Monday, April 23, 2018

There is Always Hope!

Today, my girl walked back into her school with her brother, hand-in-hand. 




After being diagnosed with sepsis in May that attacked her respiratory system and forced her surgeon to remove the hardware on the right side of her chest wall, causing it to collapse, Abby's lungs began to fail.  In October, she was officially diagnosed with lung failure and we were told that since she was no longer eligible for a trach due to fusion in her c-spine, there was really nothing else they could do.  We put her in a proverbial bubble and prayed that she would stay healthy.  We celebrated her birthday and Christmas, silently acknowledging that it could be her last.

Once again, God performed a miracle in Abby's life.  Her lungs began to improve and she became less reliant on the ventilator to help her breathe.  We started exploring the idea of her going back to school in the spring.  Abby continued to become more active and was able to play and enjoy time outside without gasping for breath. 

We had many, many meetings as we prepared for Abby's return to school.  Our pediatrician completed a gazillion forms, we typed up detailed notes, her one-on-one was trained, walkthroughs were done, and prescriptions were filled...all in preparation for today.

Cutting off her last countdown link!!


Best Day Ever!!


We will drive her to school because it’s too much equipment to put on the bus every day.


Today, my sweet Abby Joy is officially back in school where she belongs!  Her fabulous one-on-one will be with her every step of the way--the dynamic duo is back together again!





Quite honestly, we weren't sure we would make it to this point.  Back in October, it seemed unlikely that Abby would be well enough to be able to return to school.  While we were realistic, we never gave up hope and prayed that God would improve her health. 

And we are so very thankful that He did!





If you are fighting a medical battle right now, don't give up hope.  Abby is proof that God can perform miracles.








Wednesday, April 18, 2018

5 Days!!




5 short days before Abby heads back to school!  It became real today when we said goodbye to her Home/Hospital teachers.  I’ve been shedding a few very happy tears!  So thankful!!

Friday, April 13, 2018

Amazing News and a Bunch of Thank Yous!

Those of you who are friends with me on Facebook most likely already saw Abby's excited video, but I wanted to share here as well.  Abby will officially be going back to school on April 23rd!!

This start date has been a long time coming with many meetings and we have jumped through about 37 revolving hoops, but we did it!  Our poor pediatrician has been so patient with the paperwork that we kept bringing to him (the school system just kept requiring MORE documentation!) that I got him a gift card for Panera.  He really went above and beyond with all of the paperwork.

Abby is absolutely ecstatic to go back to school.  She seriously cries every night because she misses school and all that comes with it.  Caleb and I secretly made her a chain link countdown while she had her piano lesson yesterday so that there was a visual reminder of how many days left.  He was so sweet and painstakingly decorated each link with her favorite stickers.  It was really cute!

I have to say that while this year at home has not been easy, a few people have really helped to make it a lot easier.  First, Abby's home/hospital teachers, Mrs. M. and Mrs. D. (who also happens to be her one-on-one) have been phenomenal!  They have been diligent in making sure Abby is keeping up with the class and have given Abby many creative assignments to keep her engaged.  We are thankful for both of them and will miss Mrs. M (since Abby will still see Mrs. D. every day!)

Next, Abby's teacher Mrs. G. has been amazing this year!  She has worked so hard to make Skype meaningful for Abby.  Figuring out the ins and outs of virtual learning isn't easy and she has just run with the challenge.  She has really gone above and beyond to make Abby feel included and part of the class.  We are thankful for all she has done to prepare the class for Abby's arrival too. With her guidance, I know it will be a smooth transition.

Last but certainly not least, we are so grateful to my mom, sister, dad, and aunt for their willingness to watch Abby at various times this year!  Between the 6 of us, we have been able to cover Abby's care and allow me to keep working part-time.  I would not have been able to keep working (or have insurance!) if it hadn't been for them.  Because Abby requires treatments multiple times a day, they all had to train to be able to care for her.  In addition, they also worked with Abby on school assignments--this wasn't always a walk in the park!  :)  I know it wasn't easy and we are thankful for their willingness to pitch in and take care of our girl!! My mom has been especially flexible in being willing to watch Abby--even at the last minute.  My family is so amazing!

