Feeding Clinic- The Aftermath

(The first (of many) meal(s) out......Yay!)

Well it is safe to say that the journey to and through Kennedy Krieger did not end the minute we were discharged.  In fact, a huge step in our journey occurred as soon as we arrived at home.  Zac got sick!  I usually like to be the person that shares good news.  In fact, perhaps the major reason why I haven't sent out an update (despite tons of requests) was that I truly didn't know what to say.  We were hoping that Zac would pull through and not need to use his tube (our goal is to go one year tube free).  However, it took about 3 weeks before the doctors were able to find out what was wrong and take care of it.  He's completely fine now.  But the whole ordeal was a bit scary and I didn't want to make others worried when we didn't know what was wrong.  So here is what you missed....

LOTS of exciting things happened when we arrived home.  Our first week back was spent completing school training.  The boys receive breakfast and lunch at school so the staff there needed to be trained in the feeding protocol.  I received the glorious job of being "trainer."  I have to say, that going from "trainee" to "trainer"was a bit nerve-wracking but at the same time solidified for me that no one is going to get the protocol 100% perfect every time.  In fact, it's really hard to when you are dealing with behaviors.  When we arrived home Dom and Zac didn't necessarily "like" to eat, but were beginning to learn that refusing to eat was no longer a choice.  One way or another the food is going to travel into their mouth and down in their bellies.  I had talked to the boys teachers at school before we came home and they were extra curious about when the boys would be arriving back at school.  It seems they were also eagerly anticipating the boys return!

On the boys first day back to school the staff and students lined the entrance when Dom and Zac returned to clap and welcome them back.  The students even helped make the posters that were hung in the entrance in art class.  It's nice to see that Dom and Zac are loved and cared for by so many.  School training went really well.  We are very fortunate that the staff at the boys school really understands and respects how much we want Dom and Zac to be life-long oral feeders.  They really tried their best to implement the protocol and I think the boys will be in good hands.  My favorite part about school training was that they were nice enough to let me hang out briefly while the boys had gym.  The boys are in separate classes this year, so Dom was super excited to be back in the school's therapeutic pool, while Zac was working on his hockey skills.

He was even able to put them to good use when the boys returned to Sled Hockey practice.  We had signed the boys up for their first season this year, but were sad when we realized that we would have to leave town for two months while they were in the hospital.  However, the team never left the boys thoughts.  They painted hockey signs in the playroom at the hospital, were constantly watching Mighty Ducks, and loved listening to "We Are the Champions" on my phone.  So we were excited to make it home in time to watch the team's next game.

Dad, Dom, and Zac at the game

Dom and Zac loved it!  I would never recommend anyone spend any length of time in the hospital if they can avoid it, but it has definitely helped remind me to find perfection in the ordinary.  I really like being home....I can't believe how much I missed it.  And I have no idea how parents of children in the hospital for 6 months, a year, or more do it.  I guess it's amazing what you can do/endure when you have no other choice.  

In the weeks since then, the boys have continued to do well.  We are staying tube free and despite colds and typical sinus issues they have been healthy.  We have been playing lots of sled hockey, and celebrating life as a family.  It's nice to be back in a state of normalcy.  But before I get too comfortable we are heading back down to Baltimore this week for our first follow-up visit.  I'm hoping that we get the Gold Star for feeding performance, but we will have to wait and see.  In the meantime, I hope everyone has a wonderful Easter....God Bless!

P.S.- I have received lots of requests for updates about how the boys are doing.  A few years ago I set up this blog to keep track of our camping trips for my own memory.  I never got too far into it (as you can see!)  However, I am going to give it my best attempt to try to keep everyone updated about how the boys are doing through this.  Subscribe to the RSS feed for updates....or just check in occasionally!  

