A G-tube for Annalise

On the 24th of this month it will be eight years since Bryce had his feeding tube placed.  He had been losing weight for 8 months by this time despite our constant (sometimes drastic) efforts to get in enough calories so that he would gain weight and avoid having to get the tube.  I dreaded that day, but it did come and I soon learned what a blessing it would be having that tube.  We were suddenly able to get all of his meds in without an issue.  We were able to get him enough calories and decrease so much stress we had all been through the previous months.  About six months later when he suddenly lost the ability to suck and swallow correctly we were so thankful we had a way to feed him.  Then when I learned about and changed his feeds into a blended diet of real food, the miracles really began to show up.  Having that tube placed was one of the toughest decisions at the time, but we have never regretted it and many times have been very thankful for it.

Because of our experience with Bryce and his feeding tube, I've always thought/said that if there ever came a time when Annalise needed a feeding tube it would be an easy decision.  This month I have found out that when that decision suddenly became a reality it was not actually as easy as I thought it would be.  The time has come and the decision to move forward with it has been a difficult one.

Annalise has dealt with dehydration issues for years.  Her gastroenterologist has mentioned the possibility of a tube many times in the past, it's always been something in the back of our mind as a possibility in the future although we always hoped that day wouldn't come for her and have done what we could to delay it.  Well, this year has been tough on her.  With each illness that she has had, she has become dehydrated within hours which takes her medical needs to a whole new level as we work around the clock to balance everything out.  It has gotten progressively worse throughout the year.  The month before her last GI appointment she had two major crashes, each one wiped her out for almost a week.  One was after a virus that spread through most of the family lasting about 2 days in everyone except Annalise.  The other was without any illness, just not enough to eat/drink while in the care of a new provider.

She also fatigues very quickly when she eats and she doesn't get hungry very often, so eating becomes a big chore and challenge for her.  We have tried lots of different things, but she struggles.  She hasn't been able to eat meat or raw veggies...basically anything hard for a long time.  She used to do smoothies/purees pretty well, but now only takes sips of them.  She just can't seem to get enough good nutrition in and never enough fluids.  She is always so physically tired.

So, when we met with Dr. McOmber and he said that he felt it was time to really consider a g-tube to supplement what she can eat, we decided to seriously consider it.  I knew that time was coming close before he said anything.  He said that we didn't have to do it right now, but that he is really concerned with how quickly and hard she has been crashing recently with any little bump in her health.  He said that when she gets dehydrated and then so sick because of it the fear with her condition is that it can cause more neuro-muscular regression.  The neurological issues she goes through during these "crashes" have definitely become more obvious as well over the past year.  Bryce was with us at the appointment and Dr. McOmber pointed out how well Bryce has been doing since we began feeding him green love (smoothies) and real food through his tube.  He actually told Annalise, "we need to get more green love into you!"  I love that he has come so far around from the way he was when we began.  It's awesome to see him now and remember what a challenge it was to get him and the nutritionist to accept the idea of feeding my boy real food.  He didn't even mention formula through the tube for Annalise, just that I need to get more of what Bryce eats into her.  😄

So, why has this decision been tougher then I expected?  Well for one, Dr. McOmber gave us the name of a surgeon and told us that the decision whether to get it placed now or wait a bit longer was really up to us.  He told me that he wasn't saying that we HAD to place the tube as a medical emergency now, just that he feels it is something we need to seriously consider.  So the ball was very much in my court and deciding what to do instead of being told what needs to be done was tough for me.  I guess because I know what needs to happen but I really want another option.

The second thing is that Annalise really does not want a g-tube.  She used to.  She used to ask us all the time when she would be getting a tube like Bryce.  She has grown up a little and unfortunately has a lot more anxiety regarding anything having to do with doctors.  I get it.  She has been through a lot. She has multiple reasons, but has made it very clear that she does not want to get or have a tube.

The third and really big reason this is so hard is because it's surgery!  Yes, it's an easy procedure, but it is still surgery and that is always scary and filled with risks.  But after a lot of talking, praying, and fasting John and I decided that the benefits outweigh the risks and we do feel that it is a necessary thing to do so we began moving forward with that decision.  We debated whether it would be better to wait until after cold/flu season to get it placed, but the very real possibility of her getting seriously sick again before that helped us decide to go ahead and call the surgeon.  I figured it would be a while before they could get us in anyway so we would have some time to process it all and help Annalise work through it.

