Our Little Angels

48 hours in 1 room with a 3 year old = Ahhhhhhhh!!!

2010-04-13T20:11:00.000-07:00

This past weekend, Bree and I spent a lovely three days at Florida Hospital in Orlando for her 48 Video Electroencephalogram (VEEG). The room was beautiful as well as the facilities...better than Arnold Palmer (although it is newer). After we were there a few hours, Bree was finally connected and where ever she went her backpack and the video camera followed. For a little girl with Sensory Processing Disorder, she did amazingly well with the wrap on her head. The first day went by pretty fast and even though there were a few time she woke up that night, we both slept pretty well. By the second day she was used to the cords coming from her head and adjusted to wearing the backpack. The second night was a breeze...sleeping through the night. Sunday couldn't have come quicker. Spending three days in the same room was grueling...not being able to take Bree for a walk or go to the play room was difficult. I thought it would be strange having a camera following everything she did, but after a while I forgot it was even there. It ended up being a successful reading and all we know now is that she had no events (seizures) while we were there.

Update

Slow-spike were found in the left frontal lobe. We knew they would find background activity and now we know where it's coming from. There was no focal point found but we now know that her current level of medication is not working. She will now increase her amount of Lamictal. to 50mg in the am and 75mg in the pm. Let's hope she has no seizures!

Easter 2010

2010-04-06T10:51:00.000-07:00

This past week was a hectic one...the kids were on Spring Break. I had planned to do a family portrait session, but it was unfortunately cancelled. So, I decided to post my own family session from our Easter holiday. My husband, our kids, and I went to my mother-in-laws for the day and spent time with her and my sister-in-law and nephew. The food was delicious and everyone had a wonderful time. The kids ate plenty of candy and my son enjoyed the egg hunt over and over again.

Here are a few pictures from our holiday.

Epilepsy Awareness Walk

2010-02-02T17:59:00.001-08:00

The girls and I will be a part of an important cause this March. I've created "Team Paige and Bree" and will be raising money for epilepsy awareness and research. As you know the seizure disorder the girls were diagnosed with, Infantile Spasms, is a devastating form of epilepsy. There is no cure for IS but with our donations researchers will be able to continue looking for one.

The walk will be held on Saturday, March 6th at 9am at the beautiful Lake Eola in Orlando. You can make a donation by clicking on this link:

TEAM PAIGE AND BREE

I'm so proud to be a part of this and look foward to growing our team and surpassing our goal of $200.00. My dear friend Maureen has joined our team and has already raised $55.00. As of today Paige and Bree have raised $150.00. A big thank you to Michelle McDonald, Beth Chapman, and Theresa Perrault for your donations. And a BIG thank you to my Uncle Howard for his amazing donation of $100.00. It's people like you who give us hope that there will someday be a cure. Thank you and look foward to posting more thank you's as the donations come in. And a post is never complete without a picture, so here you go.

A new year...a better year!

2010-01-02T17:59:00.000-08:00

Good bye 2009...goodbye hospital visits...goodbye seizures. That's my resolution for this year - not to lose weight (not that I wouldn't like to) or eat healthier (would like to do that as well) but for our daughters to have a happy and truly healthy year. It always seemed like as soon as one medical bill was close to being paid off something would happen and another would come. Our girls have been through too much...more than anyone should have to go through. We just want our girls to live life as normal as possible and spending hours in the ER or days in the hospital is never normal. We are so lucky to have such beautiful daughters and the idea of when the next seizure will come is always in the back of our minds when it shouldn't be. So let this year be different.

Christmas 2009

2009-12-28T17:08:00.000-08:00

This holiday season was an exciting one. Of course, I baked too many cookies and spent too much money but the kids had a wonderful time. The kids and I went to my mom and grandmother's on Christmas Eve to open gifts; my aunt and uncle met us there with many more gifts. Connor was so excited to see his very first big boy guitar...I hope he takes to it-he loves music. Paige and Bree were given twin baby dolls that are able to talk and sing back and forth through a sensor on the sides of their heads. It's pretty amazing to watch. The best part of the day was watching the girls open their gifts for the first time. Never have they tore into a gift and it was a sight to see. That evening the kids received their traditional Christmas Eve pajamas from Santa before Connor wrote Santa a note and left out cookies and milk.

Bright and early the next morning, Connor was ready to go and minutes later every gift was open. I feel so very fortunate to have such a wonderful husband who is able to provide our family with such happiness. The morning was followed by dinner made by Pete's mom. It was a wonderful ending to a wonderful holiday. Here are a few pics of the holiday.

Yummy cookies

Christmas Eve

at Grandma's house

The girls got a keyboard...

and Connor got a guitar

The talking dolls...too cute

Pete and the girls with Pete's mom

so many toys!

Connor's Class Christmas Party

2009-12-20T11:41:00.000-08:00

Connor had been looking forward to this day for weeks. Not only because it was the last day of school before winter break, but because of all the candy and cookies he knew he would be eating. I was able to attend with another set of parents and watch the kids fill up on Pigs in a Blanket, chips, and lots of sweets. The Grinch who stole Christmas played in the backround while the boys and girls shared what they wanted for Christmas. I haven't had the chance to spend much time in his classroom and know very little about his new friends. It was quite an experience!

Here's the ornament he made for the family!

Paige and Bree's Christmas Party

2009-12-20T11:08:00.000-08:00

This past week has been filled with Christmas activities at school for the kids. Thursday was Paige and Bree's Christmas party...filled with singing and crafts and lots of cookies. The girls class joined the blended class to sing carols and other fun holiday songs for all the parents and family members. While the girls didn't actually sing, they had a great time listening to all the other children. The teachers set up several craft stations were the children made ornaments, Rudolph puppets, playdough cookies, and (the girls favorite) a pool filled with ribbon and tinsel to play in. It was a wonderful day spent with the girls in their class.

Paige, Bree, and Ms. Pio

Paige loved making this ornament

Paige pasting Rudolph's nose on

Bree and Pete gluing Rudolph antlers on

The ribbon and tinsel pit

Playing with their friend Noah

Daddy helping Bree down the slide

Having some cookies and juice

Turned out to be a beautiful day

Paige and Mrs. Casey

Storybook Parade

2009-11-24T11:18:00.000-08:00

Today I was invited to Edgewater Elementary for the annual Storybook Parade. Children throughout the school dressed up as their favorite storybook character and walked the parade route along the front of their school for all their parents, friends, and family. Paige and Bree were part of the story "The Very Busy Spider". Mrs. Casey and Ms. Pio decorated their wagon to look like a spider and the girls dressed in all black. It was such a cute sight. One class dressed in their pajamas and had chicken pox drawn on their skin. Each class seemed to have a theme and it was a great way to get all the kids excited about ready. I'm so grateful that our daughters were able to be a part of it.

Here are a few photos from today:

Happy Halloween

2009-11-01T07:23:00.001-08:00

The girls and I had a fun day dressing up as our favorite little bugs. As you can see Paige was a Lady Bug, Bree was a Bumble Bee, and I was a butterfly. We stopped by to see Pete before heading to Canal Street to do some Trick or Treating and people watching. After that, we came home and the girls and I gave out candy...the kids were in awe, since we gave out full sized candy bars and M&Ms. It had been a long day and the girls went to bed with little fuss. We missed Connor very much and I'm sure he had a great time! Below is a slideshow of the pictures taken yesterday.

Halloween 2009

2009-11-01T07:22:00.001-08:00

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October 29, 2009 will be a day to remember!

2009-10-30T12:08:00.001-07:00

Yesterday was quite the day for our girls. Not only was it their 3rd birthday, but their first day of school and the day Bree received her new wheelchair.

