And in the blink of an eye, 2015 is a year of the past!

Wow, I can't believe I'm writing the last post for 2015!  It has been a fun filled year with a lot of adventures.  Our hope for 2015 was simple - less doctors appointments and no hospitalizations.  Unfortunately that wish didn't come true, but overall we are very blessed to all end the year healthy and happy!  And that alone is a true blessing.  This year we had 32 doctors appointments and 101 therapy appointments not including the 3 visits with vendors to look at assistive vision technology.  How do I know this?  Because if it weren't for the Notes App on my phone I would surely miss an appointment or forget to schedule one!  This year was a little heavier with appointments due to the addition of four new doctors to Team Bischoff: 1) Cole's Low Vision Specialists, 2) Cole's GI 3) Reagan's dermatologist and 4) Reagan's endocrinologist.  We are hopeful that things will settle down in 2016 since we don't expect to follow up with the last two and hope to have less GI appointments in the coming year.

We had fun celebrating Christmas with family.  We spent the usual Christmas morning with the Schweisthal family for quiche and fruit soup and spent the afternoon with the Bischoff's enjoying a turkey dinner.  Both kids fully understood Christmas this year which made it so much fun.  They truly understood getting AND giving and had fun thinking about gifts for other people.  And most of all, they loved playing with their cousins!  When I put Cole to bed Christmas night he said, "hey mom, do you think someone bought presents for Kendall in Heaven?" My sweet, sweet boy to think about his sister....she is never far from our hearts.

We also had a fun New Years Eve celebrating with the Golino's.  Usually we play the countdown from the previous year a few hours early and put the kids to bed.  This year Netflix had pre-recorded countdowns in different themes.  So we watched King Julien's New Year's Even Countdown at about 9pm.  Midnight is still WAY too early for a 5 and 6 year old.  They had fun with their noise makers and hats. I'm sure one day they will figure out our trick, but until then it's nice not having SUPER exhausted and cranky children on New Year's Day.

I feel like we blinked and 2015 is in the rear view mirror.  Johnny had a busy year at NCMEC.  He also started working every other weekend as a Battalion Chief for New Kent County Fire and Rescue Department (near Richmond) and took the Emergency Medical Technician (EMT) course.  He had a very intense Fall between both jobs, this class and ER rotations to fulfill his certification.  He passed the course final, State practical exam and the National registry written exam so he is excited to have EMT as part of his credentials.  In addition, he decided to apply to George Washington University's Engineering Management Doctoral program and was accepted!  What he didn't know is that all applicants would be required to take a Fall Calculus pre-requisite course which was every Saturday from October through December.  He passed with flying colors and will start the program in January.  Luckily he had vacation time between Christmas and New Years and we've had a nice relaxing week to just be together as a family.

I also had a busy year with work focusing my consulting business primarily on Boeing, Defense Information Systems Agency (DISA) and INHOPE.  I look forward to continuing several projects going into 2016 and love having the flexibility of working as a consultant so I can book appointments as needed.  Work took me to Lisbon, Portugal last month and I will be going to Amsterdam in January.  Although juggling the kids schedules while traveling is challenging, we have an amazing nanny, Megan, who watches the kids and I trust her implicitly.  That helps SO much!

As I send my 2015 family photo album to print and reflect on all we've done this year, I'm feeling very nostalgic.  We are so blessed to be able to give the kids what they need. And although it is often exhausting and stressful wondering if we are making the right decisions and advocating enough, it feels good to see how well they are doing.  This was a big year for both kids and we saw significant progress from both of them. We are hopeful to make 2016 a year without hospitalizations and a year more focused on fun and learning than on doctors and appointments.  We wish you and your family a happy and healthy 2016 and thank you for your continued support and prayers!

And with that, I leave you with the following quote that truly speaks to me: "You are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know."

Humanware Prodigy Connect 12 and the Loupe "aka Mrs. Fuzzy Hands"

Well we had a fun week with the kids having their holiday parties, school PJ/movie party and delivering all the gifts to their teachers, therapists, bus drivers and other people who support them.  We also had an appointment at ITG to have a demonstration of the Humanware Prodigy Connect 12 magnifier that was recommended by the Department of the Blind and Vision Impaired (DBVI).  ITG is a distributor who would also be responsible for repairing equipment if there are issues.  So this relationship is an important one.  It was a good appointment and there were many details to consider.  However, it looks as though we may have narrowed down our choice and will be moving forward with requesting this unit from the Assistive Technologies Department in Loudoun County.  We are hoping they recognize the importance of the multiple capabilities this unit provides.  And although the $3900 price tag makes it a big decision, the comparable options are not less expensive for what they provide.  This device is a mounted Samsung tablet with customized software.  First, it allows Cole to place a worksheet under the camera and magnify it so he can see well enough to complete the worksheet.

Second, it does OCR, or Optical Character Recognition.  So you can place a book under the camera and it will digitize the information and read it out loud.  Cole was very quick to learn how to "pinch" to make the image larger/smaller and quickly learned the settings to change from Heather to Ryan.  When the person from ITG asked which voice he liked to listen to better he said, "I like girls silly."  It was very funny.  Third, in addition to helping Cole complete worksheets and read content, he will also be able to see manipulatives more easily.  Hands-on work is a big part of kindergarten where they look at coins, as an example, and learn how to tell the difference between them.  He has a hard time seeing the difference between a quarter and a nickel.  So this will enable him to put them under the camera and view them larger to see the detail.  Fourth, there are no more "chalk boards" in Loudoun County since every classroom has a promethium board.  All content that the class views on the board will be able to be viewed from his Prodigy Connect.  The fifth benefit is that it has a long distance camera that he can clip onto his desk and the image immediately shows on the screen.  So if he needs to look at something on the wall of the classroom (Reagan had wall words) he can use the distance camera.  And sixth, this is a Samsung tablet which runs on an Android platform.  Historically, assistive technology for vision has required software installation.  If you want the updated features, you would have to send the equipment back to the distributor for the new software to be loaded (therefore your learning tool is unavailable).  Additionally, you have to pay for these upgrades and some hardware may not support the new software.  With this device, the software updates are done over the air as they are done with a new phone software. This is a huge benefit and cost/time saver.

We have had two appointments with low vision specialists, one phone conference, and three appointments with technology experts.  This has been a long process and a difficult one since there are so many factors that require consideration.  The school has to decide what he needs now.  The advocate in me knows it'll be harder to justify a change later if what he has is "functional" so I'm also thinking ahead.  Then there's mom in me who is deathly afraid of how he will feel being different.  Whether his desk will have to be isolated to fit this huge device.  My friends tell me he won't notice.  The questions we've gotten about Reagan's brace tell me otherwise.  Kids are not mean, just inquisitive.  Kids at 5 feel different if someone doesn't like their sandwich. It's a "normal" to feel different and I know kids need to deal with that....just doesn't mean I have to like it.  I'm hoping he will be the cool kid who gets to have a "laptop" at his desk.  I've already decided we need to start thinking about a name for it.  More to come on that...

