentist and then she'll start preschool in October! I will update as they take place!
Thanks for crossing London's Bridge!
Thursday, June 17, 2010
A little catching-up
SO much has happened in the last few months! I am on Facebook all the time, why can't I ever seem to update London's blog?!?
Anyway, back in April London was started on a new medicine: Banzel. It took a while for us to see any results but for the past month she has been down to only about 1 seizure per week, so I guess it's working a little. The only downside is that when she does have a seizure, it seems to be much harder on her. Her neurologist mentioned a VNS (vagal nerve stimulator) so that's something we need to think about. I'm still researching but as of now, I'm trying to hang on to the hope that we can get these dang seizures under control with medication; although maybe a VNS would be better...
For info on VNS: http://www.epilepsy.com/epilepsy/vns
Also back in April we did some fundraising to earn money to buy London (and another child who could benefit from it) an EagleEye system.
http://www.ofoa.net/EagleEyes.aspx
http://www.bc.edu/schools/csom/eagleeyes/
This is an amazing tool for kids like London who have limited or no movement. We sold candy bars (thanks, Della!), cookie dough (thanks Nykele!), had a yard sale and raffled off some great items. Thank you SO much to everyone who supported out efforts!! The yard sale was a HUGE success and we raised enough money just from that to buy an entire system! Our raffles were also a huge help- we had a Browning clock, 2 New Image Day Spa gift certificates, a Papa Murphey's gift basket, a rag quilt, and Willard Bay Gardens gift certificate all DONATED just to help little London! We can't even express how touched we are that so many people would help us like that! How lucky we are to have so many loving, generous people in our lives! Not only that, but many complete strangers helped out, too! Willard Bay Gardens had an adorable poster up with London's pictures and information to get people to buy candy bars to help out, but so many people just made donations to her. It's things like this that remind me that there really are good people out there. It's easy to forget when no one will even open the door for a woman pushing a stroller anymore!
We are hanging in there, even though sometimes I want to just throw in the towel! I'm lucky that I have been able to meet a few other moms whose kiddos have similar struggles to London's. They are such an inspiration to me! Having someone to talk to that can relate to the ups-and-downs is really nice. No matter how alone I may feel, there are people out there who are in similar situations, and it's been very therapeutic for me to be able to talk to them. (you know who you are! Thanks!)
London also got a new haircut! :) She was constantly getting her fingers tangled in her hair because she likes to rest with her hands behind her head. So when she'd pull her hands out from under her head, she'd pull hair out, too. :( So, we chopped it short! It's just a spikey little 'do! I think she likes it though, it probably helps keep her cool and now that it's not always in her face maybe she'll be more comfortable. Pics to come! :)
Anyway, back in April London was started on a new medicine: Banzel. It took a while for us to see any results but for the past month she has been down to only about 1 seizure per week, so I guess it's working a little. The only downside is that when she does have a seizure, it seems to be much harder on her. Her neurologist mentioned a VNS (vagal nerve stimulator) so that's something we need to think about. I'm still researching but as of now, I'm trying to hang on to the hope that we can get these dang seizures under control with medication; although maybe a VNS would be better...
For info on VNS: http://www.epilepsy.com/epilepsy/vns
Also back in April we did some fundraising to earn money to buy London (and another child who could benefit from it) an EagleEye system.
http://www.ofoa.net/EagleEyes.aspx
http://www.bc.edu/schools/csom/eagleeyes/
This is an amazing tool for kids like London who have limited or no movement. We sold candy bars (thanks, Della!), cookie dough (thanks Nykele!), had a yard sale and raffled off some great items. Thank you SO much to everyone who supported out efforts!! The yard sale was a HUGE success and we raised enough money just from that to buy an entire system! Our raffles were also a huge help- we had a Browning clock, 2 New Image Day Spa gift certificates, a Papa Murphey's gift basket, a rag quilt, and Willard Bay Gardens gift certificate all DONATED just to help little London! We can't even express how touched we are that so many people would help us like that! How lucky we are to have so many loving, generous people in our lives! Not only that, but many complete strangers helped out, too! Willard Bay Gardens had an adorable poster up with London's pictures and information to get people to buy candy bars to help out, but so many people just made donations to her. It's things like this that remind me that there really are good people out there. It's easy to forget when no one will even open the door for a woman pushing a stroller anymore!
