Wednesday, December 2, 2009

family update

It's ime to share lots of good news with our friends and family! First of all, there is another little Smith on the way! I am four months along and the due date is May 20th! We will find out on Dec. 14th whether we are expecting a boy or a girl! We are so excited and Camilla is ready to be a big sis! Also, I will be resigning from the Chamber of Commerce on Dec. 11th to be a stay at home MOM! Camilla is ready for potty training, sign language and will be going to speech therapy at Children's weekly so we will be very busy until May when #2 arrives - and then we'll be busier! Please keep our family in your prayers through all of these transitions! Have a MERRY CHRISTMAS and a HAPPY NEW YEAR!

Monday, November 23, 2009

halloween fun

I just had to post these pics from the Halloween Party we went to - Brandon went as one of the 3 Mustateers - it was hiliarious!

trick or treat

Pics from Halloween - Milla was the cutest 'pink lady' you'll ever see!

Tuesday, September 15, 2009

fab four

Camilla turned four on August 14th and she had a family party that night and then a family and friends party on the 22nd! She loved both of her celebrations and has gotten good at tearing into those gifts! I can't believe she's four! It seems like just yesterday...now I'm really sounding old!!!

Sunday, September 13, 2009

pics from hospital stay-

Finally-these are the pics from Camilla's hospital stay at Children's a couple of weeks ago. This was the test for her 48 hr EEG. The pics give you an idea of how confing this test is and how she is actually 'hooked up'. Thanks for all the prayers - I KNOW they were answered! She cried herself to sleep after 10 minutes of applying the leads - so the last 50 minutes were easy on everyone. She did so well having to stay in that same small bed for the entire 48hrs - she never even tried to get up! She sleep alot during the time and never once had to be sedated. I don't think I would have done as well as she did! We will go back for her MRI in a couple of weeks and then after that the follow-up for all the results. Please continue to pray!

Thursday, September 10, 2009

medical update:

It's been a couple of weeks since I posted a medical update so here goes! Camilla's seizures have improved drastically since beginning Banzel. They are back to the milder myoclonic jerks that many times only Brandon and I will notice because of the way she tenses up or her eyes move or arms move. We are VERY thankful that the horrible seizures that were a constant part of our summer seemed to have disappeared. We were very unsure about beginning Banzel and still have our reservations but so far we have not seen any major negative side effects with the exception that she is back to mouthing EVERYTHING (and of course it's flu season)! She continues to take Phenobarbitol and Clonazepam daily. Camilla is also coming off of a growth spurt that lasted most of the summer and we believe that may have contributed to the severity of the seizures and why they are improving now (growth spurts have certainly affected her in the past). Camilla's seizures are still present everyday and right now she is averaging 5-20/day. These are usually spread throughout the day and may come in clusters of 2 or 3 or more but also may not.

Developmentally she is showing some progress. Our favorite words right now are dog, bubble, bath, no no no, baby and bear. She is attending the BEST program at Westside full time (8-2:30) and is doing well in this environment. She loves going to her classroom every morning and loves her teachers and snack time! She recieves speech therapy 3 times weekly at the school and we are in the process of refferal to the Speech Center at Children's.

Camilla goes next week for a checkup with Dr. Blount, the neurosurgeon that placed her VNS in Feb., and we hope to have a good visit with him. Camilla discovered how to pull on her VNS battery that is located to the front of her armpit on her left side and has managed to pull so hard that a wire is now visable in her neck under the skin. This is a cause for concern and we are worried that she has possibly disconnected the device, damaged the nerve it was attached to or ?????? We look for him to test the device and do x-rays next week. Please pray that everything will work and be OK and that there will be nothing that has to be 'surgically fixed' with this.

In a couple of weeks we will return to do the MRI that we were not able to have done during our hospital stay (we were bumped for a child with a newly found brain tumor) and then after that a follow-up with the neurologist to hear the results of that test and the 48hr EEG.

Camilla continues to be happy, otherwise healthy and a joy and blessing to our lives! We have so much to be thankful for-