The hard part is not the logistics and implementation of the technology, but the reality that his vision really is this bad.  At his class party he needed to write his name on the present he made for me.  I knew they purchased the magnifier for him but hadn't seen him using it since the low vision appointment.  The teacher clipped the Loupe magnifier on his glasses to help him see to write.  The good news is that he smiles and it helps him.  But if it weren't for the parents watching him and asking me what it was I probably would have broken down into tears.  We are so blessed he has sight.  We are so blessed he is smart enough to want to write.  We are so blessed that he is not having to fight for life right now.  But that doesn't ease the pain in knowing that the days ahead will be hard.  He will be teased.  And so help me God if I hear one child make fun of my little miracle...let me rephrase...God give me strength to raise my child to know that he is a walking testament of your Glory...

And as we take this in stride, I'm already working on a design to customize the sticker on the Loupe.  Last thing I want is my son having a phone number written on his face.  Apparently he calls it "Mrs. Fuzzy Hands" so we are trying to come up with something creative.  If anyone has ideas please send them my way!  And just like that, school is done for the year, work is wrapping up and we're looking forward to some much needed down time over the holidays to spend as a family.  God is good...

A visit to Christmas Town !

We had the blessing of going to Williamsburg's Ford's Colony this weekend with Johnny's family.

We had a great weekend spending time with his brother Pat and sister Vicki's families and his parents.  There were sixteen of us and we all stayed on the same floor in beautiful condos.  The kids loved spending time with their cousins and being able to run between rooms.  And they were very excited that their elf Freddie and his new wife found us all the way in Williamsburg!  And yes, apparently he got married over the summer to Rose.  They are hoping the elves make it home tomorrow and don't have to stay with the next family who borrows the condo.

The weekend kicked off with movie night on Friday and they loved playing together before the weekend activities.  After breakfast on Saturday we started our day visiting Santa and Mrs. Claus at the club house.  They had funny hats for the kids to borrow and gave them candy canes.  Reagan was very excited to learn there are candy canes that aren't mint - she does not like mint and they had fruit flavored candy canes.  They were a big hit!

After visiting Santa we went to Colonial Williamsburg to walk through town and look at the shops.

The kids met Rosco the rooster and a mauper (a begger).  They got very good at watching out for horse droppings and watching for uneven roads.  Although we went to Williamsburg a year ago, Reagan definitely seemed to be more interested in learning about the people and the way they lived this time.  She learned about the pilgrims in school last month and I think that gave her more foundation to understand what she was seeing.  The people working there were very open to talking to the kids and were good at offering information and not just waiting for questions (the kids weren't really sure what to ask).  They also met a violinist who took a lot of time to show them her violin and explain the differences between the bow from that era and more modern bows.  Although they got tired walking, they had a lot of fun and hopefully learned something to take back to share at school tomorrow.

After a few hours in Colonial Williamsburg we headed back to the condo for lunch.  After a little down time we then headed out to Christmas Town at Busch Gardens.  Although we've been to Hershey during the Christmas season, this was our first trip to Christmas Town and it was very impressive!  The weather was almost 70 degrees so there were a lot of people enjoying the festivities.

As always, every part of the trip is fun.  Cole especially loved riding the tram to the park and had a 100 questions about how a tram is different from a train and why it's not called a bus.  I do my best to answer all his questions, but he definitely stumps me sometimes!  Reagan has been studying maps at school this week so she was very excited to get the map as we walked into the park.  She talked about Never Eat Soggy Waffles (NSEW) but she quickly realized that she needed a little more practice than just knowing which direction a compass leads you.

The kids rode a small horse carousel as we walked into the park and Reagan braved the twisting spider like ride with her cousin Alyssa.  Although all the rides weren't running, we enjoyed the shopping and the lights.  We were also able to see Santa working in his workshop in the North Pole and they had some pretend snow falling!  Apparently they have over 8,000 lights !  Wow, it was amazing.

We decided to go to Das Festhuas for dinner, which is a German dinner house with shows that play every hour.  We got there just in time to have dinner and watch a show and were lucky enough to catch a table right in the front!  After dinner we found our way back to the train station and rode the train back to the front of the park.  It was the ONLY thing Cole wanted to do from the moment we got to the park. He was very excited that we made time for it especially since it sounded just like a real steam engine.

The kids were wiped out by the end of the night and slept REALLY well.  We slept in Sunday, packed up in the morning and headed home to get ready for the week.  We had such a great time and loved creating some new memories.  Everyone is excited about one more week before a two week school break!  I'm looking forward to having my dining room table back from all the teacher, bus driver, and therapist gifts!!


Memorable Quotes:
I was tucking Cole in bed on Friday night and he said, "Hey mom, Kendall came with us right? Because she goes with us everywhere in our hearts right?"  I said, "yes honey, she's always with us."  He said, "Well if she is always with us and we carry her in our hearts shouldn't we just call our hearts  bags?"  I'm always amazed at the things he comes up with...I told him that was a good idea and that I hoped he had sweet dreams.

Physiatry negotiations and a little fun!

We've had a busy two weeks with a few updates.  Our latest appointment was with the physiatrist, Dr. Morozova to discuss the new brace for Reagan. She was happy with how she's doing but definitely concerned about the increase in falls.  We talked about Reagan having challenges wearing the brace and she decided perhaps we were moving to quickly.  Taking a step back was a little disappointing to me because adding more time later will definitely be a fight.  Reagan was given the option of not wearing it on weekends or not wearing it every other night.  She chose every other night - smart girl!  The doctor wants us having her put it on until she falls asleep and then taking it off at 10 or 11pm before we go to bed.  Unfortunately I think setting this type of lenience is going to make increasing time later much more difficult.  She said for Reagan to see increased muscle range she will need to wear it at least six hours every day.  So we will take baby steps and see how it goes.  She is wearing it every other night and will take it off in the middle of the night if her foot falls asleep (this is not uncommon for her).  I just hope we start to see a decrease in falls.