We are hanging in there, even though sometimes I want to just throw in the towel! I'm lucky that I have been able to meet a few other moms whose kiddos have similar struggles to London's. They are such an inspiration to me! Having someone to talk to that can relate to the ups-and-downs is really nice. No matter how alone I may feel, there are people out there who are in similar situations, and it's been very therapeutic for me to be able to talk to them. (you know who you are! Thanks!)
London also got a new haircut! :) She was constantly getting her fingers tangled in her hair because she likes to rest with her hands behind her head. So when she'd pull her hands out from under her head, she'd pull hair out, too. :( So, we chopped it short! It's just a spikey little 'do! I think she likes it though, it probably helps keep her cool and now that it's not always in her face maybe she'll be more comfortable. Pics to come! :)
Thursday, January 14, 2010
London's story
So I told a few people that I would share the story of London's arrival so here it is: My pregnancy went fine, other than the fact that I was sick the ENTIRE time. Right up until the day I delivered. It was horrible, I was weak a lot and there were many times that I'd be just sitting on the couch and everything would just go black. Other than being sick, physically I felt pretty good. My back never hurt (the only time in my life I can remember it NOT hurting), and I could move around pretty good right up to the end.
I was scheduled to work my last day about 2 1/2 weeks before my due date. a few days before my last day at work, I had a doctor appointment and she told me that my amniotic fluid was pretty low and to really pay attention to how much London moved in the next week or so. She wasn't really TOO concerned with it so neither was I and besides, London moved NON STOP!! I swear she never slept and never just relaxed! But I loved feeling her move! My little angel! Anyway, I went to my last day of work (I was working a closing shift, setting an ad) and I was feeling pretty good. I think I probably puked only a few times that day. :) Work went fine and when I got home around 10pm I decided to put my feet up and relax...which is when London would really bounce around in my tummy! Only this time she didn't... come to think of it, she hadn't really moved around all day. Of course when I came to this realization, I panicked because of what the doctor had said.
So I called my mom. Funny that I didn't call my doctor first, but for some reason it made sense to me to get my mom's opinion first. Of course she told me to call my doctor! :) When I talked to my doctor she was pretty calm but she did tell me to get to the hospital immediately. And to take my bag... She told me that more than likely everything was fine but that they'd hook me up to the monitors just to be sure. I called my mom back, asked her to meet me there, and drove to the hospital (Thomas was working and I called him on my way and said that if I was still there when he got off work to come to the hospital).
Once I got there and explained my situation and what my doctor had said, they took me back to a small room, had me get into a hospital gown and hooked me up to the monitors to check my heart rate, the baby's heart rate and my blood oxygen level. My mom showed up shortly after I was all hooked up and after that we just sat and waited a while. It was almost 11:30pm by now. My heart rate was great and so was my blood oxygen. But London's heart rate was kind of slow and she wasn't moving at all. The nurse called my doctor and they decided to induce labor. I called Thomas and he came up to the hospital to be with me. My mom stayed, too.
They gave me the first round of Pitocin at about midnight and told me to try and get some rest, that it would still be quite a while because when I went in I was only dilated to about a 1. So me, my husband, and my mom slept a little between the nurses coming in to check me and anticipation.
Let me just say at this time that for my whole pregnancy I had joked saying, "I just want to schedule a C-section. That will be easier." Everyone laughed it off and of course I never asked my doctor to schedule a C-section that wasn't necessary. So sitting there in the hospital bed, being given more Pitocin every once in a while I kept thinking, 'This is going to end in a C-section'. I kept my mouth shut for the most part.
I started to feel my contractions very early the morning after going into the hospital so they gave me more Pitocin to speed things up. That's when things sort of started to go wrong. London's heart beat was a little erratic but with the Pitocin, it went completely nuts. One second it would be at only 76BPM then it would immediately shoot up to over 200BPM. The nurse called my doctor who came in to check on me before she went up to the clinic for her regular appointments. Everyone was very calm but I just knew how it would end-with me on an operating table being cut open. And I was ok with that; I felt mentally prepared.
