Merry Christmas

Happy Halloween

Happy Birthday Paige and Bree

On Sunday the girls had several friends and family join them for their 2nd birthday. The theme this year was Disney Princess. Everyone had a great time and the girls favorite part of the day...the cake! We feel so blessed to share this day with them. The 29th will be their true birthday. They have changed so much over the past year and are doing things we never thought would happen. WE LOVE YOU PAIGE AND BREE !!!

Mommy, Paige, Bree, and Daddy

Paige wearing her new bracelet

Big brother Connor with his sisters

The Princess Cake

Paige - Finger licking good!

Bree eating the yummy cake

Paige licking the plate clean

Mommy helping to open the gifts

Grammie and Grandma watch the kids

We get to wear glasses!!!

The girls got their glasses today in the mail. We were so excited to put them on the girls and they were curious as well. Paige was looking all around and trying to understand what she was seeing. Bree wore them for a bit and like Paige they were in their mouths pretty quick. I know it will take some getting used to, but I'm hopeful this is what they need. Here are some pictures of the girls trying on their new glasses.

A Beautiful Sight

Yesterday the girls had their appointment with Dr. Blumenfeld, a neuro-opthomologist who is partners with Dr. Gold, the girls opthomologist. The appointment went great...the doctor was wonderful, and the girls are FINALLY getting treatment for their vision problems. Turns our the reason for the turning in of their eyes is they are far-sighted. They also have an astigmatism as well. The doctor has decided to prescribe glasses to the girls. He wants them to wear them for three months and come back to see if the crossing has improved. If not, he will talk about patching and if that does not work by the time they are three, he will discuss surgery. But for now, I'm just excited that we're doing something and that their is a "cure". As for what the glasses will look like, I have posted a picture as well. Paige's will be pink, of course. The only other color for Bree was a baby blue...no purple! One surprising thing about all of this is that Paige's prescription is much stronger than Bree's...we always thought Paige's vision was stronger.

Therapy Evaluations

The girls had their physical and occupational therapy evals last week. They both have showed improvement over the past 6 months and have meet that goals that were set. These are the age equivilents that the girls scored under the PDMS-2.
___________________Paige_________Bree__________

Stationary----------------11 months---------8 months

Locomotion---------------9 months----------7 months

Object Manipulation------13 months---------12 months

Long term goals:
Paige - to walk four step without assistance
Bree - to sit unassisted and play with a toy for thirty minutes

Short term goals:
Paige - cruise left and right five feet with verbal cuing and to creep with reciprocal pattern
Bree - be able to move into and out of sitting without assistance and creep forward five feet without assistance.

My personal goal for the girls is to see them walk down the aisle next October in our wedding. I am confident that will happen.

Our Wedding Website

I decided to create a website with all the information and ideas on the wedding planning. We would like all of our friends and family to visit the site and let us know what you think.

The link : Our Wedding

Video of Paige's Frog hop

Visit with the Neurosurgeon

Today the girls had an appointment with Dr. Trumble to review the scans done two weeks ago. Paige's CT scan came back with improvement of the metopic synostosis. She still has a slight malformation on the left side of her skull but will not need further surgery or treatment. She will follow-up with another CT in a year. Bree's MRI did not produce clear images because of her wiggling and moving. They were able to note that the sub-arachnoid spaces had decreased, so from a surgical standpoint she has been cleared from Dr. Trumble's care. However, in her first MRI it was noted that she had Agenesis of the Corpus Callosum (ACC - absence of the tissue that connects the lobes of the brain). This MRI, though unclear due to the movements she made during the scan, showed no signs of a corpus callosum. It was suggested that we contact her neurologist to speak with him about requesting another MRI with sedation to verify the findings. ACC is not life threating in and of itself, but when you add the diagnoses of Infantile Spasms and vision problems, we could be dealing with a bigger problem. Since the day they were diagnosed I will never forget the mentioning of Aicardi Syndrome. She could have all of these problems and not have that syndrome, but it will always sit in the back of my mind. So we will see what the neuro-opthomolgist and follow-up MRI says before I start to worry.

New Pictures

Here are the pictures we had taken for Pete's birthday. These are the first professional pictures ever taken of the girls. We hope to add Pete the next time!

What are they up to now!