And with that, we've had the last doctor appointment for the year!  We do have another appointment to review vision equipment next week, but not more doctors.  We are excited to have all our appointments done until the second week of January and have already started enjoying the holiday. The fun started the day after Thanksgiving with a trip to Snickers Gap Tree Farm in Berryville to get our Christmas tree.  It has become a fun tradition and the kids love picking one, dragging it to the wagon and putting it up on our car.  Although last year I felt horrible I didn't pack gloves because it was FREEZING and this year the kids were in short sleeves because it was almost 70 degrees!  It definitely doesn't feel like December!

We also followed tradition by going to Photos with Santa at the fire station.  The kids always love seeing Santa there and we love not having to stand in line.  This year I was volunteering at the even so Megan got them dressed and brought them.  Luckily there were no concerns about Santa being "real" and he told Reagan she was on the AWESOME list - who knew that existed?!  Reagan has been very worried she wasn't on the "nice" list since she sometimes has trouble being nice to her brother.  I wish kids were as worried about getting into Heaven as they are being on the "nice" list!  But this is a good opportunity to talk about how important this is ALL year!

We also surprised the kids with Hershey Bears Hockey tickets.  We chose last weekend because it's the annual Bear Toss.  Several AHL teams have one day each season where everyone brings stuffed animals to toss onto the ice after the first goal.  All the animals are donated to a local Children's Hospital.  The kids were super excited about being able to throw the stuffed animals and see over 18,100 bears being tossed!  Cole was pretty excited about being able to see Cocoa again too...specifically he said, "I can't wait to tell him I'm five now!"  As you may remember Cole met him at a game last year when Cocoa gave him a puck.

Unfortunately Cole continues to suffer from pretty severe headaches.  Luckily we are catching the signs early and he is getting better about recognizing them and tell us.  We also give him medicine as soon as they onset to try to prevent the vomiting.  We are still discouraged that we haven't figured out what is causing them, but we are continuing to focus on more sleep and better hydration.

I have mentioned before that I love some of the things the kids say...so here are a few funny ones...

Reagan was crying about her brace one night and said she didn't want to wear it. He looked at her and said "It is what it is Reagan and you just gotta do what you gotta do."  He said it very lovingly, but I can't say it helped.  It does explain his personality.  Just like last week when our elf Fred returned from the North Pole.  Reagan left for school and he looked up at me and said, "Mom, he's not real."  I reinforced that he is real, can't you see him?  He said, "he doesn't move and doesn't talk and definitely doesn't look real." Reagan on the other hand decided we needed to buy him a coat because it would be cold flying all the way from the North Pole!

Here's another funny Cole story.  We were at dinner and our waitress told us her birthday is in December.  He looked at her very excited and said, "Cool, that's our when our leader's birthday is too!"  I said, "honey, what leader are you talking about?"  He said, "Well Jesus of course."  Too funny...

I wish you all the best life can offer as you enter into the holidays.  Family. Togetherness. Love, Hope and Joy.  And let us all remember the reason for the season!

New slant board for Cole - What a difference!

Just a few quick updates for those of you who read the blog and don't see it on Facebook.  We had the orthotists heat and stretch Reagan's brace.  He also added a large pad inside to reduce the rubbing.  Night one she still went to bed with tears but SLEPT THROUGH THE NIGHT!  It was SO nice...for both of us.  Unfortunately, every night since she's woken up again irritated (sometimes uncomfortable or itching).  I've decided with the short week next week we're going to try to see if time will help adjust to the brace.  And with several days at home, we may do some daytime work with the brace so she can get a good night's sleep.  We will go back to see the orthotist after the holidays if necessary.  I'm hoping we get some insight when we see the Physiatrist on December 1st, however.

I wanted to share a quick poem I wrote one night after putting Reagan to bed.  We had just read a Dr. Seuss book so he was on my mind as I thought about Reagan struggling to fall asleep.

"One sock, two sock, pink sock, blue sock. Tall sock, short sock, half sock, whole sock. No sock too. I will throw this brace at you. No, no, this brace will not do. I don't want this brace and I do not want you. 

On brace, off brace, red spot, hot spot. Eight days now, and I say that's enough. I do not want this brace, it just will not do. I will cry each night I say. Until you make this brace go away. I will wake you one time, two times, four. You will not sleep any more. Not if I have to sleep this way.

What do you say? This brace must stay? Oh what will I do? I do not like this brace and I do not like you. You say you love me, yes you do. But why do you make me hurt this way? I just want it all to go away...

You will wear this brace I say, because you need to, it's the way. You will wear it, yes that's true. Even though you don't want to. You will wear it, yes you will. Because you know I have faith in you..."

In other news, Cole has a new slant board that he's using at school.  I can't tell you how much I appreciate our new TVI (Teacher of the Visually Impaired).  It is amazing to look at these two pictures and see what a difference such a small adaptation can make for Cole.  I am constantly concerned about back pain since he is always leaning over books or art projects. Although he has been using a 3-ring binder to lift content, it wasn't large enough for art projects and wasn't able to be as high as this one.  As you can see in these pictures, in the top picture his back and neck are bent to lean over the book to count the apples on the character's head in the Dr. Seuss book.  In the second picture, he is still able to count the apples without having to lean toward the content.  This fancy new clipboard has three settings so he can also use it to write.  Anyone want to guess how much a plastic stand like this costs?  Yup, $200.  Wow, I'm in the wrong business.  The good news is that he will be able to take this to Kindergarten with him since it was purchased for him, not for the classroom.  I'm super excited about this new tool for Cole!

I'm also excited to share that Cole was on the front page of the Loudoun County Public Schools webpage today!  Cole was asked to come to his friend Sammy Child's Home Economics class (now called Family and Consumer Sciences).  She was inspired by our visit to Ronald McDonald House over the summer and used that inspiration to propose a class project to make blankets for Ronald McDonald House.  She invited us to join her to present the blankets to a representative from Ronald McDonald House and share what receiving a blanket meant to us.  What a great cause and a special young lady who is helping others! For the full article go to www.lcps.org or click on the image below to make it larger and read it in full.

New AFO and a New Low Vision Specialist

This week brought with it two appointments.  First, we went to pick up Reagan's new AFO from Nascent Orthotics on  Monday.  Unlike her last brace, this one extends all the way to her knee.  And unlike the last one, she will wear this only at night.  Although I thought night wear only was a huge "selling factor" this brace is very hot since it has solid plastic up to the knee.  It also has four velcro closure straps.  The goal is to increase the tightness of the velcro each week to decrease the angle of the ankle, therefore stretching the calf into a position that the brain does not currently allow.  We talk about the importance of reducing her tripping and how we want to prevent her from getting hurt but in addition to being hot, the brace makes rolling over in bed tough since it gets caught on the blankets.  Sadly, she's cried every night because it's uncomfortable.  She also gets frustrated that "lefty doesn't work right." The last two nights she has also woken up at 2 and 3am telling me her leg hurts.  The first night I adjusted the tightness of the straps and that helped, but last night we removed the brace and her ankle was slightly red.  I've made an appointment for next week to have them modify the shape around her ankle hoping that will help.  Luckily we don't have to try to find shoes to fit this one and even better, insurance has covered it completely!  Doesn't look like $1,240 does it?

