Hi!  I was hoping to update last week, but our computer has been down, and Kevin was working like crazy to figure out what was wrong. 

Some of you may be keeping track of Abygail and Madysen Fitterer, who were successfully separated last Wednesday.  Madysen had to go in for a second surgery on Thursday, but they seem to be doing a bit better now.  The recovery process is difficult, especially the first few days.  Their parents have been through so much, and they could use as much support as possible right now.  We have a link to their website on our links page, if you would like to leave them a note of encouragement.

We were quite busy with physical therapy and basketball games last week.  The girls love to go to Kevin Jr.'s games.  They cheer for him when he gets in the game, and they love to be around all of the people and excitement.  However, their favorite part of being there is watching the cheerleaders.  At the game on Thursday, every time Erin even saw a cheerleader somewhere in the gym, she would tap my arm and point.  It was so adorable!  Then she would wheel down to where they were sitting and look up at them.  When one of the cheerleaders would smile or wave, she would wheel back to us as quickly as she could.  We kept telling her to wave, and she almost did one time -- she raised her arm up, but then she scooted back to us before following through.  Kevin and I just laughed.  Jade, our social butterfly, would go with Erin to see the cheerleaders, and she would actually smile and wave.  She and Taylor were doing some of the cheers, and they all said they want to be cheerleaders when they get bigger. 

Erin has been doing something amazing over the last two weeks.  She is actually able to straighten her legs a little when we ask her to.  It's extremely difficult for her, and it takes a great deal of effort, but she is able to do it.  What makes it so difficult for her is that she has to fight against gravity.  Her muscles are so weak that, up until this point, she may have had the ability to use some of her muscles in her legs, but she didn't have the strength to do it.  We've been told numerous times that if we had a pool to do therapy in, it would help her tremendously.  Kevin and I want to do absolutely everything possible to help her to walk someday, so we're going to work hard to find a pool to take her to. 

Even at 2 1/2 years old, Erin is painfully aware of the fact that she can't walk and run around like her sisters.  We were given tickets to go to the Washington Wizards game on Friday night.  Everyone was very excited, especially the girls, because they love to watch the mascot G Wiz.  The only problem was that we couldn't take Erin's wheelchair with us.  Before we left, she kept asking Kevin and I about it, and we could tell that she was upset and worried.  When Kevin was talking to her, she asked him again if we could take her wheelchair.  When he told her no, she became very sad and said, "but Daddy, my legs don't work, and I can't walk like Jade and Taylor."  It brings tears to my eyes each time I think about it.  A two year old shouldn't have to worry about the issues she deals with on a daily basis.  A two year old shouldn't have to figure out how she is going to get from point A to point B, with or without her wheelchair.  She shouldn't have to know about electrical stimulation or the many medical terms that come out of her mouth each and every day.  It breaks our hearts that she can't just get up and play with her sisters.  With that said, we are thankful each and every day that she is alive.  We are thankful that she will hopefully have the opportunity to walk one day with advances in research.  She and Jade are absolute miracles (along with our other children), and we couldn't ask for anything more. 

We want to thank Ms. Jackie and Children's Hospital for the tickets to the game on Friday, and we especially want to thank you for the special treatment of Kevin Jr.  They made it possible for Kevin Jr. to go out on the court when the players were being announced to be a part of the ball exchange.  He was given a basketball by one of the Wizards starters, which was autographed by the team.  It was a special moment for him, and it was wonderful to see the smile on his face!  Thank you again!

The other story I wanted to tell is about Taylor.  All of the girls loved having the Christmas decorations up.  In fact, when we were putting them up before Christmas, Jade ran around the house screaming, "Christmas is coming, Christmas is coming!" (just like, "the British are coming, the British are coming").  Last week we decided it was time to take everything down.  When Kevin told Taylor earlier in the week that we were planning on doing it, she was extremely sad.  We decided to include her in the process, which actually seemed to help.  As we were taking everything off the tree, Taylor said goodbye to each and every ornament.  She was telling us stories about them, especially the ones which she has received as gifts (her first Christmas).  Kevin and I thought it was very cute.  Jade and Erin missed out on the process because they were napping, so imagine their sadness upon waking and seeing that everything was gone.  They still keep asking where our Christmas tree is.  We look forward to their excitement again this year when it is finally time to decorate our house.

We hope you all have a wonderful week!

We are asking that you all keep Abygail and Madysen Fitterer and their entire family in your thoughts and prayers today.  These beautiful twin girls went in for separation surgery this morning.  It will be a long and difficult day for their parents, brother, and the entire extended family.  You can check for updates on the surgery at:  http://www.mayoclinic.org/fitterer-twins/index.html

 

We hope everyone had a wonderful and magical Christmas!  Ours was truly blessed as we watched our children enjoy that special day.  We again want to thank everyone who played a part in making that possible!

Well, unfortunately our worries have come to fruition.  Erin has another urinary tract infection.  She has only been cycled off the antibiotic for 3 weeks.  This doesn't bode well for her as far as being off the antibiotic in the future.  We hope Taylor has better luck than Erin.  Kevin took Erin in to the doctor yesterday for some tests, and not only did she have a UTI, but she lost her favorite stuffed animal in the world.  It was a purple bunny that Kevin had given her on the day she was born.  They were both devastated.  Kevin searched the internet for hours trying to find another bunny like it, but to no avail.  However, we received a call early this morning from her pediatrician saying he had it in his office.  What a relief!  Erin had cried herself to sleep last night, and she woke up this morning asking for "Bunny".   It broke my heart!  Daddy was ever the hero when he came home this afternoon with Erin's bunny.  Thank you Kevin! 

Happy Birthday to our nephew Derek!  We are so proud of the wonderful person you are!

We want to wish everyone a very happy New Year!  Please be safe!

On Friday, we returned from another two week stay in Baltimore.  This time we stayed at the Ronald McDonald House while Erin participated in intense physical and occupational therapy at the International Center for Spinal Cord Injury at Kennedy Krieger Institute.  We had another amazing experience as Erin worked harder than she ever has before.  The therapists were thrilled at the improvements they saw in her.  They have a new technique in helping her to walk on the treadmill, and we are working on crawling with her.  While Erin cannot do any of these things by herself, our hope is that someday she will.  She has gained more strength in her trunk, and she is able to push herself up into a crawling position.  She can't stay there for very long; however, just three months ago she couldn't do it at all.  I'll post some pictures of Erin in therapy so you can see what I'm talking about. 

We met some wonderful families at the Ronald McDonald House.  All of the children are true heroes.  We are thankful for the opportunity to meet and spend time with these special people.

As I write this, our girls are all sleeping (or pretending to sleep), while they wait for Santa to arrive.  They were bouncing off the walls today with excitement.  We made sugar cookies and decorated them, so we could leave them for Santa (and an apple for the reindeer).  They were just so adorable, their faces all lit up.  As Taylor was getting ready for bed, she went to her window, raised the blinds and whispered, "Merry Christmas Santa!  Merry Christmas Santa!"  The fire department came through our neighborhood with Santa riding on the back of the ladder truck.  The girls were beyond excited!  We told them they had to go to sleep quickly so he could come to our house.  Thanks firefighters!!  They have been watching the movie "Polar Express", and Jade loves the part where the elves are watching all of the children on video screens all over the world.  She always screams, "he sees you when you're sleeping!"  It's too cute!

I do have to take the time to thank some very special people.  First and foremost, we want to thank our families for helping us through this journey, and for being there when we need you the most.  We want to thank our angel Ms. Jackie, who has helped to give our children (and us) a wonderful Christmas again (as well as many other special moments throughout the year).  We also want to thank everyone in Volunteer Services for the same reason.  Thank you to everyone who donates their time, services and gifts to places like Children's Hospitals and Ronald McDonald Houses everywhere.  Many families like ours appreciate these blessing more than you could imagine. 

In this season of miracles, we know that we have been blessed with our own.  We hope you all have a very Merry Christmas or very happy holidays (depending on your beliefs).  Please be safe!

We've been so busy lately that I haven't had a chance to update our site.  We hope everyone is doing well and having a wonderful holiday season.  Oh, you'll have to check out our Photos: Autumn 2006 page.  We found some dress-up clothes, and the girls all dressed up as dancing Princesses.  They were absolutely adorable!!!  You will see that Taylor had a great deal of fun posing for the camera! 

Erin continues to have physical therapy four days a week, and Taylor has it just one day each week.  We spend A LOT of time on the road (about 2 hours each day), but it is well worth it.  We're actually working on trying to get some equipment at our house so we can do a great deal of Erin's therapy here.  We're never able to fit in as much therapy as we want during each session, and we feel she's still missing out on so much.  Hopefully it will work out.  We love our therapists, but there is only so much they can do in one hour, so we're hoping to supplement by working at home.

Jade is almost completely potty trained!  Yeah!!!  Way to go Jade!!!  We've been changing diapers for over 5 years now, so this will make it a bit easier.  She still wears a diaper at night and wakes up dry most mornings, but I'm not confident enough yet to try to go all night without one.  Erin will be in diapers indefinitely, or until we can figure out something better, so we're not totally diaper-free, but that's o.k.  Erin is really struggling with the fact that Jade doesn't have to wear a diaper anymore and she does.  She always wants to use the potty too, so we put her on it to help her psychologically.  I wish she could miraculously recover her bladder and bowel function, but that's not quite on our horizon yet. 

