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!

Feeding Clinic- Week 1

Originally published 12/21/12

Well our first “business week” at Kennedy Krieger is quickly drawing to a close and I thought that perhaps the best way to keep everyone informed about what is going on may be a virtual letter.  It has been a very busy week for the boys.

Our trip down to Maryland was great thanks to our speedy driver (thanks Justin!)  I was able to even get some knitting done!  (Note to self:  That will probably be the last time I am knitting for the next 8 weeks.  haha!)  We went out to Bubba Gumps for dinner Sunday night for the boys “last meal.”  It was right across from the hotel at the inner harbor and was loads of fun.  The food was delish and Justin and I had a great time playing Forest Gump trivia.  We didn’t do too bad, either.  It’s too bad there aren’t any near us in Buffalo.  The food was delish and the whole experience was lots of fun.  The restaurant concept was very cool.  The menus were ping pong paddles, the boys food came in little ships, and everything was delish!  Of course Dom and Zac’s favorite was the blue Jell-o.

Our arrival at the hospital was truthfully nothing short of a whirlwind.  Despite my determinedness to go alone it was very nice to have Justin there to lend a hand.  The hospital was busy, VERY loud, and has taken quite a bit for Dom to get used to.  After we signed in the meetings began.  I don’t think that Justin even had a chance to catch his breath as we were ushered from one meeting to the next and then he had to leave.

Our “condo” is lovely (see pictures below!)  The boys have tents on their beds to keep them from escaping in the middle of the night.  They actually really like them and keep talking about how we are camping in the hospital.  Since there are two tents in our room the sleeping quarters are tight.  However, we have still managed to have fun crafting (thank you for all the crafting Christmas presents!) and hanging out with the nurses.  

My bed leaves something to be desired…However, it’s funny talking to some of the other moms here.  The joke is that “you know you’ve been here too long when you accidentally put a hole in your egg crate when you are setting up your bed at night.”  So far mine is pristine….but if putting a hole in mine might mean we get to go home sooner I might consider putting a hole in mine just so we can be home for Christmas.

Thankfully the hospital has actually had a few Christmas activities to help provide a diversion from missing home.  So far we have had visits from Christmas carolers….

and the police!  (Sorry for the terrible pictures…I took them with my camera, but forgot the cable to download them on my computer at home.  As a result, I had to take pictures of the pictures with my iPhone….)

There are more and more visitors arriving each day.  I think Zac is really enjoying the attention and holiday activities.  Dom has enjoyed watching at them from afar.  He is really struggling with adapting to hospital life….but he is getting better each day.  I’m sure that in a few more days he is going to be giving people the grand tour!  In the meantime he is busy charming all of our nurses!  Haha!

But I should probably talk about the real reason we are here.  So far they have been conducting a lot of assessments regarding feeding/drinking for both boys.  They are being their typical selves…which is good.  It gives the specialists a realistic picture of what we are dealing with daily.  I was able to record one of their sessions.  I like to call this one “Zac vs. the Cup.”  ****I have tried all day to upload the video with no luck.  I’ll have Justin show me how once he comes up next week!  In short, the cup lost the battle and its contents ended up all over the table.  Zac-1, Cup-0*** All the therapists have been pleased with the amount that both boys are eating orally and feel like decreasing their dependence on g-tubes is realistic.  We just have to get them drinking!  What that looks like…I’m not exactly sure.  But as long as they are moving in a positive direction I’m taking it as a good sign!  I’ll keep you all posted!

Sensory Friendly Films

As long as I can remember my only wish has been that despite any challenge that D&Z face that they have as normal of a childhood as humanly possible.  So like any other parent a few years ago we thought it was time for them to experience their first feature film!  At the time they were completely consumed with Shrek, so when Shrek 2 was announced it seemed a perfect fit.  What we failed to consider was that the opening film previews for Shrek 2 would be for loud action films.  I'll never forget the preview for Transformers coming on and Dom having a complete meltdown. 

We almost left....it was that bad.  However, we stepped out for a bit and returned once the movie had started.  The movie was loud, the theater was dark and scary to them.  It was not the bet of experiences (despite our good intentions.)  That is why when a friend of mine recently told me about Sensory Friendly movies I had to take some time to mull it over.  Would they truly benefit from trying again.  Granted they were older, but I didn't want to have the same disasterous result.  But I looked into it and this is what I found.

• A sensory friendly movie is simply a movie meant to be enjoyed by everyone.  The theater has the lights turned up, the sound turned down, and audience members are allowed to get up, talk, dance, shout, (or even roll down the aisles as we saw some children do. haha!)  Essentially it is an opportuntiy for everyone to come together to watch a movie without fear of being judged because your child is acting inappropriately.  Sensory Friendly are not just for people with developmental disabilities.  There were also some families with young children who were out for their first movie.  I loved that.  :)
• The people that ran the sensory friendly movie and concession stand were amazing!  When Dom kept leaving the theater to visit the game machines they didn't care.  And since the movie is usually a matinee there was no one else in the theater to have to worry about him getting lost or in any sort of danger.  It was perfect!