The morning started off pretty good...everyone was up bright and early and still a little sleepy. Their lunches were packed the night before and their clothes were already picked and laid out. Breakfast went smoothly and by 7:15 everyone was dressed and ready to go. Connor was dropped off at his school before we head just a short drive down the road to the girls new school. We arrived just as all their classmates arrived on the bus and the girls were the first one's to class. We put their bags and lunchboxes in their own cubbies and let them get settled in before heading home. Once we arrived home I came to the realization that I have no kids to unload, no mess to clean up and it was a nice feeling. I spent most of the morning on the phone telling everyone about their morning and after some light cleaning it was time to head back to school to pick everyone up. Ms. Casey, the girls' teacher, filled us in on their day. She made the comment on how the girls were a "handful". That's saying something, from an ESE teacher who's dealt with Special Needs kids for over twenty years. Despite a slight meltdown from Bree the girls had a great first day of school.

Shortly after getting home we received a call from the man who was responsible for delivering Bree's new wheelchair. He was running behind and didn't arrive till after 5pm. By the time he assembled and adjusted everything it was after 8pm and everyone was exhausted. There are still a few pieces that need to be ordered due to them being the wrong size or not arriving, so we'll have to wait before she can use it.

Because of all the excitement of starting school and getting a wheelchair, the birthday was somewhat overshadowed. To think about everything we have been through the past three years only proves to me how strong of a family we really are. We had many scares over that time, not knowing if they'd survive and if they did, what quality of life would they have. To look at them today I finally accepted who they are and no matter what happens they will always be OUR LITTLE ANGELS!

Look who's 3...it's Paige and Bree!

2009-10-27T14:21:00.001-07:00

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Look who's 3...it's Paige and Bree!

2009-10-27T13:54:00.001-07:00

The girls had a fun filled day Sunday at their Dora the Explorer Birthday Fiesta. Many friends and family joined us to celebrate a huge milestone for the girls...their 3rd birthday. There was chips and salsa, 5 layer dip, mini tacos, and the kids favorite, quesadillas (or as Paige likes to call them...chickadillas). They got lots of new clothes for school, although the girls were more interesting in playing with the tissue paper and balloons than to see what they got. Everyone had a great time and it was nice to see the house filled with so many little girls for Paige and Bree to play with. By 5pm Bree was exhausted and fell asleep, but as usual, Paige was ready to keep the party going. I'm so glad that the girls were able to enjoy themselves this year and look forward to what the next year may bring.

Unfortunately, my camera broke. So all the photos were taken with my camcorder. They're not the best quality and most of them were taken by random people, but you get the idea.

Bree's eye surgery

2009-10-09T09:16:00.000-07:00

Bright and early this morning...well, not bright...it was 5am, Pete and Bree were off to Orlando. I had to stay home with Paige and take Connor to school. Her surgery was schedule for 8am and by 9:30 she was wheeled to recovery. Everything went well; the dr. went in and cut the muscles that run along the side of each eye. He decided to only cut the medial muscles in hopes that it wouldn't cause an over/under correction. We were given the success rate of 70% and we'll take it. With out this surgery, Bree would most likely lose vision in her left eye. So, the chance is worth taking. She will have to get drops in both eyes three times a day for a week and Tylenol as needed. She ate lunch, which is a good sign, as eye surgery can cause nausea. We'll be keeping a watchful eye on her, making sure she's not rubbing her eyes too hard. She will have a pinkish tinge to her tears and the whites of her eyes are pretty blood shot. Overall we are very pleased with the outcome so far...here is a video of Bree about 2 hours after the surgery.

Paige and Bree

2009-09-30T19:41:00.001-07:00

Just testing out the new camcorder my grandmother bought us as a wedding gift.

Too busy...let's get caught up!

2009-09-30T19:05:00.000-07:00

So, I've neglected the blog the past month and a half and even though we're only three days out from the wedding, I wanted to take some time to update everyone. Since Paige's seizure, she has responded well to her new medication and is now at theraputic level. A few days after she came home from the hospital she came down with a fever. It lasted a week and a half and hovered around 102'. After several tests, including being catheterized, we found out she had a urinary tract infection caused by E.coli. She was placed on antibiotics and recovered quickly. Poor thing handled it well and thankfully everyone else was fine.

The girls had their evaluations in prepartion for the start of school, and this past Tuesday had their IEP meeting with all of the people involved in their transition. The meeting was three hours long, and even though there were 12 of us in a 12'x10' room, we managed to keep the girls entertained without any major meltdowns. The girls were approved for a full day program that will include Physical, Occupation, Language, and Vision therapy. They will be transported by bus that is proving curbside service...an aide will be required to be on the bus with them at all times due to their seizure disorder. We went over all their goals for the year and I'm very confident they will be able to meet them. They will have their first day of school on their third birthday, Thursday October 29. We have a few more things to do before they start: create an Emergency plan with the pediatrician, get a prescription for their lactose intolerance so that if they eat lunch from the cafeteria, they will be able to substitute milk for juice, and register with the school.

Unfortunately, the girls will not be going to the same school as Connor. We discussed getting a variance so that Connor could transfer schools, but were told that it may be possible that the girls would attend Connor's school next year. So, we'll keep Connor where he is. I was concerned about getting three kids to two different schools, but with the girls being picked up 20 minutes before I leave to drop Connor off, we realized everything will work out fine.

What's next for the girls...well, Bree will be having eye surgery on the 9th of October. Yes, the day after we return from our Honeymoon. Her pre-op is actually the day we get back. So, no time for rest in this family. She has a 70% chance of the correction working the first time. We were told to expect more surgeries. It's same-day surgery and only requires a ten day recovery. She will be good to go before school starts.

Well...with the wedding only three days away, I should be able to keep up with this more often. Updates on the surgery will come soon!

So what happened next?

2009-08-14T07:20:00.001-07:00

Once a room was available at Arnold Palmer, the EVAC arrived to transport her from Bert Fish. Pete rode with her and I followed in the car. By the time we arrived a APH Paige was starting to wake up and ask for food. By now it was about 8:30pm and she hadn't eatten since the night before, so she was pretty hungry. We had to wait for the dr. to come in and okay her to eat...the longest 30 minutes ever. They asked us every question under the sun and finally let Paige eat. They planned on doing a MRI and EEG that night. It wasn't until 1am that she went in for her MRI, so she was going to have to wait till the morning for the EEG. Thankfully she slept through it and did not need sedation. If she needed to be sedated we would have needed to wait till the following day for the EEG; the sedation would have altered the results.

Tuesday morning a neurologist who was on call came in to discuss the result of the MRI. He explained that there was a significate change since her last one in 2007. The white matter of the brain had decreased and the Corpus Callosum was very thin. He was a little hesitant to discuss i detail what all of that meant and suggested we wait until the EEG results were in before we ask anymore question. That left us with a sickening feeling in our stomachs.
By 5pm they were finally able to come to the room and perform the EEG. Paige slept through the wires being taped to her head and the 20 minute reading. We weren't even able to arouse her for the strobe light. She was a tired little girl.

Around 8:30pm Paige's neurologist, Dr. Desai, was able to review all the report. He said he was pleased with what he saw on the EEG; there were a few spikes in her right frontal lobe and her sleep pattern was normal. The MRI results were what he expected for someone with the deficits that Paige has. She showed overall atrophy but nothing that he didn't expect to see. It's not good news but nothing life threatening. He started her on Lamictal, the same medication Bree is on, and is titraiting over 5 weeks to get her from 5mg to 25mg. He said as long as the evening continued to be uneventful and the doctor that does their rounds in the morning okay them, she could go home Wednesday.

