tag:blogger.com,1999:blog-28812392562116434852011-04-21T20:45:49.659-04:00Little is known about CDKL5. I am hoping by creating this blog, word will get out and parents will communicate more if their child(ren) have been diagnosed with this mutation. It is a devastating neurological condition causing a variety of problems, intractable epilepsy being one of the primary signs. Welcome to our blog...Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.comBlogger841100tag:blogger.com,1999:blog-2881239256211643485.post-20261164440384140892009-05-26T09:08:00.005-04:002009-05-26T09:31:06.813-04:00

I can't believe it's been since February that I've posted! Moving took a big chunk of time and energy, and we still have contractors coming to the house each week (we moved March 20). I absolutely love the house though, and the water view is incredible! We had our housewarming party a couple of weeks ago and everyone had a great time. It was nice to be able to entertain again. As for Jade, we had

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-22878307111894968432009-02-28T16:44:00.005-05:002009-02-28T17:04:37.041-05:00

Obviously, I've wanted to post since my last entry, but time keeps running away from me :)Jade was released from the hospital last Tuesday, a day or two earlier than anticipated (small Yay!). She was completely weaned from the diet as of Monday and they started her on Pediasure. It took a bit of time for us to get used to her new diet. No more measuring, sticking to strict food requirements or

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-62037327694427122122009-02-20T22:01:00.006-05:002009-02-20T22:17:49.772-05:00

Alrighty, here's the story...  As most of you know, Jade's been having more seizure activity than we are used to seeing. After phoning neurology early Tuesday morning for some guidance, we were told to go to the local ER to assess her. The previous night, she was seizing no less than every ten minutes for 3-4 hours straight. I thought they were tonic-clonics, but I was later told they were not.  

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-48138962440046098772009-02-01T11:29:00.003-05:002009-02-01T11:55:51.254-05:00

You know it's Winter when your kids get sick, recover, then get sick again right away! Baby J is coming down with a cold, thanks to big sissy. She's been sneezing a lot, which is good because then she can get some of the nasties out since she can't blow her nose. Poor little bug!As for seizures, they're still hanging around, but some days are better than others. Our latest flurry can be explained

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-89708627910849835372009-01-23T15:35:00.004-05:002009-01-24T15:09:27.407-05:00

The seizures continue unabated. In fact, she's been throwing in tonic/clonics on top of her usual pattern. The last few days have been especially hard on her, particularly in the evenings. Whether it's from the cold weather or not (yup, it got below freezing overnight on three consecutive nights!), I can't be too sure. We've made some significant changes to her diet and some meds, so compounded

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-13150302627686219002009-01-12T19:54:00.004-05:002009-01-12T20:21:24.534-05:00

So the seizures are back with a vengeance. What else is new. This time, I have no clue why they are so bad. The only changes to her daily diet/routine were the addition of a probiotic (suggested by her paed) and a new multivitamin. I called the company who makes the probiotic to make sure there weren't any added carbs and they assured me there is nothing aside from what is listed on the bottle.

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-23083776445758916142009-01-09T17:59:00.004-05:002009-01-09T18:14:16.312-05:00

It turns out that she didn't have a UTI after all. No surprise there, I suppose. So, she is off the Bactrim as of tonight. Her pediatrician recommended starting her on a probiotic, which I have pondered doing in the past. Previously, I looked into a couple of brands labeled for children, but they are not Keto-friendly. No surprise there either. So, off to the health store tomorrow to see if they

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-54066442361030929732009-01-02T19:28:00.004-05:002009-01-02T19:35:17.453-05:00

It seems now that our little princess might have a urinary tract infection. This is almost identical to last year's ailments. While her seizures are still okay, she's had a couple more large clusters that are a bit out of the ordinary. Today, when I checked her urine stick, it showed moderate traces of blood, small nitrites, and small leukocytes. After a lengthy message with Jade's nurse

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-12497934885785703202008-12-31T21:07:00.001-05:002008-12-31T21:08:56.707-05:00

Cheers to a new year with many hopes of research success and breakthroughs, less seizure activity, no hospital stays, and a smooth move-in to our new home!Wishing all of you the very best in 2009!

