Well, we're finally packed up & ready to go. The van is so stuffed,if the load shifts I know we'll turn over. I'm going have to keep my eyes peeled for all the runaway truck roads, we may need them.
Our week did not end without it's crisis. On wens, 1/2 an hour before I was to go to work, the clinical director called to say our insurance "Cigna" denied Ben's admission b/c "he wasn't sick enough". WHAT! She said I needed additional paperwork from Dr Wooten (Ben's neurologist) and I had to get it that day( apparently they wanted a precise description and total count of all his different seizures. They also wanted a physician's note. I guess even if Wooten says he needs the diet, they want to determine if he needs the diet. So I called everyone. Dr Wooten is out of town until Monday & his nurse praticioner was leaving to go to the airport. The secretary was really helpful, but ironically the clinic nurse was the one who gave me the hardest time. A lot of sighing & "well we definitely can't do this today, maybe by Monday". I told her that I was sorry for the last minute request but I really didn't cause the problem & could she just please help me out. She said "I'll see what I can do" but her tone told me that she wasn't going to do anything. Luckily I was able to get Ben's last neuro clinic note from Duke & they faxed it to JHU. Case closed right?.......Wrong!
Then today (Friday, I got another call from the clinic director stating that she got the fax & it looked good but that we are out of network & that the coverage is 60/40.I can't believe it, less than 18hrs to go before departure & we're having paperwork problems. It's like we're living in the new Michale Moore movie.
Middleclass folks just can't get a break.
Anyway, this time I called Cigna myself. No more relayed info. Turns out Cigna doesn't even have the written request for pre-approval. And they confirmed that JHU & it's Drs are all in network. PHEW! So, if it looks like it wasn't Cigna's fault (at least not this time). We just need JHU to submit the pre-spproval paperwork & I guess we're good to go . what worries me is that it seems like the JHU insurance people are confused by Ben's admission. I just know that we're going to get some crazy astronomically high bill about 2 weeks after we get home. Oh well, take one day at a time& we'll deal with it when it happens.
Now that we're almost there I'm getting a little nervous & anxious. I'm excited to go but I'm scared to death that the diet won't help or we can't get Ben to eat it.
What's there to do but try.
Well, wish us luck. We pull out in the morning. I'll keep posting as often to keep everyone updated. We'll be home in 2 weeks. Keep in touch.
-Meg
e premte, 29 qershor 2007
e martë, 26 qershor 2007
Take the good with the bad....
Today was another roller coaster ride in the McDaniel household. It started @ 7:30 with everyone getting up & ready to go in for Ben's pre-admission labs for JH. Ben had to be fasting so we woke him up last,put Emla cream on both arms to numb him up for the lab draw,collected a urine sample, put it on ice (there's no way I can get him to pee on demand in the lab,so I catch the first morning sample)& headed out the door.
The whole way there Ben kept asking for juice, then crackers (meaning his favorite cinnamon graham cracker sticks). This then got Grace asking for the same. I didn't give any to Grace b/c I didn't want to upset Ben. We got the appt by 9:03 (our appt was for 9am so this was on time for the McDaniel clan). we weren't seen until 9:40, the whole time I was in the waiting room, both kids were asking for food &/or trying to play with the other kids (the waiting area was packed).I am trying to keep Ben healthy before the admission & he already has a head cold so I was trying to minimize playtime with other sick kids in the waiting area. Once we finally were shown back to the lab area, I met a new phlebotomist (this was her first week) who asked me what labs I needed to have drawn & then proceeded to look then up them up in a lab processing manual. this was despite the fact that I had already faxed the request to the lab 2 weeks ago & just last week met with Ben's pediatrician & gave her a copy of the lab request. I handed the lady another copy of the lab request (I came prepared for this question). I explained to the new lady that I was concerned b/c Ben was fasting & that I had a urine sample in my bag which was now over an hour old. She then immediately looked at me and asked if Ben had eaten anything this morning and did I think he could pee in a cup b/c "we need a urine sample".
I knew then that things were going to get worse.
I tried to keep my cool b/c I really like the lab staff & they've always been great before. To sum it up it took 2 phlebotomists and 3 sticks to get the labs drawn. We left at 10:40. Unfortunately, when we got home the lab called to say they had a really weird result, probably from a clot & that meant we needed to do the lab again. I'm grateful that at least the lab result wasn't sent b/c I don't want anything to jeopardize our admission. So, I'm glad they called to ask for a repeat.
Things calmed down after that, everyone had lunch & a nap (well mom only had lunch). Then in the late afternoon, just to break up the monotony of 2hrs of peace & quiet. Emma our dog had a couple seizures in a row (some of you may know that our dog started having facial paralysis & seizures in April. I guess she thought she wasn't getting enough attention & saw how the seizures worked for Ben so she thought she'd give it a try!).
Once Emma settled & Ted got home, we went swimming. We had a great time. The water was clear & warm. Grace & Ben are both doing really well swimming. Grace is fearless & thinks she can swim. She actually kicks her legs & doggy-paddles with her arms (which I think is amazing for a 22 month old) but she sinks like a stone if you don't hold her up. Ben is cautious swimming but has gotten a lot better this year with a swim vest his Aunt Ann gave us. He loves to swim "on his own". Which means about 3-6 inches away.