We took Taylor and Erin to see the nephrologist (kidney specialist) today just for a check-up.  He thinks they are doing very well.  Because they both have bladder issues and have had a number of urinary tract infections between them, their kidneys could become damaged.  He keeps a close eye on them.  Together we made the decision to cycle them off their antibiotics (which have been preventing more uti's), in order to ensure that the bacteria don't become resistant to the medication.  We're hoping that both girls do well off the antibiotics and don't develop any more infections.  We will have to keep a very close eye on both of them for any signs of one. 

Taylor had her 5 year well-child check up last week.  She is now almost 3' 7" tall and weighs 42 lbs.  Her pediatrician was very happy with how well she is doing, but he does want her seen by a cardiologist for her VSD (heart murmur).  They often go away on their own, but Taylor's has not closed yet, which means it probably never will.  It shouldn't be anything to be concerned about, but they do want to keep an eye on it.

Today Erin weighed 21 lbs 8 oz, and she is 32 1/2 inches long.  She's still a peanut, but she'll catch up someday.  Jade is probably a few inches taller and a few pounds heavier.  She hasn't been weighed or measured for awhile, because she's been so healthy.  She actually wants to be checked for everything just like her sisters -- she doesn't want to be left out.  Today when her sisters had their blood drawn, she wanted to go too, so after Taylor and Erin were done, the nurse had me bring Jade back there.  She was given stickers, just like Erin and Taylor, and that was enough to satisfy her.  She's too funny!

Erin is becoming more and more independent lately, which is good, but it also has its downside.  Our house is not at all accessible for her, so there is only a small area where she can wheel herself.  She can't get in and out of the house by herself, because each entrance has a set of steps, and we have many stairs inside that are just not a possibility for her.  It won't be too much longer and she will not want us to carry her places either, so we're going to have to figure something out.  As her parents, there is just such a helpless feeling for us, because right now there is nothing we can do to change the situation.  We'll just have to see what the future holds.  However, no matter what the situation, we never forget just how blessed we are to have her, and all of our children, in our lives.  We are so very thankful!

We hope that all of you have a wonderfully blessed holiday season! 

Happy Thanksgiving everyone!!  We hope you are all having a wonderful and joyous day.   Our family is so blessed and we have an abundance to be thankful for.  We thank the Lord each and every day for our beautiful children and for each other.  We spent the day at home with the girls.  We really missed Kevin Jr., but we'll get to see him tomorrow.  I cooked a huge meal, which we'll be eating for the next week!!  When we asked the girls what they are thankful for, here is what they said:  Taylor is thankful for Dora the dolphin, Erin is thankful for her bunny, and Jade is thankful for her bear (all of which are stuffed animals).  I'm glad they appreciate the important things!   

Kevin Jr. has his first basketball game this weekend.  We are so excited to see him play.  Good luck K.J.

We all want to wish Jean Jean (Kevin's mother) a very HAPPY BIRTHDAY!  We hope you have a fantastic day!

Please have a safe and relaxing weekend!

It is with extreme pride and excitement that we announce that Kevin Jr. has earned a spot on the freshman basketball team!!  He loves playing, and we look forward to going to all of his games.  He has persevered over the past few years when he didn't get to play, and he will now be able to show off his abilities.  Way to go Kevin!!!!!!! 

The weather these last few days has been phenomenal!  We have spent a great deal of time outside, playing in the sandbox, swinging, jumping in the leaves, and going to a new playground near our house.  The girls have enjoyed every minute of it!  I have put a few pictures up of our adventures, but I took about one hundred more!  I'm not sure how many more days we'll have like these, so we're enjoying them while we can.  The girls and I are excited for snow, though, so I hope we get some this winter.

Oh, I also uploaded a picture of Erin going down the stairs at physical therapy.  That's the only place she can do it, because the stairs are short and very easy for her to navigate. 

Enjoy!

Happy Birthday Marines!!!  Each year this is a very special day for the Marine Corps, as Marines everywhere celebrate the birth of the Corps.  This year marks a very special event -- the opening of the Marine Corps Museum, which is located near Quantico, VA.  Taylor has been keeping a close eye on construction, and she is very excited to make her first visit. 

I think we are finally on the upswing with these colds.  Jade seems to be completely better and Taylor is slowly making her way back to good health.  Thankfully, Erin is still showing no signs of getting sick, so we're hoping we dodged another "bullet".  We still haven't been able to get a flu shot for her (or anyone else in our family for that matter), which makes us nervous.  Erin is much more susceptible to any lung infections, and she won't have the benefit of receiving the RSV shots this year.  We can't get the flu mist, because it has live bacteria, which could cause Erin to get sick rather quickly.  Hopefully we'll be able to get these shots soon.

I just have a few little stories to share.  Two nights ago, Kevin was asking the girls what they wanted to be when they grew up.  Erin's first answer was Scooby Doo, which was pretty cute.  He then asked her what kind of job she wanted to have.  Erin immediately answered that she wanted to be a doctor, and Kevin asked her why.  Erin then replied, "So I can make everyone feel better!"   Keep in mind that Erin is only 2 1/2 years old.  It melted my heart.  Jade has decided she wants to be a princess  and Taylor wants to be an animal rescuer or a whale and dolphin trainer.  Well, if Jade can find a prince to marry, I would be more than happy to move into a castle somewhere!    Taylor loves to watch Animal Planet, and she especially gets excited about Blue Planet.  I hope her love of animals continues throughout her life.  The owners of our therapy center just got a new puppy, and the girls were absolutely thrilled to see him.  They would have spent the entire session just sitting in front of him yesterday if I would have allowed it. 

The other story is about Erin.  Kevin and I have noticed Erin moving her legs more lately.  Now, that doesn't mean it's voluntary movement, and it definitely doesn't mean that she'll be walking anytime soon.  However, it is exciting to us, because she is moving them more than we've ever seen before, and even if it is reflex movement, she can use that to help her.  We're never sure if she is even aware of the movement, because we still don't know if she has any feeling from mid-chest down.  Last night during dinner, Kevin was trying to get Erin to eat (a daily struggle with at least one of our girls), so he was leaning over the tray of her highchair talking to her.  He felt something pushing against his leg, and he realized that it was Erin's foot.  We will sometimes see her straightening her legs out and moving her feet while she is sitting in her highchair, but she usually doesn't have any kind of reaction to it.  Last night, after Kevin felt her foot pushing against his leg, Erin got this huge grin on her face and she started giggling.  Kevin asked her what she was laughing at, and Erin said, "I moved my leg".  I'm not sure if you can imagine the shock and elation at hearing our little girl say that.  We're still not sure how she knew her leg was moving, but we do know that she wasn't able to see it, because her tray is in the way.  We definitely have more questions than answers, but we are thrilled to see the changes in her level of movement. 

We want to congratulate Angie and Ryan, who were able to bring McHale home yesterday.  McHale and his brother Mateo were born conjoined at the lower back and spine and were separated in early September.  The boys are six months old today (Happy Birthday!), and this will be the first time that McHale will be out of the hospital since he's been born.  Hopefully Mateo will be ready to go home within the next two weeks.  You can read more about their journey on their website:  Mateo and McHale Shaw    Congratulations again!

We hope everyone has a safe and enjoyable weekend.

Here is the link to the piece about Jade and Erin that aired on our local ABC news last night.  Thank you again Kathy and ABC.

WJLA -- Monday, November 6, 2006

Jade's cold seems to be getting better, and Taylor is getting worse.  Erin is still showing no signs or symptoms of a cold, although she says she is sick because her sisters are getting a little extra attention (like she doesn't get enough herself!).  Hopefully Kevin Jr. doesn't get it either.  It's so tough to be sick when you are in school.  Other than that, we're doing really well. 

We had a relaxing weekend, although Jade and Taylor have come down with colds.  Taylor seems to be worse, and she is very good at playing it up!  She really should be an actress, because she can be so melodramatic!  This morning she was telling me that she felt worse, but as soon as I gave her some medicine she said she felt MUCH better (for about 2 minutes)!    I told her it must be magic medicine.  I can tell she is pretty miserable, though, just by listening to her sniffling and trying to breath.  Hopefully they will both get over this quickly, and we are praying that Erin doesn't get the cold.  She has had two colds, and both times it turned into pneumonia.  She can't cough effectively, because of her spinal cord injury, so any time she is sick it is extremely worrisome.  Once again, let's just hope she doesn't get sick.

We have finally worked out a schedule for physical therapy 4 days per week.  It will be a lot of driving, but it's absolutely worth it.  Taylor will have therapy again as well, once a week.  We love the therapy center we go to, and we are very thankful to have found it.  The owners are working on opening a new center somewhere out near us, which would be absolutely wonderful!  It would cut out 2 hours of driving each day.  Keep your fingers crossed!

Our local ABC station (WJLA) is airing a piece about our family tonight on the 5 o'clock news (about 5:44 p.m.).  It will be an update about the girls and show Erin's therapy at the Kennedy Krieger Institute in Baltimore.  I will post a link here later for those of you who would like to see it.  We would like to thank Kathy Fowler and ABC for being there since the beginning, and for caring about our family.  She always does an outstanding job with her coverage on our girls.