Feeding Clinic- Week 7

Originally published 2/1/13

Wow! What a difference a week makes.  It seems surreal that we have been here for 7 weeks, and yet it has been an amazing investment in our families future.  Last week the boys had their first “Tube Free” day and, truth be told, they have not used their tubes since!  Their first week as solely oral feeders went fairly well.  The boys are having a difficult time getting their caloric needs in with only three daily meals offered, so we are now having an evening “snack” as well.  Between these four meals they are now getting all the calories (and water!) they need to remain g-tube free!  Woo Hoo!

Our hospital “family” (the other patients, their families, nurses, and doctors) have been celebrating the boys success all week.  It isn’t typical that a child (much less two!) come in taking in only 30% of their daily calories orally and leave with 100% and no reliance on their g-tube.  I think we just came to the right place at the right time with the right people.  Life’s crazy like that....everything always works out one way or another.  You just have to have a little faith.  Thank you to everyone who has believed in us, sent us prayers, added the boys to prayer lists, etc.  I truly believe in the power of prayer, and I don’t take for granted any opportunity that we have been given.  I often wonder how we ended up with such great family/friends.  Now more than ever, I know how blessed we are...Thank you!

We did manage to squeeze some fun into this week.  On Sunday, Mom, Dom, and Zac went on a “dinner date” to Cafe Hon.  We had wanted to go to a restaurant down the road, but it was closed so we ended up there on a whim.  The food was great, the atmosphere adorable, and when we came back to the hospital we discovered that it was recently on an episode of “Restaurant Disasters” with Gordon Ramsey.  I checked Youtube to watch the episode...it was totally worth it! (Check it out when you have time!)  Who knew that Baltimore was so big about the “Hon”?  It was so interesting that I made Justin watch it with me when he arrived.  Which brings us to the second exciting thing to happen to D&Z this week....Dad came!  

Justin started training this week and the boys responded in really well to him feeding them again....until we both fed them together.  Then chaos ensued.  As a result, they are recommending that the boys be fed separately whenever possible (especially at school.)  Hopefully we will be able to fade them back into family meals as they get more adept at eating orally and we are more comfortable with the protocol.  Justin was amazed at how much fluids they are now drinking!  The difference is apparent not only during meals though, their bellies are getting bigger too.  Pretty soon Zac is going to be able to do the “Truffle Shuffle”! haha

!

Dom also became a local celebrity this week....Dom’s case is going to be presented at an upcoming speech-language conference regarding chewing development.  They took videos of him while he was here to show during the conference as well as during a course taught to over 300 SLP’s around the world.  With all the cameras surrounding him he now thinks he’s famous.  I suppose that is why it came as no surprise that he wants his face to be added to the mural outside of the playroom.  I think he would be a handsome addition.  ☺

Yesterday Nana and Papa arrived for training too.  The boys have been so happy to finally have visitors that they rarely want to go to the playroom anymore (their favorite place to visit before their family arrived).  Meals continue to go on with everyone getting trained and bearing through the worst of it to see that the boys truly respond well to the program.  We feel very fortunate that they were able to come and experience the program so we can best carry it over when we get home.  But we also had another great surprise when they came to visit.  They gave up their hotel room for the night so that we could get a decent nights sleep!  I was never so happy to sleep in a real bed....the hospital flip-down chair that has been my “bed” leaves a lot to be desired!  

So really it was a great week....and the best is yet to come!  We are going to be discharged on Monday!  

Feeding Clinic- Week 6

Originally published 1/25/13

My New Years resolution last year was to “Plan Less, Do More.”  Instead of constantly planning what I want to do “some day” I wanted to start making them happen.  It was one of the most enjoyable years I have had.  I took an art class, painting classes, took my first trip without the kids, and just enjoyed life.  It was such a great year that this year as the New Year was about to roll around I began to ponder what I wanted to try to do this year.  I finally decided that this year I want to learn how to Celebrate!  And not just the big stuff: birthdays, anniversaries, etc.  But all the small accomplishments that my family has.  Which is why I am thrilled that today we are celebrating Tube Free Friday.  That’s right!  Effective this morning, NOTHING is going into their g-tubes.  It still seems a bit surreal that this hospitalization has brought about such drastic results, but it has....Even when it hasn’t been easy.  