I've been so busy lately planning the wedding so I am finally taking time to update everyone on the girls. All is well on the home front. Last week we took the girls for a CT and MRI in Orlando. Paige's CT went better than expected...Arnold Palmer wanted to sedate her and requested that she fast(meaning no food for 21 hours). Pete wasn't too happy about that, so we were able to reschedule at a different facility that does not require sedation. After 5 minutes Paige was done with her CT and did great. Bree had a MRI...see cried the whole time...who wouldn't...it's so loud! We see the neurosurgeon on August 25 to see how everything looks.

Paige continues to thrive and Bree continues to do her best. Last week I spoke the the Speech Therapist at First Steps and she said the Paige's speech level is at her corrected age level and sees no need for therapy at this time. She will do a full assessment with both of the girls in October. Bree is finally sleeping throught the night and we have notices she's more alert during the day now. Sitting for Bree doesn't seem to be something in the near future but I work with her everyday...stretching and rubbing the stiffness in her hips and legs. She is showing more interest in toys and has even pulled herself to grab them. Her biggest hurdle is her sight. Her left eye is constantly turned inward and we're hoping the neuro-opthomolgist will have something to say about it next month. Paige is...well...Paige! She's very stubborn and if she can't get what she wants she will scream till she does. Everyday I am picking up the dog bowls because she loves to play in them. We have to keep Connor's bedroom door shut because she's always getting into something, and the countless times I have to go in her room and tell her to lay down and go "night night".

Everyday is an adventure with the girls and everyday I wake-up wondering what they will do today!

Happy Birthday Daddy!

August 18 is Pete's birthday and the girls want to let their daddy know that they love him very much.

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Class of '98 Reunion

This weekend I celebrated my 10 year class reunion from New Smyrna Beach High School. The weekend long gathering turned out to be better than I imagined. I was able to meet up with many of my old classmates...most I haven't seen since graduation. Here are a few pictures from the festivites.

Go, Go, Go!!!

The girls are really on the move now. There's no part of the house Paige has not explored yet. She may not be crawling on her hands and knees but she's getting around pretty good with the army crawl. She's also started to pull her self up on things and almost made it to standing. Bree has also start to army crawl...we thought this day would never come for her. She's much more delayed than Paige but we finally have hope that she may one day walk. I think Bree's limited vision is what is holding her back. She doesn't see as far as Paige and she's not as adventurous as her either, so to lay in one spot for most of the day is normal for her. She does like to spend time in her walker...life at a different vantage point. Speech is going better than anyone expected as well. They're always mocking sounds and seem to focus on me when I'm speaking to them. I love it when I put Paige to bed and she says "night night". When I walk in their room in the morning Bree will say "hey girl"...it's too cute. Paige has mastered the word "more" and signs it as well. She uses it when she eats. Paige also learned "no"...I'm always telling her to get away from the dog bowls so she hears no quite a bit. They are finally getting to a point were they no longer feel like newborns and more like little girls. They still have a long road ahead of them, but if everything goes as it is they are well on their way to a normal life.

A Magical day at the Magic Kingdom

I have wonderful news to share with everyone. This past weekend I was taking on a surprise trip to Disney by my wonderful boyfriend Pete. We arrived at our hotel Saturday morning to drop off our bags before we went to spend the day at Disney. Unfortunatly the rain lasted most of the day and we ended up pretty wet. We were on our way out of the park when Pete decided he wanted to walk through Cinderella's Castle. The daily parade was on it's way so I was in a rush to bet the traffic to the exit. Pete took my hand...I could feel it shaking as we stood on the bridge of the castle. He then got down on one knee...took out a glass slipper with a diamond ring placed inside and said the five word I've been waiting to hear my whole life - "Elizabeth, Will you marry me?" I cried...he cried...I, of course, said yes...and we began to enjoy the rest of our evening. Later that day he took me to an amazing restaurant in the resort where we at scallops and Filet Mignon. The waitress was nice enough to take our picture and even brought out chocolates for the occasion. We watched the fireworks and walked along the boardwalk for the rest of the night. As of now we haven't made and definate decisions on anything, but we are thinking of having the wedding sometime in the fall of next year. I feel like the luckiest girl in the world because I get to spend the rest of my life with the man of my dreams!