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-73030929476666004822008-12-23T14:39:00.002-05:002008-12-23T14:55:52.209-05:00

Who can you strangle when everyone is pointing the finger at everyone else?! I have been in a battle with Jade's enteral supply company (Apria, for those of you who know how idiotic they are) since yesterday. I merely called to find out when she was getting her next supply of food (note: she's already 10 days late). I find out that some kind of authorization was needed to be signed by her doc for

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-68592347884872851132008-12-20T20:13:00.001-05:002008-12-20T20:14:33.386-05:00

I guess she's trying to catch up from the past couple of days :(

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-42797389375048234162008-12-19T12:40:00.004-05:002008-12-19T12:55:31.286-05:00

Well, it's that time of the year again for illnesses! I finally know why J's seizures were so horrible this week - she has a stomach bug. What's terrible is that I knew she wasn't feeling well two days ago because she was feverish. Had I known that her stomach was upset, I would have taken it much easier on her with food and therapy. I guess her revenge is passing it on to me today! :( She's been

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-49995339319084933342008-12-14T20:04:00.005-05:002008-12-14T20:13:56.150-05:00

Jade and I made banana bread today! I really think she enjoyed helping me. She poured the dry ingredients into the bowl and helped mash the bananas. I think the mushy feeling of the bananas was really unique to her. She also held the measuring cups and the spoons and stirred the ingredients with a whisk! I think it might have all been a bit much for her, but she actually opened her eyes for the

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-21222955452881182802008-12-08T16:59:00.005-05:002008-12-08T17:14:51.797-05:00

Hello all! I think I get about two minutes to update until the kids are back from their bike ride... :)The weeks have been a whirlwind with the holidays and shopping and social studies projects and decorating and...it's BUSY!! But, in a good way :0) The dog is still crazy but loveable, Jade is still having seizures but not as many (just longer and more intense), the kids are excited about Santa,

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-12090458493795769012008-11-28T08:38:00.012-05:002008-11-28T22:13:34.672-05:00

I suppose another update is long overdue :) First off, let's just say the dog is sucking the life out of me! He's a good pup, just very active and demanding of attention. We just got him neutered and microchipped this week and you would never know he underwent any sort of procedure. Obviously, he's recovering well :0)E's pageant is over as of last Sunday. She did so well! I was a nervous wreck

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-52487471565097534572008-11-17T16:53:00.010-05:002008-11-17T19:38:08.129-05:00

There's not much to write. Jade seems to be doing a little bit better over the last couple of days, but I'm not holding my breath (ok, yeah. maybe I am). She had a doozy of a seizure last night around dinner. I thought it would knock her flat on her butt, but she stayed awake for a while after. The good part was that it seemed this was her only seizure all day. I was gone all day shopping with E,

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com3tag:blogger.com,1999:blog-2881239256211643485.post-50264677598338610742008-11-11T07:34:00.003-05:002008-11-11T07:45:38.681-05:00

While I haven't seen much improvement with the increase in Zonegran, there is potential I believe. She had a "better" day yesterday with fewer tonics and a longer gap in between seizures. However, the seizures she had were HUGE. I may be jumping the gun, but I decided to take away her morning dose of Klonopin. It was such a small amount, I really can't see that it is doing any more than sedating

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-81269197649912167312008-11-07T20:05:00.005-05:002008-11-08T07:47:27.104-05:00

So, over the weekend, I came to the agonizing decision to put Jade on Felbatol. For those of you familiar with it, I am sure you know how difficult it is to come to such a decision. For those of you who are not familiar with it, it has severe and sometimes fatal side effects. Patients/parents are even required to sign a waiver to have it prescribed. You must now realize what we've been up against

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-88550522914615187272008-10-31T20:21:00.003-04:002008-10-31T20:22:23.874-04:00

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-310547661617706152008-10-24T13:40:00.001-04:002008-10-24T13:40:39.882-04:00

Enough said.

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-85753869774941343812008-10-22T12:00:00.003-04:002008-10-22T12:03:18.743-04:00

He's doing well so far! Much calmer than Stryker and eager to please :) I'm hoping that he will become Jade's new "best friend"!Irresistible!!