When we finally arrive at our theater we selected our seats (spilled our pop all over the floor Oops!) and then relocated so the cleaners could clean up.  The movie started and I have to say...it was an amazing thing to watch.  D&Z were calm with the lights on, the sound volume was perfect (no louder than our normal television) and when we had to get up to move around or use the restroom it was no big deal.  There was probably a total of thirty people in the theater an no one was concerned or bothered by what anyone else was doing.  It was a great experience that I wanted to pass along to others. 

If you are interested in trying out a sensory friendly movie click the link below.  It heads directly to the AMC website.  They hold these movies all over the country so there is a good chance that there is one near you.  Enjoy the movies!

http://www.amctheatres.com/programs/sensory-friendly-filmshttp://www.amctheatres.com/programs/sensory-friendly-films

Gearing Up!

Ok....We are approximately 20 days away from our first camping trip of the 2012 season and gearing up for another year of fun and adventure!  With the help of Pinterest I have been able to create a HUGE collection of fun ideas to do with the boys this year during our camping trips.  I can't wait to try out the glowstick in bubble solution to make glow in the dark bubbles!  Since they were born D&Z have always been faithful about getting 10 hours of sleep.  However, since they turned 10 years old they somehow decided that they need to stay up later.  There are pros and cons to this new development.  It's great to see them for an extra hour (Last night we were able to take them outside to see the BEAUTIFUL moon!)  However, it definitely means that I am getting a lot less done!  haha!  The tradeoff is well worth it!


Unfortunately, we just found out that one of the boys has a severe milk allergy that we were not aware of.  As a result, many of my fun meal ideas are no longer going to happen.  It's funny because one thing I have always said was despite their challenges, I was thankful that we never had any allergies to worry about!  haha!  Karma came and bit me in the butt!  While I'm learning more about how to adapt my cooking, I also need to come up with some fun new camping recipes!   It will definitely be a fun adventure!  


Now that the weather is nice outside, it is time to start checking and packing the camper.  We generally keep our camper well stocked (it has an extra set of dishes/pots/pans) so I don't have to keep moving things from the main house into the camper for each camping trip.  However, I created a simple checklist of all things that we need in order to have a happy camping trip.  Your list will undoubtedly be different, but feel free to use mine as a jumping off point as you create your own.  I print out a new checklist for each camping trip and put in in a clipboard to check off before we leave.  Some of the items may seem obvious (ex. camper keys), however when you are rushed to leave....even those can sometimes be forgotten!  Thank goodness for good friends who will bring them to you!  Enjoy the checklist, modify as needed, and Happy Camping!

Pinterest Camping Board

Camping Checklist

This Is What Success Looks Like

Many people decide to go on vacation with an elaborate scheme and itinerary of events to follow. While I definitely have done that in my pre-marital days I can also say with certainty that those days are definitely over. Instead, our vacations tend to involve lots of relaxing time and quick little day trips that we incorporate into our days as we travel. This year's trip to the beautiful Presque Isle was no exception. While, I certainly didn't have time to lay in the sand working on my tan, I did enjoy lots of time splashing in the waves with D&Z. We stayed at Sara's Campground located right outside of Presque Isle State Park. There is no camping allowed in the park, but this campground is literally right next to Presque Isle so we could walk there from our campsite if we wanted to. While researching this vacation I discovered that Presque Isle is visited more times each season than Yellowstone. After visiting the park I can see why.

Here are just a few of my favorites:

• The campground was clean (including the bathrooms!)
• There is a nice restaurant with the best ice cream right at the campground. The creamsicle ice-cream is delicious!
• No fee for admission to the state park
• No fee for parking at the state park (as a native New Yorker I am used to being charged for EVERYTHING! Not being charged to visit the beach was a major advantage to me.
• Beach #11 was perfect for little ones or little guys that aren't the best of swimmers. The waves were nice and small and the bottom was sand. (Beach #1 in contrast has a rock bottom that made my feet extra sore!)
• Some beaches have wheelchair lookouts for accessibility. You have to watch out though, not all beaches offer this feature.
• Presque Isle is located right in Erie PA. You are literally a 15 minute ride from pretty much anywhere you would want to visit in the city.

Campground CONS:

• The campground is located somewhere near a train. It drives by at all hours of the day and night (sounding off it's horn, of course!) I am a light sleeper and was woken up every time it drove by. In contrast, my husband (who sleeps like a rock) didn't believe me until he heard it during the daytime. The train horn didn't bother him one bit.

We also ventured to the Erie Zoo. I was amazed by the accessibility found throughout Erie, PA. The Zoo had ramps and elevators everywhere. We were never "stuck" wanting to go somewhere without the ability to reach it. I was very impressed by this. The zoo offered great views of the animals and lots of cute centers for the kiddos (the train was a favorite!) I would definitely return to the zoo again. It was cute, clean, and a whole bunch of fun! We had so much fun over vacation that we even began to plan for next year. Now the only question is.....North Carolina or South Carolina?