Saturday, December 29, 2007

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.

Monday, December 3, 2007

More Good News to Share!!!

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.

Saturday, November 24, 2007

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.

Tuesday, November 6, 2007

Second Series of Tests

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!!!

Friday, November 2, 2007

Happy Halloween

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.



Monday, October 29, 2007

Paige and Bree's First Birthday

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!

Friday, October 26, 2007

Getting ready for the Party!

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.

Tuesday, October 16, 2007

Paige Finally Gets a Tooth

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.

Monday, October 8, 2007

Bree Gives Paige A Run For Her Money

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.

Tuesday, October 2, 2007

Good News Comes Our Way!!!

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!

Friday, September 28, 2007

The First Tooth

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.

Wednesday, September 26, 2007

Bree's New Medication

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.

Monday, September 24, 2007

Here we go again!

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.

Thursday, September 20, 2007

Another busy week!

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!!!

Friday, September 14, 2007

Saying good bye to Website

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!

Thursday, September 13, 2007

They get their helmets!

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.

Saturday, September 1, 2007

ACTH Price Increase

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/

Friday, August 31, 2007

Our visit to the Neurologist

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.

Tuesday, August 28, 2007

The girls busy schedule !

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!

Wednesday, August 8, 2007

Paige Comes Home!

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!

Wednesday, August 1, 2007

Paige's Surgery

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.

Saturday, July 28, 2007

Improved EEG


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!

Sunday, July 15, 2007

Seizure Free!!!

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.

Wednesday, July 4, 2007

Happy 4th of July!

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.

Tuesday, June 26, 2007

Diagnoses of Infantile Spasms

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.