The Buckles Family

Formerly Conjoined Twins: Miracle Girls

Updates in 2009


view:  full / summary

So Much Excitement!!

bucklesfamily Posted by bucklesfamily at 10:19 PM on December 23, 2009 Comments comments (3)

Apparently I like to wait until I have way too many events to write about before I even consider posting an update!  Tonight I'm just going to list them, and then I will have to give details at some point within the next few days.


  • Last week we went to Orlando, FL for Taylor's Make A Wish trip.  It was the most WONDERFUL week our family has ever had!!  We stayed at Give Kids The World Village, where we were completely taken care of 24/7.  We were able to go to all of the parks.  I took almost 1,000 photos! 
  • We arrived home just as it started snowing.  We ended up with at least 1 1/2 feet of snow by Sunday morning.  I can't even begin to describe the excitement  felt in this house!
  • Yesterday Taylor was chosen to escort the First Lady of the United States, Michelle Obama, as she visited Children's National Medical Center in Washington, D.C.  She walked with her through the hospital, and she even sat next to her as she read a story to patients and families.  Her daughters were both there, and they brought their dog, Bo.  At the end, our family had the opportunity to have a photograph taken with the First Family (minus President Obama of course).  What an honor!!!!!  You will be able to see photos here:  The Washington Post, Children's website, youtube.  There may be more, but we haven't found them yet.  Let me just say that the First Lady is incredibly kind and very down to earth.  She came and gave us all great big hugs before our picture. 
  • After we left Children's, we went up to Baltimore to visit our wonderful friends at the Ronald McDonald House.  Once again, they have made Christmas possible at our house.  We can't thank them and the many amazing people who donate toys enough for giving our children a beautiful Christmas each year.
  • And today?  Well, today we welcomed a new member into our family.  SOLOMON is home to stay!!!!  Kyria and Terry from Paws4People brought him over this morning, and after doing some cat training (our cat is not thrilled) and answering a "few" questions, they left him in our care for good.  Too much excitement in our house today!  SOLOMON will basically be tethered to me for the next two weeks as we do umbilical cord training, which Erin is not happy about.  She expected him to come here and be HER dog right away, but since I will be his primary until she is ready, he has to be bonded to me first.  The only time he is not with me is at night, when he sleeps with Erin.  It makes life quite interesting! Ha! 
  • To add to our excitement today, we FINALLY decorated our house for Christmas.  We didn't do it before, because we were gone for a week, and we didn't want to leave a live Christmas tree.  Kevin drove all over Timbuktu today looking for a tree.  He did find one, and it's not even a Charlie Brown tree.  Great job sweetheart!  SOLOMON "helped" us decorate as he and our cat had staring contests.

O.k., I'm going to be.  I still haven't quite caught up on sleep, but who needs that, right?!  More to come soon.

Never a Dull Moment

bucklesfamily Posted by bucklesfamily at 01:12 PM on December 09, 2009 Comments comments (7)

I have to tell you about a little incident at our house last night.  After putting the girls to bed, Kevin and I could hear Jade coughing and sniffing through the monitor (yes, we still have monitors in their rooms and probably will until they are teenagers!  We can't hear them with the bedroom doors closed, and they all apparently need some extra attention at night).  Jade has been coughing since September on and off, but mostly on.  Kevin asked me if I had given her some cough medicine before bed, and I told him that I hadn't.  I took some in to her, and she immediately looked extremely worried.  When I asked her what was wrong, she started crying and said that she lost her necklace.  Just to back up for a second, a few years ago Erin and Jade were given these pretty little silver necklaces with very fine chains.  We had left them in the boxes in their drawer, because at the time they were way too young to wear them.  Last night, as I was putting clothes away, Jade discovered one of the boxes and asked if she could have it.  Knowing that she is now responsible enough to have it, I said yes.  Of course, as soon as Erin saw it, she just HAD to have hers as well.  When they went to bed, both girls had their boxes next to them on their night stands.  So, when I went in to give Jade her medicine and she said she lost her necklace, I just figured it was somewhere in her bed or on the floor.  When I asked her where it was, she just cried harder and said it was lost in a place where I would never find it, and she was very scared that I was going to be really mad.  I kind of laughed and said that there was not one place in her room where:  A) I would be mad, and B) I couldn't find it.  She continued to cry harder and kept saying that I was going to be mad.  At that point I just really needed to know where it was, because I couldn't understand her fear.  After much coaxing, Jade finally pointed to her nose.  Instantly I was hit with shock over the fact that she would even DO that!  I mean, seriously, this is a child that NEVER put things in her mouth (or anywhere else) even when she was a baby.  I was trying to fathom what would possess her to do that even while I was searching the bed (not really believing the necklace was in her nose) and telling her calmly that we would get it out.  By this time, Kevin heard our exchange over the monitor and had run in to see what the heck was going on.  He was just as shocked as I was.  Of course, the look on our faces just made Jade cry harder.  I'm sure she was thinking that she was going to have this necklace in her nose forever!  Well, after discussing what we should do, I made had Kevin call the pediatrician to see what his thoughts were.  Seriously, I have called him enough in the middle of the night, I figured that calling at 9:30 wasn't so bad!  Anyway, after Kevin described our situation, I could hear him say, "Well, there's never a dull moment at the Buckles' House!"  I'm not sure if I laughed at the time, but it's really funny now.  He asked if Jade was having trouble breathing, and since she wasn't, he didn't seem quite as worried.  He did say that it would have to come out, but he wanted us to try to get it first.  We couldn't see it in her nose, but he wanted her to try to blow it out.  He told us that if it got to a point where we could see it, we should take her to the E.R. so they could remove it.  If that didn't happen, we would have to take her in to the office in the morning to have an ENT doc get it out.  Again, while all of this is going on, my mind is just trying to process how this could have happened.  Jade is an extremely smart girl, and she has NEVER done anything like this before.  So strange!  To make a long story a bit shorter, I took her into our room so Erin could try to get some sleep.  I had Jade continue to blow out of the nostril where the chain was, hoping it would come out.  She kept saying she could feel it, but she was still crying and she kept sniffing in as well.  I tried to convince her that sniffing was only going against our goal, which made her feel bad again.  She was a wreck!!  EVENTUALLY, Jade was able to blow the necklace out on her own.  We didn't need to go to the E.R. (thankfully), and we all got some sleep.  We did make a point to talk to her about the danger of sticking things in her nose and the bigger danger of not telling us right away.  If I hadn't gone in there to give her medicine, I'm not sure if she would have told us.  She could have eventually aspirated the necklace into her lungs or gotten it lodged somewhere.  I think it sufficiently scared her (and her sisters), and she will never attempt something like this EVER again.  Disaster was averted, a big lesson was learned, and today I can laugh in disbelief at the dumbest thing our daughter has ever done!

Christmas Shopping

bucklesfamily Posted by bucklesfamily at 01:48 PM on December 04, 2009 Comments comments (2)

A few people have asked us about ways in which they could help us with SOLOMON.  I have found a fantastic way to donate to a great cause (not just ours) while doing something that most people love anyway...  SHOPPING!  There is a terrific site called iGive.com that has linked with hundreds (if not thousands) of stores to give a certain percentage of someone's purchase to the chosen cause.  I figured that this is the perfect time of year, because many people have started to do a lot of their Christmas shopping online anyway.  Now you can get all of your shopping done while helping someone else in the process!!!  What could be better than that?!  You could even start your own cause if there is something you need to fundraise for, or you can look through their causes to see who you might want to help.  There are MANY.  It is extremely easy to set up, and they have a toolbar you can download to your computer that automatically recognizes the participating sites and gives you credit for your purchase.  I will post a link to our cause, but if you would like to check out other causes or start your own, just go to iGive.com

 

 iGive.com

 

Check it out and see what you think.  It doesn't hurt to try, and it really could help others! 

 

O.k., I love to post cute things our girls say, and I happen to have one from Erin.  The other night, as we were doing some of her therapy before bed, she turned to me and aske me a question.  She said, "Mom, why do we have a butt?"   Well, what a great question!  My most practical answer was, "so we have something to sit on".  What would you have said?

 

Taylor's Make A Wish trip is quickly approaching, and the excitement is building.  Add that to the excitement of SOLOMON's upcoming transition to our family and it seems we're at a feverpitch.  Well, and not to mention that Christmas will be here in a few weeks.  How do I keep them focused on anything, you might ask.  I'm not quite sure!!!  We're counting down to a lot of events! lol!

 

We hope you all have a wonderful weekend!  Thank you for keeping up with our family!  We can definitely feel your love!

SOLOMON's Arrival...

bucklesfamily Posted by bucklesfamily at 10:22 PM on December 01, 2009 Comments comments (2)

I had a conference call with Kyria and Terry Henry tonight.  They are the executive directors of paws4people.  We finalized our plans and timeline for SOLOMON's transition to our family.  Drumroll please....  SOLOMON will be coming to live with us starting on Wednesday, December 23rd!!!!  What an amazing Christmas present for Erin!!  I can't even begin to explain how excited we are to have him as part of our family.  We want to thank those of you who helped by donating or fundraising.  We still want to help paws4people as much as we can, because there are many more people out there who could use a service dog, especially children.  Remember, most organizations will not give a service dog to a child under the age of 12.  Some set the age at 18, saying that anyone younger could not truly be in charge of the dog.  Well, we've seen it done, and we know Erin will become fully proficient in no time.  Therefore, we need to support this outstanding organization that took a stand for what is right.  Thank you paws4people!!  If any of you would like to donate to a wonderful non-profit organization before the new year, paws4people would be perfect!  Remember, since you are donating to a non-profit org., it is tax deductible!! 


As I look back on SOLOMON's graduation day, I am absolutely grateful for the opportunity to spend time with the many people who have worked so hard to make this happen.  From the people who work at the prison who give full support to the program, to the inmates and their families, to Heidi who runs the program there... far more people than I can personally thank on our website.  I hate to start naming people, because I will inevitably leave someone very important out, but I just need to mention a few more people that have been integral in making this journey a reality.  We finally had the chance to meet the family who donated SOLOMON to the paws4people program, and I have to say that it was a bit overwhelming!  How do you thank someone for a gift of that magnitude?  SOLOMON isn't JUST a dog.  To Erin he will be her best friend, allow her independence, help her gain confidence, facilitate greater mobility, and he will help her achieve dreams she has yet to dream.  For that gift, we are eternally grateful!  Another gift we are thankful for is the gift of friendship.  This journey has allowed us to meet many amazing people, including the families I spoke of in my earlier post.  However, I have also gained a lifelong friend in someone who previously had no ties to the program.  Well over a year ago I was contacted by a woman named Amanda who said she wanted to help.  Even though we had never met, she didn't know our family or Erin, she truly went above and beyond what most people would do for someone they personally knew.  Amanda has come to be a cherished friend to me, and we absolutely adore her family.  Her daughters take the time to write letters, cards, and even send gifts to our girls.  They are all beautiful inside and out.  On the day of graduation, Amanda and her family got up early (really early) and came up to the prison to support us on our special day.  We hope they felt our love and appreciation, even though we weren't able to spend a great deal of time with them.  We are blessed to have them in our lives!!  Thank you Riley family!!