There are so many decisions over the last 6 years that I have doubted whether we are choosing the right path.  This is definitely one of those...but I try to remind myself that everything takes time to adjust.  And as with other parenting challenges sure to come, the popular decision isn't necessarily the right one.  But there is nothing more heartbreaking than to cuddle her through the tears wanting lefty to work right so we don't have to travel this journey.

This week also included getting a second opinion from Dr. Peyam Mojallal at Acuity Vision Care, a low vision specialist.  Cole is doing SO much better making it through long, exhausting appointments, but it's still very difficult getting a good gauge of his visual acuity. It was a productive appointment, but still disheartening watching him try to read the letters and realizing that he just can't.  He was unable to see any of the letters with his right eye regardless of size or distance to his eye.  He struggled with the left but he was able to see the letters.  The doctor also tested the use of two different magnifiers.  Unfortunately neither worked well since Cole tends to bring content closer to him and these need to remain on the reading material. Although we could retrain the behavior, he will then need to lean over the content which will not be good for his posture and could cause back pain over time.

He also tested a "loupe" which clips onto the glasses.  It works much like the magnifiers jewelers use.  When we clipped this onto his glasses and gave him something to read he said, "Wow, these words are huge!  This thing is cool.  I wish I had one of these."  We have decided to make the request to Loudoun County to purchase one and see if it helps him.  It will be something he could clip onto his glasses when he needs to read something that is small.

Unfortunately this will not be a good solution for doing school worksheets since he can't write on them while he's looking at them.  So the doctor will also be providing some suggestions for CCTVs and we plan to submit a request to Loudoun County to purchase one.  The one we saw at GMU is still high on our list of options.  Not only is the price for the ReadDesk very reasonable (only $800) it runs off USB so finding power in the classroom will not be as challenging since it could run off a laptop. It can scan, read, magnify, save and listen to any printed material. Although I'm discouraged that we need to move in this direction, I'm so thankful for a vision teacher who is proactively researching and advocating for our son.

I'm feeling very lucky that we only have one Nascott appointment (to adjust the brace) and a physiatry appointment to talk about using the brace and then we will be done for the year!  We are all getting very excited about celebrating the upcoming holidays!  Unfortunately Reagan told me recently that Santa is just a man in a costume.  So we've already visited the "real Santa" to give a tug on the beard and verify Santa really does exist.  We are very excited to carry the tradition and magic for another year!

GMU Assistive Technology, Ophthalmology and Neurology EEG plan

It has been a few weeks since my last post and I have a couple updates.  First, I wanted to share a picture from our annual lantern lighting for Kendall.  It's amazing to me that it has been five years!  Although it is always a somber event for us, it is a good time of reflection and the kids love riding the ATVs, lighting a camp fire, eating a picnic dinner, lighting the lantern and this year we layed on the ground and talked about the stars and planets.  I felt very blessed Cole was able to see them - often he struggles in Sterling because the sky isn't as dark and the stars aren't as bright.  It's always amazing how beautiful the sky is at my

parent's house.

We had a great visit to George Mason University's Assistive Technologies Department this week.  I never really thought about the transition to college, but it's important for students who are visually impaired to have a point of contact to help them access their education like "sighted" students.  There are many challenges for visually impaired students - college is not just finding their classes and listening to lecture, it's also performing literature searches or completing labs using proprietary software.  All software companies are required to be 508 compliant so that students with vision or hearing impairment can access them.  This legislation came about with Section 508 of the Rehabilitation Act that requires all web content to be accessible even if you are visual or hearing impaired.  I have developed training that is required to meet these standards and it's critical for those who need the accommodation.  However, many students going to college use magnification software that is not necessarily compatible with the proprietary software that colleges use (most test with Jaws which is losing popularity).  So when students try to do a literature search with their magnification software it doesn't work properly since the testing the software company used may be different than the one the students are using.  For example, some software runs better on Firefox than Safari or Internet Explorer.

The Assistive Technologies Department at GMU not only supports these students in finding solutions that will work for them to access their education, but they also work with the professors who need helping learning how to adapt their material.  We learned a lot about what features are available in software and what hardware options are used for magnification. We were also able to see the magnification software and how it works and we were able to see a slick new CCTV.  It is portable and powers directly from a computer via USB so it doesn't need a power source.  This is important if we're talking about Cole using it in a classroom since outlets are not easily available.   This CCTV has a lot of features that could benefit Cole for his schoolwork.  The CCTV is called a ReadDesk and I would love to see the school purchase something like this for him.  Time will tell how hard it is for us to get something like this approved.  As far as magnification software, there are free software options that are not as feature rich as the ones that require a license.  Unfortunately getting justification for the license is difficult since there are free options.  Again, time will tell whether we are able to get the support we need.

This week we also had a visit with the Ophthalmologist, Dr. Jeffries for Cole's 6 month follow up.  I had a lot of questions since we hadn't seen her since visiting the National Federation of the Blind, George Mason University AT Department or the Low Vision Specialist.  I told her about his ongoing head aches and asked if his vision issues could cause the headaches.  She said no.  I also asked about Braille and she said she does not think it is necessary right now - luckily she is in agreement with Cole's TVI (Teacher of the Visually Impaired) so  we will hold off on learning Braille at this time and discuss it again in a year. There are several reasons for this decision: 1) learning Braille requires strong fingers to press the note machine and it will be very difficult for him physically 2) his eye sight is not degenerative so he won't lose what he has now 3) he is able to see as long as the text is enlarged so the CCTV in combination with a magnification software will help significantly 4) the optho doesn't think he will experience eye strain which is why NFB and DBVI (Dept of the Blind and Visually Impaired) originally said he should learn braille.  Overall she said he looks good and she'd like to see us back in 6 months.

In addition to opthalmology we also visited the neurologist, Stephanie Stavish this week.  I brought her my extensive spreadsheet tracking his head aches and she said that unfortunately there are no tests to determine what is causing them.  She said the primary cause in kids is either lack of sleep or dehydration.  She wants him drinking 40 oz of water daily.  I'm not sure how we are going to accomplish that, but we are going to try.  We are also trying to get him in bed closer to 7pm to increase his overall sleep.  Other than that she said he looks good and come back in 6 months.  If the headaches continue she recommended we consider putting him on a preventative medication, but we are hoping to avoid that.