That night was uneventful and by the time the doctor made her rounds in the morning, Paige was about 90% back to her old self. We were finally released around 12pm and told to follow up with our primary in a week and neuro in a couple of months.

So far, Paige has returned to normal and the medication is not causing any problems. We always knew the seizures would return, we just never knew when our to what extent. It's hard to go back to the way things were...I'm constantly watching for signs one is coming. Everytime I hear her cry I worry she's having another one. What happens if she has another and she's standing up and falls? I'm so scared to let her leave my sight. What's worst is that this could still happen to Bree. I won't let this rule our lives, but for the next few days, I know it will consume me. So here are a few pictures I took while we were at Arnold Palmer.

Paige still a little dopey from the meds.

Paige's room

Paige playing in her crib

Toys the hospital provides

Slept through the whole EEG

All the electrodes

After the EEG

Feeling better

All her IVs

What a trooper!

Poor Little Paigey - Day 1

2009-08-13T19:27:00.000-07:00

This past few days have been pretty rough for the family...especially Paige. Just last week the neuro was saying how pleased he was to see the girls doing so well. Then Monday happened! The morning started off a little strangly for Paige. I picked her up out of her crib and brought her out to their play area, as I do every morning. As I turned around to get Bree I heard a loud thunk. I turned around and found Paige laying flat on her back...she just fell straight back from a sitting position. I went over to pick her up and notice she was very stiff and unresponsive. I flashed back to the day she fell from the back of the couch and went unconscious. It was a little different this time. She snapped out of it pretty quick, so I proceeded to get Bree.

For the next two hours Paige cried and cried. I decided to lie down on the couch with her and after a couple of minutes she vomitted all over herself and me. I put her in the tub...somewhere she loves to play, but she just sat there. She vomitted four more times before lunch. I couldn't explain it. It was nap time and she went down with no fuss. I knew she would be tired after such an exhausting morning. About an hour into her nap I heard some fussing, so I went in her room to check on her. I walked in on something I've been dreading for over two years...she was having a tonic-clonic seizure (some may call it a grand mal seizure). After 8 minutes I finally called 911 and when the paramedics arrived the rushed her straight to the EVAC where they decided to take her to the emergency room.

She continues to seize until she arrive at the ER, where they put an IV in her leg to give her a very large dose of Ativan. By the time I got there the seizure was under control. From the times I could account for I put the seizure at 27 minutes. I don't know how long she went for before I heard her cry, but she may have gone into status epilepticus, which can cause brain damage and even death. Paige slept the entire time we were in the ER and seem unaware of where she was or who was there. After 6 hours in the ER and several blood tests, x-ray, CT scan, and a spinal tap, infection was ruled out and she was able to be transferred to Arnold Palmer Hospital for Children in Orlando.

I will update you on our stay at Arnold Palmer in my next post. Here is the video I took of Paige during her seizure. It may be upsetting to some.

Neuro gives ok / Social Worker visits

2009-08-09T18:22:00.000-07:00

The girls had their yearly visit with the neuro today. He was very pleased to see all the progress the girls have made and confirmed the diagnosis of Cerebral Palsy. We discussed weaning Bree off her meds. since her last seizure was a year and a half ago. He gave us a script of an EEG that we can do at anytime at Arnold Palmer Hospital. Once he had read the report and see that their is no seizure activity he will go over the process of weaning her off the Lamictal. He said Paige appeared to be at an 18 month old level, while Bree is at a 12 month old level. The worry of microcephaly is gone since their skull grew 3/4 of a millimeter...the grow stalled for some time last year. He said he would like to see them on a yearly basis from here on out. It was a great visit.
Later that afternoon a social worker from the school board came to the house to conduct a family/medical history meeting. He was a very nice gentleman and asked use more questions then I was prepared for. He asked us about everything from my pregnacy, their birth, hospitalizations, diagnoses, and overall health. He then asked about each girls strenghts and weakness, what kind of personalities they had, their best qualities, and any concerns. After a series of questions he mentioned that they show signs of Autism Spectrum Disorder. He said he's not a doctor and doesn't diagnose, but he sees many kids with this disorder and is seeing similar signs in the girls. This is something we need to look into more and talk to their Primary Care doctor. Now that that meeting has taken place we only have one more evaluation, Psycological test, and then they will combine all their reports and set up an IEP meeting. Then the girls will be ready to start school and get all the services they need. I can't believe their turning three soon!

I walk...hold on!

2009-07-17T18:22:00.000-07:00

Paige has finally warmed up to her walker...so much so that she'll crawl over to it and walk all around the house with it. The best part is that it's motivating Bree to try it as well. I always know when she want to walk because all of a sudden I'll hear her yell "Hold on" and off she goes. Bree wanted in on the action so I put her in the gait trainer and she loved it. I took of the abdominal supports and she was able to hold her self up for several steps. All of this is very encouraging...especially since the start of school for them in October is fast approaching. I'm very confident that Paige will be able to move with just the support of the walker. Bree will still need the wheelchair. Speaking of wheelchair, a man from Barnes Healthcare Services visited our home this week. He came to do Bree's final measurements to be sent to the company in California that is making her wheelchair. It should be her in time for school, if all goes well with the insurance company and Shriner's.

Paige pushing Bree in her gait trainer
Our little Bree giving it her all!
Will Paige let go and do it on her own?
Come on Bree...we need to turn around!

Happy 4th of July

2009-07-06T18:32:00.000-07:00

This year was pretty low key for us. Pete had to work the whole weekend and Connor was at his dad's, do the girls and I decided to visit Grandma and Grammie for the day. My Uncle Raymond was in town for the race, so he was able to see the girls again. The girls were in bed before the fireworks even started, but I got a nice show from all the neighbors. Zoie ran around the house like a crazed animal, yet Pete and the girls slept through it all. Here are a few pictures I took of the girls wearing the same dress they wore last year. It fits better this year than last. Shows how little they've grown!

Bad mommy...bad, bad, bad!

2009-07-01T20:12:00.000-07:00

Okay, so I've become all to overwhelmed with everything wedding. I've neglected this page and am here to redeem myself as a good mommy! So much has happened over the past month and a half. An emergency room visit a few weeks ago was probably the most "exciting" event since then. Our little Paigey took a tumble of the back of the couch and landed on the top of her head. After the scare of my life to find her unconscious, I rushed her to the ER to find that she had a skull fracture. All is well now...she actually woke up the next day as if nothing ever happened.

Our Bree Bree is just a hopin' away. She's our little bunny foo foo! She struggles to keep up with her big sister, and everyday is a challenge for her, but she does if with a smile on her face. She's pulling herself up on things now and is participating more with Connor and Paige as they play. Her vocabulary has exploded...I swear she's just been holding back this whole time just to show off now. The gap between what Paige is doing and what Bree can do is slowly closing in. I'm so proud of her!

Connor's 7th Birthday Party

2009-05-20T06:21:00.000-07:00

Everyone celebrated Connor's birthday with a Sponge Bob Square Pants Luau. There were tiki decorations, leis, balloons, and an awesome pull-apart cake with cute Sponge Bob characters. The weather was perfect and everyone enjoyed the pool that took me weeks to get clean after the long cold season of no use. Here are a few pictures and a video of Connor's big day!

