Saturday, February 25, 2006

A Rollercoaster of a Week!

It has been a rollercoaster of a week! Camerans seizures have been up and down and every where this past week! As mentioned she had a cold with a temp last week causing her seizures to go up a bit about 9 a day then things settled for a few days of having 4 or 5 again. Then we weaned her Keppra down again on Monday and things got ugly. Her clusters came back and the intensity of the seizures got worse. It seemed they started to climb in numbers so we called the Neuro with concerns and he informed us that she was having seizure withdrawls. He told us to go back up on the Keppra if things didn't improve but Thankfully it did. We are going as previously planned of having the Keppra weaned completely today! She is having a little more again but we hope with a few days things will be back to normal again. Cameran is eating so much better the past few days. She is taking meals 3 times a day. For breakfast she gets 6 oz formula and a bowl of Toddler cereal(great texture for her). Lunch she gets two #2 jar foods a fruit and veggie and Supper she gets big girl food if she is willing but it has to be mashed. We have her down for formula only twice a day 1st in the morning and one before bedtime the rest of the day she takes warmed(only) Vit D milk(she loves it). Oh and 1 Pediasure(vanilla which she only takes warm also) a day, she is doing great!

Cameran doing her new Kissy Kissy Face! I tried so hard to get this photo she is all over the place and will not sit still for a second but as you can tell its not even centered. She is always on the move! But I just love this new sound and face she makes and so does Caleb! He says she looks like a little Fish....

Sunday, February 19, 2006

What's New??

Cameran had a great appointment with her Neuro on Friday! They said her EEG looked great. But are requesting another one in the end of March since she is having about 4-5 head drops since 2 days after her last EEG. Also they say they will have an EEG after every weaned med to make sure we are going forward and not backwards. They couldn't believe she was walking but noticed she is off balance said it's probably due to the meds but won't be sure until she is off some of them. She will be completely off the Keppra this coming Saturday and they won't be weaning the Klonopin until after her EEG in March we will be seeing the Neuro that same day also. Her eating has greatly improved so we are slowly moving in the Vit. D milk with her formula and we hope to have her off that(formula) by the 1st of April! She is taking #3 jar foods sometimes and some table foods she is turning things around it seems. Cameran is still babbling some and picks up new sounds daily yesterday she started making a pig noise in the back of her throat it's hilarious!
Caleb, Cameran and Mommy in yet another snow we had on Saturday and Brrrrr... Was it ever cold 28 degrees and 13 at night! Cameran was all bundled up but loved being out even though it was only for about 10 minutes thats all we could take. Caleb made snow angels for the 1st time it was great!
Cameran biting her lower lip it was so cold. Now she has made this a habit and has a rash under her mouth! Silly Girl!

Cameran came down with a fever on Thursday the 16th so I took her to the Dr. He said it was just her nose! He said when her nose runs clear she will be fine but when it starts in thicker that she will run a temp with it said just some sort of viral thing! But her ears and throat looked great and chest sounded fine minus the slight cough she has at night and 1st thing in the morning. This Picture was taken at the Neuros office her temp spiked back up again while we where there 102.5 so I had to give her some Tylenol well she was fighting with me(she hates meds I wonder why?) and managed to get most of the bottle in her hair and clothes little stinker! Well after that she konked right out before I could even get her picture with her Dr.'s! She ended up sleeping all day poor baby girl! Her seizures picked up to about 10 that day and 9 on Saturday and she has about 3 today so far no temp since yesterday! But Dr. Williamson(Neuro) said this is very common with kids with seizures says an illness opens the door to them so hopefully we can keep her well the remaining of this sick season! The pictures of them in the little play house where also taken at the hospital! They know how to keep the kids Happy! Caleb always looks forward to going to the Hospital in Nashville-as he says!! Oh I wanted to share my Valentine Kiss with you! Valentines morning, Cameran (of course was in bed with me) I felt her moving around but didn't open my eyes yet and just then she leaned down and gave me the Biggest Wettest Kiss ever and I opened my eyes and she said "HEY" and gave me another Kiss and I just melted. She is the sweetest! Later that day she had her 1st Development class with TIPS and as her teacher was leaving Cameran walked to the door and started doing the Kiss Kiss sound with her lips tucked like a fish now she walks around the house doing it. She has been doing new things like this all week, she has come to me and says mama(but I'm not sure if its intentional since she always does it only when fussing)! Who knows, I just love all this new stuff and will take anything!

Monday, February 13, 2006

6 Months since dx's and Things are Looking Better!

Cameran is doing great and couldn't be more happier! She has been all smiles and is making new sounds. We have seen great improvements from her already and in such a short time since we started weaning one of her meds. She has just continued to impress us and has been making us laugh with those new sounds. One is hilarious she sounds like the boy off Forrest Gump: HEHEHEHEHE(this cracks us up all the time), she also says FFFFFFF....., BYEYAYAYAYAY(doesn't know what it means) and Ahhhhhhhh....., WAYAYAYAYAYAYA! She is doing great and Mrs. Susan(speech teacher) was very impressed and thrilled to see such a great improvement just from last week. She was doing great eye contact during class and has been looking for mommy and daddy all great signs! She has also started taking jar foods again(certain brands and flavors) and is willing to try and eat some table foods....YEAH! We are so extatic of all these new things. As said it has been 6 months since being diagnosed and things are looking up. She still has about 1-4 head drops a day but her learning is starting to roll! She had a great Birthday Party and dug right into her cake she was happy at some times and got upset a few times with such a mess on her(just like her Bubby did)! But she did fantastic and was so Happy to see everybody! She starts her Development classes tomorrow(TIPS) and goes to see the Neuro again on Friday the 17th! We can't wait for him to see our baby girl go! Keep up the Great Work Cameran! ;-0

Here is Camerans 1st experience with the snow! She liked it for a little while then it got really cold so we went back in. We have woke up to a light snow for the past 3 days now its just been so pretty to see. Caleb loves it!