We hope you have a great week!

 

First and foremost, we want to wish our beautiful little girl, Taylor Joy, a very happy birthday!  She turned 5 years old the other day, and we are just so proud of the intelligent, inquisitive, humorous, and active little girl that she is.  She had a birthday party on Saturday, and she was extremely excited to have some very special people attend.  We made 2 birthday cakes, because she loves to put the sprinkles on the frosting!  We would like to thank all of the wonderful people who remembered our little girl's special day! 

All three girls had a fabulous time trick-or-treating last night.  The weather was gorgeous -- it was in the upper 60's while we were out.  They love to dress up in costumes, but they also enjoyed getting a lot of candy.  Amazingly, even Erin said "Trick or Treat"  quite loudly, and she is our extremely shy child.  Jade saw a little boy dressed up in a skeleton costume, and she was terrified (luckily it was near the end).  We spent the rest of the evening and most of today trying to convince her that it was just a costume.  She repeats it often, as if she is trying to convince herself that it is true.  We went over to Kevin's sister's house to show them the costumes, and I think the girls got most of their candy there.  Erin sat by the candy bowl and busied herself by placing candy in her own bucket.  It was too cute! 

Just an update on Erin's progress.  We are seeing some activation in her hip flexors.  Again, it may be reflex, but we can use that reflex for crawling and perhaps walking someday.  We'll just have to see.  We are still a long way from any of those, but the therapist is very excited about what she is seeing from Erin.  She has gained 2 lbs in the last few months, most of which is muscle mass.  I can't say it enough:  we are so thankful for everyone at Kennedy Krieger Institute and for the road they have put us on.

Happy Halloween!!!  The girls are so excited to go trick-or-treating tonight!  I'll write a longer update later to tell you about Taylor's 5th birthday party as well as our fun experiences from today.  They are all going to wear their costumes to Erin's therapy (which should be fun getting them into their carseats with butterfly wings for Erin and Jade and a Scooby tail for Taylor!  I'll also post pictures later tonight.

We hope you have an exciting and safe Halloween!

Our family continues to stay busy after returning from Baltimore.  Last week we spent 2 days at Children's Hospital in D.C. for appointments.  It gets to be quite long waiting for the doctors, but our girls did extremely well.  We played "Simon Says" for what seemed like hours!    The girls have not figured out that they should throw in a direction without saying "Simon Says", so we end up doing everything they tell us.  It's actually quite funny.  Erin and Taylor were both seen by 4 different doctors in one day at the Spina Bifida clinic (neither one has Spina Bifida.  That's the name of the clinic where all patients who have issues with their spinal cords are seen).  All of the doctors were extremely happy with how both girls are doing right now.  That means our hard work and determination are paying off!  Of course, Jade didn't want to be left out, so the doctors (who are extremely patient) examined her as well.  She always volunteered to go first! 

Kevin Jr. is doing very well in school this year.  The move to high school can be difficult for teens, but he has done it quite easily.  We are so proud of him for his hard work as well as for who he is as a person. 

We would like to thank Kevin's sister Kim and her family from the bottom of our hearts.  This past weekend they came over to stay with our children while Kevin and I took some time to be alone with each other.  We have not been able to do that since we've been married, so we will never be able to express how thankful we are for the opportunity.  We were actually able to relax and watch a movie together! 

Physical therapy has started up again this week with our regular therapists.  Erin has been approved for 4 sessions each week, which is amazing!  We were only receiving one time per week prior to going to the Kennedy Krieger Institute.  Erin's therapist is astounded at the progress she has made in the month we were away.  We are excited to continue on this journey to see just where it will lead. 

Please pray for the little girls who were born yesterday in Canada.  They are conjoined at the head.  Right now is a very critical and uncertain time for them and their family. 

On Friday evening we returned home from a four-week stay in Baltimore, MD.  Erin was receiving intense physical and occupational therapy at an amazing place called the International Center for Spinal Cord Injury at Kennedy Krieger Institute.  I can't even begin to thank everyone we worked with and met while we were there.  It was like entering a bright new world where doctors and therapists expect people with spinal cord injuries to RECOVER function and not just maintain what they presently have!  We met many people who had recovered quite a bit of function, through a great deal of hard work and determination.  Erin's therapists, Amy and Danielle, were truly outstanding and were able to keep Erin working hard (even though she thought she was just playing).  Erin adored them, and are so thankful to them for all they did for our entire family!!  All of our girls did a wonderful job, especially since most days they went without naps.  We believe that Erin may be on the road to recovering some function.  She has gained more control of her abdomen and can sit up straighter than before.  Also, the last few days of therapy proved to be the best.  Erin was on the treadmill in the lite gait trainer and she began to randomly lift up one of her feet and hold it up for 3-5 seconds.  Of course, the first time she did it, I was the only witness!  However, just a few minutes later she did it again and everyone saw it.  The doctors and therapists think it is a positive sign.  It could just be reflex, but Erin needs to have reflexes in order to begin recovery.  We'll see what the future holds for our beautiful little girl, but whatever the outcome is, we'll know that we are doing everything possible to help her recover as much function as she can.  We're also very lucky, because Erin's therapists from home joined us for a day of therapy in Baltimore, so now they can continue where Amy and Danielle left off. 

After four weeks of working so hard, my mom and I took the girls to the National Aquarium in Baltimore on Sunday (yes, we drove all the way back).  They were so excited to see the dolphins!  We went to the dolphin show, and that just solidified Taylor's desire to become a dolphin trainer.  She has been talking about it for months, but after seeing the show, she was ready to jump in with them that day!  They also loved seeing the stingrays, sea turtle, sea horses, and sharks.  Taylor was sure all of the sharks were great whites!  Can you tell we watch Animal Planet a lot?!  The other thing the girls loved was the frog exhibit.  They were able to see frogs from all over the world, in a rainbow of colors.  Of course, what amused us the most was that all three girls were more excited about playing around these pillars of blue water with bubbles erupting up through them than any other thing we did that day (well, for Taylor it was a toss-up between that and the dolphins).  I'm posting some pictures from our day, and you will see their favorite part.  Oh, I am also posting a few pictures from our last few days of therapy.  You will see the girls with Mr. Dane -- their first crush!  They all loved him dearly and got so excited every time he entered the room.  Thank you Dane for being so patient and for taking the time to play with our girls and keep them entertained!

Taylor is getting very excited -- she will be turning 5 soon!  I think we talk about it at least once each day!   I can't believe it's been almost 5 years since I first held my precious Taylor Joy. 

I also want to wish my niece Elizabeth a very happy birthday!  We love you so much!

If there is anyone reading this who would like more information about the Kennedy Krieger Institute, please don't hesitate to contact us.  We believe that we could not have found a better place to take our daughter. 

Again, we want to thank everyone who worked to make it possible for us to even go to Kennedy Krieger:  Dr. Labow, Anita, the Marine Corps Law Enforcement Foundation, as well as everyone else who helped us with the other very important aspects of being there for a month.  We would like to thank my mom for coming out to help us with the girls during this extremely busy time.  We all love you and truly appreciate what you do for our family!

Just a quick update to let everyone know that we're all doing very well.  Therapy is keeping us extremely busy 5 days a week, and we just try to play catch-up on the weekends.   We will write more about the therapy this weekend or early next week.  Erin and Jade's updated show will air tomorrow evening (Wednesday, Oct. 11) on The Learning Channel (TLC) at 10 p.m. EST.  The beginning of the show will probably be the same, and the new footage will be added on for a different ending.   It is called "Conjoined Twins: A New Life Apart".

I'm adding a few new pictures.  Before therapy today we were down by the water feeding the seagulls.  The girls thought that was the greatest thing ever!  I also took some pictures of them during dinner -- they goofed around more than they ate, but that's o.k. once in awhile.  Oh, I'm also adding a picture of Erin doing her very favorite activity in therapy... riding on the scooter.  She doesn't even realize she's working hard, because she's having so much fun!

Big news:  Erin finally weighs 20 lbs!!!!  She weighs 20 lbs 4 oz to be exact (with her clothes on -- but we're still counting it!).  I'm not sure why that was such a big milestone for us, but it was.  Considering many babies reach 20 lbs around their first birthday, we were lagging a little.  Anyway, Erin has actually gained 1 1/2 lbs in the past month, which is great.  That means she is putting on muscle mass -- hopefully in her legs, but I'm sure quite a bit in her arms as well.  She is an absolute speed demon in her wheelchair, and she can almost keep up with her sisters when they run (in short bursts).  She absolutely doesn't want to be left behind!  If they get ahead of her, she pushes harder with her arms and yells, "WAIT FOR ME!" 

We spent the evening at Children's Hospital in D.C. for their Volunteer Services dinner.  The girls were invited to help in singing "You are my Sunshine" to all of the volunteers.  It was so very cute!  Taylor sang right into the microphone, Erin just sat and watched the crowd from the front of the stage, and Jade came to the back and hung out with me, which was a huge surprise.  She has been such a ham lately, I never thought she would be the shy one.  Erin is the one who is extremely shy, but she did pretty well tonight.  Of course, they all had a fantastic time, especially when they were able to run around in the atrium and play with their very favorite people.  Thank you again to everyone from Children's National Medical Center who treat our children like your own.  You all mean more to us than we could ever express in words!