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-59776608103688983382008-10-19T20:35:00.003-04:002008-10-19T20:52:23.834-04:00

Our Yahoo group has grown so much over the past couple of months, that we are all having a hard time keeping up with who's who! One of our members has begun the process of creating an international cdkl5 non-profit, others have volunteered to create/sell cdkl5 awareness merchandise, and I have volunteered to create the first official newsletter! We are all very excited about the "progress" being

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-13970625279779236972008-10-14T18:32:00.006-04:002008-10-14T18:53:18.785-04:00

Jade went for her quarterly checkup today to meet with the Ketogenic team. After countless needle sticks for a blood draw (not once did she flinch or cry out, even while the nurse dug for veins on several occasions), we were finally successful in pulling her blood. I feel so awful for her when she presents as such a hard stick. It is incredibly painful to have someone dig around for a vein. I

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-37588840661977503342008-10-10T17:09:00.003-04:002008-10-10T20:10:51.767-04:00

We got back safe and sound on Wednesday. It was an amazing trip and we had great weather almost the whole week. The most amazing thing about Ireland is that there is a pub on every corner, and almost in between every building you come across! It was nice to be able to sleep in, stay up late, not have to worry about logging seizures, measuring food portions, etc. The kids were great in our absence

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-41428364659795786652008-09-30T07:38:00.003-04:002008-09-30T07:45:09.679-04:00

Tomorrow we leave for Ireland! Naturally, I have a miserable cold at the moment :( Nothing a little Jameson's or Guiness won't cure, right?! So, to add to the stress of leaving the kids, now I am worried that Jade will get this cold. She doesn't do very well with respiratory infections, so I am keeping my fingers crossed and inundating her with Zicam. Send a few good vibes her way to keep the

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-65092446697825949512008-09-26T15:47:00.010-04:002008-09-28T09:34:33.429-04:00

CDKL5.com(click on the above header)Notice the color?? :) It's jade!!!! Pretty cool, huh?I hope everyone reads through the website. It is pretty new and still being tweaked, so check back often for new stuff!

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-84151418410141742982008-09-25T09:33:00.008-04:002008-09-25T11:58:48.898-04:00

Lil Miss Jade celebrated her 4th birthday yesterday!! :) Given the number of seizures she had been having over the last couple of months, she did marvelous on her big day! She must have known she was the center of attention, because she only had one major blowup all day. That's my girl! (now, however, is a different story). Regardless, she seemed to enjoy everyone oohing and aahing over her.

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-7155687583745960222008-09-12T18:29:00.006-04:002008-09-12T19:11:50.980-04:00

This footing was taken this past Tuesday while she had her weekly aquatherapy lesson. I am so glad we purchased this vest for her! She absolutely loved the freedom to kick around and showed off her swimming skills to anyone who watched. Go Jade! We saw her neuro yesterday and the most he decided to do was to increase her Keppra. We gave her an increased dose last night and she slept until

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-32580671095786852542008-08-29T11:21:00.003-04:002008-08-29T11:31:36.789-04:00

Time to party!! :) The kids are now officially in school and Momma can relish a little bit of peace and quiet and work on a long to-do list. It was a nice week for the most part, yet still pretty hectic.The dog is healing, finally. Her urinary culture came back negative, which means the antibiotics are working. Now, if we could get it through her thick head that peeing is an outside activity,

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-51479170802702730122008-08-21T08:57:00.005-04:002008-08-21T09:31:17.120-04:00

My joy at the kids going back to school was short lived :( They managed to get there on Monday, only to have the next three days off due to Tropical Storm Fay. This darn storm has been sitting off our coast since the beginning of the week, churning up the waters around the restaurant (quite nerve-wracking considering what we went through in 2004). They won't put the kids back in school because of

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-70959179336699578032008-08-11T07:34:00.006-04:002008-08-11T07:51:39.722-04:00

Stryker, Stryker, Stryker. What can I say? She's more work than Jade right now! She has had a urinary infection since the day we got her, and she continues to pee EVERYWHERE in the house, even after antibiotic treatment and holistic treatment. I am soooo ready to call the breeder and ream her out, but I am being patient and hopeful that this will run it's course. I will give it a couple more

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-78455663762095662582008-08-01T20:36:00.010-04:002008-08-01T20:46:05.291-04:00

Jade's new life jacketOn the first leg of our vacation. How very cute!Front of house - 8/1/08Back of house - 8/1/08

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-81959264005551296182008-07-29T16:18:00.003-04:002008-07-29T16:27:48.611-04:00

We arrived back in Florida late Thursday, and thankfully, in one piece! The drives up and back were long and exhausting, but not too stressful. We had decent weather most of the week, except I felt like we were still in FL since it was REALLY hot up there! It was great spending time with my family again and we had so much fun visiting all of our favorite fun spots. I can't wait to go again!Jade

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-78938100299949195492008-07-11T20:24:00.002-04:002008-07-11T20:29:28.296-04:00