First Transition Meeting

2009-05-16T19:47:00.000-07:00

Pete and I took the girls to Early Steps for their first meeting in preparation for school. We meet with their advocate and a member of the school board to discuss what needs to happen before the girls start school when they turn three. They will need to have a hearing test, a phsycological evaluation, get caught up on their shots and have a Goals meeting about three weeks prior to their birthday. They provide half-day and full-day services...most likely at Edgewater Elementary. I told them that I was worried about transportation since Connor will be going to a different school. They will provide bus transportation for they girls, so we'll need to work that out. They will continue to receive OT, PT, and ST until they go to kindergarten. I'm so excited to see them be able to socialize with other children. It's a little scary, since they are still very dependant, but that's what the teachers and aides are there for. Now I'm waiting to get Bree's wheelchair processed by the insurance company so the equipment company can start assembling it. We're hoping Paige will be able to use her walker independantly enough to not need a wheelchair. Before I know it I'll be all alone during the day...doesn't seem real!

Too cute for words!

2009-05-06T19:35:00.000-07:00

The girls have really stepped it up with their vocabulary lately. Paige is our bigges talker...especially when she wants something to eat. She's always saying "cookies, yogurt, applesauce, chicken, hotdog, cracker, cheese, cereal", any food she can think of until I give in and say ok. Bree always wants to know what's going on, saying things like "gotta go, go walk, take a bath, go eat, we're home, go pool, and my favorite, I love you more". They also love to sing songs like, Etsy Pitsy Spider, Row Row Row your boat, Patty Cake, Twinkle Twinkle, and Barney's I Love You are their most requested. We had a couple of birthdays so I tried to teach the girls to sing Happy Birthday...Paige will say "Happy Day To You"...too cute! It's truly unbelieveable what they are able to say now...Bree is trying to keep up with Paige. How many kids do you know that can hum the theme song to Jeopardy? My Paige can, along with Sponge Bob Square Pants, and Dora the Explorer. It has gotten so hard to recall all the word they know, and everyday I hear a new one. It's so exciting!

One step at a time

2009-04-11T18:38:00.000-07:00

It was just another day a therapy...Thursdays are Physical Therapy day. Paige started first with PT while Bree had Massage. The therapist usually puts the girls in the walker and has them walk down the hall to the closet with the cookies...great motivation for Paige. Beth, their PT, has been working with Paige on walking without holder her hands. She took a few steps while holding only one hand. I was amazed...she looked like such a big girl. Then the moment I will never forget. Beth let go and Paige took 5 steps all by herself. I have to admit I had tears in my eyes. I didn't know if I would ever see her walk on her own. Now I'm confident she'll be walking with limited help by school and hopefully by the wedding in October. I'm so incredibly proud of her.

And let's not forget Bree. I think she's feeling the pressure to keep up with big sis. The past few days she's making more strides towards crawling. She usually gets around by "army crawling" but has graduated to the bunny hop that Paige was so famous for. In addition, now that she is spending more time on her hands and knees, she has learned to prop herself up into a "W " sitting position. Her core strenght is really improving and I'm hoping in a few months she'll move to a proper sitting position.

Unfortunatly, my camera is not working. As soon as I can I will post pictures of Paige walking and Bree crawling and sitting.

Day at the Park

2009-04-03T12:57:00.001-07:00

Paige, Bree, Connor and I took a trip to the park with Grandma last week. Connor made friends with a couple of girls...go Connor...while to girls played on the swings. I took a couple of pictures on Grandma's phone. My camera isn't working so I haven't been able to take any pictures of the kids lately. Everyone had fun and it was a beautiful day.

Bree loves the swings.

Paige is such a cutie!

Weeeeeee!!!!

Paige, with her hair in her face...drives me nuts!

So, Paige learned how to pedal the tricycle at therapy this week. She was so excited she rode right into another bike. She's really getting the hang of it. Bree took a few steps in the walker the same day. She looked like such a big girls standing so tall. I would be such a happy mommy if she could use the walker by October, but I know that's a huge goal to put on her. So, I'd be happy if she was just sitting unassisted by then. As for Paige, she is definately capable of walking with the walker by then. I guess we'll have to work as hard as we can, and see what our girls can accomplish in the next 6 months.

2009-04-03T12:26:00.000-07:00

Our New Braces!

2009-03-13T12:07:00.000-07:00

Wednesday was our trip to Shriner's Hospital in Tampa...mission...get DAFOs and evaluation for wheelchair and walker. The trip went as well as the last one...some screaming, some sleeping, and as always, lots of eating (little piggies). Today is our second day with the braces and so far so good. Bree was having some trouble with her muscles tightening, but she's learning to relax and has had them on for almost an hour now. Paige adapted well, but still makes attempts to rip the velcro off. Here are some picture I took of the girls and the Gait Trainer.

Paige taking Big Girl steps!
I know, I know! Get rid of the stinkin' binky!
Bree was a little scared at first.
Well looky there...I'm standing all by myself!

So now we have to wait for all the red tape to get sorted out before we get Bree's wheelchair and Paige's walker.

This is Bree's wheelchair. It will look a little different because they are adding a seating system as well.

This is Paige's exact walker!

It's flu season!

2009-03-04T18:47:00.000-08:00

Fever and runny noses and body aches, oh my! It all started with me last week. I spent 4 days in bed with a 102 temp. and the worst body aches ever. It took a lot out of me and taking care of twins all day was very difficult. Luckily, my mom and Pete's mom came by to help out. Pete was amazing...he would come home after work and take care of the girls and house work. I'm so lucky to have him. I finally started to feel better on Monday; just in time for the girls to get sick. They spent two days in bed with diarrhea and vomiting. Bree had it first, then Paige. Bree is getting better, Paige is getting there. Hopefully tomorrow we'll all be back to our old selves. Connor and Peter got lucky this year. Connor spent most of his time with his dad and grandmother, who was visiting from MA. Pete had a flu shot last year, so the girls and I will definately get one this year.

Are we there yet?

2009-02-18T16:06:00.000-08:00

I always knew that Tampa was a long drive, but until you have twin two year olds in the backseat, you'll never understand just how long. When we arrived the girls were evaluated by a nurse practitioner, who went over their lengthy medical history. She told us that Bree may need Botox injections in her legs to improve the high tone. This will help to prevent possible surgery on her tendons in order to lenghten them. We will see her again in six months, and at that time she will determine if Botox will be needed. We then spoke with someone from the seating department. He discussed with us the girls mobility options for school in October. It looks as though Bree will need a wheelchair and Paige may only need a walker. They will have a thorough evaluation in a month. Finally, the girls were casted for their braces. Basically, they take the same material used for casting broken bones and wrap it from their knees to their toes. Then, just before it is completely dry, they cut it off. They then use this mold to create braces that we will later have the girls fitted for. That was it for our visit with Shriner's Hospital and at the end of the day everyone was exhausted. Ten hours is a long day for anyone but we all held up...now we get to do it all over again on March 11.

Shriner's here we come!

2009-01-26T19:00:00.000-08:00

We finally made our appointment with Shriner's Hospital in Tampa. We're scheduled for February 11 to speak with the doctor about new DAFOs to replace the one's the girls outgrew months ago. DAFOs (Dynamic Ankle Foot Orthoses) are basically a brace the girls wear on their feet to help keep their ankles aligned properly to aid in standing and walking. They will have X-rays of their hips and legs, as well, to check for proper bone growth. Shriner's Hospital is a facility specifically for children with orthopedic and burn issues. They provide free services and will assist the girls with any future need...any equipment such as wheelchairs or walkers. This will be especially helpful when they start school after they turn 3 in October. We are toughing it out and making the 2 1/2 hour drive there and back the same day. We know if will be tough on the girls being in the car for 5 hours, in addition to the long appointment. It will be tough for us as well. I'll update you on how the appointment goes.

Long time...no post!