Erin's therapy continues to go very well.  She worked hard for three straight hours today and then had a doctors appointment immediately following that.  They are all such troopers!

We want to take a moment to thank a very special person who has helped us tremendously over the past year.  Anita (our TriCare case manager), we can't thank you enough for all that you have done for our family.  Without you, we would not be in this wonderful place!  You have worked so hard and fought more than a few battles to make sure that our children received the very best care possible.  Thank you for taking the time to come to Jade's surgery, to Erin's therapy, and for finding a company to make Erin's shirts.  We will miss you, not only for your hard work and dedication to our family, but also for the wonderful discussions we've had on the phone.  You are an amazing person, and we are blessed to know you!

We want to wish my brother, Mike, a very happy birthday!  We wish we were there to celebrate with you big brother!

As far as I know, the updated episode of Erin and Jade's show is still scheduled to air on October 11th on TLC.  I believe it has a new name -- I'm not sure what it is, but it will have "Conjoined Twins" somewhere in the title.  I think it will be on at 10 p.m. EST.  If any of this changes, I will let you all know.

We want to thank everyone for taking the time to visit our site and for all of the wonderful and positive comments in our guestbook.  We really appreciate how much you all care about our family.  For those of you who are interested, there will be an updated episode of Erin and Jade's story airing on TLC (and later Discovery Health) on October 11.  If the date changes, I will post it here, but as of right now that is what we have been told.  There should be footage of Jade's surgery and other recent events.

Erin's physical and occupational therapy are keeping us very busy.  She is doing extremely well, and we are thrilled to have this opportunity.  In the past, we had been told that Erin had no chance of recovering any function below the level of her injury.  The doctors and therapists we are working with now have given us some hope that the possibility exists.  I met a man named Patrick Rummerfield the other day who was, at one time, paralyzed from the neck down.  Let me just say that he WALKED into the therapy gym and shook my hand, and I would never have guessed that he was a quadriplegic had he not told me.  AMAZING!!!  That gave me even more hope. 

We want to take a moment to thank some extremely wonderful people.  The Marine Corps Law Enforcement Foundation has assisted us numerous times in the past, and were it not for them, we would not be where we are today.  Thank you from the bottom of our hearts for everything you have done for our family! 

I have posted new pictures of all three girls during Erin's therapy sessions.  As you can see, the therapists are wonderful at including Jade and Taylor, which encourages Erin to work harder.  Everyone has a great deal of fun each day!

I posted a few pictures of Kevin Jr.'s birthday celebration, as well as some pictures of the girls at Erin's therapy session today.  Not only does Erin do an outstanding job in therapy, but her sisters are always so well-behaved.  We are extremely proud of all of them for being so good throughout all of the hurdles we have encountered.

People Magazine will have an article about our family as well as Angie and Ryan Shaw and a few other families of conjoined twins in the issue that comes out tomorrow.  Thank you Macon for taking such an interest and caring so much about all of us.

First and foremost, we would like to wish Kevin Jr. a very happy birthday!!  This week he celebrated his 14th birthday.  Kevin Jr., we love you and hope you have a wonderful year!

We apologize for the delay in updates.  In the past few weeks we've really pulled together as a family to concentrate on each other.  When families go through major medical issues, there is a great deal of stress created.  That stress can tear families apart.  We have always worked very hard to make sure that doesn't happen to our beautiful family.  So, for the last few weeks we have been spending a great deal of quality time together, strengthening the love and the bond we have to each other.

Jade continues to do very well.  Her incision is healing quite nicely, but her chest is still a bit tender to the touch (understandably).  The swelling has gone down, and it appears that her chest wall does still curve outward (more than normal); however, it is much better than it was, and we are happy and satisfied with the results of the surgery.  Once she is older, she may choose to have it revised even more, but for now she seems very excited to have her "bump gone".

Erin has begun a period of intense physical and occupational therapy.  She attends therapy 5 days a week for several hours each day.  She works very hard and is getting stronger.  They have set up a little trike for her to ride.  The therapists place electrodes on her legs, which are hooked to a machine that sends electrical impulses to her muscles.  The therapists set it up so that her muscles fire in the correct order for her to actually peddle the trike.  It's so exciting to see her riding the trike, even though I know she is not doing it on her own.  This exercise will build her muscles and possibly allow signals to get through to her brain that her muscles are working.  Today Erin walked with the assistance of something called a Lite Gait Trainer.  She was hooked into a harness and suspended above the ground so that her feet touched the floor.  She was put on a treadmill, and we moved her legs forward in a walking motion.  Erin could not stop looking at her feet, and I kept telling her that she was walking.  The therapists said that they felt her muscles initiating a slight stepping motion once in awhile.  They can't tell if it is reflex or not, but even if it is, they said they can possibly use the reflex to help her.  We have learned not to get our hopes up, but we're definitely excited to give her this opportunity.   We'll let you know how everything goes. 

Please keep Mateo and McHale Shaw in your prayers.  They are both off the ventilators and continue to make small improvements.  They definitely have a long way to go, and their family needs as much support as possible. 

Congratulations to the Herrin family.  Kendra and Maliyah were discharged from the hospital on Sunday, and they are finally able to enjoy life at home as separate little girls.  They too have a long road ahead, but each step for all of us is a small miracle.

Mateo and McHale Shaw were successfully separated late last night!   Thankfully there was enough skin to close the large wounds, and surgery for both boys was completed very early this morning.  The family showed great courage and grace through the entire day of waiting.  The recovery period is critical, and they will need continued support and prayers for many weeks, months and years to come.  Thank you to everyone who has been keeping this family in your thoughts and prayers. 

Jade is doing amazingly well.  When the hospital staff saw her yesterday, they could not believe that she was just one week out from her surgery.  I think I would still be lying in bed, but she is up and running around like nothing happened.  She still has a small bump, but the plastic surgeon was able to remove a large portion of the original defect. 

Kevin Jr. started high school this week.  He seems to like it so far, and I'm sure he will do very well. 

Today is the separation surgery of Mateo and McHale Shaw.  Please keep them in your thoughts and prayers.  The surgery will last somewhere between 14-24 hours.  You can check for updates on their condition at www.dcchildrens.com   You can also click on this link to see the website their parents, Ryan and Angie, have set up:  Mateo and McHale Shaw

Our hearts, thoughts and prayers are with them all today and in the coming weeks of recovery.

Jade went into surgery on Wednesday morning at 11:15.  The plastic surgeon, Dr. Boyajian, wasn't sure what he would find once he opened up her chest, so he couldn't give us a definite plan on what he was going to do.  He did give us a few scenarios, from the best to the worst, and she ended up somewhere in the middle.  The first thing he found was that she had about 7-8 cysts under her skin right along the scar line from the separation surgery.  He didn't know what they were, but he thinks he was able to remove all of them during the surgery.  As he slowly made his way down to her ribcage, the doctor found that her bone structure was much worse than he originally thought.  The ribs actually swooped up to make the large ridge.  Dr. Boyajian removed the section that was jutting out, and then he had to break three of her ribs so that he could position them correctly.  He took a portion of another rib to bridge the gap created when he removed the malformed section, and then he wired it all together.  Meanwhile, the cardiac surgeon was pacing in the background, because all of this was happening directly above Jade's heart.  This is the type of surgery the cardiac surgeon is usually very involved in.  Jade had two central lines placed (directly into arteries) to monitor her blood pressure.  If her pressures would have changed at all, the cardiac surgeon would have jumped in to assist.  One of the lines was placed in her neck and one in her arm.  Jade arrived in the recovery room at about 4:30 p.m., and she was already waking up.  She ended up vomiting twice while in recovery, which was worrisome but I'm sure quite normal.  Clarine, a very special woman at Children's Hospital, was able to secure a private room for Jade, and she was moved upstairs at about 6 p.m.  Jade was given morphine for pain, so she slept the majority of that night and the next day.  The doctors changed pain medications late Thursday afternoon, and she began to wake up a little more, but she still wasn't eating.  Finally on Friday morning it seemed like she turned a corner, and she ate part of her breakfast.  After that Jade seemed to improve dramatically.  I took her for a ride in a wagon, visiting some of her favorite places in the hospital.  When we got back to her room, she wanted to walk by herself, so we went down to the playroom.  She began to act like her old self, for the most part.  She was still in pain, especially when she tried to sit down, get up, or reach in certain directions.  However, her nurse was very impressed with her recovery.  In the afternoon, the nurse paged the doctor to take a look at her, and he decided that she was well enough to go home.  We were almost out of the hospital when we noticed that her neck was very swollen in the area where they had placed the central line.  We made a trip back up to the clinic to make sure the swelling was normal and not anything to be concerned about.  Dr. Boyajian looked at it and told us it was a hematoma -- nothing to worry about.  So, we finally made our way out of the hospital close to 5 p.m.  It was nice to finally be home, and Jade has continued to improve by leaps and bounds.  She did wake up crying a few times in the night, but we were able to calm her down and get her back to sleep.  She has not had any pain medication today, and seems to be doing extremely well.  She has been happily playing with her sisters.  She wants to run and jump like normal, but we have told her that she shouldn't do that for a few days.  I just find it so amazing how quickly children can recovery from major surgeries.  I think if an adult would have gone through the same surgery Jade did, he/she would have been bed-ridden for weeks probably.  Here she is, three days later, running around like nothing happened.