We are going on our annual summer trek to Northern U.S. next week. It should prove to be an interesting ride. We finally got Jade's new wheelchair and have outfitted the van with the EZ lock system to keep it securely in place. It was an exhausting week for all, especially little princess. She had to endure a trip to Shands, a trip to Jacksonville, and running around town getting errands done. It

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-37253490960883507662008-07-06T09:50:00.005-04:002008-07-06T10:01:48.663-04:00

This video is more for the members of my Yahoo group, but anyone is invited to preview it. It is a short clip of one of her seizures. I caught her on tape in the middle of it. It probably lasted at least a total of 5 minutes or more. These are the bigger ones she has these days and they wipe her out afterward. She has anywhere from 1-5 per day lasting from 2-7 minutes each. She also has seizures

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-81950082786843347482008-07-02T14:52:00.009-04:002008-07-02T15:09:02.359-04:00

The builders are moving right along! Today, they are pouring the cement into the Reward wall structures (the white looking "legos" in the photos). It was pretty neat to watch (and pretty messy!). Next week, we should have the floor joists in place for the second floor.As for Jade, she is still having tummy troubles with excess air and discomfort. Of course, she is also having more seizure

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-85641764959838453742008-06-30T11:02:00.003-04:002008-06-30T11:06:24.667-04:00

If anyone is interested in seeing other CDKL5 children, click on the links off to the right under Jade's CDKL5 friends. To me, it is pretty amazing seeing the resemblances between the children and Jade. But, I am also amazed at how incredibly beautiful all of our children are! Keep checking back because more parents will be posting videos of their children.J's doing okay. More tummy trouble again

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-30601295693683491382008-06-28T14:25:00.004-04:002008-06-28T15:47:12.312-04:00

Her tests went well, after much trepidation on our part. She weathered the endoscopy and accompanying anesthesia great, and the doc gave us pictures of her clean looking tummy! No ulcers, irritations, g-tube balloon looked good and in place, and the Nissan was intact. The upper GI went much quicker than I expected - about 15 minutes. It showed no reflux and the Nissan looked great on that too!We

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-7666828908295833922008-06-25T15:04:00.002-04:002008-06-25T15:09:35.318-04:00

We had a very early start this morning - 5am!! We had to have her at the hospital by 6. I think I officially fell asleep around 3:30 this morning. Anyway, they performed the endoscopy and took a few biopsies. The doc showed us pictures of her "insides", and it seems all looks well. We should know the results of the biopsies next week.Tomorrow is her upper GI. Hopefully, it won't take too long and

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-88277824859399112392008-06-19T19:07:00.006-04:002008-06-19T19:14:20.054-04:00

Here are a couple of photos of our "Lego" walls.It is really interesting watching them put thisunique system together!Instead of her having tests this week, they scheduled her next Wednesday and Thursday for the two-part series. Wish us luck!

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-51132004553339038292008-06-16T20:37:00.004-04:002008-06-16T20:44:07.119-04:00

We made a desperate attempt to get a good, updated picture of the three kids together. These three were our favorites :)

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com3tag:blogger.com,1999:blog-2881239256211643485.post-45032651947381198052008-06-14T10:03:00.006-04:002008-06-14T21:29:17.315-04:00

After speaking with Jade's dietician, it was decided that she needed to see GI in clinic. So, the nurse managed to get us an appointment yesterday. Since we are not sure what could or could not be going on with her, the GI doc decided to schedule and upper endoscopy and an upper GI to see if anything is wrong. I'm still wavering about whether these tests are absolutely necessary, but by doing

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-79790114648329140372008-06-07T15:15:00.005-04:002008-06-07T15:47:25.592-04:00

We made the trek to Shands from Monday to Wednesday. She had all of the routine labs drawn, and they hooked up her "skull cap" (the EEG wires on her head). This time around, I could tell she was REALLY irritated by the wires. I have no doubt they left her head feeling itchy all day and night.As usual, she performed well for the cameras. We also managed to get a consult arranged with the GI doc. I

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-66067195753779701762008-05-28T09:31:00.006-04:002008-05-28T10:39:08.302-04:00

Jade sunningT and Jade being silly!We have walls!!!!As you can see by the photos, we finally received our waiver to begin building again! We started around mid-May and things are beginning to pick up. Now I finally get to start choosing things like my cabinets, the pool design, paint colors, etc. It's a little overwhelming, but fun. Each week is new and different with the structure and it's