I also want to mention a few of the inmates who worked so hard to get SOLOMON to this point in his training.  They put their hearts and souls into training him, and we have a much better dog for their time and effort.  The gentleman who was the last one to work with SOLOMON spent a lot of time with us after the ceremony telling us all about SOLOMON's likes and dislikes, different things he does, and the best ways to handle him.  It was such useful information, and we could really see how much this man loved our dog.  We are thankful to him and the others, and there are not enough words to express to them our gratitude. 


O.k., you can definitely see where our focus is right now, but it's just because we're so excited... and THANKFUL!!!  However, we do have a few more exciting things happening in the next few weeks as well, so I will do my best to keep you updated about that.  Oh, for those of you who have a facebook account, please click on the link below and vote for paws4people.  I know that we could help them to win.  Come on,  you know you could tell all of your friends, and they could tell all of theirs.  It's a great cause that is (of course) very close to our hearts.  Thank you for taking the time to do this!!


All right, I need to go to bed.  This turned out to be far longer than I had anticipated!  lol!  Before I go, I do need to wish my dad a very Happy Birthday!!  He turned 75 years old today, and he acts like he's 60!  We love you dearly, Dad, and we hope you had a fantastic day!!!

Please vote for paws4people!!!

bucklesfamily Posted by bucklesfamily at 09:17 PM on November 30, 2009 Comments comments (1)

SOLOMON's Graduation

bucklesfamily Posted by bucklesfamily at 10:06 AM on November 30, 2009 Comments comments (0)

First of all, we hope everyone had a wonderful Thanksgiving!!  Ours was absolutely fantastic, and while we are thankful each and every day for our many amazing blessings, it is nice to have a day set aside just to give thanks.  We want you to know that we are truly grateful to have all of you in our lives!  Even if we've never met, we do feel your presence!!


I FINALLY have time to post about SOLOMON's graduation.  For those of you who may have recently found our site, I will explain about our wonderdog, SOLOMON.  He is officially now a certified service dog who is being trained for our daughter, Erin.  We have known SOLOMON since he was just a little puppy, and from the first time he met Erin, there was a bond.  We have photos from their first day together, and in almost every picture, he was resting his head in her lap.  It was way too cute!!  Anyway, SOLOMON has now completed his training, and we went to his graduation ceremonies two weekends ago (has it been that long already?  Gasp!).  He spent the majority of his time being trained in a Federal prison in Hazelton, WV through a program run by the paws4people organization.  It's a fantastic program that teaches the inmates how to train the dogs.  SOLOMON did his training in two places, the Secure Female Facility and the Men's Camp, so there were two different ceremonies since both groups wanted to celebrate with the families.  Eight dogs graduated from the program, three of them going to children.  Our countdown to graduation began about 3 weeks out, and each day Erin told us how many more days until her dog was going to graduate.  She couldn't wait to see him again!  When the day arrived for us to leave for West Virginia, we couldn't get out of the house fast enough for her.  It didn't help that we had to stop by Kevin's work for a retirement ceremony and reception, and then we had to stop a few times on our drive up there because I forgot some things (naturally).  Honestly, I should never forget anything, because Kevin has made a very detailed list of things we need for every trip.  However, apparently I felt like I could remember it all in the midst of packing, getting the girls ready, making sure our cat was fed....   Hmmmm, I guess I better rethink that next time.  I mean, the list was actually printed and sitting right on our bed, begging to be picked up.  We didn't get to our motel until about 9:30 p.m. on that Friday evening, and we had to be up very early the next morning to head up to the prison.  It was a hectic evening, but the girls did great and went to sleep very quickly.  Bright and early Saturday morning we made our way up to the prison (I say up because it is literally at the top of a big hill in the mountains of WV).  It was our third time visiting the women's facility, and I don't get nervous at all anymore.  I did the first time.  It's a long and tedious process getting into the prison (think airport... on steroids), especially since there was such a large group this time.  The inmates put together an outstanding ceremony for all of us, and as always, it was very emotional.  I'm quite sure they get just as much out of training these dogs as we do as the recipients.  I do have to tell you that we saw SOLOMON before entering the prison, and he ran right up to Erin without hesitation.  He had to be taken right in to get ready for graduation, and she spent the remainder of the time asking when she could see him again.  Throughout the ceremony she kept asking if she could go over by him and was disappointed each time I told her she would have to wait.  I think we kept Candace and Paul (paws4people trainers) thoroughly entertained with our exchanges and the looks on Erin's face.  She was ready to break away and go get her dog!  Of course, almost every other dog graduated before SOLOMON, which just made it worse when there were other dogs around us but not hers.  Finally they called our name, and we went up to receive SOLOMON from one of his trainers.  What an exciting moment that we have waited a very long time to arrive!  Now, I do have to say that there was a bit of sadness knowing that we wouldn't really be taking him home with us that day.  We still have to do the transfer training, so we won't have him with us full time until right before Christmas, but we are definitely one step closer.  We did get to take him from the female facility down to the men's camp, and Erin was working on her commands with him.  She is getting to be a pro!!  The ceremony at the camp was not nearly as emotional, but it was just as wonderful.  They presented us with SOLOMON's new vest that says he is certified.  Woohoo!!!  After some cake and lemonade with all of them, we made our way to WVU in Morgantown for a wonderful reception.  Erin was thrilled that SOLOMON got to ride with us there as well.


Now, I have to tell you that one of the best parts of this entire process (other than getting a service dog for Erin) has been meeting some of the most amazing people we could ever meet.  We were able to see the Meek family at the reception.  They are such a wonderful family and have become fantastic friends to us.  We want to thank them for telling us about paws4people in the first place and getting us started on this exciting journey!!  We love you guys!!!  We are also blessed to know everyone who works for paws4people, especially Kyria and Terry Henry, who were the catalyst for all of this.  Thank you for giving our daughter a gift we could never provide!  Thank you for giving her independence and confidence!  Two other families who have brightened our lives are those of the other two recipients of service dogs, Jack and Alex.  Both families are truly amazing, and we just love them dearly.  We hope we will have the opportunity to get together with all of these people in the very near future!


O.k., I have to get ready for work now, but I definitely needed to post about our exciting weekend in West Virginia for SOLOMON's graduation.  Thank you, Kyria, for working so hard to plan and carry out such an amazing weekend!! 


We hope everyone has a fantastic week!!  I'm working on new pictures... coming soon!

Our New Show on TLC

bucklesfamily Posted by bucklesfamily at 02:16 PM on November 12, 2009 Comments comments (4)

We just wanted to give you the details about the show we were involved in that will be airing on Sunday, November 15th.  It will be on at 9 p.m. Eastern time (8 Central), and it is called Conjoined Twins After Separation.  There are two other sets of formerly conjoined twins who were involved, and it should be absolutely fantastic.  We have not had the opportunity to see it yet, so we will be watching it for the first time with all of you.  You'll have to let us know what you think.  You can see the little card we sent out as a reminder over on our other site


If that wasn't exciting enough, we have something even bigger coming up!  Erin's service dog, SOLOMON, will be graduating from his training program very soon!!!  That's all Erin can talk about, and she is literally counting down the days until we see him again!  It's soooo cute!  Even though we won't have him with us full time until right before Christmas, this is a gigantic step for him and for us.  We will start working with him often, and he will start staying with us for short visits soon after Thanksgiving.  We can't wait!!!! 


I posted photos from our latest trip to Kennedy Krieger on our Faith, Hope and Joy blog, and while the videos of Erin are still better, I have to say that the pics are pretty cute.  We were able to meet Miss Maryland during therapy one day, and she even let all three girls try on her crown.  I guess you know who we will be cheering for in January during the Miss America pageant!


I will post more new photos soon.  I have so many on my computer, and it really is difficult finding time to edit them and pick the right ones.  I'll work on it.


I'm home with Jade today.  She has had a fever for the past few days, and she's STILL coughing.  I think it's been over 2 months now.  Crazy!  Believe me, we have taken her to the doc numerous times, and it's just a virus.  Oh, so frustrating!  Anyway, hopefully she'll get better soon.


We hope you're having a great week!  Don't forget about Sunday!

Taylor's Birthday and Fighting Off H1N1

bucklesfamily Posted by bucklesfamily at 07:24 PM on November 05, 2009 Comments comments (3)

First and foremost, we would like to wish our sweet, "baby" girl Taylor a very HAPPY BIRTHDAY!!  She turned 8 years old on Friday.  I know, I can't even believe it either!  She is the most easy-going, sweet tempered, courageous girl we know, and she is wise beyond her years.  We are so proud of her each and every day, and we are absolutely blessed to have her in our lives.  God truly granted us a special gift when he gave us Taylor Joy!!  She was born just 21 minutes shy of Halloween, because I didn't want her to share her birthday with any kind of holiday.  She was two weeks early, and she was a beautiful surprise! 


