tag:blogger.com,1999:blog-25563457770278447322012-02-16T00:03:57.194-08:00Raising our precious girl with Dravet SyndromePaulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.comBlogger331100tag:blogger.com,1999:blog-2556345777027844732.post-31386836953430556242011-05-13T14:07:00.000-07:002011-05-13T14:11:26.220-07:00

Alyssa went 8 months seizure free. This was a record for her. She had a small, short seizure this afternoon.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com3tag:blogger.com,1999:blog-2556345777027844732.post-27175815157203637152011-05-13T11:44:00.000-07:002011-05-13T12:04:49.513-07:00

We celebrated Alyssa's birthday 4 times this year... She loves birthdays, and we took full advantage of celebrating her. Here is photos of three of the four celebrations.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-13556198045650815822010-04-26T21:51:00.000-07:002010-04-26T21:55:50.491-07:00

Wanted to share with you the good news.... Alyssa has been seizure free for 4 months and 2 weeks. She has only had 2 seizures in the past 8 months. We are so happy to share this news.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com2tag:blogger.com,1999:blog-2556345777027844732.post-14903521367889441192010-03-04T15:50:00.000-08:002010-03-04T16:00:28.295-08:00

The UPS man delivered Alyssa's long awaited push chair/jogger yesterday, we had to take it out for a quick ride. It has a bit of growing room all over, and a lot of growing area for her legs, the plus side of this is Lauryn can hitch a ride sitting between her legs on a blanket.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com1tag:blogger.com,1999:blog-2556345777027844732.post-82031384719792310402010-03-04T15:21:00.000-08:002010-03-04T15:29:39.928-08:00

Alyssa's Fancy Nancy birthday cake (02.10.2010)

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-13579428592741557852010-03-02T15:07:00.000-08:002010-03-02T15:08:40.606-08:00

I have wanted to post an update here for a while now, however time and energy have been needed and I often seem to be short on both. Alyssa needed a few weeks of extra rest to get back on track after her 14 day stay in the hospital, she tires easy as it is, so after spending time not using her muscles she had some work to do. She has low muscle tone and can only walk short distances before she

a girl with an opinionnoreply@blogger.com6tag:blogger.com,1999:blog-2556345777027844732.post-16054059347186796972010-02-10T14:58:00.000-08:002010-03-02T15:00:08.895-08:00

Alyssa's birthday party at school

a girl with an opinionnoreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-8577146332766525852010-01-15T16:55:00.000-08:002010-01-15T17:07:33.913-08:00

Alyssa's room in the ICU. Day 4 of 8 sedated on the ventilator.Alyssa sedated, and on the ventilator. Alyssa day 11 in ICU, 2 days off the ventilator.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com1tag:blogger.com,1999:blog-2556345777027844732.post-921800903243998862009-12-25T10:00:00.000-08:002009-12-26T18:13:56.615-08:00

Alyssa had a good night’s sleep for her first night back at home, I had to wake her twice for her medications as she is on a 14 day wean off the narcotics that were used to sedate her. We are hoping that this wean will work well for her little body and she won't have withdrawal symptoms as bad as she was having at the hospital. We are working with her doctors to ensure that this process goes

a girl with an opinionnoreply@blogger.com8tag:blogger.com,1999:blog-2556345777027844732.post-27257689564949075492009-12-24T16:30:00.000-08:002009-12-24T17:47:56.415-08:00

Alyssa was discharged from the hospital and we are on our way home! Thank you for all your thoughts, prayers and love. Wishing you all a Merry Christmas!

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com1tag:blogger.com,1999:blog-2556345777027844732.post-28206552447525142492009-12-23T10:21:00.000-08:002009-12-24T17:46:46.600-08:00

Tuesday: It was a very crazy day here at Mary Bridge Children’s Hospital, Alyssa kind of hit a bump in the road and was showing signs of possible seizure activity. She was very tired and seemed kind of incoherent , an EEG monitor was brought in and hooked up to see what was going on, looks as if now it is just jerking and twitching from the narcotic withdraws. She got her first shower tonight and

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-31470216528691776472009-12-21T21:17:00.000-08:002009-12-24T16:54:28.019-08:00

We got moved out of ICU almost a day early! The doctor’s were pleased with Alyssa's progress today and the ICU was getting pretty full with other sick little ones. The respiratory therapists are continuing to do work on her to loosen up her lungs and work out the rattle. We have been informed by the doctor that Alyssa can go home when she can breathe on her own and keep her oxygen saturation

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com5tag:blogger.com,1999:blog-2556345777027844732.post-65175192220015840372009-12-21T14:06:00.000-08:002009-12-21T14:07:46.284-08:00