I called and the surgeon was able to see us the following week.  She began talking about how the tube is placed and Annalise said, "No thank you!"  Ha ha!  At least she was polite.  At the end of the appointment the surgeon told me that someone would be calling me in a week or two to schedule the surgery.  Today, only 3 days after meeting with the surgeon I got a call saying that the surgery had been scheduled for September 28th.  Less then two weeks away! 😲 I was not expecting it to be so soon and that has sent me into a bit of a panic, but we continue to breathe and pray about it.  Although shaky, it still feels that we are on the right path so we will continue moving forward unless something changes.  Please keep our girl in your thoughts and prayers over the next couple of weeks.  I have a feeling they may be a bit rough.    

Guidance

I am so happy when things start to open up and I can see a slight light in the tunnel! A few things have come up and we have some new decisions to make. Life definitely gets a bit more challenging (and expensive) when the medical world has no answers and yet the issues continue or morph into something slightly different. It's good to be unique and I love a good challenge, but my children continue to take it a bit too far for my liking. 😃 The past few days I've been working on moving forward with what we feel we need to do and by Monday night I was so frustrated as everywhere I turned seem to lead to a roadblock or dead-end. I had no idea where to look next or how we would be able to do what needs to be done. I went to bed and just kept praying that something would open up and that I would know which direction to go. Well, yesterday morning the prayers began to be answered. I was led to websites and received a phone call that has helped to make things a bit clearer. I still have many unanswered questions and concerns regarding all of this, but I feel we are once again heading in the right direction. Within the next two weeks we will be adding 4 (possibly 5) new specialists to our "team". We met one yesterday and she seems to be a good fit. Some decisions are so hard to make. I am very thankful for the guidance and continued support we receive as we attempt to navigate the best way we know how.

April 23 At the Village

We have had a very busy couple of months.  It's hard to get to the writing about all the fun when you are busy making more memories, but I'll do what I can.  We just returned from a trip to Tennessee for a Clayton family reunion which I will write about soon, but first I must finish sharing all about Annalise's wonderful trip.  We do not have any more traveling planned for the year, so maybe I can get caught up a bit.  School and all it's craziness does start in just over a week though, so we shall see!

 

So Thursday, day two of our trip, began with John getting a ride back to the airport to pick up our other rental car.  As I mentioned, there had been some mix-ups with a vehicle for our family and by the time we realized that Make-A-Wish had not reserved a wheelchair van for our family it was too late and unfortunately there were none available.  So a couple of days before our trip we got it worked out as best we all could.  We ended up using a stow and go van that had seats that could fold down so that we could get the wheelchairs in.   With the chairs folded down, that only gave us room for 5 people and thus the need for an additional car.  So wherever we went as a family, we would take both vehicles and caravan to our destination.  At first it was kind of a bummer, but it ended up working out fine.  A couple of the nights John and the older boys wanted to stay at the park later and since we had two vehicles, I was able to go back to the village with Bryce and Annalise which worked out well. 

 

So anyway, Thursday morning John grabbed a quick breakfast from the breakfast cart that goes around GKTW Village and headed off to the airport.  While he was away, the kids and I checked out the village. 

 

Our first stop was the Gingerbread House for breakfast.  While we were there, they were doing some construction on/near this building so we went in the side door instead of the front.  The new building that they were working on looks like it will be very nice.  This place is great.  They have volunteers who carry your tray to your table and get drinks and other items that you may need. 

 

I was a little worried about what they may have for Spencer, but when we got there and I explained that he has Celiac Disease, the volunteer I was speaking with immediately got one of the head staff members there to help us out.  She asked Spencer what he wanted and soon returned with pancakes, waffles, eggs, sausage, fruit, etc...all safe for a child with Celiac Disease. 

Annalise loved the whipped cream and strawberries.  Who needs a waffle when you can just have the toppings.  The second morning we were there she discovered the chocolate doughnuts and had one every other morning that we were there.   I would sneak bites of egg and fruit in to her between her bites of doughnut. 

Since Bryce doesn't eat anything by mouth anymore, he usually entertained himself with the iPad while the rest of us ate.  We would feed him either before or after we had our breakfast. 

 

Our next stop was the Enchanted Carousel. 

This carousel brought back some fantastic memories.  This was Bryce's favorite thing when we were there 5 years ago for his wish.  It was so fun to see him on it again. 

We rode multiple times, Annalise choosing a different animal each time. 

 

The older boys weren't thrilled about riding the carousel, but they were good sports and rode along with us.

 

 

 

Spencer and Bryce hanging out by the snoring tree.  Old Elmer I think is his name. 

Next we stopped at the Ice Cream Palace.  Ice cream for breakfast is a must at GKTW. 