This year we started out Taylor's birthday in the E.R.  Not a great start to her special day, but true to form, Taylor didn't complain at all.  She had a fever the day before her birthday, so she couldn't go to school.  Thankfully Kevin's mom is in town, so she was able to stay with her for the day so I could actually go to work.  Thank you Jean Jean!!  I'm worried they're going to get a little tired of me missing work!  Anyway, a little after 5 that evening, Taylor started to have intense chest pain, to the point where she was crying hysterically.  I immediately hooked her up to our pulse oximeter (which measures the oxygen saturation in her blood and her heart rate).  Her numbers looked good, except when she would have the pains.  At that point her heart rate would go up, but not to any alarming levels.  I listened to her lungs, and they both sounded clear.  I guess it's a good thing we have so much equipment and knowledge.  We feel prepared for *almost* anything.  I decided to take her to the E.R., along with Jade, while Kevin stayed home with Erin.  Jade has had abdominal pain for 3-4 weeks now, and we are doing everything we can to figure out what is causing it.  We figured we could have them both checked out to avoid another trip in for Jade.  Anyway, after being triaged, we sat in the waiting room for quite a while.  Once we were taken into a room, they ran a few tests on both girls, including blood, urine, and a flu test for Taylor.   Much to my surprise, the flu test came back positive almost immediately!  What?!  We had all three girls vaccinated with the new H1N1 vaccine just the week before!  It had obviously not kicked in yet, and Taylor was exposed before she was protected.  I explained to the doc that Erin was in great danger if she got this flu, and she agreed that we needed to protect her as much as possible.  She prescribed Tamiflu for all three of them, hoping it would help in staving off this illness.  Taylor was quietly reading Harry Potter the entire evening, miserable as she was with her fever.  Taylor was taken for chest x-rays, but everything looked fine with those.  She very patiently waited until Jade was done with all of her tests. 


In the meantime, Jade had to get an I.V., which is usually pretty traumatic for her.  She was extremely brave, though, sitting on my lap while they first inserted the I.V. and then drew blood.  She had to have a CT scan, so she had to drink the contrast solution to help them see all of her organs.  They brought in this GIGANTIC cup, and at first said she had to drink the entire thing!  Seriously, she has never in HER LIFE drank that much in one sitting.  After some careful consideration, they agreed that she only had to drink half of it, which was better but still A LOT!  She was a great sport about it, especially after I told her that the faster she drank it, the faster we could go home.  It was 11 p.m. by this time.  She was finally taken for her CT scan at 11:30, and she was very brave (almost excited).  She knew her sisters have both had these fairly recently.  Jade has had them as well, but she was too young to remember.  Anyway, the scans had to be read at a different hospital, so we didn't get out of there until almost 1 a.m.  The results?  Nothing unusual.  We are still answer-less, and she is still having abdominal pain.  We have now done blood tests (2), urine tests, x-rays, and a CT scan, as well as 3 physical exams by three different docs.  Can you say "Frustrating"?!  We're still working on it!


Anyway, because of the H1N1, all three girls had to stay home until Wednesday.  They were all anxious to get back to school, especially Taylor.  She missed being in school on her birthday, and she was very sad that she couldn't share that with her friends.  She never complained, but we could see it on her face.  Taylor did end up getting a cough, and she had a fever through Monday, but overall the flu didn't hit her too badly.  Luckily Erin and Jade escaped it altogether (knock on wood) this time.  It's not a guarantee that they won't get it at all, but I think they're better protected now, especially since the vaccine has had more time to work.  We will hopefully get the booster in a few weeks, so we will feel a little more confident about their health. 


We celebrated Taylor's birthday on Saturday with her grandma Jean Jean and big brother.  After having cake and then dinner (yes, a little backwards but fun), the girls were able to go out trick or treating for a little while.  We got Taylor a doctor's costume, and it had a mask, so she wasn't spreading germs anywhere.  Around here, everyone puts the candy in the kids' bags, so she never touched anything or anyone.  She was thrilled to be able to go out for a short time, and it was definitely worthwhile.  Erin and Jade had a fantastic time as well.  Jade is no longer scared of the skeleton costumes, which is a relief.  She used to walk around muttering to herself, "it's just a costume, it's just a costume!"  It was very funny, but we didn't want her to be scared.  Erin was a princess this year, and Jade was Scooby Doo.  We recycle costumes around here.  Taylor was Scooby for 2 years in a row, and this was Jade's second year as him as well.  We certainly get our money's worth!  Erin wore a princess dress we've had in their dress-up box, and she loved it.  So did we!  I'll try to get the pictures up soon.


Everyone is finally back in school, and I am back at work.  What a relief!!  The wonderful and amazing people I work for are allowing me to work full days in order to make up for the time I missed.  I just need to reiterate again just how much we love the school and everyone in it!!  I am blessed to be a part of such an outstanding faculty and staff!! 


I have two extremely important posts that I need to write.  Hopefully I will get time soon.  The first post is about our experiences in Baltimore at Kennedy Krieger.  I'm not sure there are even words to express how amazing it was!  The second post is about Erin's service dog, SOLOMON.  We recently were able to spend three days in a row with him, and it was fantastic!!  Erin's excitement about him doubles, triples and quadruples each time we see him.  He will be graduating on November 14th, and we should have him at home with us full time by Christmas!  What a WONDERFUL Christmas present!!!!  We want to thank Terry for bringing him to us each of those three days and for so patiently working with me to teach me how to handle SOLOMON.  We all adore the dog (and Terry too), and we can't believe he's almost ours!  Yay!! 


O.k., more on those two things later.  I have to get our girls ready for bed.  We hope you're having a great week!!  We want to thank everyone for taking the time to stop in and check on us.  Thank you for the wonderful, encouraging comments, and thank you, thank you, thank you for watching Erin's videos on youtube. 


Oh, one last thing:  the new show we are involved in will be airing on TLC on the evening of Sunday, November 15th.  I don't have a time yet, but as soon as we know, I will post it here.  It is about formerly conjoined twins, and we will be in it with 2 other families.  It should be wonderful, and we can't wait to see it!  We want to thank Figure 8 Films for being so great, and for truly caring about our girls!


O.k. now I'm going!  Take care!

An AMAZING week

bucklesfamily Posted by bucklesfamily at 10:48 AM on October 26, 2009 Comments comments (8)

First of all, I just wanted to let you know that everyone is doing well.  O.k., well Jade has something going on with her stomach (pain for over a week and a fever today), but no one is REALLY sick (we hope).


The reason I haven't posted updates this time is because we spent all of last week in Baltimore at the Kennedy Krieger Institute.  Erin and Taylor had physical therapy again, and they did fantastic!  In fact, Erin was downright AMAZING!!  I don't have time to write a long update right now, because I have to get ready for work, but I wll post links to two videos I took of Erin on Friday.  You're not going to believe it!  We have a LOT of work ahead of us, but we are definitely on the right track.  O.k., check these out:


Erin walking with braces and no e-stim


Erin walking with just e-stim on her quads and no braces


She is actually able to step forward with her legs.  Her hip flexors are starting to work!!  Her left leg is much better than her right leg at the moment, but we will keep working on it.  Her muscles are weak, but we will be doing a ton of electrical stimulation to build those up.  She is a long way from walking on her own, but we are beyond thrilled that she can voluntarily move those muscles at all.  THANK YOU Miss Robin (and Mr. Scott and Miss Rachel)  for working so hard to get her to this point!!!


O.K., have a great day!  I need to go, but I will update soon to tell you about our week. 

Pneumonia AGAIN

bucklesfamily Posted by bucklesfamily at 10:38 AM on October 15, 2009 Comments comments (3)

I know, it seems like I dropped off the face of the earth.  Well, for the past week, it has almost felt like it.  I'll try to start at what may be the beginning of our latest craziness.


Two weeks ago today, Erin came home from school with a slight fever.  Now, I wasn't completely surprised, because Jade had been coughing and sporting a low-grade fever for 2 1/2 weeks at that point.  I was not concerned about Erin then, because she had no other symptoms.  We were very vigilant about her chest P.T., cough assist, and nebulizer treatments every day, and she was showing no other signs of illness.  On Friday (Oct. 2) Jade wasn't feeling well, but she had a special event at school to attend.  She was chosen as student of the month for September, and there was a breakfast and awards ceremony for the special students at school that morning.  Way to go Jade!!!!  I told her that we would go to that, and if she still felt sick afterwards, we could go home.  I ended up just staying at school, in their classroom, the rest of the morning.  I had to work at noon anyway, so it would have been silly to drive home.  Jade was a bit clingy, but I was really trying to keep her in school for the day.  I knew she didn't feel great, but she didn't have a fever.  When it was time to take Erin to the nurse to cath her, Jade really wanted to go with us to have her temperature taken.  I thought it was a good idea, because then I could show her she didn't have a fever.  When we arrived at the nurse's office, the nurse took Jade's temp.  It was normal, and I think she was a bit disappointed.  Erin really wanted the nurse to take her temperature as well.  I mean, you can't do something for one and not do it for the other.  Such is the life with twins (or siblings of any age for that matter).  The nurse took Erin's temperature just for "fun", and we were all surprised when she was the one with the fever.  At that time it was 100.7.  She told me to go cath her, and she would retake it when we were done.  Maybe it was just a fluke.  I mean, Erin was acting completely normal and said she felt fine.  Less than 10 minutes later the nurse took her temperature again, and it was even higher (101.4).  We had no choice at that point but to go home.  They aren't taking any chances at schools right now (for great reason).  Erin's teacher, Mrs. B, couldn't believe it when I told her we had to go.  No one would have believed that Erin had a fever if I had not seen it with my own eyes.  Anyway, when we arrived home, that is when Erin started feeling the effects.  She wanted to lie down in bed, which she NEVER wants to do if she is feeling o.k.  She stayed in bed all afternoon, only getting up when we went to get Taylor from school.  Yes, Jade came home with us at noon.  Over the weekend, Erin was up and down with a very low-grade fever, never above 101.  She still wasn't displaying any other symptoms.  I decided to send her to school on Monday, because her temp was only 99 when she woke up.  By the end of the day when we got home, her temperature was 102.2, and I became slightly worried.  Mrs. B asked me at what point do I get really worried, and I explained that I wasn't even close yet.  I mean, we literally have so many pieces of medical equipment at our house it's like a small clinic.  Here is what we have at our immediate disposal:  equipment for chest P.T., cough assist device, nubulizer, pulse oximeter machine, suction device, blood pressure device, and my very own stethescope.  We are very well equiped to monitor our children's health.  When Mrs. B posed the question, I was very confident (even a little cocky) in my answer.  I was certain we were not on the same path as we went down in June.  I mean, gee, the symptoms were not even close, right?  I decided to keep Erin at home on Tuesday, just to be safe.  I thought that with a little rest she would be as good as new on Wednesday.  Hmmmm, I might have been slightly off.  She woke up with a temperature of 100.something and she had a bit of a stuffy nose.  Throughout the day, Erin started to go downhill.  Sometime in the afternoon, Erin said, "Mommy, it's a good thing I didn't go to school today.  I don't feel good at all."  By that evening, she was a little junky sounding, but I couldn't hear it in her chest... yet.  When Erin went to bed, her temp was only 100.7.  I gave her some Motrin, and at the last minute I decided to hook her up to the pulse oximeter.  For those of you who do not have the time to check the link, a pulse oximeter is a device that measures the oxygen saturation in your blood.  Many of you have had this done if you've gone to the doctor or been to the hospital for any reason.  They usually put something on your finger.  Most people have a steady oxygen saturation of 99-100%.  Our docs have said that anything below 92-94 starts to get concerning.  When Erin's alarms went off on that Tuesday night (well, 3:30 a.m.), I ran in to find her saturation level at 84.  Not only that, but her heart rate was in the 160's (normal is 75-100), her respiratory rate was 63 (normal is below 25), and her temperature was 104.5.  OMGoodness!!!  Ummm, where is that panic button?!  I immediately gave her some more Motrin and brought her into my room for a breathing treatment.  I listened to her chest, and I still did not hear any of the usual crackles/wheezes brought on by pneumonia.  Of course, I am not even close to being a doctor, so really that doesn't even count.  I made a frantic call to Erin's pulmonologist, knowing full well that she wouldn't get the message for another 4 hours at least.  I also made another frantic call.  Yes folks, Kevin was out of town when this happened.  He felt completely helpless as I asked him what I should do.  It was a miserable situation for everyone.  We knew I had to take Erin to the hospital; that was a given.  Our dilemma was whether I should wait or take her immediately.  At 4:30 when I took her temperature again, it had actually gone up to 104.8.  HELP!  Thankfully Kevin stayed on the phone with me the entire time, and we decided I had to leave soon.  I called my friend Michelle, who, to her great credit, answered the phone with a friendly, "Good Morning!" (at about 4:50 a.m.).  She readily agreed to come over to get Taylor and Jade ready for school and take them for me.  She said she would be happy to do whatever we needed.  Now, keep in mind that this meant she wasn't able to get her own daughter ready for school that morning.  Michelle, you're an absolute LIFESAVER!!!  Thank you!