2009-01-21T18:42:00.000-08:00

I feel like such a slacker for not updating the girls blog, but I've been so busy with all the wedding planning. So I'm finally taking time out of my busy day to let you know what's going on. The girls are doing great. Paige started Speech Therapy two weeks ago and is doing well so far. Right now they are working on labeling everyday items. For example, they will show her a flashcard of a banana and say "Here is a banana", then they will put an apple and a banana on the table and ask her to get the banana. She seems to understand, but when it come to "Give me the banana" she seems to lose it and just throws the banana to the floor. Besides that, she has developed quite the vocabulary. She loves to sing and says "I do it" "diga diga ba (take a bath), "walk (any time you stand her up she has to walk) and "what's that". She's definately aware of her surroundings...when we pull up to Aqua Park for swim therapy she'll say "pool, kick kick kick, and dig dig dig" which are words they use while she's in the water. Enough about Paige...now about Bree Bree. She is really coming along. We recently had to lower her bed. After going into her room one night, to find her standing up for the first time, we decided it was time. We actually caught her hung over the side of her bed, almost in Paige's bed. She's starting to gain some balance response when sitting and is starting to use her hands to hold herself up. While her development isn't as steading as we would like it, we're still proud of the little milestones she does reach. The best part is that she's been seizure free for almost a year. We're proud of our little angels.

Merry Christmas

2008-12-26T11:55:00.000-08:00

Happy Halloween

2008-11-02T08:13:00.000-08:00

Happy Birthday Paige and Bree

2008-10-27T06:31:00.000-07:00

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!!!

2008-10-01T09:58:00.000-07:00

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

2008-09-24T05:29:00.000-07:00

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

2008-09-21T05:25:00.000-07:00

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

2008-09-09T19:10:00.001-07:00

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

2008-09-02T15:35:00.000-07:00

Visit with the Neurosurgeon

2008-08-25T19:31:00.000-07:00

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

2008-08-21T13:42:00.001-07:00

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!

2008-08-21T13:00:00.000-07:00

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!

2008-08-18T13:20:00.000-07:00

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

2008-08-05T09:18:00.000-07:00

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!!!

2008-08-02T12:17:00.000-07:00

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

2008-07-14T12:42:00.000-07:00

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...

2008-07-04T14:06:00.000-07:00

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!

2008-06-25T06:50:00.000-07:00

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

2008-06-07T11:03:00.000-07:00

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

2008-06-05T06:55:00.000-07:00

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!

2008-05-16T08:28:00.000-07:00

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!!!

2008-05-10T20:18:00.001-07:00

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Paige Sitting like a Big Girl!

2008-04-25T06:24:00.000-07:00

Sorry I haven't written!

2008-04-15T08:40:00.000-07:00

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

2008-03-22T17:32:00.001-07:00

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Happy St. Patrick's Day!

2008-03-17T08:26:00.000-07:00

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New Pictures

2008-03-16T07:06:00.000-07:00

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

Stressed !!!

2008-03-16T06:55:00.000-07:00

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 ! ! !

2008-02-27T05:48:00.000-08:00

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

2008-02-21T13:16:00.001-08:00

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

2008-02-14T13:12:00.000-08:00

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Therapy, therapy, and more therapy!

2008-02-05T07:49:00.000-08:00

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

2008-01-25T05:58:00.000-08:00

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!

2007-12-29T09:46:00.000-08:00

Merry Christmas !!!
I can't believe an entire year has gone by. It's been a year since the girls came home from the hospital. They're 14 months old today. Over the past few days they've cut their top two teeth and are going through a growth spurt. Since the day they've come home they've never eaten more than 4 ounces and now they're at 6 ounces with solid foods twice a day. They are rolling over all the time now. Bree still isn't holding her bottle-she not ready yet. We go next week to the neurosurgeon to find out if they can come out of their helmets. It seems like it was yesterday when we were waiting for them to come off the Apnea monitors.
6 Months Seizure Free!!! Bree continues to do well on the Keppra while Paige continues med. free. I always wonder if Paige's development is progressing quicker than Bree because of the meds. It's so hard not to compare. When I look at them they seem so happy; that's all that is important. I still dream of the day when they can look me in the eyes and smile.
Our holiday was spent with family. We were able to swap the kids bedrooms so the girls could have the larger room. Connor got new furniture for his big boy room. Everyone is happy now even though it's a little chaotic. It's amazing how many toys will fit in one living room. Between the two high chairs, two bouncy chairs, activity centers, Connor's hot wheel tracks and toys it looks like a day care.
Our only wish for the new year is continued freedom from seizures, getting caught up on all the medical bills, and for the girls to be walking by this time next year. It may be a bit unrealistic but even if they were sitting unassisted we would take it. Check out the photo album link for all our holiday photos.

More Good News to Share!!!

2007-12-03T13:39:00.000-08:00

The final test results came back on the Rett test - NEGATIVE!!! We've finally come to a point were we can all breathe a sigh of relief and move on with our lives. To know that the girls will have a chance to walk and talk one day is amazing. They are doing great. Paige is really starting to focus in on things and making attempt to look. She is also holding food and bringing it to her mouth. She's mastered rolling over in her bouncy chair but not on the floor. She doesn't like to bare weight on her feet - she'd rather bounce instead. Bree is very different than her sister. She is doing very well with sitting and standing until she arches back. She is also scooting all over the place on her back and tummy. She isn't focusing or grabbing for things yet. Her left eye is always turning in so I not sure it she can see as well as sissy. She's not holding her bottle or bringing food to her mouth yet. We're debating whether the differences are due to the medication Bree is on. The helmets should be coming off soon - hopefully in the next month or so.

This weekend my uncle got married and I was fortunate to attend. Daddy stayed home with the kids so that I would be able to go. I was a beautiful ceremony and I so happy for them. CONGRATULATIONS UNCLE BUCKO AND AUNT TAMMIE!!!

Sunday was my birthday so I spent the whole day with my family. We went shopping for holiday decorations and went out to lunch. It was the FIRST time we'd ever taken all three kids to a restaurant and it went very smoothly. We came home and put up all the decorations then had birthday cake - my favorite - layers of chocolate cake and brownie and chocolate ganache! Yum Yum!!!

Right now life is good and we're all looking forward to spending the holidays at home with Connor, Paige, and Bree.

2007-11-24T13:11:00.000-08:00

Happy Thanksgiving!!!

Thanksgiving this year was spent at my grandmother's house. My mother, sister and her family, brother, and all of my gang spent the day cooking ,eating and remembering all the things we're truly thankful for. We decided to fry our turkey which, I believe, is the best way to cook a turkey. The food was good but being with our family made it great. Our family has been through so much this year - the loss of my grandfather and Pete's grandfather, Paige and Bree's diagnosis, and the financial burden of have two sick children. We've made it though! Everyday has it's challenges but we get through them and we know that we have eachother to do it. Our family has been there for us every step of the way and for that we are truly THANKFUL.

Second Series of Tests

2007-11-06T05:37:00.000-08:00

Last week the girls visited the geneticist to have the last series of test ran for Rett Syndrome. They only drew blood from Bree to save money since the test is so expensive ($2700.00 before insurance). It is assumed that if the test comes back positive on Bree it will for Paige as well. This test will be looking for a mutation of the CDKL5 gene. This particular gene mutation is linked specifically to Atypical Rett Syndrome. The test will be performed at Baylor University in Houston, Texas and will take 4 weeks to receive the results. We pray everyday that the results are negative and our daughter will have as normal of a life as possible. If this test comes back negative their neurologist would like us to take them to Shands Hospital in Gainsville for additional test. Yet again, more waiting and seeing!!!