Everyone else is doing very well.  Kevin Jr. had orientation for high school this week.  Taylor and Erin were very patient while sitting and waiting in the hospital.  Erin had a difficult time looking at Jade when she was in a lot of pain in the hospital.  We could tell that it made her sad and nervous.  Now that Jade is home, she wants to play with her all the time.

Keep Mateo and McHale in your thoughts and prayers as their separation surgery quickly approaches.  Their parents need all of the support they can get. 

Yet another busy week in the Buckles household.  On Tuesday we went to the Kennedy Krieger Institute in Baltimore.  Erin was evaluated by a physical therapist, occupational therapist, physiatrist, and the head of the International Center for Spinal Cord Injury, Dr. John McDonald.  They wanted to see what Erin can and cannot do at this point.  She still only weighs 18 lbs 8 oz.  I have faith that she will someday break that 20 lb mark!  Anyway, the therapists tried the electrical stimulation with her, which sends electrical impulses to her muscles via small electrodes placed on her legs and back (separately).  We were warned ahead of time that we may not see any movement in her muscles.  They told us that it was possible that her muscles had atrophied too much to react or that they may no longer be viable.  It was a somewhat nervous moment for me.  They increased the stimulation level very slowly until they could see her muscles contract.  It worked..... on every muscle group below the level of injury!!!!!  What a wonderful sight to see!  That means that her muscles are still viable.  We can use the electrical stimulation to build her muscles back up, so that when there is a treatment for spinal cord injuries, Erin will be ready to walk!  For us, it's not a matter of IF it will happen, but WHEN it will happen.  Anyway, they said that Erin is a perfect candidate for their program.  That means that sometime after Jade is recovered from her surgery, we will basically be moving to Baltimore for a month so that Erin can undergo intense physical and occupational therapy.  We will see how she does with it and go on from there.  Dr. McDonald told us that, in general, infants who are born with a spinal cord injury or receive one soon after, like Erin did, have an increased chance at recovering function.  He said that we have done all the right things with her up to this point.  Kevin and I are cautiously optimistic, and we will just see what happens. 

Today we went up to Children's Hospital to visit with some very special people.  Angie and Ryan, and their sons Mateo and McHale, are preparing for separation surgery, which will happen quite soon.  We are honored and blessed to know them and to have the opportunity to spend time with them.  Those little boys are absolutely adorable and their parents are courageous and strong.  They have overcome so many hurdles already, and we pray that they will continue to do so.  We believe they are in the very best place possible with the best surgeons they could ask for.  Please keep this family in your thoughts and prayers in the coming weeks.  We know that miracles do happen!

Erin also had an appointment today with her regular physiatrist.  She has been complaining of back pain, and we wanted to have her checked out to make sure it didn't have anything to do with her spinal cord.  The doctor just thinks that she uses her right side more, and the muscles in her back on that side are much tighter.  We will work with her physical therapist to come up with stretching and massaging techniques to help relieve some of that tension.  We are so thankful that her doctors are just as concerned with her well-being as we are. 

Jade's surgery is fast approaching.  The bump on her chest has been bothering her quite a bit, so I think she's excited to have it removed.  We talk about it with her, trying to prepare her as much as possible for her hospital stay and recovery.  Since she is our most active child, I think staying in bed will be difficult for her, but if she is in pain, she may not complain.  We hope that she recovers quickly, with as little pain as possible.

I want to apologize for the advertising that pops up when you try to get to our site.  We have run out of bandwidth for the month, and it doesn't reset until the 27th.  With all of the news about conjoined twins in the past few weeks, we have had many new people visit our site.  We are very grateful for the interest in our family, and we are so glad that people have taken such an interest in conjoined twins in general.  Each family of conjoined twins and formerly conjoined twins needs a great deal of support and encouragement. We want to thank everyone who visits our site and the sites of all of our peers. 

Our family is doing very well.  Jade's surgery is approaching quickly, so I have to wrap my mind around the fact that I will have to give her up to an anesthesiologist yet again.  Of course, we'll be extremely busy up until that day, so hopefully I won't have too much time to think about it. 

We are getting Kevin Jr. ready to go to high school this year.  Wow, it's unbelievable how quickly they grow up! 

We want to wish my sister Dee Dee a very happy birthday!  We hope you have a wonderful day!

We would like to congratulate the Herrin family on the successfull separation of their beautiful and courageous daughters, Kendra and Maliyah.  We are still thinking about you and praying for a quick and easy recovery.  Everyone can check up on their progress at the Herrin's website:  www.herrintwins.com   

We also want to say congratulations to Stacy and Suzy on the birth of their daughters! 

Our family has finally recovered from our trip to MN.  We are now getting ready for Jade's surgery at the end of the month and Erin's appointments at the International Center for Spinal Cord Injury.  I think we'll be busy for awhile! 

I finally found some time to put our vacation pictures onto the site.  You can see them on the "Photos: Vacation 2006" page.  These are actually just a few of the many that we have.  We had a wonderful time.  I should mention, for those of you who remember how much Taylor loves frogs, that she found many more frogs this year.  Instead of calling them all Froggy, each one received his/her own name.  Her favorites included:  Olivia, Cutie, and Patootie.  The turtle we had for the turtle races, she named him Speedy.  And you may see, in one of the pictures, that my parents also have "pet" chipmunks at their house.  The girls went out every day to feed them sunflower seeds.  Since we usually only saw one at a time (there were at least 4), we called them all Chippy.  What fun!

I would like to ask everyone to have another very special family in their thoughts and prayers for the next few days at least.  Erin and Jake Herrin have two beautiful little girls who will undergo separation surgery on Monday.  Kendra and Maliyah are almost 4 1/2 years old.  They have had to wait this long for the surgery because the girls share one kidney between them.  The doctors wanted them bigger and healthier, so that Maliyah can undergo a kidney transplant as soon as she recovers from her separation surgery.  This family has a very difficult road ahead of them, and they could use all of the support they can get.  Here is the link to their website:  www.herrintwins.com 

Erin has been complaining that her back hurts lately.  Hopefully it is just related to her muscles and the mattress she sleeps on.  Remember, Erin can't change positions in the night like most other people.  After getting in touch with her physiatrist, it was decided that Erin should be seen very soon.  We're hoping that it has nothing to do with her spinal cord.  We'll just have to wait and see.  I'll let you know what we find out.

I apologize for not updating the site in a few weeks.  The girls and I just came back from a two week vacation in MN, where we visited family and friends.  We had a wonderful time and are very thankful for the opportunity to go.  Unfortunately, Kevin was unable to go with us because summer is his busiest time at work.  Kevin Jr. is enjoying camp this summer, so he didn't come along either.  We really missed having them with us!  Anyway, I'll try to give a brief summary of our activities, as we stayed extremely busy the entire time we were there.  I will also add many pictures from our trip to our photos page, although it might not be until tonight.

Here are a few of the things we did on our trip:

My mom, my sister and I took the girls to the Como Park Zoo in St. Paul.  They loved seeing all of the animals, especially the giraffes, monkeys and polar bears.  I think Taylor liked the seals the best (because she is now a Seal in swimming lessons!).  Of course, their favorite part of the day was going on the rides.   Erin didn't like the first one, but she did enjoy riding on a little train.  Taylor's favorite ride was the swings, which Jade wanted to ride as well, but she was too small.  Erin and Jade's favorite ride was one where they could sit in a little car and play with the steering wheel while the car went around in circles (like the carousel).  They played a fishing game and all three girls won a prize.  They were excited!

We went to a wading pool, which the girls loved.  Taylor made many new friends, and they all had a great time!

Since the girls wanted to see farm animals, my family went to a county fair.  They had many buildings filled with cows, horses, pigs, goats, chickens, rabbits and probably some that I'm forgetting.  We even watched a cow being milked!  Taylor and Jade were excited, but Erin wanted nothing to do with most of the animals.  She was terrified of the horses, most of the cows, and the goats.  She let me take her near the baby cows and the bunnies, and she liked the chicks.  We think it's because she feels like she can't get away if something happens.  She must feel so out of control of what happens to her.  Anyway, I felt so bad for her, so we just hung out while everyone else looked at the animals.  Interestingly, there was a pair of (stuffed) conjoined twin calves on display.  They must not have survived long after birth, but there weren't any details on the little sign near them.    Anyway, the girls also enjoyed a few rides and games.  You can't leave the fair without at least one prize!

After the fair, we went to my brother Mike's house for dinner.  The girls loved playing with Mike and Grace's new puppy.  I have many adorable pictures from that.  Taylor rode their horse, Lady, again.  This year she rode by herself, which was fun to see.  Erin had a chance to practice pushing her wheelchair, and she has become very, very good at it.  Most people are amazed to see such a little girl doing so well.