My husbands parents decided to come up to the hospital and wait for their 2nd grandchild, their first granddaughter, to be born. That's when I decided to get my epidural. My contractions were nowhere near unbearable but I didn't want my in-laws to be in the room while my nurse coached me through any kind of painful contraction. The epidural kicked right in and I couldn't feel a thing! :) I loved it.
Even though everyone was still relatively calm, my nurse gave all her other patients to other nurses and kept a very close eye on London's heart rate. My doctor came by again on her lunch, at about 11:30am, and told me she'd come by again that afternoon but that she'd be ready in case things sped up quickly and I was ready to deliver. I felt like I was in good hands with my nurse and my doctor so I wasn't worried. Just after being checked by my doctor, my nurse came in and checked me and looked a little worried. We all kind of were because we could see London's heart rate doing all this weird stuff. My nurse left and for about 45 seconds after that everything seemed pretty routine: we'd keep waiting. My father-in-law and husband went down the hall to find a soda machine. I felt fine.
That's when the door burst back open and all of the sudden I had 3 different nurses unhooking my machine, taking my rings and earrings off of me, forcing me to drink something truly awful tasting, and telling me that we had to get the baby out "NOW". Oddly enough, I was still very calm. My mom and dad (who had come to the hospital not long before) looked a little panicked as the left the room and my mother-in-law jumped up to go find my husband to tell him to get his butt down there.
When my husband and his dad saw my mother in law in the hall, looking panicked, they ran to my room to find out what was going on. While my mother-in-law explained to my father-in-law, a nurse threw a pair of scrubs at my husband and told him to hurry up. This all happened in about 90 seconds and then I was being rushed down the hall to the OR. And I was still pretty calm. Like I said, I felt pretty prepared for this outcome.
Luckily I had already got my epidural so they didn't waste any time getting London out safely. We got to the OR, they moved me onto the operating table from my hospital bed, hung the sheet up and cut! My doctor must have not even left the hospital for lunch because by the time they got me from my room to the OR, she was there, scrubbed in, ready to go. It was very reassuring to see her face! I remember a nurse counting tools..."1 2 3 4 5 6..." all the way up to, if I remember correctly, "20". She just kept counting and I finally asked, are you counting them to be sure there's nothing left in my stomach. Yes, they were. (Good thing she was still able to count 20 tools after I was all stapled up!)
Soon enough we heard "it's a girl"! Well, I heard that- Thomas was able to stand up and watch the whole procedure so he got to see London right when the doctor did. I was given more drugs, told I'd soon not even be able to feel my eyelids, stapled up, moved back onto my hospital bed and taken back to my room.
I was pretty out-of-it so I didn't really make a big deal out of the whole situation, even when Thomas came in the room and handed London to me. (I have no idea why they let him walk down the hall to the room HOLDING her, their policy is that whenever the baby leaves the room, she must be in the bassinet). But, who cares? I had my little girl! It was still a miracle, even though I had to have a C-section!
My doctor came in later that evening to check on me and told me that I'd heal faster if I got up and walked around as soon as I could. So I did!! As soon as I could feel my legs and they took my catheter out, I walked the halls with my husband and our brand new little bundle!
My recovery with London took a good 2 months because it was an emergency C-section and my body was shocked more than it would have been with a scheduled C-section. But I didn't push myself and I listened to my body- I never tried to do anything if my body was telling me it was too much. But overall, it wasn't bad and I chose to do it again when I had our second baby, Kannon, two years later. I'll share his story a different time...
So there it is. London's story.
I was scheduled to work my last day about 2 1/2 weeks before my due date. a few days before my last day at work, I had a doctor appointment and she told me that my amniotic fluid was pretty low and to really pay attention to how much London moved in the next week or so. She wasn't really TOO concerned with it so neither was I and besides, London moved NON STOP!! I swear she never slept and never just relaxed! But I loved feeling her move! My little angel! Anyway, I went to my last day of work (I was working a closing shift, setting an ad) and I was feeling pretty good. I think I probably puked only a few times that day. :) Work went fine and when I got home around 10pm I decided to put my feet up and relax...which is when London would really bounce around in my tummy! Only this time she didn't... come to think of it, she hadn't really moved around all day. Of course when I came to this realization, I panicked because of what the doctor had said.