We so appreciate your prayers and encouragement as we have walked this road this year.  There was a time when I wasn't sure Abby would get back to school at all, but she has improved so much and we are grateful to God for his healing.  He has performed so many miracles in Abby's life and she has quite a story to tell. 

Thursday, April 12, 2018

Disney Cruise With Special Needs: Flying With a Person With Special Needs

Flying with a person with special needs, especially one with a lot of medical equipment, can be daunting.  I'm really glad the first time we flew with Abby was without the bipap, neb, and cough assist!  If my first time was with all of this stuff, I think we might be driving to Vancouver!  :)  This will be a long post with a lot of information, but bare with me. I think you will find my personal experience and the links I share helpful.

My number one piece of advice for flying with a person with special needs is to NOT assume that anything is fine!  Ask about EVERYTHING!  Contact your individual airline's special needs consultant to make sure that any equipment you have is safe for the flight.  Not everything is and sometimes only certain brands/models are allowed.  Certain batteries aren't allowed, so check for any equipment that runs on battery.  It can also vary by airline, so please call and ask.  The last thing you want is to go through security and find that some essential piece of medical equipment is not allowed!  Depending on the medical concerns, you will also need to ask if a letter is required for flight approval from a doctor.  This site will also give you some good information.

Another big help is TSA Cares.  This is run by the Transportation Security Administration and is not for any particular airline.  They will assign a passenger support specialist to you who will help you get through the lines and security much easier.  We didn't use this when we went to Disney World on Abby's Make a Wish trip, but I wish we had.  We didn't have a horrible time in the line, but they did have to pat me down.  I think that would have been avoided with TSA Cares.  We definitely plan on using them for the flight to Vancouver.  I have heard nothing but wonderful things about the program.

When you pack, anything that you will need on the flight will need to be in carry-ons.  There is no limit to the number of medical carry-ons you have, but each MUST ONLY CONTAIN MEDICAL EQUIPMENT AND SUPPLIES!  Don't even attempt to throw a toothbrush in there, because depending on who you get at security, they could make you check (or at least repack) the whole bag.  I've heard a lot of nightmare stories about that, so I'm not even going to try!  Any personal belongings will go into our counted carry-ons.  Also, remember that even medical carry-ons need to adhere to carry-on size limits.  You may end up needing multiple medical carry-ons in order to bring everything you need.  I label all of our medical luggage so that it is easy to spot.

While you can put medical items in checked luggage, I would strongly urge you to consider what you NEED to have when you get to your destination.  Will it be a problem if the luggage containing medical items goes missing for a day or two?  Are the items things you can buy at a drug store, or will they need to be supplied by a Durable Medical Equipment (DME) company?  Anything that you don't want to be without should be included in your carry-ons. 

For us, I carry-on any electronic equipment:  pulse oximeter, feeding pump, bipap, cough assist, portable oxygen concentrator, and nebulizer.  This is all pretty irreplaceable at the last minute and I don't want to spend all day in Vancouver trying to find a replacement before we board the ship!  I will also carry-on all of Abby's feeding bags, a spare feeding tube, nebulizer equipment, and pulse oximeter equipment because they can't be easily replaced at a drug store if the luggage is missing.  All of her medicines (in original packaging) and some syringes go in the carry-ons.  I pack enough formula for 2 nights in our carry-ons and split the rest between all of our suitcases.  The chances of all of them going missing are pretty slim, so we will at least have some!  Also, I can buy Pediasure at a grocery store when we get there if needed.  I also pack sterile water, extra syringes, and extra tubing, humidvents, and filters in the checked luggage because I will already have all of those with our carry-ons.

Note that oxygen canisters CANNOT be taken on the plane.  If a person requires oxygen, he or she must have a portable concentrator.  I've learned that while some DME companies do lend them out to their oxygen customers for air travel, they do not lend them for international flights!  Even though we are going to Alaska, we are flying into Vancouver...so it's an international flight.  We ended up having to buy a portable concentrator because renting one for 10 days was nearly as much as buying one gently used.  It's a big chunk of change and was quite an ordeal, so I'm glad I started the process early.  We just received it yesterday and I'm glad I have a few months to "get to know" it before taking it on the flight.  It's actually really user-friendly and much easier than a canister!

