Wednesday, July 29, 2009

medical update

OK - I have put this off as long as I can - time to do another medical update on Camilla. I love that so many people are concerned and interested to know how we are all doing and especially how Camilla is but to be honest, those have been some tough questions to answer this summer. The main reason for this very blunt, honest post about Camilla's situation is that I have been conversing through some of the online support groups and following other blogs of families dealing with similar situations and they are interested in Camilla's story.

For the majority of her illness (diagnosed with Infantile Spasms at 6 mo then Intractable Epilepsy at 12 mo) her seizures have been myoclonic 'jerks'. For Camilla this has meant that her upper body would stiffen and her arms would straighten for a couple of seconds during the seizure and then she would come out of it. At times these myoclonic jerks have come in clusters, lasted longer, caused shaking, caused 'brain fog' and caused her to be upset but for the most part these have not been 'severe' seizures (as if you can even rate something so horrible in the first place). She only went through one period at about nine months old where she began having multiple seizure types that invloved atonic, partial complex, abscense and myoclonic. Some of these were severe but, for the most part, ceased once we began the ketogenic diet. At the beginning of this summer Camilla's seizures began to change. Techincally they are still considered to be myoclonic but have worsened with their presentation. A bad seizure these days involves complete body involvement, last 20-30 seconds, may cause her to vomit afterwards, may cause her to cry out or moan during and causes her to be very upset, frantic and confused following. Needless to say this is a very disturbing event, not only for those watching, but for Camilla mostly. This week we began taking a new seizure med that we are very unsure about. Our neuro has pushed for months for us to begin this newly approved medicine, Banzel, and after all of our questions and research we are still so very unsure that this will help (however it is the lesser of our evil options at this time). At the last visit the neuro reconfirmed a new diagnosis that we have been dreading for years, Lennox Gastaut Syndrome. It is a very rare, severe form of childhood epilepsy and even though he claims that she is 'highly functioning' LGS it is still a devastating blow. He has scheduled Camilla for a 48 hr EEG and another MRI beginning on Aug. 24th. Please keep her in your thoughts and prayers leading up to and during these tests. They will be very difficult for her to deal with but we need this information to help determine our course of treatment.

Along with the very-pressing medical issues we are dealing with, we are also constantly concerned with her cognitive development, speech, motor skills, etc... Some 'side-effects' of having a child with neurological problems is their inability to 'shut down' the activity in their brain resulting in little to no sleep (for the past 3 months she has operated on an average of 4-5 hrs of sleep a night and 20 minutes during the day) and marked hyperactivity.

Through her illness we have endured many ups and downs. We have worried over medical condition, development, doctors, surgery, therapy, medicines, side effects, tests, diagnosis' and all the other 'usual' concerns. We hope and pray that this latest change will be just another of the temporary 'downs' on this roller-coaster ride and we hope the next 'up' will take us higher than she's been before. You see, we will continue to hold on to the hope that one day Camilla will be seizure-free, happy, healthy and leading a 'normal' life with no medical limitations.

Camilla will be 4 next month and as we prepare for parties and presents we realize that even though this summer has been a little more difficult and seen a little less progress than the last, we should still be celebrating because Camilla is a very happy, beautiful little girl who loves to play in her room, loves to swim and take a bath, loves to color, loves to laugh, loves to eat and loves her family. When we look at the 'big picture' and what we were told to expect at the beginning of this journey, we realize that she has come so far. She is such a little trooper through everything we have to put her through. She is such a stubborn, hard-headed little angel who I know will continue to fight these battles before her - and she will continue to amaze us with her grace, beautiful smile and contagious laugh in doing so.

Friday, July 24, 2009

family beach pics

those of you who follow the blog that are interested in checking out the family pics we had made a couple of weeks ago at the beach can go to www.aimeereynoldsphotography.com and click on clients from there type in the password Camilla

we are so pleased with these pics - thanks Aimee for being so good to us

Wednesday, July 22, 2009

Boston-aka Bahstun,Beantown,Home of the Sox, etc...

On July 8th Brandon and I traveled to Boston, MA with good friends Jennifer and Mark Bedsole. After our adventure to Yellowstone Park last year we knew we were in for a treat in Boston! We had such fun! Of course, the guys really enjoyed the tour and game at Fenway Park between the Red Sox and the Kansas City Royals. The Sox lost but we still had a great time at the historic park - we saw the Green Monster (and a homer hit over it) - sang our hearts out during the 7th inning stretch (see video) - and enjoyed the Fenway Franks and 'wada, aye-wada hea'! We enjoyed other activites like touring Beacon Hill (Cheers) and the Charlestown area, the adventures in the subway, Boston Common and the Public Garden, swan boats, good food, climbing the Bunker Hill monument (or laying in the grass), the Freedom Trail, Copley Square, visiting Harvard, hearing the GREAT accents, seeing the 'TALL ships' and so much more!!!! I love this city so much!!

video

Tuesday, July 21, 2009

patriotic pookie-

Camilla had such a blast at the Freedom on the River festivities! She enjoyed riding in the Children's Parade (even though she missed Anderson this year) - she loved bouncing in the blowups - she loved the sno cones - and of course she LOVED the fireworks!!!

Elvis has left the building-

He may have left this building behind but you wouldn't know it from all of the fans that still flock there everyday! Graceland was such an adventure and it sucks you in and turns mediocre fans into BIG fans before you leave those famous gates. Amy and I had a GREAT time - it's something I've always wanted to do-

Wednesday, July 15, 2009

round 3 - nkotb

On July 2nd Amy Abrams and I went to see New Kids on the Block in Memphis (yes, I know it's the third concert in 6 months, but we are OK with it). This time we had 5-star VIP passes and we got to attend a meet n greet before the show! It was the best 'meet a rock star in three minutes' I've ever had! We got hugs from all and they were fun to meet!


video
video