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-85909434475253591372008-04-23T07:28:00.002-04:002008-04-23T07:55:09.588-04:00

Hi all! It's been a while since I've posted anything new. That's probably because nothing "new" has really gone on here. She's sick with another cold again (compliments of E!), but her seizures are not ballooning as expected. She had a few more leading up to her getting sick, but nothing too severe. Now I think it's Mommy and Daddy's turns to come down with it... :(Jade has grown so much since

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-84770187370353187292008-03-20T07:55:00.003-04:002008-03-20T08:10:35.680-04:00

Naturally, good things come to an end, don't they? For those of us in similar situations, I'm sure you can agree. Once J came down with her cold, her seizure threshhold lowered. She hasn't regained the "control" she had in February, and I'm greatly disappointed. Maybe if I ignore the seizures, they will go away??So, as usual, I pretend there is another reason for the increase. This time, it's

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-16261276385862327112008-03-01T16:05:00.002-05:002008-03-01T16:20:31.815-05:00

The rest of us were bitten by the cold bug too. Jade's nose isn't as bad as last week. Hopefully, the drainage won't be too hard on her. Unfortunately, because she got sick, her seizure activity has increased once again. After so many good weeks of decent "control", she's now back to many each day and night. Not bad, just many. Yesterday and today, I've begun noticing that she is having clusters

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-74780507593198941682008-02-27T09:16:00.002-05:002008-02-27T09:27:18.177-05:00

Yesterday, we went to see Jade's Pediatric Surgeon who put her g-tube in place. I was concerned that because she had such a huge growth spurt over the last 6 months, that maybe it was time for a new fitting. He deemed it perfect and off we went! Two hours in the car to and from for a 10 minute visit. It never ceases to amaze me :) I also questioned him about what to do about the amount of air in

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-14367051207284384892008-02-24T08:34:00.003-05:002008-02-24T08:40:13.671-05:00

As I said in my last post, things spiral downward after I tell someone she is doing well. She's not really bad, she's just been having more seizure activity. Lately, J's been doing a lot of tummy grumbling and burping. Not things that are comfortable for her, especially since the Nissen is supposed to curtail the air release. Every time we vent her g-tube, we get massive amounts of trapped air

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-4694120317258618552008-02-19T08:03:00.002-05:002008-02-19T08:16:01.821-05:00

It seems every week she's getting bigger! And the wheelchair people think she will last another year in her current chair. They don't know the power of Jade :) We measured her for a new chair in January. We're waiting on insurance right now to say yes or no. I'm just floored by the cost of a new chair. It's like buying a used car! I know some of those power chairs are upwards of $20k. She will

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-88753526422048044422008-02-11T11:43:00.000-05:002008-02-11T11:55:01.861-05:00

Fortunately, there's not much to report here, as you can tell by the lack of posts. She's been pretty stable over the last couple of weeks and I didn't want to jinx our good fortune by saying it out loud! She's been incredibly vocal the last few days. We can't figure out why. Is she uncomfortable, lonely, or just wanting to communicate??We're moving along with the land clearing. Surveyors today

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-74192996904197326542008-01-27T08:52:00.000-05:002008-01-27T09:00:42.372-05:00

Here's a short video of one of the trucks taking down a giant tree on our lot. It's pretty amazing how accurate the driver is when falling the tree! For those of you who are epa fanatics, the downed trees will be put to good use and there will be others planted in their place when the house is built. A good portion of the wood will be used as mulch, some as building material, and some as

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-57142403804846275182008-01-23T08:17:00.000-05:002008-01-23T08:24:40.710-05:00

I shouldn't write this yet, but, what the heck! We should be getting our permit to build our house today!!! After almost a year of planning and going through the permitting process, we can finally break ground. We haven't "officially" gotten the permit, but all that needs to be done today is for the city office staff to make their copies and for us to pay the fees. It was an eternal wait and I'm

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-43888472874532323902008-01-19T13:12:00.000-05:002008-01-19T14:24:54.975-05:00

I finally got a spare moment to update since our neuro visit. After waiting FIVE hours to see the doctor, this is the plan: increase her diet ratio to 4:1 for three months. If we don't see a 50% reduction in seizures, then we go to a 5:1 ratio for a few months. Talk about a lot of fat in the diet! If, after going that high, we see no change in seizure activity, we will take her off of the diet

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-71888586242284788712008-01-16T11:55:00.000-05:002008-01-16T12:20:34.972-05:00

