The Birthday Quilt

It is only natural for every parent to have certain hopes and dreams for their children. However, those hopes and dreams for Nathan have changed and evolved over the past 5 years but the one thing that has stayed the same is our desire for Nathan to live a long, fulfilling and happy life surrounded by the love that comes from sincere and meaningful relationships. With that said, it has been sad and heartbreaking at times seeing how difficult it has been for Nathan to form close friendships and for him to feel like a regular 4th grader who is accepted by his peers. Nathan has many challenges that make it hard for him to learn in the regular classroom with the other kids and therefore he spends majority of his day in the Learning Lab (Special Ed classroom). Unfortunately, Nathan does not get to go into the regular classroom as often as he would like and when he does it is for very short periods of time.

Earlier in the year, his general education teacher brought in a quilted jacket of hers and let Nathan try it on. She said that Nathan loved wearing her jacket and wore it for 3 days straight. While I’m not sure exactly why he loved that quilted jacket so much but I’m guessing it may be because it had different swath’s of fabric with different textures so he could feel the jacket with his fingers. As it turns out, a surprise birthday quilt project was sparked from the jacket he wore.

The last day of school before Spring Break, we let Nathan take goodies in for his birthday celebration. His birthday always falls on Spring Break so he never gets to celebrate on his actual birthday. Unbeknownst to us, there were many people involved in this project for Nathan and they had hoped it would be ready in time to present it to Nathan on the last day before break. Each child in the classroom was tasked with going home and finding a textured piece of fabric. The teachers and children brought in buttons and fabric made up of such things as sports jerseys, curtains, blankets and shirts. Then, many hours were spent sewing and putting the birthday quilt together.

As a Mother, this gesture was honestly one of the most thoughtful and wonderful gifts he could have received. I have often worried about Nathan not being able to spend much time in the general classroom around his peers and that the other kids would start to forget about him. That is why this was such a great gift that had so much love sewn into it and for the first time I felt like Nathan has been accepted by his peers and that they have not forgotten about him. After the teachers presented it to him during class, Nathan was so happy and came home excited to show Jay the quilt that “all of his friends and teachers” made for him. That made my heart so happy because for the first time he didn’t come home and tell us that he didn’t have any friends.

This year I have noticed the children being very kind to Nathan. I think at this age they understand his struggles a little more and are reaching out to him in ways that I have not seen before. It has been nice when I pick him up and kids run up to my car just to say hi to him or give him a high-five. One classmate wrote him a letter that melted my heart. I had to call his Mom just to tell her how much it meant to Nathan and me to hear what he had to say about his friendship with Nathan.
With as much as we have been through and as much as we have yet to face, this was a moment that I just wanted to hold on to with everything I had. It just felt, if only for a moment, that everything was going to be ok.

I’d like to close with a plea for more prayers for Nathan and our family. Tomorrow morning is perhaps the most frightening appointment at Children’s Hospital that we have had to face thus far. We will be getting the genetic test results back where they have been testing for up to 230 various disorders including Degenerative Neurological Disorders. We have been waiting for these results since last November when his blood work was sent off to Harvard University. We are in desperate need for some good news. A positive test result for one of these disorders could be life threatening and life shortening.

From the bottom of our hearts, we thank you.
Stacey

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Update on Nathan

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I know I am not the most eloquent writer, but I write this with an honest and heavy heart.  The last few weeks have been hard on us to say the least.  We are emotionally and physically drained.  We have received what seems like blow after blow and I would be lying if I said I was not ready for some good news.  