Happy Halloween

2007-11-02T12:17:00.000-07:00

Happy Halloween!!!

This year was the girls first time to celebrate Halloween. Last year the girls were only 2 days old and in Pediatric Intensive Care after a very premature birth. Big Brother Connor was a doctor, Paige was a pink flower fairy and Bree was a purple one. We decided to stayed home with the girls and hand out candy to all the children that came by. Connor went with his cousin Trick or Treating and had a great time. Here are some of the pictures taken that evening.

Paige and Bree's First Birthday

2007-10-29T12:03:00.000-07:00

Paige and Bree are 1 today!!! It amazes me, and everyone else, that an entire year has gone by. 2007 will be a year we will never forget. Our entire family has been through so much, especially the past 4 months, so it was a blessing that we were all able to celebrate together this weekend. Between their early arrival (born 3 months premature), both Dad and I lossing our grandfathers, and their diagnosis of Infantile Spasms we weren't sure how we were going to make it. With the help and support of family and friends we got through it all and the girls are healthy and developing (slowly but surely). They talk all the time (hi da da, bababa, growl and grunt, and how can I forget the screaming). Bree is constantly rolling and scooting around the floor on her back while Paige is holding her own bottle and sucking her toes. They both love to play with light and music toys and everything they get their hands on goes straight to their mouth. They've got a few more weeks with the helmets; something we won't miss. Their vision is something we continue to work on and there is some improvement. The pictures are from their party this weekend. We had a great turn out and everyone had a great time. We want to thank everyone for being there for us this past year and we're excited to see what the next year will bring!

Getting ready for the Party!

2007-10-26T08:35:00.000-07:00

Tomorrow is Paige and Bree's first birthday party. Everyone is so excited to celebrate their first year. We have many people coming, almost 50 people, that have never seen the girls. The theme is butterflies and dad is making a special cake for the occasion. Since they are technically 9 months old because of their prematurity I am baking a cake that has no dairy or egg just for them to eat. Their immune system is back to were it needs to be so we're not as concern with everyone being around them. I can't wait for everyone to see them in their new pink dresses. I still can't believe it's been a whole year already. With everything they've been through the year went faster then any of us imagined.
Next week is a very busy week for the girls. They have somewhere to be everyday next week.
Monday - Helmet adjustment in Orlando @ 11:00
Tuesday - OT/PT in Daytona @ 2:30
Wednesday - Dr. Carithers (pediatrician) @ 8:45
Conklin Center (vision) in Daytona @ 11:00
Thursday - Dr. Wheeler (geneticist) in Orlando @ 3:00
Friday - Dr. Desai (neurologist) in Winter Park @ 10:00
OT/PT in Daytona @ 1:30
I will post new pictures as soon as possible.

Paige Finally Gets a Tooth

2007-10-16T08:38:00.000-07:00

A few days ago Dad was checking to see if Paige had cut a tooth yet. He found one! The next day I checked to see if it had cut through and found out she had two teeth coming through. We were surprised because she never got fussy like Bree did when her tooth came in. It's so exciting to see them growing up so quickly. Both girls have started to babble. Bree sounds like she's saying "hi da da da da" Daddy is very happy about that. Paige will go on and on when she babbles. All this talk is very promising since many children with IS are non-verbal.
Last week the girls saw the Opthomologist to see if their vision was improving. He told us they have some farsightedness. He also said that Bree was tracking better and Paige was focusing better. Their visual development is as delayed as everything else. There is nothing he can do for them right now and would like to see them again in 4 months. So all we can do is continue to work with them to strenghten their tracking and focusing.
Their birthday is quickly approaching and everyone is excited to see them. We're ready to celebrate surviving one year with our girls.

Bree Gives Paige A Run For Her Money

2007-10-08T07:54:00.000-07:00

Over the past two weeks Bree has really began to shine. She is rolling over from back to belly and belly to back. She also cut another tooth, which makes two for Bree and zero for Paige. Paige was usually the one to do things first but Bree has really picked up the pace. Paige does have one trick that Bree can't do. She likes to put her toes in her mouth. They have both come so far since their diagnosis and we are very proud of them. OT/PT has given both of them a boost in their development. Their biggest roadblock is they have trouble bearing weight on their hands. They insist on having their hand in their mouth at all times which makes it hard to encourage them to push themselves up when they're on their bellies. So sitting is further in their future then we had hoped. I was hoping they would be sitting by their first birthday on October 29, but that doesn't seem reasonable. You take for granted how hard it really is for a baby to meet their milestones when they have disabilities. Their helmets may come off next month, so they may have better balance after that. We still take it one day at a time.

Good News Comes Our Way!!!

2007-10-02T14:00:00.000-07:00

I decided to call Dr. Wheeler (the girls Geneticist) today to see if the test results on Bree came back. The nurse called me back and let me know that the MECP2 test for Rett Syndrome has come back NEGATIVE !!! The relief was only momentary because there is still another genetic mutation that could come back positive. We will be visiting the office again to have the CDKL5 test performed. We'll have to wait another 4 weeks for those results. The testing will not end there. There will be visits to Shands Hospital in Gainesville to discuss other options.

So far Bree is doing well on her new med. She hasn't been as fussy but is more drowsy than usual. Both girls had their helmets adjusted yesterday and poor Bree's helmet is just too tight. Paige's helmet is still too loose. Hopefully they'll get it right next time. Tomorrow we will take the girls to see their neurosurgeon. He will evaluate whether the helmets are improving the flatness or not. We should only need to have them adjusted every other week now - one less trip to Orlando!

Therapy is going as expected. Paige has met one of her goals so far. She is able to hold a toy in her hand and bang it on a surface. Bree has met one of her goals as well. She is passing a toy from one hand to another. Both girls are rolling over from back to stomach - although Bree is doing it more often. They are also sitting with less help and tracking objects more frequently. They are more vocal as well. They've started to make consonant sound along with vowel sounds (ex: de de de, ge ge ge). Development continues to go as expected.

We've started to prepare for their birthday party. Invitation will be sent out soon. We're also celebrating because they will be cleared to go out in public. They been under quarantine due to their suppressed immune system caused by the ACTH that ended two months ago. So we'll finally be able to have friends and family come to see the girls. There are many people who haven't seen them in almost 4 months. So we're excited to have everyone over!

The First Tooth

2007-09-28T16:52:00.000-07:00

Tonight, while playing with the girls, grandma found what may have been the source of Bree's irritability. Bree cut her first tooth - her bottom left one!!! We couldn't believe it; how exciting to have something like a tooth to bring such happiness to our lives. I know Paige is a few days away from her first tooth because she's been a little cranky the past day. The girls really are doing quite well - rolling over all the time, sitting up (with help), playing with toys as well as tracking them. Their development is really coming along. Bree's doing well so far on the Keppra even though it's only been a few days. We're very hopeful that this will be the medication that will get her seizures under control. We shouild be hearing from the Geneticist next week about the test done for Rett Syndrome. Fingers crossed it's negative; although they won't be out of the woods yet. The doctor will test them for one other mutation and if that one comes back negative they will continue further testing at Shands Hospital in Gainsville. So even more of the "wait and see" game.

Bree's New Medication

2007-09-26T08:54:00.000-07:00

Our neurologist called yesterday and has decided to put Bree on Keppra. It's a very common drug used to control seizures with no side effects. She'll start slowly on her dosage and in 9 days be at a therapeutic level. So far her seizures have been very mild, with only 3-4 noticable seizures a day. However, her irritability is through the roof. She will have frequent screaming fits most likely cause by her seizures. It's hard to tell if she's in pain from a headache or blurred vision. The Keppra should only take a couple of days to see results and I plan on speaking with their neurologist to see if we can try B6 vitamins to help with the irritability. Paige is doing great! She's her happy-go-luck self and showing no signs of seizures. So all we need to do is wait and see if the Keppra works.