By the time I had Erin ready to go and we were in the van, it was 5:50 a.m.  I KNEW if I took her to our local hospital, they would want to fly her to Children's again.  I also knew that I could get her there faster by driving (by the time the local docs checked her out, they called Children's Transport team, and they flew out from D.C. it would be late morning at least).  At this point, if any of you know D.C. traffic, I had one option:  I had to pick up a slug.  For everyone who doesn't know what this is, I know that sounds crazy.  The type of slug I'm talking about is not the one that's slimy and crawls slowly across the ground.  A slug, in this case, is a person who parks their own vehicle in a commuter parking lot and then catches a ride into Washington D.C. with someone else who is driving.  Our HOV lanes in this area require at least 3 people in a vehicle in order to use them.  In MN we called this the Sane Lane.  Anyway, by using the HOV lane, you can literally save yourself hours of commuting time each day.  I had NEVER picked up a slug before, and I was quite nervous to do this, but I knew it was my only option.  I had to get Erin to the hospital quickly, and since Children's is in the middle of D.C., using the HOV lanes was the only way to get there.  So, I pulled up to the line of people and picked up a person headed for the Pentagon.  I told him right off the bat that this was my first time picking up a slug, which probably made him more than a little nervous.  Not to mention that I had my little girl in back hooked up to a pulse oximeter.  Kevin, who does this all the time, said they usually sleep the entire way in, but this gentleman stayed awake.  Thankfully he helped direct me to where I needed to drop him off, and he told me how to get back on the interstate.  We made it to Children's Hospital by 7:15, which is quite amazing considering morning traffic into Washington D.C.


Here is what happened when we got to the hospital:

  • Due to her breathing, Erin was immediately taken back to a room when we arrived in the E.R.
  • She was given a breathing treatment, and the tell-tale crackling sound associated with pneumonia was detected in her lungs.
  • She was taken for a chest x-ray
  • The x-ray confirmed pneumonia in her left lung.  It was diffuse, which usually indicates that it is viral.
  • Test for H1N1, and I.V. is started.
  • Erin was admitted to the hospital and taken to the Respiratory Care Unit (RCU).  She was put on oxygen to assist her breathing.  She was not allowed to eat or drink anything, because she was breathing too fast.  They were worried she would aspirate it and choke.
  • After 10 hours of really struggling, 2 consults with PICU doctors, and much worrying later, Erin was taken to the Pediatric Intensive Care Unit for closer monitoring.
  • She stayed in the PICU for the next 24 hours, still on oxygen.
  • Results for H1N1 test came back negative.
  • Finally moved back to RCU.  Her oxygen saturation levels began to drop again and respiratory rate increased. 
  • Friday she was on and off oxygen throughout the day/night.
  • On Saturday morning, the monitor was not detecting her breathing/heart rate correctly, so it was literally alarming every 30 seconds.  I had to get up to turn it off each time.  I finally asked the nurse to change the settings, but she had to ask the doctor.  The doctor didn't want to change the settings, so I asked her to see if the doctor would like to come in and turn off the alarm each time it beeped.  He came in a short time later and took her off the monitor all together.  He put in the order to spot check her vitals every few hours.
  • Erin was taken off IV fluids to see how she handled eating and drinking. 
  • Mrs. B, Erin's teacher, came up to visit.  She brought Taylor, Jade, and her daughter Jesse.  It was so wonderful for her to do that, and we had a really special visit.  I really missed my girls!  Erin loved the company!  THANK YOU, Mrs. B!!!
  • Erin was put back on I.V. fluids Saturday evening, because she didn't do as well as they had hoped.
  • On Sunday morning, Erin was taken off the IV again.  This time she did better.  Her incentive was the fact she was told she could go home if she would eat and drink well.
  • Erin was discharged on Sunday afternoon (late).
  • We went home to sleep in our own beds, but Erin still wasn't doing great.
  • She woke up on Monday with another fever, which made its way up to 102.3.  Ughhh!
  • Since it was a holiday, I wasn't able to reach her pediatrician until that evening.  He wanted us to be seen on Tuesday morning.
  • We went to see Erin's pulmonologist on Tuesday, who thought she sounded like her lungs were filled with water.  She ordered another chest x-ray.
  • The chest x-ray didn't look as bad as she thought it would, so with a list of instructions, we were able to come back home.  We were very close to re-admission.
  • Over the next few days, Erin slowly began to improve.  She is now doing pretty well, and we feel like we're on the right track.  Phew!

During most of this, Kevin was trying to get back home.  Thankfully my friends Michelle and Justin were able to take care of Taylor and Jade from Wednesday through Friday.  They had a wonderful time playing with Katelyn and going on outings with their family.  You guys are the BEST!  On Friday evening, the girls went to stay with Kevin's sister where they had a fantastic time playing with their cousins, had a visit from K.J., and enjoyed being with their aunt, uncle and grandma.  We're blessed to have such special people around us to help out.  We were all relieved to finally get home on Sunday, as it was extremely stressful for everyone involved.  Kevin was able to make it home on Monday, and I can't tell you how wonderful it was to see him.  Talk about a sight for sore eyes!  He felt horrible for not being able to come home sooner, but there wasn't much he could do.  We're just happy to have everyone home together now.  We want to thank everyone who helped us out, and we want to thank those who said lots of prayers and left messages of encouragement.  I can't tell you how great it feels to know there are so many people out there who are willing to support us when we need it. 


Thank you again for stopping by to check on us, even after my long absence!  I need to go and give Erin a breathing treatment right now.  Have a great night!


School, work, and sick kids

bucklesfamily Posted by bucklesfamily at 11:37 PM on September 23, 2009 Comments comments (0)

O.k., I really am going to try to do a quick update.  Maybe a list would work best.  Here goes:


1.  Erin is still slowly recovering.  She sounds much better, but she's not 100% yet.


2.  Jade now sounds like Erin did, although she has a much stronger cough than her twin.  She's had a fever for the past 2 days.


3.  I started my new job last week.  I am working part time as a paraprofessional with the Math Specialist at the girls' school.  While working has added quite a bit more stress to our lives, I am thrilled to be at their school, and I'm even happier to be contributing (a very small amount) to our finances.  I love the staff and administration at the school, and I feel very lucky to join their ranks.


4.  We took Erin to the Pulmonologist last week.  Together we came up with a good plan for Erin, and we hope this will keep her out of trouble in the future.


5.  We all got our flu shots.  Taylor was a cool cat, Jade was not thrilled, and Erin was actually excited about the fact that she couldn't feel the injection in her leg. 


6.  School is going wonderfully.  All three girls love it, and they're doing extremely well. 


7.  K.J. is doing great!  He just got a fantastic grade on an English paper, and we're so proud of him!


8.  We will get to see SOLOMON on October 8th, when he will meet us at school for the first time (with students present). 


9.  SOLOMON'S graduation date is November 14th!!  We can't wait!!!


10.  Our Make A Wish trip is planned and booked.  A real vacation with the entire family!!!  Yay!


O.k., I also have to tell you about two amusing things that have happened in the past few days.  Yesterday I was helping in Erin and Jade's classroom at the end of the day.  A little boy was wandering around looking for something.  Here is our exchange:


Me:  Hey N!  What are you looking for?


N:  My water bottle.


Me:  Well, I'll help you look for it.  What does it look like?


N:  Ummm, it's a bottle... and it has water in it.


Me:  Oh, o.k. good.  That was helpful.  Let's go find it!


I had an extremely difficult time not lauging out loud at that one, but he was just so serious.


This one was not amusing when it happened, but I can see the humor in it now.  Jade and I went to get gas today in our van.  I put the nozzle in the tank, started pumping and set the lever so it would pump and shut off by itself.  I was standing right next to it as itpumped, but I was not paying attention to it at all.  All of a sudden gas was gushing out and spraying everywhere, and I was scrambling to shut the pump off.  I was angry that I was covered in gas, but I was also angry at the money I just wasted on the gas all over the van, ground and me.  I grabbed Jade and we went into the station to complain about the malfunctioning pump.  I mean, it's SUPPOSED to turn off by itself!  As I explained to the MAN inside, he proceeded to tell me that the nozzle has two sensors.  He calmly explained, as if he was talking to Jade, that I must not have had the nozzle all the way inside the tank.  O.k., right, because it was, of course, my very FIRST time pumping gas!!  He came out to look at all of the gas on the ground and apologized (although you could tell he didn't really mean it, as he truly thought it was my fault). 


All right, I'm off to bed.  Oh, check out the new photos I posted on our other site.  These are from our trip to the beach.  I also posted pics from the first day of school.  Another cool thing you should check out is another video about our family on the Baltimore Ronald McDonald House website


Good night!