On Friday I started being trained to feed the boys.  It seems kind of silly that a parent would need to be “trained” to feed their own child.  But, I’m not joking when I say that the boys feeding process now has an official protocol that we will need to follow in order to maintain their growth and continue to make progress.  Meals are still a challenge but by following the protocol the boys are responding well enough to not need to be supplemented any longer via their g-tubes.  If that’s not something to celebrate....then you are reading the wrong update!  ☺

Some meals have gone tremendously well with Zac eating and drinking fairly independently, and Dom needing just a bit of help.  Other meals are really hard.  I guess I’m telling you that because if you happen to see us out to eat (which we probably won’t be doing any time soon, but nonetheless)  please don’t judge us if the meal isn’t going well.  I think we are going to try our best to stay in for a while until we have a better handle on meals, but I know that one day we will be at Red Robin and I’ll be telling the boys “Take a bite.” for the 30th time during the meal (which is according to protocol) and the people next to us will be about ready to scream at me “If he wanted to take a bite he would!”  The therapists have backed us in saying that “Trust me....if you let him continue to not take bites, he never will.”  It’s forced me to readjust my thinking to the whole meal process, but I think overall I’ve accepted it.  Or stated more simply, “I’ve drunk the Kennedy Krieger Kool-Aid and it tastes good.”  The progress is there.  I’m thrilled!

We finally had a chance to see the National Aquarium on Sunday.  It was beautiful.  I didn’t know what to expect.  If you ever go, expect it to take your breathe away.  

It was like walking through a live Nemo movie (minus the storyline of course!).  Dom and Zac saw all of their favorite water animals...even a tank full of Sharks!  They have a whole room devoted to jellyfish.  Zac thought they were amazing and kept giggling like crazy whenever they wiggled up and down.  It was hysterical!

Hopefully, we are going to go back one more time before we head home.  It has been the highlight of our trip so far (minus today of course!)  

Unfortunately, our field trip this week was cancelled due to icy roads (They had a dusting of snow....and were afraid the roads would be too icy! haha!)  In order to curb their disappointment they held a bowling tournament.  Dom and Zac preferred to play bowling on the Wii, but they did join in the festivities for a little bit (the crowd was a bit too rambunctious for them.)  Dom even got a spare!  

He definitely got his dad’s bowling skills!

So all in all it has been a great week...full of fun, excitement, a little bit of stress, and a whole lot to celebrate!  

P.S. Thank you to everyone who has taken the time to send words of encouragement, prayers, good vibes, packages to the hospital, donations to the benefit, and overall encircling our family with lots of love and support throughout our hospitalization.  Justin and I have been overwhelmed by the outpouring of support.  This whole process was made much easier by knowing that we had a cheering squad supporting us and ready to cheer on the boys.  We are excited that our hospitalization is drawing to a close and can’t wait to celebrate all the boys accomplishments once we are home.  I was told that the benefit date has been changed to March 10th due to an accidental double-booking.  The benefit will be a great time to celebrate all the boys hard work, and thankfully, I don’t think it will be our last celebration.  We’re going to keep the g-tubes in for a while, but at some point, if they continue to be successful, we are going to have to “pull the plug” and remove their tubes.  I think the year of celebrations may be our best yet!

Feeding Clinic- Week 5

Originally published 1/18/13

I think that it is fair to say that, without a doubt, this week’s theme has been Stress Management!  And in truth it has come in a lot of unexpected and very fun ways.  