The neuro was happy to see that Reagan is doing well, that the endo appointment went well and that we saw progress at Kennedy Krieger over the summer.  Luckily the neuro said Reagan's medication is at the right level for her weight so we don't need to go up again.  When I asked at what weight we would need to increase she said it may depend.  She suggested we repeat the EEG to determine how her seizures look.  She reminded me that Reagan's seizure activity is not focal - it's all over her brain.  If it were localized to the lesion where her surgery occurred then it would be less likely that she would come off medication because it's clear that the seizures are caused by the scar tissue.  Being more generalized, however, it's possible the brain will learn to remap the signals causing issues.  This doesn't seem logical to me since the brain has to remap so many different places….but I don't pretend to really understand synapses remapping. I am not holding my breath, though.  I was very hopeful last time she had the EEG and was crushed to find out that she was having them all over.  We will plan to schedule her EEG for April in order to be able to review the results at our next neurology appointment in 6 months.  This will also be two years from the last one.

Luckily we only have 3 more appointments this year (low vision second opinion, orthotics fitting, physical medicine).  The kids are excited about Halloween and the coming holidays.  We went to costume bingo last night at the kids' school and Cole begged another boy to borrow his mask. he finally looks like the Ironman we've been calling him for years!

To carry tradition, I like to share quotes from the kids.  One day this week Cole woke me in the morning and said, "mom, I don't think God is going to let me into Heaven." Deep conversation for a 5 year old to wake up to right?!  I tell my children that Heaven isn't a given….we need live in God's image to be accepted into Heaven.  I guess he took me very literally.  I told him that he is a good boy and that I'm sure God is happy with him.  Then he asked where you go if you don't get chosen for Heaven.  Yikes.  We talked about Hell and he wanted to know what it was like there.  Given his anxiety I was cautious with how much detail I shared.  But I ensured him it's not someplace he will want to visit.  He said, "If I'm a good boy and God will accept me in Heaven then why haven't I gone there yet?"  Another confusion that apparently I didn't explain well. But wow, what a thinker he is! I told him it wasn't his time yet after which he of course he asked why it was Kendall's time.  Another tough answer.  I never tell them she died because she was sick because I don't want them to think if they get sick they will die.  So I have historically told them she died because God chose her to come to Heaven and it was her time.  I totally understand his confusion and hopefully he was satisfied with the answers he received.  He is such a sweet boy who is so thoughtful.  I pray that I'm giving him the right guidance to understand this complicated world and after life.  I look forward to starting him in CCD (Catholicism classes) next year so I have support answering all these hard questions!

Day of Reflection and a visit to the Endocrinologist - FINALLY!

Wow, it was a busy day!  After Reagan left for school Cole and I went to the gym as we do every day
except Thursday (because I volunteer in Reagan's class).  I had 60 minutes of "quiet" time on the elliptical to think about my day five years ago today.  So after the gym I told Cole we should go to Starbuck's and remember Kendall by getting cake pops!  We've never bought them before so it was a fun treat and a good way to make new, happy memories.

I bought the recyclable butterfly coffee cup and after Cole finished his chocolate pop he asked when we were taking Kendall her pink one.  Sigh. When I told him we couldn't go to Heaven he said that was ok, but told me I couldn't eat it because that would make Kendall sad.  I tried to explain that we don't take our bodies to Heaven, that's we only have a spirit, but I honestly wasn't quite ready for that conversation.  When I started to cry at the thought of losing her, he said, "it's ok mom, she's in Heaven.  You don't need to be sad."

After Starbucks it was time to put Cole on the bus.  The house was desperately quiet and because I'm between contracts I had no work and didn't need to get the kids from school until 1pm (for the endo appointment).  I decided to head to Home Depot to pick up bulbs to plant in memory of Kendall.  The year she died my mom and dad helped me plant 200 Daffodils in our back woods.  Every Spring when they bloom it gives me such a warm feeling to think about her.  Unfortunately a pesky squirrel decided to steal a lot of my bulbs over the last few years so I decided it's time to add more (285 to be exact).

I want to share an interesting reflection with you as I was planting. Bear with me on the long winded build up…As I started digging holes my initial feelings were filled with joy - seeing the packaging and thinking about how beautiful these would look in the Spring. As I dug, the tears started rolling down my cheeks as I wished I didn't have to plant bulbs and wishing Kendall was part of our family here on Earth. I found myself hacking violently at the chunks of clay and the annoying grubs but realized it didn't really make me feel any better. It just fueled my anger. As I would I get another bag of bulbs I would see the flowers and remember that planting bulbs would bring Spring flowers. I felt joy again. And I marveled at how much this roller coaster of feelings reminded me of my journey through grief and healing. Good days. Bad days. Angry days. Sad days. And days that I just feel numb. Then I started thinking about all of my friends who have lost a twin (there are 31 women in my NOVA Multiples Loss Group). Then I found my energy renewed as I felt the need to plant bulbs for all of these angels. Then I looked closer at the package and saw the diagram of the bulb below ground and the flower rising above. Then it dawned on me…these bulbs are like our angels who have been buried and the flowers that will bloom in Spring are like our twin survivors. Beneath every flower is a bulb that is helping it grow and giving it life. Without it, there would be no flower.  For each bulb I planted I spoke the name of one of the angels I know who left this Earth too early. It was amazing how planting these bulbs helped me see the beauty that is to come as long as I am patient enough to wait until Spring.  I look forward to seeing all these flowers when they bloom.  And hopefully they will all make it through the winter!  It's a wonderful analogy that somehow spoke to me today...

After getting two thirds of the bulbs planted I had to get changed to pick up the kids early from school.  We headed East, fought stopped traffic on route 7 and did a U-Turn to take the toll road.  Luckily we were only 5 minutes late which was pretty luck given we sat in stopped traffic in Sterling for 20 minutes.  Our appointment with Dr. Mehra, Endocrinologist, went very well.  We discussed the symptoms Reagan is having, the results of the bone age test (which was normal) and the blood work (which was normal) and she said she isn't overly concerned.  She said her symptoms are considered Premature Adrenarche not Precocious Puberty (not uncommon amongst children with Cerebral Palsy).  Apparently that's a good thing.  Phew! She gave me a list of symptoms that would cause her concern and said unless we see those that we don't need any followup.  We have been waiting to see this doctor for 5 months so we are VERY happy to have this one checked off our list!  

