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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