Enter stress reliever(s) #1:  The therapy dog parade!  Every week lots of therapy dogs come to visit the inpatients.  This week their arrival took place in the form of a GIANT therapy dog parade.  There was probably about a dozen therapy dogs here to visit the patients.  It just so happened that the boys were headed down the hall to take a bath when the dogs arrived.  As soon as the dogs began exiting the elevators Zac went running to to check them all out.  He was especially fond of the labradoodle(?)  I’m not sure if that’s the exact name of the breed...but it was adorable all the same!

 

It’s really hard to tell in these pictures but the hallway was full of furry friends.  Zac loved petting them and of course trying to get them to chase him.  

Dom was a bit more unsure.  I think he was worried that they might bark!  But all in all it made for a great evening of fun for the boys.

After we were done visiting with the dogs we entered phase two (and possibly the boys favorite phase!) of our stress management protocol: BATH TIME!  We don’t have a tub/shower in our room...which is a bit of a bummer.  In fact, there are no rooms on our floor with their own shower/tub.  The “Tub Room” is down the hall from our bedroom.  It is without a doubt the boys favorite part of the day.  They know which nurses come to help with baths, and they hunt them down in the afternoon like a fox!  As soon as they see them they shout “BATH! BATH!”  as if they nurses never knew that Dom and Zac like to bathe.  It is a bit hilarious...but not as funny as when the nurses see the boys in the tub for the first time.

It’s safe to say that Dom and Zac LOVE water.  They love swimming and have actually become really good floaters (probably because they spend all summer in Nana & Papa’s pool!)  Anyway, the Tub room has two bathtubs...one is a typical tub you would find in most bathrooms.  The other is a special, extra-large bathtub that raises, lowers, and has jets!  It’s pretty cool...and for Dom and Zac it is big and deep enough to let them swim and dive in the water for a bit.  Of course, when they put Zac in that tub for the first time the first thing he did was dive down.  (I had never thought to mention that they know how to swim.)  The nurse had just turned around for the soap when this happened and by the time he turned back around Zac was beneath the water covered by a surface of bubbles (We love bubble baths!)  I was tending to Dominic in the other tub and turned around when I heard the nurse GASP! and then proceed to almost jump into the tub to “rescue” Zac!  I quickly regained my senses and shouted “He can swim!” Then I nearly died laughing...which thankfully the nurse did too.  I’d love to say that was the only time that has occurred...but it happened again yesterday.  The boys are definitely keeping everyone on their toes!

Perhaps the biggest stress reducer has been due in large part to the fact that we have been staying on the Rehabilitation/Feeding floor of the hospital.  The children staying around us are recovering from illness or injury.  To put it in perspective, about half of the children on our floor have died and been brought back.  Most of which were hit by a vehicle when riding their bikes/ walking in the street.  The other half are recovering from a serious viral illness that comes upon them quickly are leaves them paralyzed.  It really helps put in perspective what’s important in life, and how truly lucky we are to be here solely for the Feeding Clinic.  Ironically, when I speak to most of the other parents here they say the same thing about their situation.  Their child is recovering....the future is a bit unknown, but everyone is staying optimistic and hoping for the best for everyone.  When one person’s child takes their first steps since the accident...everyone on the floor celebrates.  There is a real family atmosphere here, which is really nice since we are far from home.  But thankfully far away does not equal forgotten.  

This week Dom and Zac were over the moon excited to receive some unexpected mail!  

Dom was esctatic to get some cards from his classmates, which he then proceeded to take to show all the nurses (Oh...our poor nurses!)  They also got an awesome book of our family camping vacation.  It was full of all their favorite camping memories (Thank you John and Lorie!)  They love looking through it and talking about home.  I think with all the fun distractions this week their homesickness is behind them.  And there are exciting opportunities ahead.  