Friday, August 28, 2009

children's hospital

The words just don't seem to go together to me - Children's Hospital. Don't get me wrong I'm soooo thankful to have a place that focuses on healing children and to have a place like that so near to our home - we are very lucky. Somehow though I can't manage to get over seeing and hearing those two words together- Children's Hospital. Last week while we were in the hospital there were several things that I struggled with not only concerning Camilla being a patient there and what she was having to deal with but just the fact that anyone has to be in this place. If you ever have to go to CH (and I hope you never do) I recommend keeping your head down and don't speak to anyone until you get where your going! Ha - bet you'd bump into quite a few walls that way! But seriously, last week when I'd make my coffee run down the street or even to the main floor for the cafeteria I made the mistake of looking around. Looking around to see an ice cream truck parked in front of a hospital, an empty playground outside of the hosptial (all of the children are inside), the emergency helicopter continuously taking off and landing, a VERY upset family in the chapel, walking down the halls and hearing screams and crys, seeing 'quarantined' signs on doors of rooms with a crib in it, a Mother in the main lobby whose whole world had obviously just collapsed and a small funeral home van pulling up to the back of the hospital. I struggled with being identified as a "Children's Mom" 4 blocks away at Starbucks because of the band on my wrist and having to relay why my child was there to a stranger and then having to listen to a Mother say words like 'bone marrow transplant' and 'luekemia' about her son. It is so very difficult to erase these voices and images and then to think that I'm part of this group. I'm not an outsider looking in. I have a child with very serious medical problems and a very unsure road ahead of her laying in that hospital the same as the other Moms I see around me. That realization hurt the most - that and the fact that this will probably not be our last visit to this place.

Please bear with me - good days and bad - I promise to post about Camilla's tests and pics from our stay next! We have also celebrated her fourth birthday recently - pics to follow soon!

Wednesday, August 26, 2009

video from hospital-

I'll be posting pics soon of our stay at Children's this week but I wanted to go ahead and post this video - it shows how the wires are wrapped and gives an idea of how she was confined to the bed for 48 straight hrs. She sure was a trooper!
video

Monday, August 24, 2009

medical update

camilla is in Children's hospital until Wednesday-48 hour EEG followedby an MRI-please keep her in your thoughts and prayers

Tuesday, August 11, 2009

school days, school days, wonderful golden rule days...

Camilla started school today! She loved going back to her classroom and seeing her teachers again - Mrs. Moore, Mrs. Morgan and Mrs. Campbell. She really didn't want to leave the house this morning and it took some enticing but once she got to the classroom she immediately began working on puzzles and meeting new friends. It's going to be a great year!

what an adventure!

This past weekend Brandon and I took Camilla to Alabama Adventure for one last summer-fun blowout before school started back! She loved the water park, the train, the carosel, the mini ferris wheel and most of all the log flume! Sorry, some of the shots are blurry and my batteries died half-way through the day!

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!!

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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!


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Friday, June 26, 2009

more beach fun-

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Beach Fun

We spent this past week in Orange Beach with Jennifer, Jason, Justin and Lindy. The place we stayed was awesome and we had such a great time! We spent alot of time at the pool, on the slides, playing put put, eating, shopping and more. Camilla learned to swim with her swimmies on and she LOVED the slides at the place. We also had someone take some family pics on the beach - I'll post those as soon as they are available or you can check out a sneak peak at www.aimeereynoldsphotography.com The slide show and videos below show just some of the fun we had-


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videoand last but not least this rowsing video of Brandon and Jason playing wii tennis - it was just to funny not to post
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Monday, June 15, 2009

It was an.....

...itsy, bitsy, teenie-weenie, yellow, polka-dot bikini.... Camilla just loves her pool and her 'kini'!!She looks so cute with that belly sticking out over the bottoms! Just thought I'd share some fun pics!

Wednesday, May 27, 2009

messy - messy - messy

We all have one of those pics of ourselves as a child being a messy eater - well here's Camilla's - messy and tired

Fun on the Farm!

We attended the Driggers-Snell (Mom's Dad's side) family reunion over Memorial Day weekend in Brandon MS. Part of the weekend was spent gathering at the Nichols Christmas Tree farm where Camilla had a blast! We enjoyed getting to visit with all of the fam and hate that we don't get to see them more-

Tuesday, May 5, 2009

derby day

Another GREAT year at the Kentucky Derby party - big hats, silly ties and great friends!

Monday, April 27, 2009

Zoo Fun & Other Stuff!

Last Friday Camilla's class at Westside went on a field trip to the Montgomery zoo. Of course Mommy went along for the fun and it truly was a good day! Camilla enjoyed the zoo but was not really fascinated by any of the animals (except maybe the otters and flamingos) but she did love riding the train! We had a good time visiting with her class and their families and her teachers! She and Jordan especially had a good time! After the zoo trip we came home and were playing in the yard and that's when I discovered that Camilla is slimming up - I swear those shorts used to be snug!

One of the pics is of Camilla and Pat trying on each others shoes at the Sax in the City event. She is such a girly girl!

The other pics are of some friends and I in Gee's Bend. We took a short field trip of our own Saturday afternoon and got to see the billboards for some of the famous quilts and we even got to have our pics taken with the lady who made my fav quilt (it was one of the ones used as a stamp). She is 92 years old and just happened to be sitting on her front porch when we pulled up. She made this quilt featured on the billboard in 1936. This was definitely a unique experience.