I was excited to introduced my girls to one of my favorite childhood pastimes, which was the turtle races in my hometown.  My sister found a turtle for the girls, so we took them to the races.  Each year, during the town's Hometown Pride Days, they have the turtle races.  Many, many children show up with turtles in tow, looking to win their race.  Our turtle never won, but it was fun to see the kids get excited.  We shared our turtle with some of my friends' children, so he really got a workout!  I'm sure my girls will never find a friend who has participated in a turtle race!

We went to the Mall of America last Saturday.  Taylor, Jade and Erin aren't old enough to really enjoy the mall, but they were excited about the amusement park in the center of it.  We met up with some very special people that day, and I'm so glad that we had the opportunity to see them.  We took the girls on a few rides, and they had a lot of fun.  The big hit of the day, however, was taking them to Underwater Adventures.  It is an aquarium underneath the Mall of America.  They were so excited to see sharks, stingrays, sea turtles, barricudas, schools of fish, Nemo, Dori, jellyfish and an octopus.  They have been talking about it everyday since then.  Taylor was able to make a shark-tooth necklace, which she wears with pride and tells everyone that it is a real shark tooth.  Jade had been going full-speed all day, but she ran out of energy just as we were entering Underwater Adventures.  She slept the entire time we were there!  Oh well, I'm sure we'll go back again someday.

On Sunday, we went to the Minnesota Twins baseball game.  Amy and Jesse Carlsen, with Abby and Belle, threw out the first pitch.  It was a special day for them, and I'm glad we were able to be a part of it.  It was fun to watch our girls interacting with them.  It seems that Belle is quite a bit like Jade, with non-stop activity, and Abby is like Erin, laid-back and easy going.  We had to leave the game early to take my sister to the airport, so we missed the exciting ending of the game, where the Twins came back and won.  That's o.k., the girls were getting quite antsy as it was.  I think it's difficult for any 2 year old to sit still for that long.  We had a great day.

Our last few days were spent visiting with family members.  It was good to reconnect with them, and we enjoyed their company. 

We arrived home yesterday.  While we are so glad we went, we were also very excited to be home.  It was a wonderful trip, and I want to thank my family for everything! 

It is now time to get ready for many new appointments for Erin.  We will be returning to Kennedy Krieger Institute for more evaluations and therapy.  Jade's surgery is scheduled for the end of this month.  The plastic surgeon will reconstruct her chest wall, if possible.  The cardiac surgeon will be present, because part of her heart has moved into the space created by the bump on her chest.  It seems we once again have a lot on our plate, but we are happy to have it.  We are thankful and blessed to have all of our children in our lives, and we couldn't ask for anything more.

We also want to wish our nephew, Devon, a very happy birthday!  We hope you had a wonderful day!

The Stem Cell Research Enhancement Act, H.R. 810, was passed by the Senate yesterday with a vote of 63 to 37.  This is a crucial step in the process of making embryonic stem cell research possible; however, while we are excited for this small victory, we know that this bill has a long way to go before becoming law.  It now has to go to the President to be signed, but by all reports, he will veto this extremely important piece of legislation.  It will be the first veto of his presidency.  My hope is that he will listen to all of the research and facts before making his final decision, but I’m afraid that President Bush has already made up his mind.  The opinions of the masses SHOULD have an impact on his decision, but I doubt that will happen.  Here is a link to an article about this topic:  http://news.yahoo.com/s/ap/20060719/ap_on_go_co/stem_cells  Remember, the embryos that scientists would use for research are ones that would definitely be discarded.  What is more ethical and moral:  discarding the embryos or using them to help millions of people around the world?  I guess President Bush thinks that discarding them is the better option.  I do want to clarify something.  IVF is a miracle procedure for so many couples.  It allows them to have children when it didn't seem possible.  Quite often, a number of their embryos don't fully develop and the hospital discards them immediately without the consent of the family and without having the option of freezing them.  Those are cells that would never develop into a baby, even if they were implanted into a woman.  For the couples that do choose to give their unused viable embryos up for adoption, I applaud you and want you to know that you are heroes to many families who have no other options for having children.  It is an absolutely amazing and wonderful gift that you give!  I would rather have all of the frozen viable embryos be adopted by families wanting children, because our children are precious to us and I am thankful each and every day to have them in our lives.  My wish is that every couple who would like to experience the blessing of children should have that opportunity.  However, the truth is that some couples do choose to discard their remaining frozen embryos after they have the family they want, and I am sure it is a very difficult decision to make.  It is these embryos that the bill is referring to.  Those families should also have the option of donating the embryos for research to cure diseases such as cancer, diabetes, Parkinsons disease, MS, muscular dystrophy, ALS, Alzheimers, strokes and spinal cord injuries (to name a few).

 

We want to thank everyone who took the time to call or write to their Senators.  We cannot tell you how much we appreciate your efforts to help Erin and the millions of other people who could benefit from stem cell research.  Please help us to continue to fight for hope, because that’s what this bill means to many people.  Unfortunately, we may someday have to travel to another country for treatment for Erin, because many other nations believe embryonic stem cell research is the key to unlocking the cures to diseases and disabilities. 

 

We want to say happy birthday to 2 of our nephews, Christian and Jonathan.  We hope  you both had wonderful birthdays this year!

Everyone here is doing extremely well.  We've had to play indoors quite a bit, because of this unbearable heat, but the girls seem to be taking it in stride.  Erin is enjoying her new wheelchair, although we are still waiting for the vendor to come back to make adjustments.  No surprise there!

Today is the Senate vote for the stem cell bills.  We are hoping and praying that H.R. 810 passes, which is the Stem Cell Research Enhancement Act.  This is the one piece of legislation that can truly help millions of people in the world.  I will try to explain what this is so that everyone can understand where the stem cells would come from.  When couples go in for InVitro Fertilization treatments, they often get many viable embryos.  Doctors usually only implant 2 or 3 of those embryos in each attempt at pregnancy.  After the couple has the family they want, they are given options of what to do with the remaining embryos.  They can save them for future IVF treatments, they can donate them to other couples, or they can just dispose of them.  Research has shown that most couples who don't want any more IVF treatments actually just dispose of their remaining embryos, which basically means that they are thrown in the trash.  I know that sounds harsh, but that's exactly what happens.  How moral and ethical is that??  Anyway, if this Stem Cell Research Enhancement Act goes through, couples would be given another option:  to donate their remaining embyros for research.  Doctors will be able to use stem cells from from the embryos that are donated for research to find cures for  diseases like Parkinsons, ALS, Alzheimers, cancer, diabetes, strokes and spinal cord injuries (and many more).  The embryos to be used have never been inside a human body.  They are not aborted fetuses.  Couples who choose to donate their remaining embryos for research would know the types of studies possible.  They would give written consent and have complete understanding of where their embryos were going.  What a gift they would be giving to millions of people around the world.  Remember, these are embryos that would otherwise be disposed of.  Scientists are so close to finding ways to make the brain and spinal cord regenerate themselves using stem cells, but the research is stalled right now until the government can clear a path and make the funds available.  These researchers are actually able to sever the spinal cords in rats, at which point they are completely paralyzed from that level down.  After stem cell transplants, these rats are eventually able to walk and run normally.  It's amazing!  However, there is a lot of work to be done before the human trials and we need everyone's support to make it happen.  Pres. Bush is against stem cell research, therefore most Republicans are against it, but it is something that will harm no one and can help millions.  Because of the misinformation out there, many people don't know the truth about embryonic stem cell research.  The few key people who put the words abortion and stem cell research together have caused many to turn against it.

The reason embryonic stem cell research is so important is that embryonic stem cells have the ability to form many different types of tissue.  They are called pluripotent cells. 

Call Your Senators Today

The Senate Vote is Confirmed for Tuesday, July 18th     The vote on the Stem Cell Research Enhancement Act, H.R. 810, is scheduled for Tuesday, July 18, 2006 in the United States Senate.  Call your Senator TODAY. We need a full court press on the entire Senate to get this bill passed.  We can only do that with your help and we know you have what it takes to bring us to victory.  It is a vote for H.R. 810, and this bill alone, that will move stem cell research forward in our country. Make it your goal today and this weekend to tell at least 5 friends and family members about the vote and help them call their Senators.  This bill and this vote should be the first thing you mention when you talk to your neighbors, your friends on the golf course, or visit with family. Please call your Senators today with this message and have your friends and family do the same:  “I know a vote is scheduled for the Stem Cell Research Enhancement Act, H.R. 810 on Tuesday, July 18th.  I urge you to vote yes.  A yes vote on H.R. 810 is the only vote that I will consider a vote in favor of stem cell research that is pro-patient and pro-research.  I request a response from my Senator. My name and address are (fill in the blank).” If you have friends and family in other states, you can look up their Senators at www.senate.gov.  You can be connected to any Senate office by calling the Capitol switchboard at 202-224-3121.

Erin's wheelchair was finally delivered this morning!    She was so excited and wanted to get into it immediately.  She asked 3 times on the way to Taylor's swimming lesson if we had her wheelchair with us!  After Taylor's last lesson, we all went bowling with the MOPS group (Mother's of Preschoolers).  We had so much fun -- all 3 girls were able to bowl using the little ramp and bumpers for kids.  I'm glad we went!

I'll post pictures a little later this afternoon, so you can all see Erin's new wheels.  I also have some cute photos of the girls bowling. 