Here we go again!

2007-09-24T09:48:00.000-07:00

About a week and a half ago Bree was getting big red bumps on her leg. A few days later the cluster moved to her arms. Her pediatrician said they looked like mosquito bites so I left it at that. Thursday she developed a cluster on her cheek that looked so painful. I decided to call the Neurologist and he told me to stop the medication and to give her Benadryl over the weekend. He asked that I call on Monday to discuss and alternate medication. Well on Saturday Bree began to have frequent eye rolling and gazing. She would drop her head and seem unresponsive. These types of seizures are common with the activity found in the occipital lobe. On Sunday I kept a closer eye and noticed it happened quite a few times again. I'm not sure if it was the haulting of medication that brought on the seizures or the allergic reaction. I called the doctor this morning and I'm waiting for his call back. I hope the next medication we try will be more affective. I never would have thought the seizure would come back so quickly. We're also keeping our eye on Paige; her seizures started shortly after Bree's before.

Another busy week!

2007-09-20T05:59:00.000-07:00

Tuesday was a busy day. After dropping Connor off at school I took the girls to Orlando, an hour and 45 minute drive, to have their helmets adjusted. Their Orthotist, Steve, said he was very pleased with the improvement they're already showing. We go back next week. After that I picked Connor up from school and went straight to Daytona for OT/PT. While there Paige started to scoot on her belly and Bree sat for a few seconds with little support. Their OT said that they are really benefitting from therapy and improving by leaps and bounds. I continue to do exercises with them at home the other 5 days they don't have therapy.

Wednesday we took the girls to the Conklin Center for the Blind to meet with Stacy, a vision specialist with Early Intervention. She brought us into two rooms filled with toys for every age. She had us lay the girls in a large ball pit to help them make a connection with the different muscles in the body - they loved it. Then she had the girls sit in this chair and showed them different colored, textured, and moving toys. She told us that most of the Cortical babies she sees don't respond as well as the girls had. She told us it would be work on our part but that she's hopeful they will have sight. She sent us home with a special chair and table and a box filled with toys. These toys will help with senory intergration and gross motor skills. She will continue to meet with the girls once a week. Stacy told us we may be able to get a second chair from First Step - where the girls go for OT/PT. Tomorrow they have an appt. so I will ask.

Tonight we're going to Connor's Open House at school. We're so proud of him and he's been a great big brother. I'm looking forward to seeing what he's been up to at school.

Visit their Photo album for new pictures!!!

Saying good bye to Website

2007-09-14T07:12:00.000-07:00

I've been very busy making the girl's blog and photo gallery the best it can be. I've learned so much in the process and have decided to make this website their home page. This website offers many things that I can not do on their first website (not to mention this is free)! So as soon as I have made all my adjustments I will be closing http://www.paigeandbree.com/. You can now use www.paigeandbree.blogspot.com/ as their new website. There are many links on this page that I hope you'll visit. Please feel free to leave comments to let me know what you like or what you would like to see. Paige and Bree thank you!

They get their helmets!

2007-09-13T06:35:00.000-07:00

Tuesday we went to Orlando to get Paige and Bree's cranial molding helmets. The helmets are to treat their plagiocephaly (flattening of the back of the head). They will have to wear the helmets 23 hours a day for the next 3 months. We go once a week for adjustments as their head grows. So far they don't seem bothered by them although Bree's seems a little low on the front; she can barely see past it. I will be adding new pictures to their photo album for everyone to see.
In other news: OT/PT is going well! They are continuing to go twice a week and we will find out tomorrow if they were approved for massage therapy. Then they will be going three times a week. They were also evaluated by a vision specialist from the Conklin Center for the Blind. We go Wednesday to begin vision services. The nice thing about it is that they will come to the house; we won't need to go to Daytona four days a week.
Overall they are doing great! We are very pleased with their progress and look forward to what they will do next.

ACTH Price Increase

2007-09-01T17:30:00.000-07:00

An important issue has come to my attention that I would like to address. Questcor, the makers of HP Acthar (the medication Paige and Bree were on for 8 weeks to treat their seizures) has made a press release announcing the new price of their product. Prior to this, the girls medication was $2000.00 per vial - we needed 10 vials to cover their treatment. After insurance paid their portion we were left with a $5000.00 bill. Questcor has announced they will be charging $23,269.00 a vial. If, and that's a big if, our insurance would cover such an expense we would be in debt $40,000.00. Most likely our insurance would want nothing to do with such an expensive medicine and we would be left with a $240,000.00 bill. Acthar is an Orphan drug, meaning no one else has the right to produce the same medication. There are other treatments availible for IS but none of them have been approved by the FDA, which leaves us to make a choice to have a drug sent from Canada. Questcor claims it has assisstance programs but how can they expect people to pay off tens if not hundreds of thousands of dollars. It's unfair to everyone involved but most importantly to our children. My support group through Yahoo! is doing everything we can to spread the word on this topic. I have contacted WESH 2 news and the Daytona News Journal in hopes that they will cover this story and help raise awarness for Infantile Spasms and Questcor blantant attempts at profittering. I have also sent an email to our State Senator, Mr. Mel Martinez. I'm asking all of you to show your support for Paige and Bree and all their friends with Infantile Spasms and tell him about the effect this increase will have on everyone.

Here is the link to Senator Martinez's website. Just click on the link below and it will take you right to his contact form. Enter all your info and share your story. Thank you to everyone for your support.

http://martinez.senate.gov/public/index.cfm?FuseAction=ContactInformation.Con...

Here is the link to Questcor and their press release. Click on "Latest News"

http://www.questcor.com/

Our visit to the Neurologist

2007-08-31T19:37:00.000-07:00

Today was our rescheduled visit with Dr. Desai, the girls neurologist. We've been waiting for a week to find out the results to the girls last EEG. He examined the girls and told us he was very pleased to see their improvement after the ACTH treatment. The girls have been laughing and cooing, they're starting to sit with help and are eating solid foods on a regular basis. The good news is the hypsarrythmias (brain damaging seizure activity) are no longer occuring. The bad news is that both Paige and Bree are showing seizure activity in the right occipital lobe (the part of the brain that controls vision). Paige's spikes were mild enough to hold off on medication. It is unknown when she will have her first epileptic seizure-it could be days, weeks, or months. So for now we will just watch her for sign of a seizure and go from there. Bree is a different story. Her spikes are more frequent and stronger. The doctor doesn't feel comfortable waiting on her so he prescribed Trileptal-an anti-seizure medication she will be on for the rest of her life. We're hoping she will have success with this first drug. For now we'll wait and see-we're scheduled to see the doctor again in two months.

The girls busy schedule !