We took Nathan in for his MRI and EEG on March 4.  He went under general anesthesia and had the MRI.  He was and is always so brave at doctors’ offices and hospitals.  He came out of the anesthesia very agitated.  They had an IV in his hand and he was not happy about it.  The nurses could not seem to get an accurate answer if he would need it at the EEG unit and they did not want to take it out in case they had to put it back in.  After the recovery room, the wheeled him up to the Epilepsy Monitoring Unit and were able to remove the IV.  He was much calmer after that came out.  We then spent about an hour and a half with them hooking up all the electrodes to his head.  He lay on the bed so patiently while the technician used a sharpie to mark his head and glue that stunk and then finally wrapped his head with gauze.  He had to carry around a pouch with the monitor if he got off the bed.  He was very pleasant the whole time we were there.  I had been nervous that keeping him in a room for 24 hours would be more difficult, but once again, he just amazed me.  I would love to say that the sleeping arrangements for Jay and me were ideal, but let’s just say, I got to snuggle with Jay’s feet that nightJ

The next morning the Doctors came in and told us that his EEG was normal!  There were no signs of the min seizures that they were looking for.  They did say that his brain slowed down at night, which is indicative of all the things that are going on with him.  We really don’t know what that means, but do have another big appointment coming up that we will have a chance to talk in depth more about all of this.

On Friday, March 7th I received a voicemail from Nathan’s Neurologist that went over the results of his MRI.  I was glad that he left a voicemail since there was no way I could have ever repeated the information to Jay.  It made it easy for Jay to listen to it himself.  His comment was that Nathan had “Progressive diffuse cerebral and cerebellar volume loss since 4/2012”  They compared this MRI to the one they did in 2012 and have determined that there is volume loss to his brain.  Basically he has lost brain matter.  He said clinically, it is what was expected, but still they do not have a reason as to why.

Next up, was our Ophthalmology appointment on March 13.  That was terrible news.  We were told that his eyes were significantly worse since November, 2013.  He said that he is basically almost completely blind and considers him “light perception” only. All of this information together just got to be too much to hear.  We are completely devastated by the fact that 5 years ago, we had a healthy little boy who we never would have imagined this would happen.  I don’t know why this is happening.  Jay and I unfortunately are in the place where we are racking our brains trying to figure out what we may have done to cause all of this.  I know in my heart that we did not do anything, but as a parent, I can’t help but feel responsible.

On April 1st, we will meet with the Neurologist and the Mitochondrial DNA department heads to hopefully get the results of the DNA they took back in November.  It was sent to Harvard for analysis.  The tests that they are looking for are life threatening/ life shortening illnesses.  The fact of the matter is

that we have to somehow gear ourselves up to hear potentially bad news and for the life of me, I don’t know how to do that.  

Something is going on with Nathan.  He is regressing in a way that no one understands.  It is always so frustrating when you take him to the best of the best Doctors and they just don’t know.  The truth is that on April 1st those tests may not reveal anything and we would have to go to a 3rd round of DNA testing, which would mean another 4-6 month waiting period.  We need answers so that we can help Nathan.  

I would desperately like to ask all of you to please say a prayer for Nathan as well as our whole family.  This affects Madison, Jay and me in a way that I can’t describe.  

Thank you,

Stacey

 

My Daddy…

It has been a really rough couple of weeks around here. My Dad, Nathan and Madison’s Papa, had carotid artery surgery on January 30th. The recovery was not the best. He was tired and he did not really have much energy after the surgery. He was sore and just not his usual self. On February 15th it got to the point where he needed to be taken to the Emergency Room. If anyone knows my Dad, if he asks to go to the Dr. then it really has to be bad. He had severe internal bleeding. The problem is that they could not find the source. They ran a bunch of tests, but it left the doctors stumped. They transported him from one hospital to another in the hopes that they would be able to figure out what was going on.

They did many tests that did not reveal anything. They finally they had him swallow a camera pill. That was on Thursday, February 20th. They hoped to get the results that evening or the next morning. Mom was with him the whole day and it was just another normal day in the hospital. I had talked to him earlier in the day and he sounded fine to me. I had just gotten into bed for the evening and the phone rang at 10:15 and it was my Mom. The connection was really bad and I could not hear her at first. Then I heard her and she said, “Your Dad has collapsed and they had to resuscitate him and he is on a ventilator, go to the Emergency Room.” My heart sank. I immediately called the best neighbor and friend in the world and said I need you to come and stay with the kids. Jay and I were in the car in a matter of minutes.