Have a great day!

Taylor passed her swimming lessons!!!  She is now a Seal.  We are so excited for her -- she did such an outstanding job!  Way to go Taylor Joy!  I think she spends more time underwater than she does on top -- that's my girl!  I just may have a swimmer here after all!

Well, surprise, surprise, we didn't get Erin's wheelchair today, but I just got a call from the vendor and he has everything in now.  He is supposed to deliver it in the morning before Taylor's last lesson.  We'll see.  I hope it comes in, because Erin just can't wait to get it.  The doorbell rang today, and Erin said, "Is that my wheelchair?"

Please look at my last entry (July 11th).  Help us if you can.

Thanks for all of the support!

I have never before gotten involved with anything political.  I have never called or written my senators or congressmen about any issues.  Now, however, it is time for us to get involved.  There is going to be a vote very soon in the U.S. Senate about the Stem Cell Research Enhancement Act, which is called H.R. 810.  This needs to pass with at least 60 votes.  This act will make it possible for researchers to move forward with stem cell research.  They are so close to finding the answers they need to help millions of people with spinal cord injuries, Parkinson's Disease, ALS, and many other things that affect the brain and spinal cord.  If this passes, Erin could be walking on her own before her 20th birthday.  That would be truly amazing!  Please help us in this fight to keep stem cell research alive.  Please go to this site to find out how you can help Erin, and the many other people out there who need stem cell research to go forward:  http://www.christopherreeve.org/site/c.geIMLPOpGjF/b.1838337/k.6A6D/Call_Your_Senators_Today.htm

Thank you in advance for helping!

Well, Erin's wheelchair has made it into the area, but it's still not here at our house.  The vendor is waiting for her seat cushion, which should be in by Monday.  We have an appointment for Wednesday to have it delivered to us, so I'm sure we'll have many pictures of Erin in her new wheelchair posted shortly afterwards.  We're all very excited. 

I want to wish my wonderful husband a very happy anniversary, which is tomorrow.  He is my best friend, and I am blessed to have him in my life.  Kevin, thank you for bringing so much happiness into my life and for being my rock during the difficult times we've shared with our girls.  I love you!

I've posted quite a few pictures of the girls from the past few days.  I had a difficult time choosing which ones were the best, so now there are many.

We hope everyone had a very happy and safe 4th of July!  We had a lot of storms go through the area yesterday, so we didn't make it to see any big fireworks displays, but we were able to see some in our neighborhood.  It's a good thing that we didn't go to see any big shows, because both Jade and Erin were terrified of the noise.  Jade called it Bunder, which is what she calls thunder, and Erin was so scared she was literally shaking.  Kevin took the little girls inside while Taylor and I stood in our driveway and enjoyed the fireworks down the street.

Taylor began her swimming lessons on Monday, and she absolutely loves the class.  She is so excited to go each day, and she enjoys showing her teacher how she can put her face in the water.  At that age, every child wants the teacher's full attention and has something to demonstrate.  It's fun to watch!  Maybe Taylor will want to be a swimmer too!    I'll post a few pictures on our photos page.

We're still hoping to get Erin's new wheelchair this week.  We haven't heard anything yet. 

Yesterday we spent the day at the International Center for Spinal Cord Injury, which is at the Kennedy Krieger Institute in Baltimore, MD.  Some say it is one of the premiere centers for people with spinal cord injuries.  I came away from the day with a tremendous amount of hope for Erin.  Kevin and I just know that we will see her walk on her own one day.  The doctor who examined Erin talked to us about how they don’t just want people with spinal cord injuries to maintain the function they already have, but to improve on it.  She was extremely pleased that Erin still has all of her reflexes below her injury.  She also said that, because Erin’s spinal cord injury occurred when she was so young (4 months old), her brain had not yet realized that it could control her lower extremities.  Erin had never experienced crawling or walking, therefore never making the connection between the muscles in her legs and her brain.  Erin may have some function below her injury without knowing that it’s there.  They would like to have us return to KKI (Kennedy Krieger Institute) in the future to run further tests and evaluations.  The physical and occupational therapists there incorporate electrical stimulation of the muscles with other physical activities, such as riding a stationary bike.  They even have one small enough to fit Erin (who is still only 19 lbs 8 oz).  Through the electrical stimulation, she would essentially be riding the bike, with her muscles working just as yours or mine would work while riding a bike.  The electrical stimulation, which is something Taylor receives on her right lower leg, also helps to build the muscles, which are atrophied from lack of use.  She would be getting a cardiovascular workout as well, which would help her to stay fit and healthy.  They would also like to get her into something called a lite gait trainer (sp?), which is a harness system that provides partial body weight support while standing.  The doctor we spoke to thinks that Erin needs therapy at least 3 times per week, for several hours at a time.   Erin would do all of these things in preparation for the time when (yes, I did say when) there is a surgery to repair her spinal cord injury through the use of stem cells.  Researchers are so close to having the answers, but there is a tremendous lack of support in this country.  I hope that changes soon!

 

I have found two other mothers who have children with the same injury that Erin has.  I’m not sure how common/rare it is for a child to have a stroke in her/his spinal cord, but it is nice to finally have others to talk to who know what we are going through.

 

I want to take a moment to wish my husband a very happy birthday.  There are two weeks in June where we get to celebrate what a wonderful husband, father, and best friend he is.  Kevin, we love you so much!  You are my rock, and I am so thankful to have you in my life!  I hope you had an outstanding Father’s Day and a happy, happy birthday.  Just know that we celebrate you each and every day of the year!

 

As it has been raining here for 5 straight days, we are hoping this soggy weather will soon leave us.  The girls are ready to get back outside to swim and play.  We were actually able to take Erin to swimming lessons today for the first time this week, but it’s getting ready to rain again this afternoon.  I don’t mind a little rain now and then, but this is ridiculous!  We found out that Jade is terrified of loud noises, such as thunder.  She calls it Bunder!  It's very cute.  However, every time it thundered this past week, which was often, she would cry and close her eyes as tight as she could.  Kevin and I haven't gotten much sleep when there is a thunderstorm during the night!  And of course, we live close enough to Quantico's bombing range to be able to hear when they are practicing, and Jade thinks that is "Bunder" too.  She seems fearless in everything else she does, but she is definitely scared of thunder.

 

We should have Erin’s new wheelchair before the end of next week.  Keep your fingers crossed!   

 

Today marks the two year anniversary of Erin and Jade's separation surgery.  We are absolutely thrilled to make it to this day!  What a blessing for our entire family!  We had a small party yesterday to celebrate the day.  We want to take a moment to thank everyone who played a role in caring for our girls, which includes hundreds of people from two different hospitals, physical therapists, and of course, our family members and friends.  We also want to thank all of you out there who care enough to check up on our family through our website and keep us in your thoughts and prayers even now.  Without all of you, we're not sure where we would be.  Thank you from the bottom of our hearts!

Erin had her first swimming lesson today.  She did an outstanding job.  She wasn't frightened, and she seemed very relaxed in the water.  It's actually more like therapy in the water, but we call it swimming lessons, because she knows that Taylor will be taking them soon as well.  Taylor and Jade waited patiently for the lessons to be over so they could go swimming as well.  We all had a lot of fun!

We do want to send out our condolences to another special family who lost their conjoined twin boys, Joshua and Jordan, on Father's Day.  We are heartbroken for you all.  Our thoughts and prayers are with you.

We had a wonderful time last night when we attended a special function at Kevin's workplace.  The girls were all extremely excited to see their daddy in uniform and to watch his unit perform.  After the performance there was a reception in the garden, at which was a group of musicians playing for those in attendance.  All 3 girls enjoyed themselves immensely while dancing and jumping and wheeling to the music.  Erin is trying out another demo chair, and we brought it with us.  She was ecstatic to be able to independently play around with her sisters and new friends without being held by mommy or daddy.  Everyone was amazed at how well she was doing in the chair.  Of course, that just increased our desire to obtain Erin's own chair.  This process is going so slowly, and frankly, it is quite frustrating.  However, we will do whatever it takes in order to help Erin achieve independence.   I've posted many pictures from our evening on a new page entitled "Photos: Summer 2006".

I've also posted new photos of our latest physical therapy session.  Erin and Taylor have so much fun while working very hard.  Even Jade manages to find fun things to do to keep herself occupied, although she often wants to join in on what her sisters are doing in therapy.  We usually have to distract her so she doesn't interrupt the session.

Erin continues to amaze us with her strength and determination.  We took her outside in her new stander yesterday, and she was extremely excited.  She was "walking" down the sidewalk, on her own, without the need for her walker.  She can pivot her upperbody without any assistance, and she was quite adamant that she could do it by herself.  She wouldn't even let me hold her hand, so I stationed myself right next to her (just in case).  Erin continued to check to make sure I wasn't touching her stander.  If I was even close, she would push my hand away and say, "I can do it myself".  It began to rain, but she insisted that we stay outside -- another new experience.  She would say to Jade, "Let's go!", and our girls would start walking down the sidewalk together.  Jade would say, "Erin, let's run!", and Erin would wiggle her body as fast as she could trying to go as fast as her sister.  Unfortunately, the faster she tried to go, the less progress she made.  We had to convince Erin to take her time and she would go farther.  We also were able to see a double rainbow, which all of the girls were excited about.  We ended up being soaking wet from the rain, but it was completely worth it.  Erin is now able to see the world from a standing position.  Even after we came inside, she wanted to stay in her stander.  We were up in Taylor's room, watching their new favorite movie (Ice Age), and Erin walked over to the bookcase.  She could reach the books on the top shelf.  She discovered she could open and close the drawers on Taylor's dresser.  When it was time for them to go to bed, Erin was very disappointed that she had to get out of her stander.  It's a whole new world, and she wants to experience all of it!