So I called my mom. Funny that I didn't call my doctor first, but for some reason it made sense to me to get my mom's opinion first. Of course she told me to call my doctor! :) When I talked to my doctor she was pretty calm but she did tell me to get to the hospital immediately. And to take my bag... She told me that more than likely everything was fine but that they'd hook me up to the monitors just to be sure. I called my mom back, asked her to meet me there, and drove to the hospital (Thomas was working and I called him on my way and said that if I was still there when he got off work to come to the hospital).
Once I got there and explained my situation and what my doctor had said, they took me back to a small room, had me get into a hospital gown and hooked me up to the monitors to check my heart rate, the baby's heart rate and my blood oxygen level. My mom showed up shortly after I was all hooked up and after that we just sat and waited a while. It was almost 11:30pm by now. My heart rate was great and so was my blood oxygen. But London's heart rate was kind of slow and she wasn't moving at all. The nurse called my doctor and they decided to induce labor. I called Thomas and he came up to the hospital to be with me. My mom stayed, too.
They gave me the first round of Pitocin at about midnight and told me to try and get some rest, that it would still be quite a while because when I went in I was only dilated to about a 1. So me, my husband, and my mom slept a little between the nurses coming in to check me and anticipation.
Let me just say at this time that for my whole pregnancy I had joked saying, "I just want to schedule a C-section. That will be easier." Everyone laughed it off and of course I never asked my doctor to schedule a C-section that wasn't necessary. So sitting there in the hospital bed, being given more Pitocin every once in a while I kept thinking, 'This is going to end in a C-section'. I kept my mouth shut for the most part.
I started to feel my contractions very early the morning after going into the hospital so they gave me more Pitocin to speed things up. That's when things sort of started to go wrong. London's heart beat was a little erratic but with the Pitocin, it went completely nuts. One second it would be at only 76BPM then it would immediately shoot up to over 200BPM. The nurse called my doctor who came in to check on me before she went up to the clinic for her regular appointments. Everyone was very calm but I just knew how it would end-with me on an operating table being cut open. And I was ok with that; I felt mentally prepared.
My husbands parents decided to come up to the hospital and wait for their 2nd grandchild, their first granddaughter, to be born. That's when I decided to get my epidural. My contractions were nowhere near unbearable but I didn't want my in-laws to be in the room while my nurse coached me through any kind of painful contraction. The epidural kicked right in and I couldn't feel a thing! :) I loved it.
Even though everyone was still relatively calm, my nurse gave all her other patients to other nurses and kept a very close eye on London's heart rate. My doctor came by again on her lunch, at about 11:30am, and told me she'd come by again that afternoon but that she'd be ready in case things sped up quickly and I was ready to deliver. I felt like I was in good hands with my nurse and my doctor so I wasn't worried. Just after being checked by my doctor, my nurse came in and checked me and looked a little worried. We all kind of were because we could see London's heart rate doing all this weird stuff. My nurse left and for about 45 seconds after that everything seemed pretty routine: we'd keep waiting. My father-in-law and husband went down the hall to find a soda machine. I felt fine.
That's when the door burst back open and all of the sudden I had 3 different nurses unhooking my machine, taking my rings and earrings off of me, forcing me to drink something truly awful tasting, and telling me that we had to get the baby out "NOW". Oddly enough, I was still very calm. My mom and dad (who had come to the hospital not long before) looked a little panicked as the left the room and my mother-in-law jumped up to go find my husband to tell him to get his butt down there.
When my husband and his dad saw my mother in law in the hall, looking panicked, they ran to my room to find out what was going on. While my mother-in-law explained to my father-in-law, a nurse threw a pair of scrubs at my husband and told him to hurry up. This all happened in about 90 seconds and then I was being rushed down the hall to the OR. And I was still pretty calm. Like I said, I felt pretty prepared for this outcome.