We drove to the hospital and we made very good time. When we got to the ICU, Dad was hooked up to all sorts of tubes and wires and a ventilator was breathing for him. The doctor came to talk to me and Jay and told us that he had collapsed in his room and they had to do CPR for approximately 6 minutes. They told us he had suffered a massive heart attack. They were doing everything they could to help him. Then my brother and Mom got there. We all got around my Dad’s bed and prayed. It was so sad to see him like that. I remember when he had open heart surgery and he was like that afterwards and it was a sight I never wanted to see again. We stayed for the longest time just being with him and talking to him. Around 4 in the morning, Jay and I had to leave to get home to get the kids to school. My Mom and brother stayed the night. We went home and slept for a little bit and then went back to the hospital.

The camera pill produced results; they were able to find the source of the bleed. Friday, Dad went in for surgery to remove a portion of his small intestine and his appendix as a precaution. They were pretty confident that they found the source of the bleed. Time would tell. Dad spent several days in the ICU. He was able to come off the ventilator and was able to recognize us. He was a little confused; we would have to remind him where he was at times. It is very common, especially in the ICU to become disoriented. There are no windows, no light, and no sense of time. I can only imagine how frustrating it was for him. He was moved out of ICU on Monday night.

This past Friday they did an angiogram to determine the damage done to his heart. It turns out that his heart is only operating at 20-25%. He needs to have stents put in, however the kind he needs require him to go on two blood thinners for 12 months. Once the stent goes in, they cannot take him off the blood thinners. So while they were doing the angiogram, they had told us if they could fix it at the time they would, but if they didn’t feel comfortable they would not. They decided not to because they wanted to check with Dad’s surgeon to ensure that he was confident that they removed the source of the bleeding. They cannot risk putting him on blood thinners if there is a chance of him bleeding again.

So, all the doctors will talk on Monday and come up with the best treatment. Then on Tuesday they will do another angiogram to place two stents. At this point that is what we have been told. Dad is very tired and just wants to go home. Mom has been by his side every day. She is the most amazingly strong woman I know. She has woken up every day, driven a 30 minute drive, spent the day sitting with Dad and then drives 30 minutes home and does it all over again the next day. She is exhausted, but never once has she complained of anything. She is just plain remarkable. I could not ask for a better example of what it means to love someone. She loves my Dad with her whole heart in the most unconditional way.

On Tuesday, Jay and I have to take Nathan to Children’s Hospital for an overnight stay. He will be having an MRI under general anesthesia and then we have to check into the Epilepsy Monitoring Unit for an EEG. Needless to say, my heart is torn. I want to be with my Daddy to make sure all goes well, but my son needs me with him. It will be a hard time for us, but we are all doing what we need to do to get through a very tough situation.

We appreciate the prayers for our family. We have been through a lot and have a long way to go. Thank you for loving my family. It means the world to us to know that we have people who care.
Stacey

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No Apologies…

This past week, we surprised the kids with a trip to Disneyworld. I will make no apologies, no excuses and would go toe to toe with anyone who questioned my judgment in taking the kids out of school for a few days. My children are still young, they still believe that anything is possible, they still dream BIG. And we try to show them that there is so much fun to have in life.
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We come home to a Neurology appointment this week that has been looming over our heads for awhile and I think that this trip was our “calm before the storm” moment. We needed this time to go be carefree and have fun as a family. We have a lot of big events coming up in the next couple months with Nathan’s health that we are really trying to live each moment to the fullest. We do NOT know what the future holds for him and we want to make each day count.