First Week of School

bucklesfamily Posted by bucklesfamily at 07:42 PM on September 14, 2009 Comments comments (3)

The first week of school was an absolute success!!  The girls adore their teachers (so do we!), and we know they're going to have a wonderful year.  Taylor couldn't be happier in Mrs. S's class, and we feel like it's a great fit.  She has a few friends in there, but most of her best friends from last year are in different classes (except for Isaac).  That's o.k., it seems, because they just burn up the phone lines talking to each other after school and on the weekends!  I don't remember ever talking on the phone in 2nd grade!  Can you say social butterfly?!  She is also making some great new friends this year, which is fantastic. 


Erin and Jade couldn't wait for the first day of school.  We were able to meet their teacher the week before school started (we wanted them to be in the same class this year), and we were immediately impressed.  Mrs. B is an outstanding teacher with the greatest personality!  We feel truly blessed that our girls were placed in her class.  I was excited when she asked me if I would like to help out in the classroom... OF COURSE I would!  I was in there helping her and all of the students (not just Erin and Jade), and it was so much fun to get to know everyone.  They have a great class!  I helped out all week, and I found myself wishing I could get a job working in their classroom full-time, but since there isn't an opening for that, I am getting a job at their school doing something else!  Yay!  I will be starting on Wednesday (working part-time), and I am so excited.  I will still be able to volunteer in the girls' classrooms in the mornings and actually work (earning money) in the afternoons.  Life is good!  It will be a relief to be up at the school in case something happens with the girls (especially Erin).  Did I mention that I will actually have an income?!  O.k., while it won't be a lot, it will be something, and right now any amount will help.  I wasn't sure I would be able to work this year, because we still have to go to Baltimore for a week at a time for therapy, and we will also miss a week for Taylor's Make A Wish trip.  When I was talking to the principal about it, she was not concerned.  In her words, she said, "Life happens".  Wow, that's amazing!  Well, she really is an amazing and wonderful person, and I couldn't be happier that we chose this school.  Thank you, K!


I mentioned in my last post that Erin had some chest congestion we were trying to combat.  Well, everything we were doing didn't seem good enough, because she continued to get worse last week.  We were doing nebulizer treatments and inhalers several times each day, and we were using our cough assist machine to try to help Erin have a more effective cough.  None of it seemed to be working, and her little body was getting worn down.  By Friday I knew we were in for a hospital visit, and of course it would come over the weekend.  She hadn't had a fever up to that point, but I just had a feeling it was coming.  In the early hours of Saturday morning, Erin spiked a fever of 103 degrees, and she was struggling to breath well.  Her respiratory rate was up, which meant her heart rate was up as well.  Kevin and I were both able to take her to the hospital this time (thank you K.J. for taking care of Taylor and Jade), and we went directly to Children's, bypassing the possibility of another helicopter ride.  Erin's temperature was back up to 103 by the time we got to the hospital, her respiratory rate was between 70 and 90 (breaths per minute), and her heart rate topped out in the 190's.  O.k., just to take a moment to help you all understand:  count how many breaths you take in a minute.  Now try to take 90 breaths in one minute.  Imagine what it would feel like with a ton of junk in your chest.  That's how Erin was.  My heart rate goes up just thinking about it.  While we were being triaged, they wrote down "Respiratory Distress" on her chart -- just giving it that title made me feel distressed!  We thought for sure that she was going to be admitted again, just like the situation in June.  After Motrin, a chest x-ray, two breathing treatments (the second one was high dose), a dose of oral steroids, a urinalysis (to make sure she didn't have a UTI), a test for H1N1, a prescription for antibiotics and another dose of steroids, and a lot of observation, Erin was finally allowed to go home.  She was breathing better at that point, her oxygen saturation levels were fairly good, her heart rate and respiratory rates had come down a little, and listening to her breath didn't cause us to fear for her life.  We were exhausted but relieved that she seemed to be on the right track.  We made it home at about 11:45 p.m.  Whew!  I really dislike days like those!  Anyway, Erin seems to be holding steady.  She is still exhausted, and her body is still worn out.  She tried to go to school for a little while today, but she didn't do very well.  We are scheduled to see a pulmonologist very soon to discuss this situation and come up with a plan on how to get a handle on these new issues.  I'm not going to lie, we're pretty concerned about the upcoming winter and flu season.  It could be bad.  While we can't keep our children in a bubble, sometimes I'd really like to!


I need to get some sleep now, since I haven't gotten much lately.  We hope you all have a fantastic week!  Thank you for sticking with us and continuing to check in on our family.  It means more to us than you could ever know!


Oh, really quick... I posted a new video of Erin on youtube.  She has mastered the ability to transfer independently, and I caught one of her first transfers on video.  It was from my phone, so the quality isn't the best, but you can definitely see how proud she is.  Please take a minute to check it out.

Beach fun

bucklesfamily Posted by bucklesfamily at 12:37 PM on September 02, 2009 Comments comments (1)

We had the most amazing week at the beach!  EVER!!  We would like to thank Terry and Ed from the bottom of our hearts for so graciously allowing us to use their wonderful house near the beach!  We could never truly express our immense gratitude for their fantastic gift, and we hope they understand how much it means to us.


All three girls were enthralled with the ocean.  They had so much fun running and jumping in the waves (well, I was doing the running and jumping with Erin in my arms, but she still loved it).  Taylor kept wanting to go swimming in the ocean and couldn't understand why I wouldn't let her.  Well, she didn't understand until she had been knocked over by a few waves and struggled to keep her footing with all of the others.  Maybe when she's older and stronger.  They were all content to play for hours in the water each day.  In the mid-afternoon, we headed back to the house for a break, and then we went to the pool to play for a few more hours.  It was perfect.  Seriously.  I thought they might be more interested in building sand castles, but they are all like me and wanted to be in the water instead.  We did bring at least half of the sand from the beach home with us each day, and our van turned into a sandbox, but what could be more fun than that?!  O.k., I can think of a few things, but we really did have the best time!  Oh, yes of course I took a few hundred pictures, and I will add them to the other photos I need to post.  Once the girls are in school, I'll just have to take a morning and post pictures. 


Anyway, all of the kids start school on the 8th.  The girls are thrilled and can't wait to start.  I think K.J. is excited to be senior (yes, I did say SENIOR), and he's probably even more excited to be done with this year.  I used to teach seniors, and I swear they came in on the first day of school ready to be done.  It's an exciting year for everyone.  We can't believe Erin and Jade are going to be in Kindergarten.  I think most parents who have children with medical problems, especially those who find out while they're still in the womb, never allow themselves to imagine the future.  It's difficult to picture your child starting school when you don't even know if they are going to survive birth.  Each new milestone is another miracle to us, and we're absolutely blessed to experience these with our daughters.  Taylor can't wait to start 2nd grade, and more importantly (to her), she can't wait to see her friends!  It should be a fun and exciting year!


Well, along with the good sometimes comes the bad.  Erin has gotten increasingly junky in her chest this week, and we are doing everything possible to prevent it from getting worse.  We are doing nebulizer treatments with her, inhalers, the cough assist device, and we're waiting for an appointment to see a pulmonologist.  She was originally scheduled to be seen in late October (the appointment was made in June, and that was the EARLIEST she could be seen - What??).  Anyway, her pediatrician is working on it right now.  She needs to be seen before flu season begins, because it's supposed to be pretty bad this year.  If she got sick in June with pneumonia, what is going to happen this winter?  We need to have a plan in place now. 


O.k., so as if that hasn't been enough fun this week, Taylor has been struggling with lower abdominal pain for the past few days.  She has not been eating or sleeping (which means we're not either), and she has a few other symptoms that had us concerned.  I spoke to her pediatrician yesterday, and he wanted us to bring her in today.  Well, her pain increased last night, and we felt we just couldn't wait.  I took her to the E.R. at 9 p.m. and after many tests, we arrived home at about 2 a.m.  They checked urine, blood, and did a CT scan with contrast.  It was concluded that Taylor has a bladder infection, or should I say a breakthrough bladder infection because she is already on low dose antibiotics in order to prevent UTI's.  This must be some nasty bacteria!  I guess we will see when it grows out in culture, but for now she is on a stronger antibiotic and Tylenol 3 for pain.  Poor girl!  She was such a trooper, though, and so very brave.   We hope she recovers quickly!


I need to go for now, but hopefully I can update again soon.  My sister leaves for Iraq again today.  This time she is moving there indefinitely, and we're not sure when we'll see her next.  Please keep her in your thoughts and prayers.


Have a great Wednesday!



Conjoined Twins Day

bucklesfamily Posted by bucklesfamily at 03:31 PM on August 21, 2009 Comments comments (1)

Today is Conjoined Twins Day.  It is a day to celebrate and remember all conjoined twins.  Most people don't have any kind of understanding of what it means to be given the news that the beautiful, precious babies you are carrying are conjoined.  They don't know the instant fear that grips your heart, and they can't comprehend the worry that is a constant companion throughout each day of your pregnancy.  Did you know that only 1 in 200,000 LIVE births is a set of conjoined twins (most sets of conjoined twins don't make it to birth).  Of those that are born alive, two-thirds of them don't make it past the first 24 hours.  Of the sets that survive past the first 24 hours, only a quarter of them will make it to separation surgery and beyond.  A very small number of conjoined twins survive but cannot be separated, and they live their lives connected to their twin.  When you look at those statistics, the fact that our girls are still with us is an absolute miracle!  We take this day to remember all of the amazing babies who are no longer in the arms of their parents.  These families will always ache for their children, but they are forever thankful for the time they were given with their children, whether it was just the pregnancy, or if they had the opportunity to hold them for minutes, hours, or even a few days.  Our thoughts and prayers are always with these amazing families but especially today.  We also take today to celebrate the few sets of twins who do survive.  We are thankful for the blessing, and we want to share that blessing with you.  It is only through God's Grace that these children are here, and we know that they are here to teach us something, just as the other sets had something to teach us before going to be with Him.  We hope you take some time today to tell someone else about conjoined twins.  Please remember all of the families who miss their children each minute of every day.  It is agony to lose one child, but they have lost two children at the same time.  We also want to thank all of you for your continued support throughout our journey!  We could never truly express our tremendous gratitude for this opportunity to have you in our lives, even if it is only through our website.  Thank you from the bottom of our hearts!  For those of you who would like to participate in this day, we encourage you to release balloons in remembrance of all of the babies with wings.  Our girls love to send balloons to the babies in Heaven!  If you do release balloons, take pictures and send them to us.  We will post them on our site for everyone to see!