Any machines needed on the plane will need to run on battery power.  You will need to calculate how much battery time you will need, then do time-and-a-half to allow for travel delays.  For us, Abby will be on the bipap and oxygen during the flight.  It is 6 hours of flight time (with a layover in the middle, but you can't rely on having time to charge everything if your first flight runs late), so we are allowing for 9 hours of battery time.  This meant that we had to purchase 2 extra batteries for our bipap and are renting 7 (yes, SEVEN!!!) extra batteries for the oxygen concentrator.  Abby is only on oxygen during the flight because our pulmonologist is worried about altitudes.  She never has an oxygen requirement under normal circumstances, so I didn't see the point in purchasing extra batteries at $200 each just for the flight.  We have one that came with the concentrator and I think that will be fine for us.  We can use the extra ones for the bipap because she uses it so often. 

Some flights do have plugs at each seat, but it is not suggested that you use them for any medical equipment.  They often aren't powerful enough to run the machines and sometimes have been known to ruin them!  We can't afford to lose any of her machines, so we will just be running on battery power.  We also plan on recharging everything during our layover, but have enough battery life that we won't need to rely on it.  Matt and I will be staking out the plugs in the terminal, for sure!

The only machine Abby has that does not have a battery is her nebulizer.  We will do a neb right before boarding and during the layover.  That only takes 15 minutes, so it shouldn't be a problem.  The bipap battery runs the cough assist as well, so we can do that on the plane as needed.

Wheelchairs that collapse can be gate-checked.  The person needing the wheelchair can ride right up to the plane entrance.  If you are unable to walk down the aisle to your seat, you will need to make sure that is clear with the airline's special needs representative.  Having a power wheelchair will need to be checked ahead of time and the person transferred to a fold-up wheelchair to go to the gate.  I've also learned that if you are the first in a flight to request it when you get the terminal on the day of your flight, your collapsible wheelchair can be stowed in the cabin and ready for you as soon as you leave the plane.  Otherwise, you will have to wait until it is unloaded from the cargo area and it could take a while.  We plan to request Abby's be stowed in the cabin because just walking to the terminal will be exhausting for her.  If you need more information about flying with a wheelchair, I found this website helpful.  

Typically, TSA recommends that you arrive at the airport 90 minutes before your flight time.  If someone in your group has special needs, I would suggest getting there at least 2 hours before to allow yourself plenty of time to get through security.  It will most likely take longer than typical people!

As you go through security, make sure that adults are "claiming" any of the medical baggage.  That way, if there are any questions, the kids aren't the ones responsible for it.  Matt and I had the kids "claim" our regular carry-ons and we took care of all of the medical baggage.  Be very upfront with the TSA agent about what each item is and the items that are in medical baggage. Matt and I let the TSA agent know that the carry-on going on the belt contained medical supplies and also identified each piece of medical equipment as we put it on the belt.  I don't know if it was 100% necessary, but it saved us from having to answer a million questions.  You will also most likely have to remove any medical equipment from their carrying cases, so you will want to do that while you are waiting in line if possible.  We did not have to do that with the feeding pump because it was in a carry-on, but I'm certain we will for the oxygen concentrator, cough assist, and bipap. 

The one issue we had was with Abby's Pediasure.  Because it was a liquid that didn't have a prescription on it and was bigger than the allowed amount on the plane, it had to be tested.  Thankfully, I knew this ahead of time and packed extra to allow for that (I always do anyway, just in case!)  They opened a can and dipped some kind of test strip in it.  They also asked if I was willing to be patted down because of "questionable" substances.  I'm not sure what they would have done if I had said no, but I was very agreeable because I didn't want anything to jeopardize our flight!!  (This exact thing is why all medical equipment should be assigned to the adults!)  The TSA agent was a very respectful woman who took me into a private area and told me everything she would need to do.  Although it isn't something I would want to do everyday and I definitely wouldn't want my kids to have to do it, it was as positive of an experience as it could be.  I think that getting TSA Cares involved this time will alleviate any concerns from TSA this time as well.