I was made aware of the fact that I haven't posted anything more since Friday. No news is good news, right? I hesitated posting because I didn't want to jinx anything!Actually, things have been pretty much the same with her. We watched her bilirubin levels over the weekend and did a blood draw on Monday for liver function and cbc. Both came back normal. The true test will be after today, when her

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-64773717029544711802008-01-11T11:15:00.000-05:002008-01-11T11:26:52.005-05:00

I can't really call it a lucky streak because she's still having seizures, but at least she's not having as many clusters. Yesterday she had one cluster after going a solid 11 hours without having ANY noticeable seizure activity. Quite a difference from just four days ago. I still attribute it to the Bactrim. One of the other mothers swears by antibiotics (I think in particular the Bactrim) as

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-62635067473814891602008-01-10T07:42:00.000-05:002008-01-10T08:29:02.031-05:00

Our favorite doc called yesterday (our pediatrician), and gave us the results of the urine culture. Thankfully, it didn't indicate a UTI. However, a couple of things were a bit questionable. The test yielded out of range results for Hyaline Casts (0-5 range), low ketones (1+), and a high ph level (8.5). It could mean nothing, or it could mean something. Whatever the case, we're keeping her on the

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-73089407297057980162008-01-08T07:26:00.001-05:002008-01-08T07:50:22.307-05:00

In the early hours of dawn this morning, after being awakened by yet another round of seizure activity, I somehow managed to work around my fuzzy brain to calculate how many seizures she actually has in one day. It's kind of like the Jelly Bean game. Step right up folks and guess how many jelly beans are in this jar! Okay, it's not as fun as that, but I'm willing to bet nobody reading this blog

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-72352194835918398432008-01-07T12:57:00.000-05:002008-01-07T13:03:29.758-05:00

After having a catheter inserted (ouch), her sample will be sent off to the lab to grow a culture in the next 48 hours. In the meantime, she will be taking Bactrim (antibiotic) just in case. I have a feeling the culture will yield nothing, but it sure would be nice to blame these seizures on something! I tested another pee stick after this morning's first diaper, and there were no indications of

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-52072150821251380892008-01-07T07:40:00.000-05:002008-01-11T13:38:37.170-05:00

Today is the day the docs are supposed to discuss Jade to decide what course of action (if any) we need to take with her. I sat down last night and sent an email to Jade's dietician outlining everything pertinent to what she's going through. I really think if she didn't have the dietician looking out for her, we would be ignored even more. I put a plea in the email for the most knowledgeable

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-31339814701212271392008-01-05T16:14:00.001-05:002008-01-05T16:16:48.549-05:00

Okay, I lied. I did more than put that post in. Please look to the right and click on Jade's friends' blogs. Our little Yahoo group is becoming more computer literate and we are doing our best to spread the word! I will keep linking her friends personal sites as they are created.Much love to all. We miss every one of you in the Arctic Tundra!

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-81611677985951412892008-01-05T16:11:00.000-05:002008-01-05T16:13:42.110-05:00

All I want to say today is:THE STEELERS BETTER WIN IF THEY HAVE ANY COMPASSION FOR ME!Tune in tomorrow for a review with tears or cheers :)

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-14597461850143827622008-01-04T15:33:00.000-05:002008-01-04T15:50:09.914-05:00

I know, I know. You can all laugh at me for complaining about the "cold" weather! Hey, when it's 50 degrees during the day in Florida, it's no laughing matter! We had to cover our plants :) Seriously, I'm sitting here wrapped in my big fluffy robe because I'm freezing. So much for growing up in the Arctic Tundra up north! I'm officially a Floridian.I wish I had something different, yet good, to

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-37557439177545482172008-01-02T21:26:00.000-05:002008-01-02T21:32:19.534-05:00

Today was a typical day, for the most part. With every seizure, though, she is grinding her bottom tooth even more out of place. I suspect within the week she will need one of us to pull it (not my cuppa tea, ya know!). I'm going to have to bring in the troops for that task. We've taken to breaking out the gauze with seizures to stem the blood flow from her gum. Icky!The kids continue to

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com1tag:blogger.com,1999:blog-2881239256211643485.post-72442827468358481062008-01-01T13:22:00.000-05:002008-01-11T13:36:13.776-05:00