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All Talk...

and we're loving it. The girls have been gabbing so much lately. Paige's favorite word right now, and mine too, is "Nice". Everytime she plays with my hair she like to pull on it...so to get her to stop I tell her "nice". All of a sudden she said it back. She's also saying "more" "two" "no" and "hey". Bree's quite the talker as well. Our favorite is "Uh Oh". She says it all the time...as well as "one" "nice" "hey girl" and "one". They both have said "mama" "dada" "baba" for some time but none of the words have been with purpose. When hungry the both make num num sound...that I do know! I so great to say a word to them and watch them really think about it and try to say it. My only hope is that this continues without any loss of word...and for their to be intent in their speech. Bree continues to do well with the Lamictal. She's now completely off the Keppra and by next week she will be at her theraputic level. Paige continues with the army crawl and I'm now having to keep a closer eye on her. Bree is attempting to sit longer...using her hands still to balance herself. A cold has gone through the house this past week making life a little hectic. With all the crying and lack of sleep...from both the girls and I...it's been miserable. We're all managing though.

You'll be Missed!

The past couple of weeks have been difficult for our family. Two weeks ago Pete's father was admitted into the hospital for kidney failure. He'd recently been there for the same problem and had undergone dialysis. He was diagnosed with lung cancer a year and a half ago and over the past few weeks his health began to deteriorate. Pete and his family spent everyday by his bedside...not knowing if he'd ever come home. When Hospice was introduced to continue his care everyone knew it would be a matter of days. Around 4 a.m. Monday morning...the day after Father's Day...Donald passed way. He left behind a wife, daughter, son, and three grandchildren. He was the only grandfather for Paige and Bree...unfortunately they will never remember him. Services were held in Worcester, MA...where we just returned from. Even though we knew his time was coming, the passing of a loved one is never easy.
This post is dedicated the a man who will never be forgotten.

Donald Coderre
March 31, 1946 - June 16, 2008

Nathaniel's Hope Make 'm Smile 2008

The girls and I attended an event today called Make 'm Smile... a day dedicated to honoring and celebrating kid with special needs. This is the 6th year held in Orlando at beautiful Lake Eola. We were paired with other families for a "Buddy Walk" around the park...visiting all the booths and enjoying the entertainment. It was especially exciting for us because we were able to me a mommy and daughter frome the Infantile Spasms support group on Yahoo! Amy, and daughter Katelyn, have kept in contact with us through email and phone calls for quite a few months now. Today we were finally able to meet face-to-face. Everyone had a great time...enduring the heat and humidity...and brought home bags full of goodies. The vendors there were great and we can't wait to go back next year. A special thank you to Amy for inviting the girls and I. We can't wait to see you guys again.

Visit Nathaniel's Hope for more information!

Also visit our photo album for photos of the day. There are also new pictures in the "12mths and up" album.

So much to do...too little time

So it has been quite some time since my last entry. I've lost 8 lbs. and feeling better everyday. Connor's last day of Kindergarten is tomorrow and we're excited to start our summer. He spends most of his days in his new pool and I perdict that's where he will be for the next couple of months. His 6th birthday party was lots of fun. Anytime we have family and friends over it's always a good time. The girls are doing great. We just had an appointment with the geneticist on Monday. She was very pleased with their development so far. She want to repeat the test she did 6 months ago... an organic acids test... she wasn't satisfied with the results. She also mentioned another test that is fairly new and unknown if it is covered by insurance. Until that is known we'll have to wait. She said she's at the end of the road for tests. It looks as though we may never know what happened to our little angels.
The girls are still teething and continue to be fussy throughout the day. There are good days...some for Paige and some for Bree. We continue to work with Paige on getting into the sitting position. For Bree, we're still working on her balance and position will sitting. Both are showing interests in crawling... I'll find them on their hands and knees often. Paige has even started to "army crawl". Bree is working on focusing on toys as she plays with them while Paige is working on releasing toys into a bucket. They are becoming more vocal and babble sounds as if they are really telling you something. Their weight continues to concern me. Paige has lost .5 lb. in the past 3 months. While I know she become more active in the passing months... with her constant appetite I would expect some gain if not maintaining the weight she had. Bree has stayed constant in her weight... neither gaining nor losing.
This weekend the girls and I will be attending an event in Orlando at Lake Eola for families and kids with Special Needs. It's called Make M' Smile... a day filled with fun activites, free food, entertainment, and the opportunity to meet other's in our situation. I will be getting together with a mom from Melbourne who had a two year old daughter with IS. We've emailed and talked on the phone for many months now and I excited to finally meet her. I will let all of you know how everything goes and promise to add more photos.