Abby was not required to walk through the scanner like the rest of us were.  The TSA agent was able to wand her, which was really helpful.  A long time ago when I was pregnant with Caleb and got really dizzy at the airport, they still required me to get out of the wheelchair that they brought me and walk through the scanner by myself. I guess things have changed a bit, or maybe they decided not to press it with a kid!  Either way, I appreciated that they just did the wand over her.

The main thing to remember when flying is that the TSA agents and airline crews are just trying to keep everyone safe.  Most really aren't out to annoy people.  If you are upfront, helpful, and respectful, it should be a pretty smooth process.

Wednesday, April 11, 2018

Tuesday, April 10, 2018

Caught Ya Doing PT!

I learned long ago that PT is much more effective when it is fun and infused into every day activities.  To really improve gross motor skills, you need to be doing frequent movement--not just "going to PT."   I often say we have a therapy lifestyle, where we just incorporate therapy into everything we do.  That means we set up obstacle courses, have gladiator battles standing on stability squares, ice skate around the kitchen, see who can stand on one foot the longest, swing on the disc swing, etc.  Most of the time, Abby doesn't even realize she is doing therapy.  If you have a therapy mindset, you really can get a lot in just by playing!

Last weekend, Abby's cousins were over and they were putting on a show for me, as they often do!  Today's performance was The Lion King, and they were singing, "Can You Feel the Love Tonight?"  There's a rather long musical interlude, so I announced that they should all pretend they are different animals and move around!  They were elephants, chimpanzees, lions, frogs, zebras, etc...and my, oh my, what therapy we got in then!  Here are a few pictures of their antics!

Abby as a lizard (this is a great stretch for her!)


Anna as a lion 


Lucy as a chimpanzee 


Abby as a kicking zebra (she would never do this stretch if it was “real pt!)

Wednesday, April 4, 2018

Disney Cruise With Special Needs: Forms and Help From Disney

I have learned a whole lot during this cruise process about cruising with a child with special needs!  I have seen a lack of blogging for families with special needs, so I thought I would designate some blogs specifically about that to help others.  The thing that really sets Disney apart from other cruises is the support and accommodations they offer for people with special needs.  It's not that other cruise lines don't want to have those with special needs, but Disney has really gone above and beyond.

There are quite a few accommodations Disney offers in the staterooms.  You can see a complete list here.  We didn't need any of them because Abby is ambulatory, but it is nice that they have them!  There's also information about wheelchairs on this page.  I plan to stow Abby's wheeelchair in our stateroom as long as we can find room, but there are wheelchair designated spaces in the ship.  There are also areas to keep them when you go to the theater and restaurants.  We decided not to bring Abby's real wheelchair because it's not very portable and a challenge to collapse.  After looking into a couple of different options, I ended up purchasing this pediatric transfer chair.  It was a great price (especially compared to her real one!) and is actually very substantial.  I was surprised at the quality, for the price!  It folds up wonderfully and is very light.  It will be much easier for stowing on the plane and around the ship. 

It is very important that you complete this form at least 60 days before your cruise if you have a family member with special needs.  There is plenty of room for you to include any additional information.  For example, Abby uses a ventilator, nebulizer, cough assist, an oxygen concentrator, and a feeding pump.  There wasn't a spot to check all of this off, so I included some of it in the additional ifnormation.  Overnight, we need electrical outlets close to her bed for 3 machines that run simultaneously.  I also included that we would be in need of a power strip.  You can't bring these on board, but Disney will provide them upon request for those who are technology dependent. 

A few days after completing this online form, I contacted the Special Services department at the number below.

I confirmed that they had received the online form and that they could accommodate everything.  They could and the man even asked if Abby would need distilled water for the ventilator, which impressed me!  (We don't need it because she has humidivents, but I liked that it was offered!)  He was able to answer any questions I had and was very helpful.

Disney wants to make sure that everyone has a magical trip, so don't be afraid to ask.  The worst they can say is no, but I've been really pleased with how helpful they have been!

I will continue to share our experiences as a special needs family to help others who may be considering a Disney cruise!  Each heading will start with "Disney Cruise With Special Needs" and I will also have that as a label.