So, I called the neuro group yesterday on the off-chance that I could pick their brains about curtailing the seizures again (even though I knew what they would tell me). Nervous Nelly that I am, if I feel that she needs Diastat (which we gave her two nights ago), something more needs to be done to alleviate the severity of her clusters. They put the middle man (the staff nurse) on the phone to do

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com2tag:blogger.com,1999:blog-2881239256211643485.post-32543350202301112362007-12-30T19:59:00.000-05:002007-12-30T20:23:54.110-05:00

She's still going strong and we're at a crossroads in terms of what meds we want to use or wean. We haven't used the Klonopin for two days now and she is a bit (just a bit) more alert and interactive. She's still seizing like crazy, but I just couldn't stand seeing her be so "droopy". I remember the Klonopin's side effects being the same over a year ago and I swore I would never add it to her

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-1847332394709087522007-12-30T19:49:00.001-05:002007-12-30T20:27:40.821-05:00

Here are some pictures of Jade that are some of my favorites. It's hard to believe they were taken only a month or so ago.

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-12785400258368510312007-12-28T19:12:00.000-05:002007-12-28T19:15:03.405-05:00

Nothing different today, except for even more seizures. I hope the antibiotic she is on helps in some way. If she's truly sick with some infection, it could be causing some of the increased activity. Her clusters are coming closer together and include both tonics and tonic-clonics. She stops breathing with the tonic seizures. If they get any longer than what they are now (10-15 seconds), she's

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com3tag:blogger.com,1999:blog-2881239256211643485.post-77960275967793001412007-12-27T09:32:00.000-05:002008-01-11T13:59:27.176-05:00

Well, the dreaded moment arrived this morning during yet another seizure (have I mentioned yet how much I REALLY REALLY HATE seizures?). No sooner did she start seizing when blood started pouring from her mouth. Naturally, my first inclination was that she bit off part of her tongue. After careful inspection (well, sort of - she wasn't too keen on opening up her mouth for me), it seems she

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-8186763294172871272007-12-26T21:33:00.000-05:002008-01-11T14:01:32.287-05:00

Christmas was a hit! It went a lot better than I thougt it would. The kids were up at 5am! with instructions to not bother us until at least 7am. You know they were jumping on the bed the minute the clock struck 7!!! They had so many presents to open and they made out like bandits. Not a bad year from Santa... :) My favorite present was the new car I got! Can't beat that, I suppose :) :) :)I took

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-11185524578198395902007-12-24T19:57:00.001-05:002007-12-27T13:38:50.293-05:00

Last night was a full night of seizure activity again. Today wasn't much better. Just as she started having one of her tonic seizures, she put her thumb in her mouth. I thought for sure she was going to bite it off or do some serious damage. I tried to pry her mouth open or at the very least put my finger between her teeth to keep her from clamping down even more than she was. No such luck.

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-25756398773197859122007-12-23T15:31:00.001-05:002008-01-11T13:42:35.842-05:00

December 23, 2007We are finally home from the hospital. For those of you who didn't know what was going on, she had increased seizure activity and we were hoping to give her some kind of medicinal break. Fat chance! We were admitted Monday and got home Friday afternoon. I had a tough time leaving as I am scared to death of something happening to her on my watch. She’s been doped up with Phenytoin

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-17891250003995900512007-12-23T15:31:00.000-05:002007-12-23T15:39:13.677-05:00

7/1/07Things still pretty much remain the same with Jade. She has increased seizure activity with illness or stress. Otherwise, the daily seizures are mostly myoclonic or staring/absence/eye deviations. Not a day goes by without some sort of seizure. She is rolling back and forth and onto her belly again. She stopped doing this after the g-tube placement due to the discomfort. We finally found

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-50174549103306556262007-12-23T15:30:00.001-05:002007-12-23T15:39:05.338-05:00

1/22/07Not much has changed with Jade's progress. At the neuro's suggestion, Jade underwent a Nissan fundo and g-tube placement. She is doing much better overall, but still seizing daily. Whether it's the drug reduction or Keto diet, the number of seizures has dropped for the most part. She is currently on no seizure meds and solely on the diet. She's still thriving and growing healthily. We keep

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-44604076091750819682007-12-23T15:29:00.000-05:002007-12-23T15:38:57.025-05:00

7/2/06After what seemed like eternity, we finally received word that Jade has a genetic mutation. She falls under a RTT-variant (Rett Syndrome), CDKL5 mutation. We meet with the geneticist and neuro staff this week to get the lowdown.They also told us that Jade is the second documented case in the world with this particular mutation (R178W). It, unfortunately, means that we will not have a lot of