We made it back to Sterling in time for Reagan to go to CCD (religious ed class), Cole to get to Tae Kwon Do, back to pick up Reagan, eat a quick dinner and get her to Tae Kwon Do class and then all home to bed.  We will wrap up our week of appointments with flu shots tomorrow.  Unfortunately Reagan's epilepsy/cerebral palsy requires her to get the shot instead of the mist so I get it too so she doesn't feel left out :-)  Other than two follow-up appointments for me in the next two weeks, we have no more doctor's appointments until the 19th and 21st!  Yahoo - almost like a vacation!  

On a separate note, I promised to start sharing quotes from the kids that make me laugh.  My favorite today was the first thing Cole said when he woke up today.  "Mom, am I still 5?"  Love that kid...

Quick updates ~ GI, Cole's Birthday, Pediatrician & Back to the Orthotist

Just a couple quick updates since I have so many this week.  We met with Dr. Honeybaum the GI last Friday to follow up on Cole's constipation issues and she is still not happy with his output.  We have increased his Mirilax to 1.5 caps per day and if he goes one day without a stool then we will double the dose.  Hopefully the increase will work - last thing I want is for him to have trouble making it to the bathroom, espeically at school.  She also wants us considering a cleanse every other month.  YIKES!  Remember that line-up of cups from the hotel?  Yup.  Luckily we won't go back to the GI a few months as long as everything continues moving along.

In addition to doctor's appointments we reached the big 5 year milestone for the twin's birthday.  Although it's always a bittersweet time of year, we had a very nice celebration for Cole's birthday over the weekend and had my parent's over to celebrate on Sunday (Johnny's parents are out of town).  He had a lot of fun with his friends and cousins at the fire station where Johnny and I volunteer.  We had pizza and cake - his two favorite foods!  We also had rescue obstacles setup and the kids got to play on the real fire trucks.

We have been talking about a fire house birthday for years, so it was fun to finally host it.  Cole chose a Heatwave Rescue Bot Transformer theme and they had a lot of fun acting out the rescues with their pretend fire trucks including a parachute rescue!  One thing I recognized early is that the years of hosting birthday parties is actually very short, so we are enjoying it while it lasts!

In addition to having a birthday, Cole also had his 5 year check-up.  Luckily there were no shots because I let him get him get the flu mist instead of the shot this year.  He was very excited about that!  Overall his appointment went well.  He has grown over 3" this year!  He is finally at the 25th percentile
and we are very happy to see an increase in his growth rate above where he has been since birth.  Hopefully this trend will continue!  And hopefully no more pediatrician until his 6 year check up!

It really is amazing when you look at how far he has come!  I am so proud of how hard he has worked to get where he is today.  He will always live with the affects of prematurity, but he doesn't know life any other way.  I can't wait to see where the next 5 years takes him!  So proud of him.  And I know his special angel in Heaven is dancing on her birthday and celebrating with all the amazing people there.  It is difficult wondering what she would be like, and how different our family would be, but one day we will be reunited again.  Until then, we will focus on our successes, take life one day at a time, and look forward to the years head.

We also had an appointment yesterday at Nascott Orthotics and Prosthetics.  Unfortunately with Reagan's increased tightness in her left leg we've decided to have her fitted for a new orthotic.  The good news is that we're going to try using it only at home and see if we can see some improvement in her gait and decrease in the falls.  If so, we hope to only have this night brace.  If we don't see improvement then we may need to put her back in something during the day.  As you may remember, the day brace they are recommending for daytime is a hinged solution so it's VERY large and finding shoes will be very challenging because the shoe has to be wide and go up in size to accommodate the width of the hinge.  Because she only wears it on one foot she only increases one shoe.  Any more than one size increase and the shoes look vastly different and it looks funny.  

Reagan was a really good sport about the casting although I'm not sure how long that will last when she finds out she needs to wear it to bed.  I can't image that will be comfortable.  The goal will be to slowly increase the angle of her foot to get it into less than 90 degrees.  Imagine standing flat footed and raising your foot off the ground so only your heel is on the ground.  She is unable to do this at all.  Do you have any idea how much your toes are involved in wearing flip flops?  This is also something very difficult for Reagan because she can't wiggle her left toes.  And although this doesn't sound like a big deal, the tightness increases over time when the muscle isn't used correctly.  Ultimately it is causing her to trip more over her toe (because she doesn't lift it when she's walking/running).  You will notice in the picture that Gary used the saw to take off the cast.  This was a first for Reagan and she did great!

It's off to the endocrinologist today for the much anticipated appointment that we made 5 months ago.  Prayers for an anticlimactic appointment where she says, "that's no big deal...come back in a year and we'll see if anything has changed."  Although I'm preparing for, "we need to do blood work, follow up in 3 months and she needs to start taking medication to control this."  I would LOVE to be wrong!

Feeling Disillusioned ~ GI, Developmental Ped and Low Vision Specialist

It has been a busy couple weeks getting back into the new school schedule and tackling all the Fall medical appointments.  Reagan and Cole have enjoyed the first few weeks of school.  Reagan is in First Grade now in Mrs. Kee's class.  Amazingly enough, Reagan had Mrs. Kee her first year of preschool at Potowmack Elementary School in 2011 (at 2 years 4 months) when she was substituting for Mrs. Torry Verrill.  Reagan has a new Occupational Therapist, Kelly, and a new resource teacher, Mrs. Roach but has the same physical therapist from last year, Katie.  Reagan's favorite part of school this year is doing science experiments!

Cole has Mrs. Torry Verrill this year and it is his third year of preschool at Potowmack Elementary.  He is very excited to be back in school with new friends.  He has a new primary teacher, new vision teacher, Stephanie, and new occupational therapist, Kelly.  His favorite part of school is getting to ride the bus - 739 and 751.

Our Fall appointment schedule started with a follow up for Cole with the GI, Teresa Desanctis, who is a nurse practitioner.  She found my spreadsheet with Cole's Mirilax schedule very helpful but was concerned that he still goes a day or two without stooling.  She said I need to double up the Mirilax any time he goes a day without.  Finding the right balance to prevent accidents at school is challenging, but we're figuring it out.  She wants us to follow up with the doctor again in October.  Unfortunately the head aches and vomiting have continued intermittently.  I've been in communication with the neurologist since it is clearly not constipation related and we have a follow up appointment scheduled next month to talk in more depth.  Unfortunately everyone is at a loss right now.

Our next follow up appointment was with Susan Lansbury, the Developmental Pediatrician.  Overall it was a good appointment and she said, "he is a completely different kid."  She was happy to see him able to sit in a chair and focus during the appointment.  She had me complete an ADHD survey and asked me to have his teacher and Occupational Therapist complete the survey and fax them to her as well.  She also wants to review his IEP and provide feedback.  We will go back in 6 months to touch base again.  Nothing truly earth shattering, but nice to have someone who is willing to review the IEP and provide feedback.  Ultimately we are keeping this relationship in case he does need to be medicated for ADHD in the future.