Today is day 11 in ICU, Alyssa has had two days of hard work and she is doing awesome. She is napping right now, so I am taking this moment to post an update. She started perking up yesterday after a 3 1/2 hour nap, so we took a wagon ride around the ward as they moved her bed out and brought in a 'cage' she says, she told us she is a lion :) She was trying to get out of her bed yesterday so

a girl with an opinionnoreply@blogger.com2tag:blogger.com,1999:blog-2556345777027844732.post-17850571317305197662009-12-19T16:38:00.001-08:002009-12-19T16:39:34.769-08:00

I am filled with anxiety for the unknown as I stand her waiting for Alyssa to wake up! The Dr made the call this morning that today would be the day that she would be taken off the ventilator! All of her sedation has been stopped and she is now triggering the ventilator 100% of her breaths. ********************************************************************************** Hooray! She is now off

a girl with an opinionnoreply@blogger.com7tag:blogger.com,1999:blog-2556345777027844732.post-45155889436763430872009-12-18T23:22:00.000-08:002009-12-19T07:53:33.162-08:00

A quick update before we go to bed, today was a good day for Alyssa, she was awake for a lot of the morning as they started weaning her off her ‘heavy sedation’ medications, and started her on ‘weaker sedation’. This is done to prepare her for the ventilator coming out and breathing on her own. When the weaker sedation is stopped she can be awake and able to function without the ventilator

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-63206345959241246422009-12-18T10:46:00.000-08:002009-12-19T07:44:12.432-08:00

Good morning!Last night’s respiratory therapist and this morning’s respiratory therapist decided that they would change some settings on Alyssa's ventilator and give her a day of resting. They are continuing to suction as needed, but no chest percussion or steroids, this is because they think it is mostly just fluid that is making the chest seem tight and the steroids aren't doing anything for

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com4tag:blogger.com,1999:blog-2556345777027844732.post-24961653925296847992009-12-17T23:49:00.000-08:002009-12-19T07:55:59.305-08:00

Today is pretty much the same as yesterday, Alyssa is moving around a lot more and opening those big brown eyes a bit more, they don't stay open very long though, we are looking forward to seeing them open consistently. Little sister Lauryn is sure missing her big sister, she appears to be getting a cold and I hope she doesn't get us sick or else we can't come to the hospital to be with our girl.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-74216286882019372702009-12-16T23:49:00.000-08:002009-12-17T11:51:10.889-08:00

Alyssa’s Chest xray looked better today than yesterday; it is so nice to hear of improvement each morning. When the doctor made his rounds this morning he decided that they would lower her muscle relaxant again, she has had a good day of breathing with the ventilator. As her respiratory therapist said tonight she has a bad case of pneumonia and it will take her time to get better. She can cough,

a girl with an opinionnoreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-53322090225856229942009-12-15T13:51:00.000-08:002009-12-16T13:39:47.380-08:00

I have learned that the words thank you don’t adequately express how we feel; the outpouring of support spiritually, physically and emotionally has been incredible. Greg and I are getting our rest as we know we need it as much as Alyssa does for the days ahead. We have been told that Alyssa will be sedated and on the ventilator for several more days, we are comfortable with this as we know that

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com10tag:blogger.com,1999:blog-2556345777027844732.post-82515848757242153902009-12-14T23:49:00.000-08:002009-12-15T14:18:55.506-08:00

From Paula:Her lungs are very tight. She is not wheezing anymore. She is getting lots of receptor therapy, and is responding well to it. The lowered her muscle relaxant today a bit and her eyes are opening a little.From Greg:Well its time to provide a status update on our little Alyssa.Today has been her best day thus far and it appears that she has responded well to the treatments the

a girl with an opinionnoreply@blogger.com5tag:blogger.com,1999:blog-2556345777027844732.post-52887484879880151832009-12-14T08:00:00.000-08:002009-12-14T12:08:59.690-08:00

Another good nights rest for Greg & I. I Forgot how nice a night of rest feels! No calls from the nurse, that means Alyssa had a ok night. Greg's Mom is in town & staying the night at our house with Lauryn. My parents fly in this afternoon from Calif. I spent several hours away from the hospital yesterday at home with Lauryn. It was so nice to be home, but so nice to come back to Greg & Alyssa.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com6tag:blogger.com,1999:blog-2556345777027844732.post-80373117999723243232009-12-14T02:07:00.000-08:002009-12-14T12:07:20.306-08:00

Alyssa spent a few hrs today breathing on her own... but then after blood work we realized her CO2 was getting to high. She is back on muscle relaxant, so the ventilator is back to doing the work for her so she can rest and heal. She is to sick to do it by her self now. She is very swollen, Dr upped her diuretic so she could shed some fluid via urine output. Goodnight all, thanks for all your

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com2tag:blogger.com,1999:blog-2556345777027844732.post-67001571668792880152009-12-13T20:24:00.000-08:002009-12-14T11:56:30.745-08:00

Settled in, temp down, on antibotics, Sp02 (oxygen saturation) is at 94 with oxygen. She goes between sleep and iritated. Gonna be a long night :/ Greg is home with Lauryn and we will switch in the am. No kids under 12 allowed at the hospital these days (cause of H1N1). Auntie Jennie was with us for a few hrs this eve :) Thanks for your thoughts. will keep u posted!