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-88243627558171431632007-12-23T15:28:00.000-05:002007-12-23T15:38:47.347-05:00

6/1/06A lot has happened, but in a nutshell: she's still on the diet at a 4:1 ratio as of mid-May, still on Keppra (125mg bid), Klonopin (.5mg am and .625 pm), Prevacid (15mg bid), and her dietary supplements. We got rid of the Topamax in mid-May. I dare say that by getting rid of that, we possibly brought back increased seizure activity. But, I refuse to use it again. She seemed to "wake up" so

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-50565059950682226382007-12-23T15:27:00.002-05:002007-12-23T15:38:39.428-05:00

2/4/06We're doing fairly well on the Keto diet and wished we could have started it sooner. We began the Topamax wean and should be done with it in May. I'm cautiously weaning a tad of her Klonopin in the meantime, too, but will wait for the Topamax to be done before going all out on that evil drug!She's doing a little better, esp this week. I've noticed that she seems to be taking a little more

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-81756550498869455062007-12-23T15:27:00.001-05:002007-12-23T15:38:32.840-05:00

1/7/06Aside from an ear infection last week, she seems to be doing okay. The diet seems to have helped somewhat, but I'm still "cautiously optimistic". Her reflux has improved while on Prevacid, but her drinking hasn't. I still refuse to go the g-tube route and so continue with speech therapy for drinking solutions. It seems that the days her seizures and reflux are good, so is her drinking.She's

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-84578888592212899932007-12-23T15:25:00.002-05:002007-12-23T15:38:22.739-05:00

December 21, 2005Since the start of the Keto diet, Jade's strength has improved and she is now holding her head up for longer periods of time. The downside is that this week, she's having a lot of drop, absence and staring seizures, which may be due to teething. It's starting to wear on her and I'm praying she doesn't regress with the frequency. She was doing pretty well for a few months, so

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-16515674604034436362007-12-23T15:25:00.001-05:002007-12-23T15:38:13.776-05:00

November 17, 2005We started the Keto diet on Oct. 31. She had also started Keppra on Oct. 13 and has done marvelous with this drug (for now). I have only witnessed a handful of "bigger" seizures and have difficulty pinpointing her daily seizure activity (staring, some isolated myoclonic jerks). Doc thinks she's on the road to a diagnosis of Lennox-Gastaut (figures). She's still assessed at a 1-3

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-5988636256227772982007-12-23T15:23:00.000-05:002007-12-23T15:37:58.705-05:00

Sept. 2005Jade continues to have spasms after weaning from the ACTH. She was averaging around 50-75 per day, and has just recently had fewer (around 20-30). She's on Topamax (45 mg sprinkles bid) and Klonopin (.5 mg tab bid). No other seizures in weeks though! Still can't figure out why she's still having spasms. Our next step is for a possible muscle biopsy in October...

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-54777992362133084542007-12-23T15:22:00.000-05:002007-12-23T15:36:23.523-05:00

August 30, 2005We finally finished up our last dose of the ACTH on Saturday, 8/27. She had several episodes of clonic seizures last week which merited an abrupt return to the doc. He upped her Topamax and Klonopin, again. This got rid of the large seizures, but I dare say it looks like her spasms are beginning to return. Several times a day, she has moments where her eyes flick upward briefly and

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-25379769068506829032007-12-23T15:21:00.000-05:002007-12-23T15:35:49.560-05:00

7/6/05After beginning Vigabatrin wean, the spasms came back full force. Don't know what to make of things now and the doc refuses to up her ACTH dosage. She's now on Trileptal too, but who knows how effective it will be. On a good note, though, she is rolling both ways (right side preferred) and seems to want to try to crawl, but for her right arm getting stuck down at her side or underneath her

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0tag:blogger.com,1999:blog-2881239256211643485.post-54578443676062198922007-12-23T15:18:00.000-05:002007-12-23T15:35:29.483-05:00

6/3/05My daughter, Jade, has had intractable epilepsy since 3 1/2 mos. of age. We even think she had a seizure her second day of life while in the hospital. It's been an uphill battle trying to figure out what's wrong with Jade. Preliminary findings indicate that her MRI is normal (with a small blood vessel abnormality of no reported significance), CT normal, metabolic and genetic workup normal,

Kayhttp://www.blogger.com/profile/02206495000576584058noreply@blogger.com0