On Saturday I went to sign Taylor up for swimming lessons.  I tried to get her in it last summer, but the classes were all full before I even got close to the front of the line.  This year I decided to go earlier to ensure Taylor a spot in class.  Registration started at 7 a.m., so I got there at 6:44, thinking it would be o.k.  I pulled up to the pool to see the parking lot completely filled, and the line of people waiting to register wound around the parking lot and out to the street!  After 4 HOURS  of waiting (yes, I did say 4 hours), I was finally able to get her registered for lessons.  The great thing is that, as I got to the front of the line, I saw the woman who is in charge of adaptive aquatics.  I asked her how old a child needs to be to take adaptive lessons, and I told her about Erin.  She said that she would be very happy to have Erin in lessons, so Erin is registered for swimming lessons as well.  I am just thrilled!  Jade will be a little sad, but I will work with her.  I used to teach swimming lessons, but I know that quite often your own children do better with a different instructor.  However, Jade will just have to put up with me until she is old enough to be in lessons by herself.  Right now she would have to be in a parent/tot class, but I can't leave Taylor and Erin by themselves while doing that.  Of course, I can't get them in lessons all at the same time (that would be too easy), but I'm just happy to have them in at all.

I'm posting some new pictures of the girls.  There are a few from physical therapy last week, and then there are a few pictures of the girls with hats on.  They were being quite silly! 

On Friday, May 26th, the girls and I took some time to do something very special.  We released balloons for a little girl named Bethany, who was born as a conjoined twin.  She and her twin sister Alyssa were born on May 3rd, 2001 and had to undergo emergency separation surgery less than one month later on May 26th.  Very sadly, Bethany did not survive the surgery.  We decided to honor Bethany on that day.  In the process of picking out balloons, we talked about the significance of the event.  I talked to the girls about the many other conjoined twins that have not survived, just in the last few years.  Taylor decided that she wanted all of the babies who did not survive to have balloons in Heaven.  She was very excited to release them.  Here are the names of the babies (that we know of personally) that we honored on Friday:

Bethany Rose

Grace and Hope

Bruce Ryan and Brooks Lee

Jori Kristin and Josalynn Kaylee

Faith Anne and Vanna Love

There are many other sets of conjoined twins that either do not make it to birth or pass away soon after.  We want these families to know that their children will never be forgotten. 

Here are some pictures of our girls releasing the balloons.

 

 

We had a very emotional moment yesterday with Erin.  We saw her walk for the very first time!  Now, it's not the way that most people think of walking.  Erin received her new standing frame with a swivel base, which allows her to "walk" with a walker.  The swivel base consists of two little platform feet, and as Erin pivots her body from right to left, the feet take little steps and she moves forward.  As soon as they put her in it at the orthotics office yesterday, Erin took off walking.  The orthotist was shocked, because she has NEVER seen a child understand how to do that as quickly as Erin did.  I just started crying.  We are so proud of her, because she believes in herself, and she is never afraid of trying something new.  They took pictures and videotape of Erin walking while we were still at the office.  All of the office staff came out to see her cruising across the floor.  It was like Erin discovered yet another new world to explore.  As soon as we arrived home, we put her back in it, and she discovered she could now reach door handles and drawers.  She could stand at the refrigerator and play with all of the letters.  It was amazing to watch, and it just made me realize again how very thankful we are for the little things.  We don't need her to climb Mt. Everest or swim the English Channel, we are just happy and thankful that she is alive and able to do the things she can do.  I'm reading Christopher Reeve's first book, called Still Me, and it is helping me to see how truly lucky we are that Erin's spinal cord injury wasn't any higher up on her spinal cord.  With each level up (i.e. T3, T2, T1, etc) she would have lost more and more function.  She will be able to do a great many things in her life, because she is determined and she has the drive to succeed.  Erin can breath on her own, she can use her arms and shoulders and she can pivot her upper body.  We are thankful for all of those things.  Instead of feeling sad for what she can't do, we are thrilled at the things she can.  Don't get me wrong, there are still days that I am wishful, but the acceptance is coming.

I will post pictures of Erin in her new stander, as well as photos of all of the girls playing in the swimming pool the other day and just being silly around the house.  We have discovered that Jade is a little ball of energy.  She always has to be moving, even when we're trying to change her clothes or diapers, and she usually has this big grin on her face.  And of course, both Erin and Jade love to follow Taylor around.  They try to copy everything she says or does.  It's pretty cute!

Erin has finally been fitted for her first wheelchair.  The vendor brought us a demo model for her to try, and she was very excited.  The demo was still too big for her, but it gave us a good idea of how she will do in one that fits her perfectly.  Erin did a great job, and she was able to wheel herself all over the house.  She didn't want to get out of it, because she wanted to show her daddy when he got home.  I finally convinced her to take a nap while we waited for him to return from work.  I'm surprised she fell asleep!  Anyway, I'll post some pictures on our photos page, so you can see what she looked like today.  It will take about 5 more weeks before we receive Erin's chair.

This is just a quick note to let you know about another story being done on our family by a Milwaukee, WI station.  There are a few people out there that may be interested in seeing the latest video clip.  I will post the link.  It's funny how watching yourself on T.V. really clues you in to changes that need to be made.  I definitely need a haircut!    Anyway, here is the link: The Milwaukee Channel

I think there will be a follow-up story tomorrow night, so I will post a link to that as well.  Also, we just want to say thank you to the crew from channel 12 who came out to our house.  Everyone was so respectful and caring, and we really enjoyed our day.

Kevin and I would like to wish our mothers a very Happy Mother's Day!  We love you both, and we are blessed to have you in our lives!  Thank you for all that you are and all that you do!  You have been wonderful examples to us both.  We also want to wish all of the moms out there a Happy Mother's Day.  We would like to send out a very special wish for the moms whose babies have wings.  You are in our thoughts and prayers always.

We are all doing well.  This week should be pretty quiet and appointment-free, except for physical therapy.  Hopefully the rain will leave us so we can spend some time playing outside.  We have not made a decision about Jade's surgery yet.  We're thinking maybe at the end of the summer, but that is far from being set in stone.

Don't forget to wish all of the wonderful, hard-working moms out there a very Happy Mother's Day!

Congratulations to the Carlsen family....  they now have two beautiful, SEPARATE little girls!!!!!!  Way to go Abby and Belle! 

Much has happened in the last 2 weeks, but I'll try to give a brief summary.  We are still working on getting Erin's wheelchair.  We're finding that it is a lengthy process that takes a bit of patience.  She's still very excited about it, and when she sees other people in wheelchairs, she says, "just like me!"  She says she will be "super-fast!"

Erin and Taylor had MRI's on their spinal cords on Tuesday.  The neurosurgeon has looked at the films and says everything looks good for both of them at the moment.  He will continue to follow them and keep a close eye on their progress.

Jade had her appointment with the plastic surgeon on Tuesday as well.  He is a bit concerned that her heart is partially filling in the area where her chest curves out.  When he performs the surgery, he will have a cardiac surgeon in the OR with him, just in case.  He is ready to do the surgery whenever we are.  Kevin and I just have to figure out when we'll be ready for another surgery on one of our children.  That's a tough one for me.

Erin had her fluoroscopy done today.  It is a test where they can look at her lungs and diaphragm via x-ray so they can watch while she is breathing.  They were looking at her lung function.  Her lungs and diaphragm looked great, so the only thing that can explain her decreased lung function is the impairment of her intercostal muscles, which run between the ribs and help out when a person coughs.  Those muscles are controlled by parts of her spinal cord that have been damaged. 

We want to take a minute and wish the Carlsen family the very best.  Abby and Belle are being separated tomorrow (May 12), and we hope and pray for the very best outcome possible. 

We also want to say congratulations to Angie and Ryan on the birth of their beautiful twin boys Mateo and McHale! 

These next few weeks will once again be extremely busy with appointments.  Erin will finally be fitted for her first wheelchair, Erin and Taylor will both be having MRI's, Jade will be seen by the plastic surgeon to determine when her surgery will be, and Erin will have the testing done to determine how much lung function she has lost because of her spinal cord injury and/or due to scarring from her surgery.  Of course, we also have physical therapy mixed in with that as well.  As you can see, life is never boring for us!  We're just so happy and proud that our girls are extremely well-behaved, so it makes it that much easier on us.  I guess they're used to long drives and many appointments.  I'm sure Kevin Jr. is happy that he is in school so he doesn't have to go to these with us.

We just want to say a Happy (belated) Birthday to our nephew Dustin, who just turned 10, and a Happy Birthday to our nephew Jesse, who turns 21 today!  Watch out!    We're so lucky to be related to such wonderful guys!