Anyway, all was well for about 2 hrs & then when we came in Ben had a very long, very weird complex partial seizure. He came out of it with only one dose of Diastat but he was really slow to recover. It was almost as if he kept going back into a seizure. But the whole time he was seizing, he kept looking around & his eyes were open, with normal breathing so it was very hard to tell. This was his first big seizure in 3 1/2 weeks which is the longest we've gone all year. So we were expecting one. Ultimately, he recovered well & we all had some graham crackers & milk before he went to bed.
Speaking of which, Ben is now sleeping in his crib converted to a toddler bed. He thinks this is very cool. He sometimes gets up in the middle of the night to turn on his fish lamp & every now & then we can hear him playing with his shoes which hang on the back of the door (don't ask me why). But overall, he's really been good about going to bed & going to sleep. He has also been taking naps in a roll out sleeping bag (borrowed from his friend Philip)which we'll use on our vacation. He's really liking both of them. It's so funny to see him come walking out of his room after a nap and say "morning" (even in the afternoon) with a big grin on his face. He thinks he's a big man.
We had a lovely day this past Saturday when our friends from church came over for a pool party. It was the end of a week of vacation bible school & we had everyone over to swim. It was so much fun to spend time with everyone. The kids were hysterical jumping off the diving board & it was so funny & sweet to see Ginny Chorley sitting in the pool with all her clothes on (we had more little ones then big people in the shallow end & she jumped in, literally, to help out). Our church friends have been so kind & supportive, we're so glad we've found such a wonderful church family.
Actually I have to say that Ted and I have always been blessed with loving supportive people in our lives. Whether it's been from family members, church family, friends or coworkers. We've turned to the people in our lives over & over again & they have always been there to help us. Often they're there before we even know we need them. As we've been getting ready for our trip north, I have been overwhelmed by the amount of the help we been given, all kinds of help. Offers to take care of Grace, advice on directions & where to stay, offers of a family home to stay in from friends in both MD & Delaware,offers to take care of Emma,generous financial help,a friend mailed us her gram scale that she used when her son was on the diet, my mom & dad cleaned almost the entire house on their last visit, even the offer to come with us from someone who has a very busy personal & professional schedule of her own.
I am so grateful for the loving, supportive & generous people we know. It's b/c of their help we've managed to come this far, and also because of them that I know we'll be able to get through the next part of our journey. You learn to take the good with the bad. To make big celebrations over little moments and to turn to the good people in your life when you need them.
The whole way there Ben kept asking for juice, then crackers (meaning his favorite cinnamon graham cracker sticks). This then got Grace asking for the same. I didn't give any to Grace b/c I didn't want to upset Ben. We got the appt by 9:03 (our appt was for 9am so this was on time for the McDaniel clan). we weren't seen until 9:40, the whole time I was in the waiting room, both kids were asking for food &/or trying to play with the other kids (the waiting area was packed).I am trying to keep Ben healthy before the admission & he already has a head cold so I was trying to minimize playtime with other sick kids in the waiting area. Once we finally were shown back to the lab area, I met a new phlebotomist (this was her first week) who asked me what labs I needed to have drawn & then proceeded to look then up them up in a lab processing manual. this was despite the fact that I had already faxed the request to the lab 2 weeks ago & just last week met with Ben's pediatrician & gave her a copy of the lab request. I handed the lady another copy of the lab request (I came prepared for this question). I explained to the new lady that I was concerned b/c Ben was fasting & that I had a urine sample in my bag which was now over an hour old. She then immediately looked at me and asked if Ben had eaten anything this morning and did I think he could pee in a cup b/c "we need a urine sample".
I knew then that things were going to get worse.
I tried to keep my cool b/c I really like the lab staff & they've always been great before. To sum it up it took 2 phlebotomists and 3 sticks to get the labs drawn. We left at 10:40. Unfortunately, when we got home the lab called to say they had a really weird result, probably from a clot & that meant we needed to do the lab again. I'm grateful that at least the lab result wasn't sent b/c I don't want anything to jeopardize our admission. So, I'm glad they called to ask for a repeat.
Things calmed down after that, everyone had lunch & a nap (well mom only had lunch). Then in the late afternoon, just to break up the monotony of 2hrs of peace & quiet. Emma our dog had a couple seizures in a row (some of you may know that our dog started having facial paralysis & seizures in April. I guess she thought she wasn't getting enough attention & saw how the seizures worked for Ben so she thought she'd give it a try!).
Once Emma settled & Ted got home, we went swimming. We had a great time. The water was clear & warm. Grace & Ben are both doing really well swimming. Grace is fearless & thinks she can swim. She actually kicks her legs & doggy-paddles with her arms (which I think is amazing for a 22 month old) but she sinks like a stone if you don't hold her up. Ben is cautious swimming but has gotten a lot better this year with a swim vest his Aunt Ann gave us. He loves to swim "on his own". Which means about 3-6 inches away.