We had a very exciting event this morning that we would like to share.  I've mentioned before that Keira, the 14 year old girl from Canada, was here visiting us.  Last year she decided she wanted to raise money to donate for SOLOMON.  She held raffles, donated her babysitting money, sold her Irish dancing shoes, had garage sales....  Did I mention that she was only 13 years old when she did all of that?!  When she first contacted us and said she wanted to raise money, I thought she would send a few dollars.  Keira raised over $3,000 (U.S.) to donate!!  Because she worked so hard, and she is such a remarkable young girl, her mom brought her here to give us the money in person.  And because we were so amazed by her, we wanted her to be honored in a special way.  She doesn't quite realize what an outstanding thing she has done, but all of the adults know just how fantastic this really is.  After talking to Terry Henry from paws4people, he came up with something that seemed very fitting.  I definitely wanted her to be able to meet SOLOMON and to see the special bond between Erin and her dog.  I felt it was important for Keira to see how all of her hard work would help our little girl.   Paws4people arranged for the presentation of Keira's donation to take place at the Canadian Embassy in Washington D.C.  It was very exciting to go to the Embassy (most of us have never been to an Embassy before), and we were thrilled that they were willing to do this for Keira.  The Canadian Broadcasting Company (CBC) was there to film everything, and they interviewed everyone afterwards.  Keira was quite nervous once she was told she would have to speak in front of everyone AND a camera, but she did an absolutely beautiful job.  I got up to speak after her, and I was emotional (of course).  O.k., so it's not difficult to get me choked up, but this was truly something special for our family, and I had a hard time holding back the tears.  Keira presented the money (she had all of it in cash) to Erin.  When Erin peeked into the envelope, the look on her face was priceless!  She actually really wanted to keep the envelope, so Kevin had to ask someone at the Embassy for another one so we could give the money to paws4people.  We will put the one from Keira into Erin's scrapbook so she can keep it forever!  After the presentation, we were able to take pictures with everyone.  We even went outside to this beautiful area on the roof of the Embassy.  It had an amazing view of the U.S. Capitol building.  We were able to take some photos with that in the background.  Too cool.  For the girls, the best parts of today were playing with Keira again and hanging out with SOLOMON.  I guess you can't ask for much more than that!  Keira is absolutely the sweetest girl we've ever met, and we know her mom is extremely proud of her.  We are blessed to have them in our lives now, and we know we have forged a lifelong friendship.  Unfortunately, for those of you who have ever been to D.C. in the summer, you know that it was extremely hot and terribly humid today.  We went outside after the event to play in a little park, but Erin quickly became overheated.  She does not tolerate the heat well at all.  Because of her spinal cord injury, Erin cannot regulate her body temperature and she always overheats quickly.  While our girls love to be outside, it is just not possible to do that here for any length of time in the summer.  Also, we knew we would have to battle traffic on the way home, which could take several hours on a Friday.  We live along one of the worst traffic corridors in the country, and on Fridays in the summer everyone heads out to the beaches, which just happens to be the same interstate we travel.  Lovely!  We very sadly said goodbye to Keira and Joan, hoping we can see them again soon.  We are so thankful for what Keira has done for Erin, and she will be in our hearts forever.  She is an amazing young girl who is a shining example for people of all ages.  She has shown us that you can accomplish anything you put your mind to.  Thank you Keira!!!

SOLOMON, filming, and other great stuff

bucklesfamily Posted by bucklesfamily at 10:33 PM on August 20, 2009 Comments comments (0)

Oh, we have been soooooo busy!  I can't even catch my breath, it's been such a whirlwind, especially these past few days.  It's getting late, and I'm pretty tired, so I'll just do a quick update to give you the rundown.


Yesterday we had the opportunity to meet a 14 year old girl named Keira and her mom Joan.  They are from Canada.  Keira has a keen interest in conjoined twins, and she actually decided to raise money over this past year in order to help donate money for SOLOMON.  For those of you who may not know, SOLOMON is the service dog (in training) who will soon become Erin's constant companion.  Anyway, Keira is such an amazing girl, and she did such an outstanding job with her fundraisers, that her mom decided to bring her to the U.S. this summer to meet us and the Herrin family.  We are absolutely honored that Keira would do something so very special for us, and we were blessed to spend the afternoon with them yesterday.  She is such a sweet girl, and our girls absolutely adored her!  Jade decided that she is her very best friend, and Erin said that yesterday was "the best day EVER!".  We will also get to see her tomorrow, so you know that we are looking forward to that as well.


Today we spent the ENTIRE day being filmed for the new documentary for TLC.  This one is about the lives of formerly conjoined twins.  There are two other families involved, although we haven't gotten to meet either one.  As of right now, it is set to air on November 22nd.  We will remind you as the date approaches, and we will also let you know if it changes (as they often do).  The best part about our day was the fact that we were able to spend the first half with SOLOMON, Terry, and Kyria (from paws4people).  Erin was ecstatic to see SOLOMON, although she had a hard time warming up in front of the camera.  Eventually she overcame her shyness, and she gave some great commands, which SOLOMON obeyed.  It was exciting to see, and Terry and Kyria were quite pleased with her progress.  We even took him up to the girls' school to walk around.  This gave him the opportunity to get used to the environment without the chaos of students around.  Once school starts we will take him up again, as he needs to get accustomed to the noise and constant activity of a kindergarten classroom.  Everyone at the school was extremely accommodating and did everything possible to make our visit go smoothly.  The principal is wonderful, and we just love her!  We want to thank everyone there for all of your help.  As SOLOMON'S transition time nears, we are all very excited.  The only member of our family who is not the least bit excited is our cat, Ninja!  SOLOMON was very interested in him, but he wanted NO part of it.  He actually hissed at the dog.  Poor thing!  I think it's going to take a while for them to get used to each other.  Anyway, the girls thought it was hilarious.  Oh, we also got to play with the two new puppies Kyria just got for the program.  I won't tell you their names yet, because Kyria hasn't revealed them to the public. However, I can tell you that they are absolutely adorable, and we all fell in love with them!!  Once I have time to post pictures, I'll upload some from today.


Tomorrow is Conjoined Twins Day.  Mark it on your calenders!  On this day each year we remember all of the sets of conjoined twins who don't survive.  We think about their families and the heartache they experience.  We also celebrate the conjoined twins who do survive.  Each set, whether they have feet or wings, are absolute miracles, and we are blessed to be a part of this bigger "family".  If you would like to celebrate it with us, we always release balloons for "all the babies in heaven" (as our girls always say).  If you do a balloon release, take some pictures and send them to us.  I will try to post them (along with ours) on our website. 


O.k., I have to go.  We have an exciting day tomorrow, and I am exhausted from today.  We hope you're having a great week!

They say the cutest things!

bucklesfamily Posted by bucklesfamily at 03:06 PM on August 09, 2009 Comments comments (1)

Jade and Erin usually come up with the cutest things when they are talking, and they're not even trying to be funny.  Here are a few of my favorites (Jade has more of them, I'm not sure why.  Maybe it's because she is constantly talking!)


Jade:

  • Naked Feet (bare feet)
  • Long-legged Daddy (Daddy long legs spider)
  • Iceberg (ice cube)
  • Bunder (Thunder -- unfortunately she doesn't say this anymore.  I wish she did)
  • Yesterday she asked Taylor if she could tell her a secret.  She then told Taylor that "this time it won't be in Japanese".

Erin:

  • Cabinet (cabin).  We all loved this one.  In fact, we called it the cabinet the entire time we were there.


Kevin and I are constantly saying that we need to write down the funny things they say right after it happens, because we usually forget what it was.  Maybe we need to keep a notebook just for that.  I used to write Taylor's down, and I love looking back at the things she said.

Busy August

bucklesfamily Posted by bucklesfamily at 10:28 AM on August 08, 2009 Comments comments (0)

I've just realized that this month is going to FLY by.  We have quite a few things packed into August, and it feels like September is going to be here before we know it.  I'm definitely not complaining, because most of these "things" are exciting or fun-filled, but it also means that I only have my girls at home with me full time for one more month.   Yes, school starts here in Virginia exactly one month from today.  Taylor and Erin are extremely excited, and I think Jade would be just as happy staying home with me.  Yes, we're still dealing with her separation anxiety, but hopefully she can overcome it soon.  I think she'll be thrilled once we meet her teacher and see her classroom.  Not to mention the fact that I'll be at school with them quite often, so she won't really have time to miss me.  Once we have SOLOMON (sometime this Fall), I will need to be there with him daily to help take care of his needs.  Also, once the sub list opens up again, I am hoping to substitute teach there on a regular basis.  It will be far different from teaching high school students, but it should be fun!  In the meantime, I will try to volunteer in the girls' classrooms as often as they let me. 


O.k., now I want to tell you about something that happened last week with Erin.  I tweeted about it at the time, so if any of you follow us on Twitter, you will now get the details.  Last Sunday the girls and I were playing around, and I picked Erin up and was holding her underneath her arms.  She was facing away from me, and I was holding her so her feet were touching the ground.  I often do this with her, because I love to see what she can do when I tell her to straighten her legs.  Erin can actually straighten her legs voluntarily (meaning she's doing it herself, and it's not just a reflex or accidental tone kicking in).  On Sunday she did this, and as I often do when she straightens her legs, I let her legs hold some of her weight.  As I'm trying to help you visualize this, I don't want you to picture Erin standing all by herself, because she certainly cannot do that, but the fact that she can straighten her legs out at all is HUGE to us.  Anyway, she can't keep her legs straight for very long before her muscles get tired and give out, but we usually give her a little break and ask her to do it again.  On Sunday, after she straightened her legs, I was still holding her up in the same position:  legs dangling below her, with her feet just touching the floor.  All of a sudden, Erin's legs started stepping.  Yes, you did read that correctly!  Erin's legs took four steps in a row, without hesitation!  Again, I was holding up all of her weight, but her legs were taking the steps.  I was screaming, "YOU'RE WALKING!  ERIN, YOU'RE WALKING!"  I know it might sound strange to you that I describe it like her legs are their own separate entity, but I don't know if Erin was controlling them or if our training from the litegait was kicking in and her muscles were doing what they have been taught to do.  Because Erin knows how badly we want her to be able to walk, she told me that she made her legs do that, but we just don't know.  We'd love to think that she did!  Anyway, it was just wonderful and absolutely amazing to watch her legs taking four steps!  She was so very proud and excited, and I know it's things like this that give her hope that she will walk someday.  Because we KNOW she will.  It's things like that little miracle that make all of our hard work and the trips to Baltimore absolutely worth it.  And it makes us want to work harder!  As my sister stated, "The journey of a thousand miles begins with a single step.  Erin has already taken four!"