 

We asked in the Ice Cream Palace about gluten free ice cream.  We were told that they did not have any, but they had some popsicles that were safe.  Later another lady came in and we found out that they did indeed have Celiac Safe ice cream.  It was just kept in the back and the volunteer we had spoken to at first had not known about it.  Spencer was very happy with that discovery. 

 

 

Our days in Florida were so packed that there is just too much information and too many pictures to share in one post so I will continue with the rest of our day in another post.  It sure felt great to be back at the village!

The Day has Finally Arrived!

April 22, seven months after Annalise's first visit with her wish granters, the day of her wish trip finally arrived.  Her ride arrived at 7:30 to take our family to the airport. 

Definitely a sweet ride!

Because of the size of our family and the fact that we have the two wheelchairs, they brought a van along as well as the limo to carry the chairs and all the extra luggage. 

We really were all very excited.  The sun was just very bright at this time of the morning.   

Our family with our limo and van drivers.  They were super nice and very helpful men.

Amber, one of Bryce and Annalise's caregivers came to help get Bryce and Annalise ready for the day as I finished up with all the last minute duties for the trip.  See those leaves in Annalise's hands?  Remember them.  They will come up again in a bit. 

 

Annalise looking cute in William's glasses. 

Amber checking out the inside of the limo before we headed off.  We wish we could have tucked her away in one of our suitcases and taken her with us. 

It was fun to see the looks on people's faces as they drove by our limo.  I wasn't quick enough to get a picture, but somewhere along I-10 we noticed someone taking a picture of us as he drove by.  As John looked closer, he recognized the man as someone from his work. 

 

Bryce wasn't so sure (okay he was terrified) about riding in the limo without the safety of his wheelchair.  He clung to my arm the entire way to the airport. 

About 10 minutes before we arrived at the airport, Bryce finally lifted his head up and looked around a little bit.  I was even able to get a little grin out of him. 

Arriving at the airport 

 

Annalise's wish granters, Jeff and Mindy Clark, were there to help us.

Remember those leaves Annalise was playing with before we left our house.  As we got to the airport, she saw them again and began playing with them and rubbing them on her face.  It took about a minute before she started sneezing and having itchy watery eyes.  We were able to get them away from her and get her all washed off and luckily the allergy symptoms went away without too much problem.  Luckily we didn't have to give her Benadryl which makes her hyper and irritable.  It's not what you would expect it to do nor is it what you would want while on a plane ride.   Luckily she cleared up without needing that.

Jeff and the Southwest employee who was assigned to help our family get through security.  That was definitely a nice touch!

 

Annalise taking a look at the little gifts she received from Southwest Airlines. 

Our beautiful wish kid!

While in the airport, the little sling seat that helps support Annalise's in her walker broke and we could not find the little attachment piece.  Jeff rigged something up for it and luckily it held throughout the trip.  I still need to get a replacement seat for her. 

 

I think she may be getting a little long for these changing stations. 

As we were waiting for our flight, this nice man began talking with me.  He said that he was a music therapist.  He works with adults who are on hospice.  He had his autoharp along with him and asked if Annalise would like to play it.  She, of course, loved it!

Heading down the ramp!  The gate agent (here in the white shirt) was so kind.  He was having fun helping with Bryce.  He even got him out of his chair and carried him into the plane for us.  That was a nice surprise.

Unfortunately Bryce needed a diaper change even before we took off.  If you think the changing tables are small in regular restrooms, you should see the ones on a plane!  Changing him there was quite the trick. 

Although his feet hung into the sink, we were able to avoid turning on the water during the change. 

Bryce was a little freaked out at the beginning of the flight, but soon calmed down and began looking around.  He and the rest of the kids all did great throughout the flights. 

 

Our greeter Phil found us and soon we were on the shuttle out to Give Kids the World Village.  Make A Wish had also scheduled a couple of rental cars for us, but do to a little miscommunication the GKTW village people didn't know about that and had the shuttle take us right to the Village.  John had to get a ride back to the airport later that night to get one of the cars.  He would then return the next morning to get the van.  Kind of  a hassle, but finally we all arrived!

Our Villa



We got in pretty late so we checked in and headed over to our villa.  Here are some of the surprises we had waiting for us in our villa. 

During our check in, the GKTW Village volunteer gave Annalise this Mickey doll and a little whale to each of the other children.  The pink dolphin here is one that John and I brought back to Annalise from our cruise in February. 

Annalise lined all of her stuffed animals and new toys up and said it was time for a family picture.  What a great family. 

 

 It took everyone quite a while to get calmed down and settled in for the night.  We were all so excited to be there.   Annalise insisted on sleeping with all of her new friends so that none of them would get lonely.  :)  She is such a good little mommy!