We woke the kids up early Tuesday morning and told them at breakfast that they would be on a plane in a couple of hours headed to Disneyworld. Nathan squealed with excitement, while Madison very quietly processed what we were telling her. She did not believe us until we showed her that her bags were already packed. Then it was off to the airport. The Captain let Nathan sit in the cockpit and in his chair and took pictures with him.
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Once we got to the hotel, we got to go see the Pirate themed room that we had booked. Lately, Nathan has been very interested in Pirates, so that was really fun for him to see that he was sleeping in a pirate ship. We got to hit all the parks, Animal Kingdom, Magic Kingdom, Hollywood Studios and Epcot. It is wonderful because Jay’s sister lives there, so we get to spend all our time with Madison and Nathan’s Aunt and Uncle and Cousin. It really makes our time there more special.
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We met a wonderful gentleman who fought in World War 2 and told the kids stories of his time there. He told Nathan all about how to be a gentleman. He told us how he hopes to live to be 135 so he could go in the book of records.
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We met another wonderful woman who has a 10 year old adopted, non-verbal Autistic brother and she was very drawn to Nathan. On her own, she went and got him a Mickey hat, a pirate sword and other cool things for him to have. She told us we made her whole week. Her brother lives in Tennessee and she had been really missing him, so she enjoyed spending some time with Nathan.
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We watched the fireworks at Magic Kingdom and while I don’t know what Nathan actually saw, it was dark and he was able to tell us when he saw the light in the sky. We rode all the rides, most of them several times. They would let us ride a couple times in a row since they knew Nathan loved it. Both of the kids’ favorite was Rockin Rollercoaster. It is a great ride that shoots you 0-60 in 2 seconds and blasts music in your ears the whole time. They would get off and beg to go again. It was so wonderful to see the smiles on their faces.
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We are very fortunate to be able to make these memories with our children. I know that they will last for a lifetime. That has always been very important to us, that the kids have lots of memories to draw on forever.

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Coming up this week is Nathan’s Neurology appointment. I will let you know what we find out there. We have a follow up eye appointment in March and then the final DNA result appointment will be on April 1. That is the one that should hopefully finally provide the answers we have been long awaiting. As always, we will keep everyone posted.

Thank you for continuing to keep our family in your thoughts and prayers. They are very much needed and we feel them. We are blessed to have such a wonderful community that is supporting us.

Stacey
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Moving on….

The other day I decided it was time to pack up all of the postcards and other trinkets that Nathan had received over the last year.  Honestly, they have stopped coming and I really needed my dining room table back for Christmas:).  But in reality, I did not know what to do with them anymore.  He can’t really see the pictures and I was not sure what to do other than put them in storage for a memory down the road.  One day we can pull the tubs out and look back on the journey we went on, literally around the world from our own house.  I have to say it was a bittersweet moment for me.  I was glad to do it alone.  I was able to go back and look through all the postcards, the trinkets and the words of encouragement.  There were so many.  Literally, thousands of postcards made their way through my front door.  Letters of hope and words that made me cry. Stories that made our situation seem so small and others that made me realize I can make it one more day. It still makes me smile to think of all that everyone did for us.  But there was a sadness in packing it up too.  I realized that Nathan won’t look at these again.  He won’t ask the questions that he once did about the places he saw.  It marked one more what seems like last moments for us.  We struggle to hang on to every little piece of the here and now with him so that we do not lose focus of what we have.  But I would be lying if I said we don’t think about the future, A LOT.  We do not know what the future holds and unfortunately our imaginations get the better of us at times.  Thankfully, Jay and I have each other to remind ourselves at times not to get ahead of ourselves.

I wanted to take a moment to thank each and every one of you who sent a memory to us.  They have been cherished.  It gave our family an opportunity to sit and look at the world in a way that we may have never been able to do.  

Nathan came home from school for Christmas break with a new tool.  He is now equipped with a cane.  He was so proud to walk to the car and show me how he uses it.  I took him to the store and it was the first time in a year where he was not holding on for dear life to walk.  He held my hand, but used his cane to get around.  He had a sense of Independence that I have not seen in a long time.  It was quite wonderful. He did proceed to tell everyone that he came in contact with that “This is my cane, it is not a weapon and it is not a toy, I use it because it helps me”.  It was sweet.  He has been doing well in school and the school has been absolutely wonderful in accommodating his needs.  He truly is a unique person with special needs and they have stepped up to the plate and really come through for Nathan and for us.  We are working with Social Security and Disability now to see what he is eligible for and that has been quite interesting.  That will be a long road, but one worth pursuing.

We have received the first of Nathan’s genetic testing and I am thrilled to say that it all came back normal.  We have appointments in January to meet with a Neurologist. We are nervous wrecks about all of this, but trust that God has a plan.  We know that we are in good hands.  Jay and I are Nathan’s biggest supporters and will always stand by him and fight for whatever he needs.  Our prayer is that his road is just a little easier than it seems right now.  We pray that his life is full and that he is happy.  As long as we have that, what more could we ask for.