On Monday, my most wonderful husband (who must love me an awful lot) volunteered to get up with Taylor at the crack of dawn to take her to Children's Hospital for a follow-up visit with her orthopedic surgeon.  Even though her appointment time was 8 a.m., they still ended up waiting almost two hours to see her.  Crazy, I know!  She said things look pretty good, but she wants Taylor to do exercises often to try to strengthen the muscles in her right leg and foot.  As soon as they got back from that appointment, I grabbed Taylor and Erin, and we were off to an appointment with their orthotist (person who makes all of their braces for legs and torso).  Jade was able to stay home with daddy and have an exciting afternoon with him.  Taylor's braces for her right foot needed some repairs and adjustments.  We're a little hard on them sometimes!  That part didn't take long, and then Erin was casted for a new TLSO (brace for her torso) and she was casted for new AFO's (braces for her feet).   It took a little bit of time, but Erin is so patient and good.  She didn't complain at all!  The best part for her is being able to choose the new designs (i.e. colors, patterns, etc).  She was very excited to pick them out this time.  I'll be sure to post pictures as soon as we get them.


On Tuesday our friends Michelle and Katelyn came over for a visit.  We haven't seen them since they came to visit Erin in the hospital in June.  It was a fun "reunion" for the girls, and they enjoyed their afternoon of play.  While they were at our house, Taylor lost her first top front tooth.  Well, I helped a little.  It was very loose, and it needed to come out, because the new tooth was already coming in behind it.  So, I grabbed a paper towel and pulled it out.  I made sure she was not in pain, and I watched her eyes the whole time.  She was very calm, and she said it didn't hurt at all.  Taylor was ecstatic when I got the tooth out, and she couldn't wait to see what the tooth fairy would leave.  In fact, she was so excited about the tooth fairy that she didn't sleep most of the night.  Now that was FUN!


On Wednesday we had a picnic at a local park with Michelle, Katelyn, and another friend Hailey.  It was pretty hot out, so we could only play for an hour after we ate our lunch.  Erin has a very tough time in the heat.  Because of her spinal cord injury, she cannot control her body temperature, and she overheats quickly.  On that day, everyone was hot, so it was an easy decision.  It was fun to get out and play for a little while though. 


O.k., so I mentioned that August is a busy month for us.  Here are a few of the things we have going on. 


1.  Erin has an MRI on her spinal cord coming up.  The neurosurgeon just wants to see what is going on with it. 


2.  We have a picnic for Kevin's work.  The girls always love going to this.


3.  We get to meet Keira, a fourteen year old girl from Canada who worked extremely hard to raise money for Erin's service dog.  Oh, did I mention that she raised over $4,000!!!!  Wow, that is amazing for anyone, but for someone that age... it's beyond outstanding!  We have never met her, but she chose to do this for Erin, and I don't think she even realizes what a big deal it is!  We will have the opportunity to spend time with Keira and her mom, and we are trying to set up an event where she can present the money directly to Paws4People.  She will get to meet SOLOMON, and she will see Erin and SOLOMON together.  Hopefully she will understand what a wonderful thing she has done for our daughter.


4.  We will be doing some filming for the new documentary that is being made about formerly conjoined twins.  It should air in November, but I'll let you know for sure when the date is set.  It has already been moved back from August, so it could happen again.


5.  And last but not least, we will be able to spend a week at the beach thanks to our very special friend Terry from Children's Hospital.  "Grandma Terry", as the girls call her, has been wonderful to our family since our very first visit to the hospital in March of 2004.  We had some meetings about Erin and Jade concerning the upcoming separation surgery, and Terry volunteered to take care of our girls.  As soon as Taylor saw her, she called her Grandma (even though she certainly doesn't look like a grandma), and a fantastic bond was forged.  We just love Terry!  She has done more for our family than you could even imagine, and we couldn't be more thankful.  She has offered to let us use their house near the beach, and we very gratefully accepted.  The girls cannot wait!!  They have been asking to go to the beach for a long time, and now their wish will come true.  It will be so much fun, and we are so thankful!  Thank you Terry and Ed!  We love you both!


O.k., another long post and still no new pictures up.  I'll do my best to get some up later today (or this evening).  Have a wonderful weekend!!

Trip to Minnesota

bucklesfamily Posted by bucklesfamily at 05:22 PM on August 05, 2009 Comments comments (3)

O.k., so the main reason that I've gotten so far behind in updating is the fact that we spent the past 2 1/2 weeks in Minnesota.  Most of my family lives there, and we had a few big events to plan/attend.  After getting home from Baltimore on Friday, July 10th, we spent the weekend repacking to leave on Monday, July 13th.  Our summer has literally been one big thing after another... away from home.  The week after the girls got out of school, Erin was in the hospital.  The next two weeks were spent in Baltimore at KKI, and the 2 1/2 weeks after that we were in MN.  It's been absolutely crazy, but (for the most part) fun.


Because I could write for days about all of the things we did on our trip, I may just list our activities, and if anyone wants me to elaborate on any of them, please let me know. 


1.  We arrived to find that my brother Mike built a beautiful ramp for Erin to get in and out of my parents' house.  He also made a small ramp from their back door to the deck, which is a small step out for us, but too much for the chair.  Thanks big brother!!  Erin LOVED it!  We brought her powerchair, and while she has always enjoyed being in MN, this time it was like she was seeing it for the first time.  It was a whole new world that she could get around in.  Best idea ever!  (I don't think I'm doing very well with listing things!)


2.  We spent time with our entire family, including my sister who was in Iraq (and who is now moving back to Iraq for good).  Yes, you read that correctly.  She has given up her house, job, vehicle, possessions, and she is going back to Iraq to teach English at the University.  We're very proud of her (and always worried)!


3.  We went to stay at a cabin on a lake north of Milacs (for those of you who know what I'm talking about).  We stayed at the same cabin two years ago, and the girls could hardly contain their excitement.  They remembered fishing, swimming, running around catching frogs, etc.  The only problem was that it was 58 degrees, windy, cloudy, and downright cold.  We only brought one warm outfit for each; just let me say that they got a lot of use!  However, despite the cold, the girls did swim (while I watched them wearing jeans, a long sleeved shirt, and a sweatshirt).  Believe me, it was in very short bursts, but they weren't about to let the cold spoil their fun. 


4.  While up at the cabin, we joined my dad's entire family for a giant family reunion.  It took place at my aunt's cabin just a few miles away.  We had an amazing time, reconnecting with aunts, uncles, cousins (and dogs).  So much fun! 


5.  While at the family reunion, Taylor, Jade AND Erin all went innertubing behind the speedboat.  I sat in the boat with tears streaming down my face, watching our twins doing something that I never thought they would do.  Oh, and I took about a million pictures of them doing it!  You will see them soon (relatively speaking).  I want to thank my sister for riding with Erin (Erin's wish), and for giving her that opportunity.  Erin wanted to do it by herself, like her sisters, but it just was not safe.  Maybe someday.


6.  Here are a few of the things we did at the reunion:

     -  Ate

     -  Went on canoe rides

     -  Jumped on the trampoline

     -  Ate

     -  Played in a very competitive bocce ball tournament (seriously).  We took 2nd place :0(

     -  Sat around talking to everyone (while we ate)

     -  Went swimming (just the girls)

     -  Went innertubing (again, just the girls)

     -  The girls hung out with their cousins and had a GREAT time

     -  Had a bonfire, roasted marshmallows, made s'mores, and ate.

     -  Rumor had it that there were games of dice and 31 after we left in the evenings. 

     -  Oh, did I mention that we also ate?!

** I guess you can see that there was definitely enough food to go around. 


7.  Because the weather was so cold up until our last day of the family reunion, the wonderful people who own the cabin we stayed in offered to let us have it for an extra day free of charge.  What a special treat!  It had warmed up to the mid-60's by then, a virtual heat wave.


8.  The entire week after returning from our family reunion was spent preparing for my parents' 50th wedding anniversary party.  Their actual anniversary isn't until August 22nd, but they will be traveling during that time, and it worked out best for all of us.  The pressure was on to throw a wonderful party, and we definitely did not want to let our parents down.  They have done so much for all of us during our lives, and we wanted to show them how much we appreciate them and their amazing marriage.  Kevin created an outstanding DVD with music and pictures from throughout their lives.  My family loved it, and we absolutely appreciate the many hours he put into perfecting his project.  Thank you, Sweetheart!


9.  My nephew, Nick, traveled from Phoenix for the big event.  He is my sister's son, and we haven't seen him since right after the girls were separated.  We also were able to see our other nieces and nephews, always the best part of the trip.  Our nephew Jesse is getting married in October, and we won't be able to return for the wedding, so we tried to spend some quality time with him and his beautiful fiance, Stacy.


10.  Saturday, July 25th was the big party.  We went up early to decorate and prepare the food.  The party was a complete success, and my parents were extremely happy!  Yay! 


11.  On Sunday after church, my sister spoke about her experiences in Iraq and talked about the reasons why it is so important for her to go back.  I videotaped the presentation, and I'm sure it will be wonderful if you don't mind a shaky camera from having to reach down to pick things up off the floor or quiet side conversations where I tell the girls to be quiet as they ask how to spell different words.  It may prove to be quite amusing, although I'm not sure that's what my sister was aiming for.


12.  Our last week was spent visiting with family, with a slight deviation on Tuesday.  Mid-morning on Tuesday, as we were waiting for my cousin (who is a pediatrician) to arrive with her children, Erin injured her foot.  At the time she couldn't (or wouldn't) tell me what happened, but it was pretty banged up.  Because I didn't see the way in which the injury occurred, I was more than a little worried that her foot could be broken.  It was swollen all over, and she had some abrasions on her toes and her heel.  It wasn't looking good for the home team!  I knew what our pediatrician would say, but I waited to see what Jessica would say once she saw it.  I mean, I am certainly not a doctor, so it was POSSIBLE that she would look at it and say it was fine.  Of course, if I were a betting woman, which I am NOT, I would have put my money on the other horse.  She agreed with me that it should be x-rayed, and she actually called a friend of hers who works at a fairly local clinic, and she arranged for us to be seen that afternoon.  Thanks Jess!!  Without you, we would have spent the afternoon and evening in a waiting room at the E.R.  By the way, I did find out what happened.  Once I reassured Erin that I was not going to be upset, she told me the tale.  To make a long story short, her foot got caught between her powerchair and the wall.  She tried everything to get it out EXCEPT for backing her chair up.  Oh well.  It turned out that her foot was fine.  She had some scrapes, but there were no fractures.  Thank goodness.  Disaster averted once again!