Anyway, all was well for about 2 hrs & then when we came in Ben had a very long, very weird complex partial seizure. He came out of it with only one dose of Diastat but he was really slow to recover. It was almost as if he kept going back into a seizure. But the whole time he was seizing, he kept looking around & his eyes were open, with normal breathing so it was very hard to tell. This was his first big seizure in 3 1/2 weeks which is the longest we've gone all year. So we were expecting one. Ultimately, he recovered well & we all had some graham crackers & milk before he went to bed.
Speaking of which, Ben is now sleeping in his crib converted to a toddler bed. He thinks this is very cool. He sometimes gets up in the middle of the night to turn on his fish lamp & every now & then we can hear him playing with his shoes which hang on the back of the door (don't ask me why). But overall, he's really been good about going to bed & going to sleep. He has also been taking naps in a roll out sleeping bag (borrowed from his friend Philip)which we'll use on our vacation. He's really liking both of them. It's so funny to see him come walking out of his room after a nap and say "morning" (even in the afternoon) with a big grin on his face. He thinks he's a big man.
We had a lovely day this past Saturday when our friends from church came over for a pool party. It was the end of a week of vacation bible school & we had everyone over to swim. It was so much fun to spend time with everyone. The kids were hysterical jumping off the diving board & it was so funny & sweet to see Ginny Chorley sitting in the pool with all her clothes on (we had more little ones then big people in the shallow end & she jumped in, literally, to help out). Our church friends have been so kind & supportive, we're so glad we've found such a wonderful church family.
Actually I have to say that Ted and I have always been blessed with loving supportive people in our lives. Whether it's been from family members, church family, friends or coworkers. We've turned to the people in our lives over & over again & they have always been there to help us. Often they're there before we even know we need them. As we've been getting ready for our trip north, I have been overwhelmed by the amount of the help we been given, all kinds of help. Offers to take care of Grace, advice on directions & where to stay, offers of a family home to stay in from friends in both MD & Delaware,offers to take care of Emma,generous financial help,a friend mailed us her gram scale that she used when her son was on the diet, my mom & dad cleaned almost the entire house on their last visit, even the offer to come with us from someone who has a very busy personal & professional schedule of her own.
I am so grateful for the loving, supportive & generous people we know. It's b/c of their help we've managed to come this far, and also because of them that I know we'll be able to get through the next part of our journey. You learn to take the good with the bad. To make big celebrations over little moments and to turn to the good people in your life when you need them.
e hënë, 18 qershor 2007
Ben's Birthday
We celebrated Ben's 4th birthday yesterday. We had a bunch of friends & family over for a pool party & did a "finding Nemo" theme (it seemed appropriate for a pool party). The weather was beautiful & we all had a wonderful time. Ben still wears a vest when he swims but this year he's swimming better than ever, He's very confident & swims all over the pool ( of course we always watch him like a hawk & stay close). He's so funny b/c he loves "jumping" off the steps into the pool. He does this great big build up & then sort of slides into the pool instead of jumping. He thinks he's Greg Louganis & we always make a big fuss.
Ben always loves cake & candles & singing but this year I think he really understood that everyone was singing for him. He was so cute b/c he had this huge grin but was also kind of shy. It was also the first time he really got into blowing out the candles. It was really sweet & lots of fun to watch.
Hopefully, if the diet works, it'll be a long time before he can have cake & ice cream again. So I'm so glad we had a big party. And I'm so glad we had so many loving friends & family to celebrate with us. I posted a link to pics from the party (actually Ted did it, I couldn't make it work!)
Hope you enjoy them.
Ben always loves cake & candles & singing but this year I think he really understood that everyone was singing for him. He was so cute b/c he had this huge grin but was also kind of shy. It was also the first time he really got into blowing out the candles. It was really sweet & lots of fun to watch.
Hopefully, if the diet works, it'll be a long time before he can have cake & ice cream again. So I'm so glad we had a big party. And I'm so glad we had so many loving friends & family to celebrate with us. I posted a link to pics from the party (actually Ted did it, I couldn't make it work!)
Hope you enjoy them.
e martë, 12 qershor 2007
Ben's story
This blog has been set up for our son Benjamin McDaniel. Ben was diagnosed with multi-focal epilepsy when he was 9 months old. He has suffered a variety of seizures ever since and they have increased in frequency. Yesterday he turned 4 yrs old.These past few years have been an emotional roller coaster ride complete with ambulance rides, hospitalizations, buckets of medications & hours of therapy.
Through it all we've had many people helping us on our journey. Amazing physicians & specialists, dedicated & supportive therapists & teachers,loving friends & family. In a few weeks the next step in our journey takes us to Johns Hopkins Hospital for admission into their ketogenic diet program. This will require a week long in-patient stay. We set up this blog so that everyone who cares about Ben can check on him while he's in the hospital. We'll update the blog daily, if possible. We value all of the love, prayers & support from the wonderful people who are a part of Ben's life. We look forward to hearing from you all & appreciate your continued, love, support & prayers.
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