Friday, February 10, 2006

Looking Great!

Cameran's 1 year check-up went great. She weighed in at 18 pounds(has lost again) and her length was 30 1/2 so moving right along there. He noticed she has low tone in her legs. I never would have guessed that but we had been telling them how she falls all the time like she is dunk but we just thought she was off balance due to all the meds. She received 3 shots and barley let out a wimper, she is such a brave little thing, I tell you! So proud of her! Her OT appointment was Thursaday and she was one mad little girl since we had to hold out her eating until they could watch her. She took the bottle great and is holding it on her own as you could see in the pics below. She didn't do well on textures she would gag they say she has great oral movements as she mouths toys and spoons wellBut she has a sensitivity to textures. They gave me some great pointers that we will be working on to get her to eat jar and table foods again. Meanwhile they also noticed her low tone in her legs thats why she falls so much but she doesn't catch herself most of the time she falls like a tree she has low tone in her arms and trunk also. They are setting her up for Physical Therapy to help her build up those muscles! Today she has made a great improvement and took 2 jars of food. One this morning she ate it with rice cereal mixed in for a little texture and one this evening. She loved every bite of it! What a relief this is....So glad to see her eating again! We have started her weaning of the Keppra HOORAY....about time. So far she seems a little irritated but is taking it rather well. Her Neuro says it will take only about 2 weeks to be completely weaned off of it. Next comes the Klonopin it will take a little longer. That will just leave us with Zonegran and Topamax. That is where we will stay unless the seizures get worse again. I will be posting some pics of her digging into her cake this weekend sometime, as her party is tomorrow. I can't wait to see what she does!

Our little Water Baby.... She loves to take baths and splashes water everywhere! ;-0

Monday, February 06, 2006

Happy 1st Birthday, Cameran!

Things are going great right now. She is all smiles and seems to be so Happy all the time! Last week was very difficult for her and us, as she seemed to struggle with the upped dosage of her Topamax. But things have calmed down and are back to normal and her nose is clearing up. She still has the occasional spasm/seizure every other day and sometimes a few in a day but they are so hard to detect. They are very noticable if she is in your lap but if she is up playing and walking around they are much harder to detect.

It has been 6 months now since our world got flipped upside when we got handed the news of her diagnosis. We still have found no cause or reason to her Infantile Spasms but I beleive we have come to terms with that, as it has been a constant worry of "What If's". But we can't live our lifes that way, as there may never be an answer. We just want her to be happy and she seems to be doing a great job there. We love to see her smile and show off those cute little pearls and every once in awhile hear a little laugh! She is such a precious little angel and I thank the Lord every day for her and her Big Brother Caleb, they both are so wonderful and just makes the days seem so easy! Cameran seems to show more and more intrest in her Bubby everyday and he eats up the attention he loves to have her follow him around like a caboose(well sometimes)! Thank you all for your support it makes it so much easier when we have all of you behind us! Happy Birthday Cameran may you continue to fill us with all that JOY that the Lord has given you! You are such a blessed little girl and we fill richly blessed to have you and Caleb(Mommy and Daddy's little loves)! We love you!!!

Wednesday, February 01, 2006

Things seem to be settling down!

Camerans blood test came back noraml and what a relief that is. She is doing much better and seems to be happier. She is still having the occasional head drop every other day but it is such an improvement. She goes Feb. 8th for her 1 year check-up where she will be receiving her vaccinations we are just praying for the best and that she has no seizure reactions to them like before. She also starts with OT on the 9th to help with her eating! Wish us Luck..... Oh and Happy 1st Birthday to our sweet Baby Girl.... We love you! She will trun the Big 1 on Feb, 7th!

This past week as I mentioned Cameran has just been having a rough time with the recently upped dosage of Topamax. It took a number on her as we seen her become increasingly more Irritable to crying non stop and losing her balance from walking which wasn't helping things as it frusterated her to no end. As of last night things seem to have started settling down. Her walking got much better and she started smiling again the same is going on this morning. She still has the runny nose but we will see if more time with the Clarinex Syrup will help any! We spoke with the Neuro last night where he told us there would be no weaning of her meds until her nose was better since an "illness" can lower the threshold for seizures. Thats probably what we have been seeing but she has shown no temp or other syptoms besides the heavy breathing that started this past week. So he has requested a Basic Chemistry (blood work)to be drawn today to make sure things are ok if so that would rule out Acidosis. We hope to see things continue to get well for her as her mommy and daddy are both anxious to get her off some of these meds. He told us that if we wanted we could knock her Topamax back down a notch for a couple of weeks until her nose got better if we wanted to. But we don't want to go through this whole upped process again with the effects she has already been through! So we are staying put until things settle down. I'll post again when they get us in for the blood test which had to be requested by the Neuro and the paper wasn't sent in yet so the nurse is supposedly taking care of that. So I will be calling in a while to see if its been set up yet!