On Friday I started feeding the boys again....oh boy!  There are stories to be told about that for another day!  But what I am the most excited about is that last week they began weaning Dom off some of his medications.  One of them suppresses the effects of allergic reactions.  They are weaning him off of it slowly because they are going to try to give him eggs again.  If he doesn’t have a significant reaction we should be able to add that food back to his diet.  I am really hoping that it goes well.  Adding eggs will give him the protein that he needs that will be much easier for him to chew.  He’s still having some difficulty with proteins.  So my fingers are crossed that soon he is eating scrambled eggs for breakfast!  Otherwise, all is well.  The boys are happy again...and we have a fun trip planned to the aquarium this weekend.  Life is good.

Feeding Clinic- Week 4

Originally published 1/11/13

If there were one word that could describe the week we have had it would be:  HOMESICK!  I think that the reality of living in a hospital for the past four weeks has finally hit Dom and Zac.  Unfortunately, while there is a light at the end of the tunnel, that light is about 3 weeks away!

The week started out simply enough.  On Monday we had our “Steering” meeting.  During this meeting the therapists and doctors establish long and short term goals for Dom and Zac.  We are aiming to master the short term goals by the end of our eight week inpatient stay.  The long term goals we will hopefully master once we return home and come back 4-6 weeks later for a “check-up.”  (Yes, once we go home we are going to have to come back occasionally to check up on the status of the boys progress to hopefully prevent them from losing any skills they gained while they were here.  It’s actually a good thing when you think about it.  They are going to continue to support Dom and Zac even after they leave the program.  I like to think of it as the hospital’s way of setting us up to be successful.)  Everyone at the table agreed that Dom and Zac have done tremendous.  However, we need to really focus on keeping them hydrated.  And right now we haven’t really made any progress in motivating them to drink enough water to not need hydration feeds through their g-tubes.  

So we started the week with a little experiment....Dom and Zac were given some glasses with 12oz of water which I was supposed to present to them to drink throughout the day and then bring back to the therapists at the end of the day to see how much they were able to take independently.  

I intended to post “before” and “after” photos, but since they didn’t drink ANYTHING I figured I should just omit the “after.”  It was only Day 1 though....there’s no place to go but up.    

After “steering” things started to go downhill fast.  We usually try to Facetime Justin and Jay every night before bed.  However, this week Zac has been crying “Dada!” and asking to call.  When Justin gets on the phone he cries even louder.  To say it was heartbreaking would be a bit of an understatement.  I don’t think he understands how important it is to stay here...even if the hospital is not the most fun place to be.  He just wants to go home.  It’s all Dom and Zac have talked about all week.  We started a countdown to discharge, but right now I think there are too many boxes to cross off to make it seem like they are going home any time soon.  It is going to be a LONG three weeks if they don’t get out of this funk soon!

I tried to break through the funk in the only way I know how.  I made a scavenger hunt of the John Hopkins hospital.  It has our bucket list of things we we need to check out while we are here.  We started out at the gift shop (come on....I did get to pick the locations after all!)  Then we went to visit the marble statue of Jesus that everyone raves about....it was beautiful and HUGE!  

(Dom is staring at the ceiling because the ceiling was just as beautiful as the statues beneath it.)

We stopped at the “good” cafeteria in Hopkins, the hospital library, and have explored all of the beautiful artwork in the hospital.  Dom and Zac have even started making some artwork of their own!

My last ditch effort to get rid of their homesickness was to redecorate the boys room.  I recruited some nurses and we moved the boys beds around to create more floor space to play.  

It’s a big improvement over our previous set-up that left the boys with basically a 4’x6’ space to play.  If nothing else I hope that it helps them get excited again about “camping in the hospital” and leave all the homesickness behind them.  

But before I forget:  We did have one giant leap forward this week!  Dom and Zac have begun eating together again!  For the past four weeks they have been eating separately with their therapists.  They started out slowly, by having them eating in their separate rooms with the doors open so they could hear sounds from their brother’s room.  On one of these occasions, Dom passed Zac’s room on his way out (he had finished first) and saw Zac sitting there eating.  He threw up his hands and had a look on his face that could only be interpreted to mean “THEY’RE DOING THIS TO YOU TOO!”  They both then screamed in astonishment as Dom continued on his way out.  Yesterday they had their first meal together.  