Luckily I had already got my epidural so they didn't waste any time getting London out safely. We got to the OR, they moved me onto the operating table from my hospital bed, hung the sheet up and cut! My doctor must have not even left the hospital for lunch because by the time they got me from my room to the OR, she was there, scrubbed in, ready to go. It was very reassuring to see her face! I remember a nurse counting tools..."1 2 3 4 5 6..." all the way up to, if I remember correctly, "20". She just kept counting and I finally asked, are you counting them to be sure there's nothing left in my stomach. Yes, they were. (Good thing she was still able to count 20 tools after I was all stapled up!)
Soon enough we heard "it's a girl"! Well, I heard that- Thomas was able to stand up and watch the whole procedure so he got to see London right when the doctor did. I was given more drugs, told I'd soon not even be able to feel my eyelids, stapled up, moved back onto my hospital bed and taken back to my room.
I was pretty out-of-it so I didn't really make a big deal out of the whole situation, even when Thomas came in the room and handed London to me. (I have no idea why they let him walk down the hall to the room HOLDING her, their policy is that whenever the baby leaves the room, she must be in the bassinet). But, who cares? I had my little girl! It was still a miracle, even though I had to have a C-section!
My doctor came in later that evening to check on me and told me that I'd heal faster if I got up and walked around as soon as I could. So I did!! As soon as I could feel my legs and they took my catheter out, I walked the halls with my husband and our brand new little bundle!
My recovery with London took a good 2 months because it was an emergency C-section and my body was shocked more than it would have been with a scheduled C-section. But I didn't push myself and I listened to my body- I never tried to do anything if my body was telling me it was too much. But overall, it wasn't bad and I chose to do it again when I had our second baby, Kannon, two years later. I'll share his story a different time...
So there it is. London's story.
Wednesday, January 13, 2010
Wow! It's been a long time since I last posted! I'm sort of a Blog Slacker... London is doing ok, she has her bad times and her good. This past week and a half or so has been pretty rough on her due to increased seizures. Thomas has been trying to get her off of coconut milk (she was drinking that from when she was on the Ketogenic diet) and used to regular milk but I'm not so sure it's the best thing right now. For about a week she was getting quite a bit of it, and keeping it down but she was having super yucky seizures everyday. When she threw up all over my living room I decided to stop giving her milk and go back to her coconut milk and see what happened. That night she didn't have a seizure.... although this morning she did again. I'm hoping that once all her teeth come through the gums (she's still got 9 to go, and they all seem to be trying to come in at the same time) she'll have decreased seizures and maybe even smile again!
She's getting big so fast! We recently had her measured for a wheelchair and I think that will be so great for her! Hopefully her core muscles will get strong enough that she'll be able to sit up by herself soon.
Kannon is also getting big-he's two months old now and we just had him blessed on Jan. 10th. He looked so handsome in his little white suit! He's starting to try to use his hands and he's smiling quite a bit. He coos at me a lot and I just love knowing that pretty soon I will be able to hear one of my kids say 'mama'! I think he will be so good for London, too. I can tell that when she is upset, he gets upset. He doesn't like his big sister to be sad!
I've been trying to get my desktop computer set up so that I can update my blog on a more regular basis and post more pictures! Til then, thanks everyone for all the support you've given us through the good times and the bad!
She's getting big so fast! We recently had her measured for a wheelchair and I think that will be so great for her! Hopefully her core muscles will get strong enough that she'll be able to sit up by herself soon.
Kannon is also getting big-he's two months old now and we just had him blessed on Jan. 10th. He looked so handsome in his little white suit! He's starting to try to use his hands and he's smiling quite a bit. He coos at me a lot and I just love knowing that pretty soon I will be able to hear one of my kids say 'mama'! I think he will be so good for London, too. I can tell that when she is upset, he gets upset. He doesn't like his big sister to be sad!
I've been trying to get my desktop computer set up so that I can update my blog on a more regular basis and post more pictures! Til then, thanks everyone for all the support you've given us through the good times and the bad!
Friday, November 13, 2009
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!
Thursday, September 3, 2009
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....
Thursday, August 27, 2009
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
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! :)
Wednesday, August 26, 2009
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...
Monday, August 24, 2009
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!
Friday, August 21, 2009
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!
Saturday, June 20, 2009
Friday, June 12, 2009
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!
Sunday, May 31, 2009
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!
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