From our family to yours, we wish you the Merriest Christmas and Happy 2014

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Time to share

So I have been trying for a couple of weeks to sit down and summarize what all has transpired in our lives and every time I try, it is a little overwhelming. I feel like if I write the words then it is true and I so badly do not want it to be true. I want to wake up and have all of this be a bad dream, but it is very much our reality so I guess it is time to share.

As I stated before Nathan started doing some strange and unusual things with his eyes over the last couple of months. We noticed it quite a bit on our vacation. He would roll his eyes back into his head and stay like that for short periods of times. When we would ask him what he was doing he would act like he did not know what we were talking about. When asked to put his eyes back, he would tell us he couldn’t, that it hurt. Honestly, it was disconcerning to look at, but I attributed it to another thing that he did. I think it bothered Jay more than me.

When we returned from our vacation, a much needed one at that, the teachers at his school noticed the same thing with his eyes. Apparantly, one day while walking inside from recess, he was holding on to two of his friends and when he got inside he became upset stating he couldn’t see. They noticed his eyes rolled back and they said in total it took about 45 minutes to subside. They had him lay his head on the table and indicated that he seemed panicked about it. This occurred in late October. At that time we had an appointment to see his eye Dr. for a regular checkup on November 13th. The vision specialist that works with Nathan at the school said it would be worth a phone call to see if they wanted to see him earlier. I made the call on Tuesday and we were in to see him Friday, November 1.

The nurse examined him first and did the same series of exams we had seen before, but you could tell she was taking more time and seemed to notice things that made her “redo” certain tests. When she was done she looked at us and said she was sorry but his vision had decreased significantly. We asked her what that meant and she said the Dr. would go over it all with us. The Dr. came in and did his exam and looked at Nathan and said “Buddy, I am sorry, but your eyes are worse”. When we asked him how much worse he said that they were more than 125% worse since May 2013. Nathan was sitting on my lap and I had my head on his shoulder. He turned around and asked if I was crying and I said yes. He said “don’t worry Mommy, I am strong!”. The Dr. also noted that his Optic Nerve was paler than before which is a sign of degeneration. At that point he indicated there is nothing that can be done. There are no surgeries, no cures, no fixes… nothing. He recommended that Nathan be trained with a cane as soon as possible, which we are in the process of. He is in the beginning stages of early Braille. We left the appointment feeling very deflated.

On the following Tuesday, we received an email from his eye Dr. that indicated he had met with the head of the genetics department at Children’s Hospital. We had met with him back in May of 2012 and had some genetic screening done that all came back normal. He presented Nathan’s case and they have indicated to us that there is a possibility that Nathan may have a degenerative Nuerological or Metabolic disorder that they have not discovered yet. They have always said that he had Optic Atrophy. Now they think there is a real possibility that he has an underlying disorder that had caused the Optic Atrophy. They wanted us to get back in to see the genetics department.

We called and they were scheduling out into January. The Dr’s. always recommend not to google what they talk about, because believe me, it is scary. Of course we don’t usually listen to that advice and we started reading what the possibilities were. Jay immediately got on the phone and called the genetics department to see if they could see us sooner. He contacted the eye Dr. to see if he could pull some strings. We were told that Wednesday that a couple of months is really good and some people wait up to a year. HOWEVER, we got a call on Thursday letting us know an appointment had “become available” the next day, Friday the 15th. Of course we took it! I think Jay’s persistence paid off.