To everyone’s delight they did very well.  They were incredibly excited to be back together again.  Dom kept blowing kisses at Zac who kept trying to give high fives to Dom.  It was adorable....NOT the most productive eating meal....but you could see that the brotherly love was there.  It was a nice conclusion to our week.  Next week....we tackle the water issue!  

Feeding Clinic- Week 3

Originally published 1/4/13

I think it is safe to say that the one thing I have learned about “hospital life” is that as soon as I adjust to a new schedule/ routine/ procedure...something changes! And I don’t mean that in a bad way.  It is truly amazing to be here watching experts in their field “do their thing” and see the amazing results.  I guess that is why on Friday I shouldn’t have been surprised that less than 20 minutes after sending my update....things changed yet again.   

GUESS WHO IS NO LONGER RECEIVING ANY FORMULA VIA G-TUBE...

THESE GUYS!  Zac AND Dom! Zac is now drinking all of his formula!  I’m not saying he is loving it....but he IS doing it.  So for the record that is Cup-2, Zac-1  ;)

Dom is within 2 ounces of drinking all of his formula.  However, he is just about meeting his caloric needs so they discontinued his g-tube feeds this morning!  

Dom’s allergies have been the biggest challenge when trying to make progress.  It seems that there are many foods/ drinks that he would benefit from, but most contain either egg or dairy.  Since he’s allergic to both it is taking him a bit longer to gain weight...but he IS making slow but steady progress.  He is up to 6 ounces of formula orally!

I’m sure that pic seems weird since we are at the hospital, but we actually went on a field trip!  We visited the Towson Mall.  It was a great mall full of escalators and elevators that Dom and Zac rode to their hearts delight.  They even had a few of the toy helicopter stands in the mall.  Zac has been telling his therapist all about his RC helicopter at home.  It has actually become a bit of a running joke.  Whenever Zac sees one of his therapists they ask him if he played with his helicopter last night.  To which Zac always replies “Yes” and then proceeds to giggle.  He is such a little comedian.  However, the mall was great.  I grabbed some coffee (something my dad would be proud to hear) and grabbed a panini to save for dinner tonight.  

While at the hospital we have also learned to be flexible.  When I lost my favorite water bottle and discovered that they don’t sell any in the hospital gift shop I asked one of the nurses if they had any pitchers I could borrow until Justin was able to ship me one.  The nurse was kind enough to search around and gave me this:

I only wish I was kidding....However, Zac didn’t seem to mind.

(Don’t worry....we didn’t actually use it.  Thankfully my water bottle was found later that evening!)

I also discovered that an emesis bowl makes a great substitute platter to leave cookies out for Santa.  I didn’t know what “emesis” meant until I googled it after a nurse commented on my thriftiness.  

On Monday we have our big “Steering” meeting where the whole team (doctors, nurses, behavior psychologists, speech pathologists, occupational therapists, etc) meet together to discuss the treatment program and establish long and short term goals for both boys.  This morning the nurse practitioner came in and said that she was incredibly pleased with all the progress the boys are making.  She stated, “This is the first time in my career that I am going into steering with the child already off of the g-tube for formula.”  I don’t know how long she has been in the program, but I took it as a sign that we are doing good and perhaps our dream of a g-tube free life is in our not-so-distant future after all.   

Happy New Year everyone!

P.S. Justin and I have been very overwhelmed with all the kind words of encouragement and support throughout our time here.  We have also had an outpouring of support from our families who are hosting a Benefit for Dominic and Zachary.  If you are interested in coming check out:  http://upcoming.yahoo.com/event/10668278/NY/Eden/Proudman-Benefit/American-Legion-Newell-Faulkner-Post-880

It will be held on March 3rd at 1pm (shortly before Dom and Zac’s 11th Birthday.)  The treatment they are receiving here is going to improve their quality of life so much.  It is the best birthday present they could ever receive.  (And for those of you wondering....Yes, we will be home by then.  Dom and Zac would never want to miss a party!)