Our latest appointment was with the low vision specialist, Dr. Alibhai.  As I drove to this appointment, I had high expectations for a productive meeting.  After having numerous discussions over the summer with vision specialists I was hoping to discuss whether Cole should learn braille, or start pre-braille learning tasks.  I thought we were going to talk about doing a Learning Media Assessment and CCTVs to determine what technology may be a good choice for him.  Cole's Teacher of the Visually Impaired (TVI) from school came to the appointment which was the first time we'd met.  She is very knowledgeable, very responsive and has a great way of connecting with Cole.  We spent over an hour discussing Cole's plan and I left feeling like we just sat at a red light the entire time.  Long story short, Dr. Alibhai and Stephanie said he is too young to do a Learning Media Assessment because he can't read yet.  Dr. Alibhai said I need to work harder at letting Cole be a kid and stop worrying about how he's going to learn in Kindergarten.  "I'm not worried about this.  He's a smart kid and you shouldn't be worried either."  Although when I talked about his tasks in Kindergarten he had no knowledge of the curriculum, the worksheets or the homework requirements.  My biggest concern in wanting to determine a solution is because we will need to 1) meet to determine the solution 2) advocate for funding 3) make the purchase and integrate the technology and 4) teach him/the teacher how to use it.  I would like the solution determined before the end of this year so it isn't new to him in Kindergarten.  Although I would prefer professional input, if I'm not going to get the support necessary, I know there are iPad alternatives that could be implemented more quickly that may be a good choice.  I've already setup a meeting with Cole's teacher for Friday to discuss next steps and her perspective on everything.  Dr. Alibhai's perspective was, "well if he seems to like Brialle then teach him, can't hurt."  What I don't understand about that comment is that it doesn't just "HAPPEN".  It would require modifying the IEP and justifying it.  While I don't disagree that it can't hurt, it can if he's getting pulled out from the classroom and missing curriculum.  I am feeling very disillusioned, but I'm trying to take a step back and breath.  I will make it clear in the Spring that a solution needs to be implemented before the end of this school year.  If that means I'm given a new title, "Implementation Manager" SO. Be. It!

As I sit down to write this post, I find myself thinking about a day early in my career and fresh out of college.  I would go to the gym at 5:30am, be in the office by 7am and was ready to take on anything handed to me.  I had passion for what I did and excitement to learn (hence having two Masters degrees).  I remember one day making a positive comment about a problem to which an elderly man on the project looked at me and said, "it's ok, one day you will have experience behind you that will make you as cynical as the rest of us."  I remember thinking how sad it was that experience would turn someone cynical and I was determined not to allow myself to be swallowed into that self defeating abyss.  And yet 20 years later I find myself teetering on the edge of cynical.  Cynical with the lack of answers.  Cynical with the school system for being so focused on the "now" and unable to see the big picture.  Cynical with people who seem determined to tell me that I need to relax, sit back and "see what happens".  I am certain that without the interventions that we have taken, our children would not be as high functioning as they are today.  And while I appreciate that my children are but ONE on a large list of patients, I am their mom.  I am their advocate, the one who picks them up when they fall and the one who gives a high five for a job well done.  The doctor even said sometimes you have to allow children to fail in order for them to tell us what they need.  And although I partially agree, when I think about all the things Cole will tackle in school, why would I want him to fail at seeing a worksheet when I could give him technology so he can see it? That's like showing up for a test and not bringing a pen?!

With that said, I recognize I take every challenge on like a project. I spend a lot of time driving to doctor's appointments, sitting in waiting rooms, and listening to doctors…all in the hope of getting answers. Of learning more.  Of taking some morsel of information that will help me teach my children how to reach their potential and feel good about themselves.  Today I was told, "maybe you should just let Cole be a kid."  Why?  Because I mentioned that Cole knew the difference between a pentagon and a hexagon at the age of 2.  Not something we pushed - but something he gravitated to.  He loves shapes!  But the point the doctor was trying to make was that perhaps by letting him be a kid and not trying to solve the problem before it happens, that he will learn more by "winging it."  I recognize I can't always predict and prevent the problems that will inevitably lie ahead, but there is a fine balance of allowing failure in order to find success and allowing a child to feel unable to do something that everyone else can do.  And while I agree conceptually, I find it personally challenging to not prepare ahead.  So I will try to throw caution to the wind and "wing it" even though it is against everything in my being.  I will try this on for size and see how long I can tolerate the personal discomfort.  I think I can…I think I can…and as I always tell Cole, "don't say I can't, say I will try but I might need help."

Ronald McDonald House ~ I had no idea the impact...

Many of the people who follow my blog are parents of special needs children who may one day find themselves guests at a Ronald McDonald House (RMH).  However, I think it's insightful for all of us to better understand what this home provides to some pretty special children.  I will admit - I was familiar with RMH, but never really understood how much a "home" could impact someone facing a difficult medical situation.  All of us who eat at McDonald's have seen the extra change tray that benefits the Ronald McDonald House.  Never before have I realized how much that money could help families who are going through a very tough time. This post is to share a day in the life of care givers and patients at RMH.

After we arrived in Baltimore Monday we got a call from Ronald McDonald House and they had a room for us after being on the wait list for 4 weeks!  Although apprehensive at first since we had a rhythm at the hotel, the move would save a lot of money so it made sense.  There are many things about RMH that make a difference in peoples' lives and I want to try to share that with those who will never need to find a place to call home away from home.

The People - who call this work
From the moment we walked in the door we were greeted by such friendly people.  Their motto is "The House That Love Built" and that truly does describe it.  Both children received a beautiful fleece blanket - Cole's is blue and green and has soccer balls and Reagan's is pink with foxes.  They were so nice to have since we hadn't packed blankets. There is an entire staff of people who make RMH possible.  Interaction with Ashley started when our referral paperwork was sent over from the hospital by the social worker the Friday before Reagan started treatment.  Since there wasn't availability at RMH for us Ashely was instrumental in making sure the hotel we chose from their vendor list was booked at the right RMH rate ($65/night instead of $259).  She was also very helpful in working with the hotel to coordinate a monthly parking rate since it was $32 per day.  That would have been $640 just in parking and we got that reduced to $250.  All the staff was very helpful, always had a smile and really made you feel like they were invested in helping you.  This also included the shuttle bus driver (aka Santa Claus) and the maintenance engineer.  Bud drove the shuttle for 7 years before his wife became ill and passed away.  Now he does odd jobs around the house like hanging flat screens and checking the rooms for problems such as light bulbs and broken towel rods.  He's probably almost 80 years old and his kids are moved away, but he likes knowing he can help these kids in some way.  During the Freddie Gray riots in Baltimore a mom was driving back from the hospital and her car was surrounded by rioters just 2 blocks from RMH.  She called RMH frantic and Bud and Sue called U of Md police and ran down the street to try to help her.  Such amazing people.