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-64809434016865035462009-12-13T12:56:00.000-08:002009-12-14T12:06:13.195-08:00

Just was kissing her all over and noticed her starting to breath again on her own..... :) Good sign as long as she doesn't try to override the ventilator as we want that to still help her :))))

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-54568031274025292722009-12-13T12:47:00.000-08:002009-12-14T12:05:24.584-08:00

Update: Chest xray still bad, but improved :) Labs better, feeding tube in place, lowered the muscle relaxant, when she is sleeping she is still and quiet. During 'awake' time she moves a bit. She has moved our hand while we hold it. Raised her eyebrows and attempted to open her eyes. All good progress signs. Good to see her resting and healing. Thanks again all!

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-34965857297135820382009-12-13T11:44:00.000-08:002009-12-14T11:47:25.349-08:00

Friday morning, December 11th, Alyssa, had a seizure while at home at approximately 9:30am. The seizure caused her to aspirate (throw up)-which ultimately went into her lungs; as a result of the amount of fluid which ended up in her lungs pneumonia developed causing her to have respiratory complications. We had almost reached the 4 month point of being seizure free, one of our longest records.

a girl with an opinionnoreply@blogger.com1tag:blogger.com,1999:blog-2556345777027844732.post-24780105794255897772009-12-13T08:24:00.000-08:002009-12-14T12:03:44.542-08:00

FYI: Some friends have already come by.... and I do know there are more wanting to. We are at Mary Bridge in Tacoma, PICIU, 7th floor. Please feel free and come and visits. Just no one that is sick or under the age of 12! Visiting hrs are like 8 to 8... I think? No more than 2 in the room at time.

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-78967383961784917772009-12-13T08:14:00.000-08:002009-12-14T12:03:02.538-08:00

I slept like a log, How do logs sleep? :) Guess that's what happens when you miss a full nights rest :p! No calls last night from Alyssa's AWESOME nurses, guess that means all is the same. She looked so peaceful and resting last night, the poor little girl was working so hard to breath and get well at the same time she... just needed a little help :)! She is resting and healing now. Thanks for

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-66962520483844559782009-12-13T00:40:00.000-08:002009-12-14T12:02:06.076-08:00

Alyssa is the same as last post. Greg and I are staying at the 'Tree House' An apartment for parents of ICU little ones. We are 1/2 block from Alyssa. Goodnight and thanks for all your thoughts and prayers! X0 ♥

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-51106839631358429702009-12-13T00:36:00.000-08:002009-12-14T12:00:50.805-08:00

Alyssa took a big turn for the worse she crashed a few hrs ago, her C02 was 80 normal is 40. They did an emergency ventilator sedation procedure. She is resting now and the ventilator is doing all the work for her. She will be this way for at least 7 days and up to 14. She is in a very critical state. The Dr told Greg that "we could loose her, she is not stable yet". Please keep her in you

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-32798804592415636422009-12-12T13:47:00.000-08:002009-12-14T11:59:35.794-08:00

Chest xray came back. Dr and RT are not pleased with the xray. It looks pretty bad :/ Their goal to keep her from being sedated on a ventilator. They are continuing breathing treatments of Albuteral and have added an IV drug of that same family to her IV to open her lungs up and get her some more air to breath. Her breathing is very labored and quick. Greg should be here soon, he will be here for

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-69971140472069124282009-12-12T09:17:00.000-08:002009-12-14T11:57:59.590-08:00

Alyssa is doing pretty good. The breathing treatments are helping. They took the nose oxygen out last night and went back to the mask, Sp02 levels at at 100 now. If she takes off the mask she drops fast into the 80's. Her chest is very "ratley", and she breaths very rapidly. She is on IV fluid only until she is breathing better, that part is not making her happy, she loves her food. She is not

Paulahttp://www.blogger.com/profile/05814015942598777554noreply@blogger.com0tag:blogger.com,1999:blog-2556345777027844732.post-22404758848290627312009-12-01T11:31:00.000-08:002009-12-14T11:47:53.907-08:00

Many of you may know us and our family well or you may have heard about us from family or friends; we are the parents of Alyssa, who is the oldest of our two daughters. Alyssa began to have seizures at 8 months old, they were originally diagnosed as feberal seizures but as she grew older we realized that she had been misdiagnosed. After diligently seeking answers we were lucky enough find Dr.

a girl with an opinionnoreply@blogger.com0