We arrived home on Friday afternoon.  Let me just say that going through airport security with a little girl in a wheelchair and one with a brace that is too difficult to take off is very interesting (and time consuming).  They pretty much unpacked two of our bags, looking through all of our medical equipment, powerchair battery charger, medicine, etc.  We had to be wanded, and they had to test Erin's chair and Taylor's brace for explosives.  Yep, I did say explosives.  I do appreciate the fact that they are thorough, however, and it made me feel very safe.  Erin's powerchair did end up having a piece broken off during transit, but the airline is doing everything they can to get it fixed in a timely manner.  All in all, it was a great trip, and we're so thankful to my parents for making it happen.  It was wonderful to spend a lot of time with my brothers, Bruce and Mike, and their families, as well as my sister and her son.  It means so much to us, and we cherish these trips.  We really missed my nephew Jon, who is in the Middle East, flying missions into Iraq.  We hope to see him (and his fiance) very soon.


O.k., so I clearly do not have a firm grasp on the concept of lists, but I just had too much to say.  Thank you for taking the time to read this, and as always, thank you for caring about our family!!

Quick Bits

bucklesfamily Posted by bucklesfamily at 07:19 PM on July 27, 2009 Comments comments (4)

I just wanted to let you know that I posted a few photos from Erin's recent hospital stay on our other site.  Please check out http://faithhopeandjoy.blogspot.com  to see them.  I was only able to upload a few today, and I will try to finish posting them this weekend.  These are actually from the end of her stay when she started to feel a little better.  The pics from her helicopter ride and first few days will be coming soon.  I also have many more from our latest adventures to catch up on.  One day at a time, right?!

 

Everyone here is doing extremely well.  The girls are enjoying their summer, playing outside and sleeping in.  Oh, we received word that Taylor has been approved for her wish from Make A Wish.  We will be going to Disney World!!!!!  Wow, that is sooo exciting!  We can't wait!  We'll let you know once we have more information, but we do feel absolutely blessed that our family can take some time together, and our kids can just be kids for a week.  Thank you MAW!

 

We hope you have a great week. 

Catching Up

bucklesfamily Posted by bucklesfamily at 11:31 PM on July 22, 2009 Comments comments (2)

Wow, I am having a serious problem keeping up with our blog!  I want to apologize to those of you who faithfully check our site daily or even weekly, because I know I've been letting you down.  You probably don't even check our site very often anymore, because I've been an absentee blogger!!  Well, all I can say is that I'll keep trying, and maybe I can get my act together enough to update more often.  Now, in my defense, we have been EXTREMELY busy this summer!  However, I know that you're all patiently waiting to read about our adventures, so I'll try to get you caught up without writing a novel.

 

My last update described our very frightening experiences with Erin being flown from our local hospital to Children's National Medical Center with pneumonia.  She ended up being at Children's from Tuesday through Friday evening, when she was discharged.  The doctors and nurses took excellent care of her, and we knew she was in good hands.  I think she had the very best room in the entire hospital: it was HUGE, a corner room, and had a beautiful view... all great things when you have to be there for a while (not that I think a week is "a while", because it's really not).  Erin had respiratory techs coming in every 2-4 hours to do breathing treatments with her and to do chest PT.  They taught me how to do it...  I'm not going to lie to you, it's not my favorite thing!  They tried a machine called "The Vest", which basically vibrates around her chest and back to break up the secretions in her lungs.  The problem with that is the fact that Erin is still not able to cough up the junk after it is broken up.  We met with two Pulmonologists and discussed our new protocol for Erin.  They were extremely helpful.  They want to see her every six months, so we will now stay on top of any lung issues.  What a relief!  The best part of Erin's hospital stay happened the day after she was admitted.  Mr. Terry brought SOLOMON up to see Erin!  It was fantastic!!  We needed special clearance, so I definitely need to thank everyone (Terry O., Nadia, Katie, etc) for putting forth the extra effort to make that possible.  Erin literally counted down the hours and minutes until her dog was there for the visit.  I can't even describe how amazing it was when SOLOMON walked through the door of her room.  It was like he had been given a command, because he went directly over to the bed, put his paws up and just nuzzled his head into Erin.  He gave her lots of kisses, and she was absolutely THRILLED to see him.  Everyone in the room was in awe of the special bond these two share.  Thank you Terry, for making the special trip in to D.C. to brighten Erin's day and help her to feel better.  It made a world of difference!  Erin spent a lot of time petting SOLOMON and showing him her stuffed dog who shares his name.  Because she was so sick, she tired out quickly and had to lie down.  When she did this, SOLOMON got up on the bed with her and snuggled right in.  I took the greatest pictures -- it was absolutely adorable! 

 

To make something great even better, that very same day, Erin's friend Katelyn (and her parents) came up for a visit as well.  Katelyn had a procedure herself that morning, and she came up to see Erin when she was done.  After Erin had rested from her visit with SOLOMON, she perked up again for a little while and played Candyland with Katelyn and Jade.  It was so nice to see her smile, especially knowing how miserable she still was.  We want to thank Michelle and Justin for braving the rush hour traffic out of D.C. after staying for a great visit!  We truly treasure your friendship!

 

So, by Friday Erin's respiratory rate had come down from 70 to 30, and her heart rate came down from 170 to the 90's.  Phew!  Of course, she had a few scary dips with her oxygen levels, and her heart rate went from too high to too low at times, but she slowly recovered.  We went home with her still on steroids, antibiotics and doing breathing treatments every 4 hours.  That's not bad at all.  I want to thank my truly wonderful husband for working so hard to make it as easy as possible for me to stay in the hospital with Erin.  The week she was in the hospital was a very busy one for him at work, but he made a lot of sacrifices in order to bring Taylor and Jade up and spend his days with us there.  He also has every desire to spend nights up there too, but I just couldn't bring myself to leave her.  I'm so sorry, honey, and I promise you that next time one of our girls is in the hospital (unfortunately we know it will happen), you can stay for some of the nights as well.  Thank you for allowing me to be selfish during that time. 

 

After a quick turn-around and much debate, we left for our scheduled trip to Baltimore on Sunday afternoon.  We weren't sure Erin was quite ready for two weeks of intense physical therapy, but we also knew that they would take it easy on her if she was tired out, and Taylor really NEEDED the therapy.  Our first day consisted of appointments with a nurse who specializes in spinal cord injuries.  She just makes sure the girls have all of the equipment they need and they are getting the proper care between our KKI appointments.  Our PT and OT appointments that day were just evaluations to see how Erin and Taylor are doing, if they have progressed, and we discussed our goals for that session.  Erin still sounded pretty junky that day, and everyone was concerned about her lungs, but by Tuesday she sounded so much better.  What a relief!  I think it truly helped for her to be up walking.  We had her in the pool a lot as well, which is also very good for her lungs.  On Tuesday, SOLOMON came to visit Erin at the Ronald McDonald House after therapy.  Once again, she was ecstatic!  She was so excited to share her "home away from home" with him.  Terry and SOLOMON stayed for dinner and spent time playing on the playground with the girls.  Taylor and Jade were all smiles as well, because they love him just as much as Erin.  Lucky dog!  We want to thank everyone at the RMH for being so wonderful and welcoming Terry and SOLOMON with open arms.  We are truly blessed to have the opportunity to stay there each time we visit Baltimore! 

 

Erin and Taylor's physical therapy was exhausting but outstanding.  They both worked extremely hard, and we're so proud of them for the amount of effort they put into it.  It will definitely pay off, and they understand that in order to achieve their goals, they have to put their heart and soul into the work.  We do need to thank the therapists yet again for working so hard with our girls and for making it so much fun that they don't always realize they're working!!  There are so many people who worked with our girls, so we are just going to say a giant THANK YOU to everyone who worked with them, played with them, laughed with them, and swam with them.  Absolutely outstanding!  Thank you!

 

We were able to see some of our very favorite people while we were at KKI this time.  During our first week there, we got to hang out with the Peffley family.  They have four kids, the youngest of which is the one who receives therapy.  The older three very happily played with Taylor, Jade and Erin, often helping them with their therapy.  We were even able to go out to dinner with them on their last night after therapy.  It was so much fun!  We also had the opportunity to hang out with another little girl who (you're not going to believe it) is a formerly conjoined twin and has the same spinal cord injury that Erin has!  I'm not lying!  O.K., so I'm not a mathematician, but the odds of that have to be astronomical!  Anyway, she is an adorable little girl with more personality than you can imagine.  Erin and Keira were able to have some of their pool therapy together.  Too much fun!

 

Since this is turning into a short novel already, I will tell you about one more thing before publishing it.  Terry Henry, from paws4people/paws4vets, brought SOLOMON up to Baltimore again during our last week of therapy.  We had Ms. Becca, Erin's OT, work with both of them.  This was our second opportunity to have them working together, with Erin learning how to give commands and SOLOMON learning how to listen to her.  It was exciting to see Erin gain confidence as she had SOLOMON by her side.  Terry and SOLOMON had lunch with us, and then they stayed to watch Erin doing her pool therapy.  SOLOMON even allowed Erin to squirt him with pool water, and he didn't flinch.  He's extremely tolerant and patient.  Every time we are with SOLOMON, I am more convinced than ever that he is the perfect dog for Erin!  We all fall in love with him over and over again.  As soon as he left that day, Erin started to cry because she missed him already.  We haven't been able to see him since then, but she talks about him every day, and she tells me how very much she misses him.  We will be able to see him several more times this summer, even visiting Erin's school to get him used to it.  We just want to thank Terry for all of his effort and the many miles he is putting on his car so that Erin can spend time with SOLOMON.  You are all doing an amazing job in training him, and we are deeply grateful for all of your hard work!

 

O.k., I will end this for now.  I have so much more to tell about the past few weeks, but I will warn you that the upcoming week is even more action packed than the previous ones.  I will do my best to post even short updates.  I will most likely tweet more often than I post here, so if you want to keep up with us, following us on Twitter may be your best bet.  We hope you're having a great week!


View Older Posts »

Rss_feed