All about mama!

So I've decided to start a healthy new life. Last week I began eating healthier and being more active. I've been tracking my calories and have joined a support group on www.myfitnesspal.com. So far I've lost 3 pounds and I feel great. I've been walking more (mostly to pick-up Connor from school). That's about 2 miles both ways. I've also done some gardening which has left me pretty sore today. My goal is to loss 40 lbs, which is a pretty big deal for me. Ever since the girls were born I've blamed my weight on "baby fat". 18 months later and I finally accepted the fact that it's not "baby", it's just FAT. So I've committed myself to how ever long this will take. I wanted to join the YMCA, but with my hectic schedule and taking care of 3 kids, I didn't know if I could make it as often as I would like. I'm looking into buying a piece of exercise equipment to use every free chance I get at home. I can finally say that I'm doing something just for me. I've learned that if I don't take time for myself I'll only run myself ragged. So I'm commited to this healthy lifestyle and to feel as good about myself as I did two years ago. Wish me luck!

To All the Momma's Out There!!!

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Paige Sitting like a Big Girl!

Sorry I haven't written!

Life is becoming more hectic with the girls - but in a good way. Therapy continues to go well. They are sitting for longer periods of time (30-60 seconds) and are more willing to be on their hands and knees. Paige is even attempting to push herself up. Their visions is improving with Paige tracking more consistently and Bree focusing longer. They received their DAFOs on Friday-to help position their feet properly during standing. Water Therapy continues to be their favorite. Their muscle aren't as tight as they used to be and Paige is even kicking her legs one at a time. This is a sign she will be able to crawl and eventually walk. Bree continues to be symmetrical in her movements-banging both hand and feet at the same time. Paige is self-feeding while Bree is still trying to make the connection between her hand and mouth. Last week Paige's weight was 18lbs. 2 oz. and Bree 18 lbs. 1 oz. (still not on the chart yet).
Bree's seizure remain under control while Paige has shown no signs. Their personalities have really developed over the past month. Paige is our rough and tumble girl. she's constantly on the move and always beating up on her little sister. Just the other day she bit Bree so hard on the thigh she still has bruises. she has non-stop energy and loves her Jumperoo. Paige now has 8 teeth and has become quite the back talker; doing whatever it takes to get our attention. Bree is our little cuddle bug. she's perfectly content laying on the floor watching what sissy is doing. Paige is always stealing her toys so she never really gets a chance to play. she loves to be held and she gives the best hugs and kisses. Bree only has 6 teeth but her smile is what I love the most.
There continues to be some sleep issues with some nights only getting 4-5 hours of sleep. While this isn't an everynight thing, between the two of them, it's everynight for me. For now the doctor visits are taking a break until June, so all I have to deal with is therapy 4 days a week. For now, life is good!

Happy Easter

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Happy St. Patrick's Day!

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New Pictures

Click on the link to the right to view newly loaded pictures.

Stressed !!!

Bree medication was recently increased from 200mg twice a day to 300mg and we're all paying the price. While it seemed to control her seizures it has also increased her irritability to a new level. She's constantly screaming and crying and will wake up several times a night for hours at a time. One minutes she'll be smiling and playing with her toys and the next she's screaming at the top of her lungs and nothing will stop her. Paige doesn't seem to be bothered by her sister's cries, but she will wake up at night if her sister cries long enough. Connor's constantly asking why sissy is so sad and I don't know what to tell him. I thought the irritability was just from teething but I have yet to see any teeth. Deep down I know it's the Keppra and I'm scared how long this will last. My guess is that as long as she's on this dose she will continue to be this way. I tried calling the neuro on Friday will no luck. There has to be something we can give her to make her happy again.

They're Back ! ! !

Over the past couple of days our little Bree hasn't been the same. She's been in her own little world and at time I couldn't bring her back to ours. I blamed it on the medication, even though she's been on it for 6 months. Yesterday during therapy I was in one room with Paige while Bree was in another. Bree's theapist asked if I could come into the room; Bree wasn't acting right. I took one look at her and eventhough I'd never seen a seizure other than the spasms, in my heart I knew she was having one. She was sitting in her tumble form chair with drool streaming from her mouth. She was moaning with this absent look in her face. Nothing would snap her out of it. She was like that for about 3 minutes before she "woke-up". I called the neuro right away and he told be she was having complex partial seizures and that she's probably had many before this that went unnoticed. We are increasing her Keppra over the next three days to 3ml BID. If that does not work the neuro will discuss adding a second medication. So I will be keeping a close eye on her the next few days.