Feeding Clinic- Week 2

Originally published 12/28/12

They say that the difference between a rut and a grave is how deep it is and how long you have been in it.  That said, I think that for the past four years we have definitely felt like we have been in a rut with respect to D&Z’s feeding difficulties.  But it is hard to know what you can do to improve it when you have no medical background yourself.  Sometimes I feel silly just “feeling” like we could do more for them, without knowing how to necessarily make that happen.  As a result, our trip to Kennedy Krieger has been a bit of a leap of faith.  We have been hoping that we would get some results, but truthfully were willing to accept any sort of progress for what it was...a step in the right direction.  

Thankfully, I am ECSTATIC to report that we have taken our first step toward decreasing both boys g-tube dependence!  After completing the boys initial evaluations they were able to calculate the amount of food/ drink that D&Z need to be consuming and start to analyze what steps we can take to decrease their dependence.  Right now, we need to have them eating 8 ounces of solid foods for each meal AND drink another 8 ounces of their high calorie formulas during each meal plus an ungodly amount of water.  They have been reducing the texture of their food from “regular texture” to “wet ground”.  (Wet ground is basically the consistency of oatmeal.)  When given the wet ground textured food they are currently consuming all 8 ounces for each meal!  And...with the therapy they are receiving they are now drinking their formula!  (For those of you keeping score that would be Zac-1 Cup- 1)  Zac is now taking 5 OUNCES per meal!  Dom is taking 2.5 ounces per meal.  This is huge considering they were 100% dependent on their g-tubes for formula prior to admission.  The trick is going to be keeping up with their fluid needs once they are placed back on regular texture.  By giving them wet ground food it is safer for them to eat (AKA less risk for choking/gagging) and it is increasing the amount of water they are taking in at meals.  They need to add water to make it the wet ground texture.)  So it is a huge step in the right direction!  The best news of all was that the doctor notified me last night that they are going to, and I quote, “Start the boys on their first g-tube decrease.”  They are going to start receiving less formula via g-tube and be monitored to see how it impacts their weight.  What was especially exciting to me was the way they phrased it.  You see, if they are going to have their “first g-tube decrease” it means that there could be a second, or third in their future!  It is all very exciting (and yes...I did tear up when they gave us the good news.   This whole process has been very exciting and overwhelming!)

Lots of other good stuff also happened this week.  I saw my first cockroach!  I screamed as it wiggled on the hospital floor; Zac rushed ahead and then proceeded to stomp on it.  It should be noted that no one rushed to my aide when I screamed for dear life.  Thank goodness Zac was there with his swift stomping ability.  When I did finally mention it to hospital staff they calmly said, “This is the city.  We get them here.”  I nearly died...and have not been sleeping as peacefully ever since!  

We also had visitors this week!  Justin and Jay came up for the holidays!  We ended up having to open presents in the lobby since it is RSV season and children under the age of 17 are not allowed beyond that point.  But for what it was, it was perfect.  It was nice to see the boys hanging out, enjoying their toys, and having a chance to spend time with one another.

But Christmas Eve was my favorite.  We took a TLOA (Therapeutic Leave of Absence) and left the hospital for 3 hours!  I know we were really living on the edge!)  One of our nurses told us about a Christmas display on 34th Street and we figured we would check it out.  It was BEAUTIFUL!  Dom and Zac’s eyes lit up when they saw all the lights and displays.  It was really

cool!

Afterwards we headed back to the Ronald McDonald House to meet Santa, hang out, and play a few games of air hockey.  It was untraditional, but fun.  I’m very grateful that we were able to spend the time together. 

 

I hope everyone enjoyed their holidays...I know that I did!  I can’t wait to see what blessings the new year brings!  Happy New Year!