It was an early appointment and I had asked if my parents would meet us there to help with Nathan. There always comes a time when the Dr’s need to talk to us and it is hard to focus when he is in the room. We don’t like to talk about him and the things that are “wrong” with him in the room. As it turned out at the last minute my parents couldn’t make it. I was a little nervous. When the nurse went to get all his vitals he refused. He would not stand on the scale or let her measure him and I thought oh boy, this should be fun. We went into the room and there was the metabolic Dr., a student and a counselor. A few minutes went by and then this young lady walked in and announced that she was with child aid and her job was to entertain and play with Nathan during the appointment. Thank God! She came at the perfect time and played Legos and Star Wars with Nathan so that we could concentrate. The Dr. explained to us that they want to do a secondary DNA screening. He said there was one particular disorder that they really wanted to rule out. He flat out told me he would not tell us what it was ( darn google). They will do a enzymatic test that takes about 3 weeks to get the results and then they will do a full DNA test that they send to a lab in Massachusetts that will take 4 months!!! It will look at over 220 things that could be affecting Nathan. He also wants Nathan to see a Neurologist to have a full exam and is recommending another MRI. They want to compare it to his previous MRI done over a year ago and see if there is any change to his grey matter. We have that appointment set for January. We have the follow up appointment set for April 1 to go over all the results with all the Dr’s at the same time.

So, a lot of information for a long wait. We have done our part and now we just pray that if they find something, it is something that we can get him help for. We do not want to see him struggle the rest of his life. I want him to live life to the fullest and not be restricted in so many ways.

Thank you to all of you who have hung in there with us. You know when we have needed to talk and when we have needed to cry. You have also respected when we just don’t have the words anymore because it hurts to say it out loud. We love you and are forever grateful for your love and support of our family.

Stacey

A long time…

Wow! It sure has been a long time since I have had the time or the heart to sit down and write. Things always seem so busy in our lives. It always seems like there are things to do and by the time I have any time to sit and write, I am so tired that it tends to just sit in my head instead.

This has been a really good summer for Nathan and our family. He successfully went to day camp every day this summer and had a lot of fun. The summer program went so far as to hire an additional staff member to help with Nathan during the day. It was a very pro-active approach for them to do that without us requesting it and very much appreciated by us. It really set him up for success to have another adult on hand to be one on one with him if the need arose. Thankfully, he participated and had fun! He went on several field trips throughout the summer and it was nice to hear of his good days.

Madison enjoyed her summer very much. She got to spend some time with friends, going to the pool, having sleepovers and all the other things that 11-year-old girls like to do. She is now in 6th grade and it is her last year of elementary school which makes me a little bit sad to think of how quickly she has grown up. I am not going to lie, the idea of middle school scares me a little. Not for her but for us:) She is very excited for her upcoming Outdoor Education trip that the 6th grade class will be taking to Estes Park in the Rocky Mountain National Park. She will be gone for 3 days. She has never been away from us that long, so it will be interesting to see how that plays out. She is an amazing girl, a great student, friend and an amazing daughter.

Nathan is now in 4th grade! Seriously, cannot believe that my baby is that big! He is excited this year for school, more so than he has been in the past, which is a big step for him. Learning does not come easily for him, so if we can get him excited in anyway, we will take it. Last year wore me down emotionally. I was tired and just plain done. But not this year. This year is all about the possibilities. With Nathan they truly are endless. I know that he is such an amazing little boy who yearns to learn and grow and this is the year that I can see all of that coming to fruition. This year I vow to be positive and see the good in all things. While we will might have a bad day here and there, there is always a way to “turn it around” as we say in our house. I am excited to see what this year brings for him.

Driving home today from the doctor the following song came on the radio. Nathan listened so carefully to the words and got very quiet. When we pulled into the driveway, he said “Mommy, do you have that song on your phone?” I told him that I did not. He asked if I would download it for him because he had a surprise. So, I downloaded the song and he made me sit on the couch and listen to it and said “Mommy, this song made me think of you.” Now, I know that this is not really a son to Mom song, but the intention is so sweet and there are parts that fit him and me perfectly. So I am sharing his song for me with you.

Jay and I have purposely saved our vacation this year so that we could do something BIG! And BIG is what we are doing. We are taking the kids to Disney World for 4 days and then spending a day in Ft. Lauderdale, then heading out on a 8 day Eastern Caribbean cruise. It will be nice, as Jay’s sister lives in Orlando and we will get to see her family and enjoy the park with them! The kids are thrilled and ready for a “real” vacation. I think we have earned the right to go relax a little. I know I will be sitting pool side with a Pina Colada in hand and enjoying the sun!

We hope you are all well and will share some pictures with you once we return from our trip.
Stacey