Neuro visit

The girls had an appointment with their neuro on Wednesday. He was very pleased to see how well they were both doing. We asked when Bree would be able to come off the AED. He told us he wasn't in any hurry because if she had a seizure her development could fall back again. He also agreed with me to hold off on vaccinations until they're at least two years old. He sees no need for an EEG at this time but if we do suspect seizure activity he will request one. He also reminded us that if we would like to be referred to Shands in Gainsville or Miami he would be glad to. He wants us to know that we've done everything we could to diagnose the girls. We also asked about seeing a neuro-opthomologist. He told us there wouldn't be much they could tell us that he hasn't. So the appt. went very well. We will see him again in July.

Both the girls are making progress when it comes to sitting. Paige sat last night for almost two minutes. The therapist are working with them to stop the extension (back-arching). Paige was able to pick up two pegs from a peg board and put them in a bucket. Her hand/eye coordination is really starting to come along. Bree was able to push herself onto all fours with so light pressure on her bottom. While it only last for a few second it's still a milestone to me. They are being evaluted by the PT for their 6 month check. They have been approved for continued services through EI for another 6 months. We're still waiting to hear when they will be receiving their Bottoms-Up seat as well as the shoe inserts.

Water Therapy continues to be going well. Last week the girls were able to relax their arm for the first time, as well as be completely submerged without getting upset. They absolutely love the water and it's fun being involved in the process. Saturdays are becoming our favorite day of the week and I may start Connor with swim lessons. I know he would love it and will learn quickly.

Valentines

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Therapy, therapy, and more therapy!

We've recently added two new forms of therapy to the girls schedule and the girls enjoy both. Here is a list of the therapies they are receiving:

Occupational Therapy - 30 min. a week
Physical Therapy - 30 min. a week
Vision Therapy - 45 min. a week
Water Therapy - 30 min. a week
Massage Therapy - at home

We are currently looking into Music Therapy. I'm not sure if anyone is available in our area; our PT mentioned it in conversation and we're interested. Paige's PT commented that Paige is showing the ability to be sitting already. The challenge is keeping her focused on something long enough to want to sit. They have transition to milk and are slowly adjusting to more solid foods. They are not feed on their own yet. Bree has yet to hold her bottle like Paige. Bree's vision is my main concern. Her eye's are consistantly moving independant from one another. They will see the Opthomologist in a few weeks and I will be asking about a neuro opthomologist referral. They both are suffering from allergies this week and have not slept well. Eating is more difficult because they can not breath through their noses. Lots of fussing and crying!!! We see the ped tomorrow to see what he says.

Making Strides

Much has happened since the holidays. The girls are done with their helmets and will not need to see the neurosurgeon until August. He has requested that Paige have a CT scan done at that time to follow-up on her Metopic Synostosis. As for Bree, she will have a MRI to check on the enlargement of the sub-arachoid space of her brain. They will see their Pediatrician in a week for their 15 month immunizations. The following week they will visit the neurologist for a follow-up visit. We're not sure if he'll request an EEG-the girls have been seizure free for 7 months now! They will also see the Opthomologist to make sure their eyes are healthy despite the CVI. Whether eye patches or glasses will help them right now, we're not sure. These appointments will be the last for some time. They have overcome so much and have finally accomplished some milestones. They are more active and alert; playing with toys and showing a desire to sit. They have transitioned to whole milk and Paige is drinking from a sippy cup. They are eating more solid foods and now have 4 teeth each. Paige seem to be focusing and tracking more and Bree loves to clap and sing. They continue with OT/PT/VT once a week. I'm hoping to get more PT to get them sitting. Their personalities are starting to show now that they're more active. Paige is the dominate one who is always beating up on her sissy, stealing Bree's binky out of her mouth and toys out of her hands. She likes to bite and pinch and enjoys rough play. Bree is very submissive. She takes everything Paige does yet is very snugly and loves to just cuddle instead of playing. It feels great to be so wanted now!