2007-08-28T15:10:00.000-07:00

Last week was a busy week for both the girls and mommy. Tuesday we visited with the physical therapist from First Steps. She told us that she would be getting with OT and will set up a schedule as soon as possible. We're still waiting to hear from them. Wednesday they had their fourth EEG to check for any spikes in their brain waves. Paige had to be sedated but Bree was able to sleep, so she did not receive sedation. Yesterday we were scheduled to see their neuro for the results but he called in the morning to tell us the system was down and he was unable to read the tests. So we rescheduled for Friday morning. Friday the girls went to see the cardiologist for an EKG and ECHO. Everything check out okay and he said there's no reason to continue monitoring them. Their arrythmias and thickening of heart muscle were most likely due to their meds and since they have discontinued them they've showed improvement. One health issue we can finally move past.
Yesterday we saw the Orthotist about their cranial molding helmets. They had a mold taken of their heads and the bands should be ready in about 2 weeks. We had to come up with $1000.00 down payment with four "friendly" installments of $500.00. They gave us the "Twin Discount" and knocked off $500.00 a girls; so that was really generous. We're currently trying to get our insurance to cover some of the costs. They'll wear them for three months - going from a few hours a day to wearing them 23 hours a day.
I finally made the phone call to the insurance company to get pre-approval on a genetic test that the girls Geneticist wants to run. The test will look at theCDKL5 gene of the X chromosome to check for any mutation. Mutations on this gene are diagnosed with a neurodevelopmental disease named Rett Syndrome(RTT). RTT is a devastating disease associated with mental retardation and severe neurological symptoms (infantile spasms, severe global developmental delay, and profound intellectual impairment) found mostly in girls. The test is covered and the girls will be tested next Wednesday. The blood will be sent to Baylor College of Medicine in Houston, TX. It will take about 4 weeks for the result.
I pray everyday that this test will come back negative. To think we could have two little girls who will be completely dependant on us for the rest of their lives is to hard to accept right now. Everyday is a challenge to stay optimistic when I look at them as they're laughing and cooing and wiggling and know it could all go away. For now I will be realistic to allow little room for disappointment. I have to stop now - there's good days and bad!

Paige Comes Home!

2007-08-08T18:07:00.000-07:00

Sorry it's been so long since my last entry. We're still working on a new computer so I'm using my mom's until then. Paige came home on Friday evening. She was discharged from ICU with some concern with her blood pressure. She was given Lasix to get rid of some of the fluid retention which helped temporarily. If the bp continues to be high they will start her on Clomazapene. Her ACTH was weaned sooner as a result and will receive her last injection today. Bree still has a week left. They are doing very well and have become more responsive and vocal. Both are cooing and laughing and will turn their head towards voices. Still no eye contact or tracking but we're excited with the little improvement we've seen. Bree has been a little hoarse and her cries are barely heard sometimes. She had a wet chest x-ray on Tuesday that came back negative so her pediatrician would like her to see her pulmonologist for an endoscopy to check her vocal chords and esophogus for infection. If it's not one thing it's another. Thursday we meet with Early Intervention. The meeting will consist of the Physical Therapist, Occupational Therapist, Speech Therapist, and Developmental Phsycologist. The girls are at a two month old level as far as milestones and those therapist will work with them to get caught up with things they have yet to accomplish. Right now we're hopeful that everything will be okay. We still have many more doctors to see and each week brings something new. I promise to keep everyone as up-to-date as possible. Thank you for all your positive comments and support. It means so much to all of us!

Paige's Surgery

2007-08-01T08:14:00.000-07:00

Sorry I haven't written in awhile. My computer has died on me so I have to use the computer at the hospital where my daughter is staying. Yesterday Paige had surgery to remove a part of her skull near her metopic suture. The suture fused prematurely and was preventing her brain from growing. The surgery went well; she needed a blood transfusion (with blood that I was able to donate) and was but on oxygen. The doctors have kept her very comfortable through the help of morphine. She has a 1 1/2 inch incision on the top of her head that was stitched with dissolvable stitches. Her face is a little swollen considering she was so puffy already from the ACTH. She will be in ICU for another day and then move to Special Care for a few days. She took a couple of ounce of formula the evening and kept it down. Her potassium level has been low so they've given her more through her IV. She has an arterial line to monitor her blood pressure with has been a little high. Overall she's doing as expected and we're hoping to have her home soon. She misses her sister and big brother. I will try to keep everyone up to date.

Improved EEG

2007-07-28T11:41:00.000-07:00

We saw the neurologist today. There was good news - their EEG improved enough to begin weening the meds. He said starting Wednesday they could go down to 10units twice a day. He wants a repeat EEG with sedation after the girls come off their meds completely. The Opthomologist told us that their eyes were healthy and that their vision problems were neurological. They don't focus or track things infront of them and their eyes will sometime roll to the back of their head. The neuro. called it Cortical Visual Impairment (CVI). He said with time their vision could improve but until then we will not know how well they'll see; if at all. The girls have also become very spastic (were the muscles are very stiff and their bodies become rigid and flexed in a backward arch). We're hoping it goes away with the discontinue of the meds. If not Cerebral Palsy may be our next issue. We won't think about that now. Wednesday we see the neurosurgeon to discuss Paige's surgery and the bands thar the girls will have to wear to mold their heads due to the plagiocephaly (flattening of the back of the skull common in premmie -NICU- babies). Paige and Bree have become so swollen froms the meds but their chubby cheeks are so cute. The picture is Paige - all cheeks!

Seizure Free!!!

2007-07-15T08:26:00.000-07:00

The girls have been seizure free for a week and a half now. Their irritability is really showing. Their fussy most of the day and don't sleep well at night. Their eating every 2 1/2 to 3 hours now. Our Home Health nurse coming twice a week now and I take the girls once a week to Bert Fish Hosptial for blood work. Most of my free time has been spent calling all their doctors to make follow-up appointments and repeat testing. I've also started the process of getting the girls Early Intervention with Early Steps. They will have Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (ST), and a developmental phychologist. We meet with all of them on August 9. The girls are having their third EEG on the 18 at Arnold Palmer. We see Dr. Desai (neurologist) on the 23 and Dr. Trumble (neurosurgeon) on the 25. All of their doctors are in Orlando, 1 1/2 hours away, so most of our time is spent driving back and forth. We're hoping the EEG improves enough so they can begin to ween off the meds.

Happy 4th of July!

2007-07-04T20:18:00.000-07:00

The girls have been in the hospital for 8 days now. On the 27th the girls started their ACTH injections along with Prevacid for their acid reflux and Nystatin for the thrush they developed in their mouth. On the 28th they both were sedated for their MRI. They were pretty groggy for the rest of the day but their appetite really increased. Later that night Dr. Desai ( neurologist) told us the results of the MRI. The girls have what is called Periventricular Leukomalaysia (deterioration or death of the white matter of the brain. They also have thinning of Corpus Callosum ( the tissue that connects both lobes of the brain). Neither one were significant enough for immediate concern so they will have a repeat MRI in a few months to see if there's any change. On the 29th their ACTH was upped to 20units twice a day. Over the weekend their blood pressure was closely monitor because it was running high due to the meds. On Monday the 2nd they received a second EEG which showed improvement during their awake period with some seizure activity during sleep. Yesterday the found murmurs in both the girls so the doctors did an ECHO and EKG. They found that Paige Left Ventrical Hypertrophy (thickening of the wall of her left ventrical of the heart. Bree had an Arrythmia so both will have a follow-up ECHO and EKG in a month. The girls haven't had a seizure in a few days now; hopefully a sign of things to come.

Diagnoses of Infantile Spasms

2007-06-26T20:36:00.000-07:00

This is my first entry and a very important one. Our girls are at Arnold Palmer in Orlando being treated for Infantile Spasms. They had a busy day of testing: EEGs, CT scans, and more blood test than you can imagine. The girls neurologist, Dr. Prashant Desai, was the doctor to formally diagnose them. He explained to us what to expect and gave us three options on how to treat the seizures. We decided to go with a medicine called ACTH. It's a naturally occuring hormone that is usually used as a first line of defense. There are several side effects such as swelling, high blood pressure, immuno-suppression, irritability, and sleeplessness. The girls will begin treatment tomorrow. He also found some abnormalities in their skull and told us the neurosurgeon would be by to see us tomorrow.