The People - who call this home

In addition to the staff at the house, there are dozens of people who called this home.  We met so many amazing kiddos and their parents, aunts and nurses.  We met Lizzy, Gabe, Riley, Maddie, Mia, Maddie (another one).  We met 3 children having leg lengthening, 2 with cancer, 1 with a tumor (a 2 year old waiting to find out if her foot would need to be amputated), 1 with Spinabifida back year after year for therapy, 1 with severe neuro behavioral issues, 3 who had bladder reconstruction and had colostomy bags, and 1 quadriplegic.  We met 1 friend from Japan, 1 from Korea, two from MN, two from TX, 1 from NY, and 1 from Delaware.  Each had a story and each were on a journey with an end that was unknown.  Two of the children who were doing leg lengthening were there for 3 months every time they came.  Both had been coming for 10 years.  There was a short period of time that the doctors thought Reagan had a leg discrepancy so this hit very close to home.  Here is a story about a little boy who needed the surgery - you can see the framing system in the picture and read about it in the Kennedy Krieger magazine.

This "home" that we found was truly that - a place all these kids have come to know well.  And although people come and go, they feel accepted while they are there.  And THAT was what I took away as the biggest benefit of RMH.  Three kiddos pushing themselves around in wheel chairs with huge pins sticking out all throughout their legs.  No one stared.  No one made fun of them.  They could talk about it if they wanted, or we could ignore it and play bingo.  You would often hear the mom's in the kitchen sharing stories and getting advice as they were preparing food or reading a book while their child was at the hospital or in bed in their room.  Sharing stories in a place where jaws don't drop, but understanding prevails. How many times did people at the hotel ask how Reagan broke her arm.  She would say, "I have a cast to make my left hand stronger."  And the poor kid would get these confused looks. She realized they were confused but didn't really know how to explain it any differently without a label.  At RMH, people just say, "Oh, cool" and move on.  It truly was so refreshing feeling like you could share your story with people who could relate and didn't immediately feel sorry for you.

The Volunteers
Another part of RMH that makes it so successful is the volunteers.  We had breakfast and dinner made for us every day.  Different local organizations sign up to cook and donate their time and food to prepare a meal for all the patients at RMH.  Currently there are 33 rooms, but a new home with 50 rooms is being built and will be finished in 2017.  After a long day at work or a full day at home with the kids, what do you do?  These volunteers not only cook, but a different group volunteers after dinner hosts crafts and activities.  One night was painting, one was Bingo, one was making t-shirts.  Honestly this was something Reagan really looked forward to.  It gave the kids something to do and have a little relief from an otherwise
sedentary day.  It was amazing how much less stressful it was trying to figure out where to go to eat, how much it was going to cost, how we would walk there (or find a parking garage), and of course, how can you continue to afford meals out for 5 weeks….let alone 3 months.  I am in awe that there are so many volunteers who give their time to help others in need.  And equally impressed by the donations needed to help support a home like this one.  I often struggle at Christmas to find a way for my children to help needy families where they FEEL the impact of their donation.  We take clothes and toys to the Salvation Army every year and I have them go with me now.  I explain how not everyone can afford Christmas.  While they are still learning this, I am now thinking it may be fun to volunteer for craft night at RMH.  Something where they can see the smiles on the faces of those they are helping….directly.  Kids just like them...

The House that was Home
I've included pictures of the house which was renovated in 2001.  It looked brand new and had everything we needed.  It was cleaner than our hotel!  There was a full kitchen stocked with a free section of refrigerated and cabinet food, a bin in the fridge/freezer and two cabinet drawers labeled with your room number for you to keep food.  It was also fully stocked with plates, pans, glasses, silverware, cutting boards etc.  There was also a playroom, playground, craft area, piano and computer room.  They had tons of crafts, art supplies and games.  And for the older kids, they had gaming systems, computers, ping pong, air hockey and a pool table.  And Reagan's favorite part - a mailbox!  Every day Reagan got to go to her mailbox and see what someone left for her.  There were often snacks, gift bags, or toys.  There was also a filing drawer filled with any toiletries you may need.  Given RMH is not in a nice area of town and many of the guests flew in, it was nice to have all the supplies provided.  Supplies surely donated so there was no charge.  Did I mention the soda machines?  They were stocked with $.25 sodas - that's like 1950's pricing!  This is another idea I have for my kids - to take gift bags to RMH on their birthday to bring a smile to another child's face.  When we checked into our room there was a small stuffed kitty sitting on the table in our room.  These were donated for every child by
Lindsey's parents in memory of a little girl who never went home.  She loved kitties and this is her way of leaving her legacy by bringing a smile to every child who receives one.

As you can tell, I was absolutely captivated by our experience at the Baltimore RMH.  The best way to summarize is that when we were at the hotel it was a jumping off point - a place we would regroup to decide where we were going next.  It was not a place to be.  Moving to RMH allowed us to just BE and to relax. We didn't have to find somewhere to go.  We found our roots at RMH and went to therapy and then came back to find refuge. To find a place to play. To find food.  To find friends.  To find peace.  Almost like a sanctuary from the reality of why we were there.  I realize my children are very blessed to be healthy.  They were not facing the tough journey that many of these children are facing.  And we knew we were going home.  But I've been in these parents' shoes.  Uncertain of what might come next.  Not having answers.  Not sure if my child would live or die.  It takes a lot to run a place like this - money, time and people with the energy to make it happen.  We certainly feel blessed to have been able to stay and while we hope not to return, it's nice to know there are homes like this for the thousands of people who need them every year.

As I prepare the kids for school next week and try to pick out the perfect first day of school outfit and buy their favorite lunch box, I can't stop thinking about all our new friends at RMH who will not be going back to school.  Gabe and Lizzy are not thinking about meeting new friends and learning new things, they are struggling to just avoid infection so they can go home.  We should all keep in mind how blessed we are.  We all have struggles.  We all have challenges.  But we also have blessings…sometimes we just need to be reminded that life is not about stuff.  It's about family.  It's about Hope.  And it's about being present for those who need us most.  And as we each prepare for our tomorrow, I will leave you with a reminder from Day 1: "In my mind, I can do anything."