I just wanted to let everyone know our plans. We will get up early tomorrow morning and drive to Mom's house for the night. We will come back to Dad's on Wednesday and fly home on Thursday.

Al​i

We made it to NC! We got back to Dad's yesterday around 3:30. We were all so tired. We all went to bed at 7:30 last night! Today I will start ;ooking at flights and determine when I will head home.

Now the wait begins. Some of the blood work should be back on Monday. Some will take a few weeks. The neurologist will call and let me know when we need to head back once all of the bloodwork is in.

Thanks for all your prayers and support.

Today was another really long day. We were at the hospital for about 3.5 hours this morning. We had a really good appt with the neurologist. He was very intrigued by Alex. He feels like quite a bit of Alex's symptoms could be explained by a mitochondri​al disorder. He spent an hour and a half talking to me and then a short examination of Alex. He decided to run more bloodwork, do a urine test, and and do an EKG. We also need to have a more thorough cardiology exam when we get home. He wants us to come back to do the muscle biopsy. In Cincinnati they only have the ability to take the biopsy and freeze it then send it for analysis. In Cleveland, they can do tests on a fresh biopsy. It is more accurate and they can do quite a bit more testing. So he is going to call up to Cleveland to see about getting us scheduled for a biopsy up there. In the meantime, he is curious to see what Alex's blood/urine looks like. Overall, a productive visit, but not the answers we would love to have!

We will leave first thing tomorrow morning and drive back to NC with Dad. Flights are booked through Monday. We will probably fly home Wednesday or Thursday. Alex and I need a few days of down time. It is really hard emotionally and physically on our trips out here. Please pray for our safe travel home.

I will keep you updated as I know more.

Ali

We just wanted to wish everone a Happy Thanksgivin​g. (And Happy Birthday Daddy). We are so blessed to have each and every one of you in our lives.

Thank you for all of the love and support you have shown us.

love,

Ali and Alex

PS- Monty-Alex misses you. Everyday he asks for you ans cream soda lollipops are now Monty lollipops. Andrew- Alex wants to know why you can't come with us today to the great wolf lodge. We can't wait to see you when we get home.

I think I should just move here. We are staying at least another few days. We met with Dr Putnam this morning. A lot of the blood work is not back yet. The biopsies came back pretty good. There is erosion in his duodenum. The good news is that it is Non-eosinop​hilic. Dr Putnam is pretty sure it is because we took Alex off reflux meds. So the first order of business is to get him back on reflux meds. He can keep his 3 foods and he is tolerating the formula so that was all very good news. Dr. Putnam is concerned about the other symptoms we are seeing. Mainly the severe constipatio​n, fatigue, muscle weakness and hypoglycemi​a. He is still thinking it could be a mitochindri​al disorder. He wants us to meet with a neurologist to see if there is any other testing that should be done before we do the muscle biopsy. They were able to get us an appt on Friday. At that point we will determine if/when to do the muscle biopsy or other testing. Dr. Putnam has decided that everything we are seeing is definitely related, but he doesn't think that Alex's primary problem is the eosinophili​c disorder. He thinks his digestive problems are secondary to whatever else is going on. He does want us to hold off on food trials for right now. he will give us the green light to trial foods once we figure out what else is going on.

Dad, Alex and I are going to the aquarium tomorrow. We will go to a big buffet for Thanksgivin​g and then have our appt on Friday. At that point we will find out if we need to stay into next week or come home. Alex and I are so glad to have Dad with us and Dad is loving getting all of Alex's attention. I will continue to update as I know more.

Thanks for all of your prayers and good thoughts. We love you all.

Ali

Just a quick update... Grandpa got here yesterday. We are so excited he is here with us. Today we are off to the children's museum. I will update again tomorrow after our appt.

Ali

We are exhausted! We have had a rough day. We had to be at the hospital at 10:00 this morning and got back to the hotel at 5:00. Alex did well during the scope/tube change. He has some visible inflammatio​n in his small intestine and some ulcerations around his tube. Dr. Putnam ran a "ton of bloodwork" and took quite a few biopsies. Alex is having more pain then he has ever had after a scope. We aren't sure if it is from the tube change or the biopsies, but he isn't a real happy camper tonight. We are stuck here (again). Dr. Putnam wants us to stay around until the results come back. We have an appt with him on Tuedsay Morning. At that point he will decide what else he wants to do. He mentioned the muscle biopsy and some motility testing. The good news is Grandpa is coming out Sunday to keep us company. The bad news is Bruce will be spending Thanksgivin​g/his birthday alone for the second year in a row. We are having fun with our friends and looking forward to seeing Grandpa.

Ple​ase keep us in your prayers.

Ali

We are packed and ready to go! Alex is excited to get his button and see his friends. I am not taking the laptop this trip, but I will update at least friday night. Please pray for our safe travel and Alex's surgery to go well.

Ali

We just got back from seeing Dr. Benzick. He does not feel like this is a stomach virus, which is how I have felt all along. We are not really sure what triggered it, but we think it is related to his EGE. He has lost a couple of pounds which is never good news. He is tolerating half strength formula. So we will wait to see what they have to say in Cincinnati. We are still waiting for some of the bloodwork to come back from the hospital. I'll update if anything changes.

Alex is still hanging in there. He cannot tolerate any formula. As soon as we give him any he is crying and hunched over in pain. I made a sugar water solution similar to Pedialyte. He is tolerating that so we haven't had to go back to the ER. His blood sugar is holding. Now to wait and see how long his body can go without "food". I am scared to put him on a scale. Anyway, we are home and just enjoying a quiet morning. This will give me time to get ready for our trip to Cincinnati.​
Keep Praying for Buggy.

Ali

We are home. The poor dr's here don't know what to do with Alex. They look at me like I am crazy! We are hoping not to have to go back. If Alex can keep his formula down and his blood sugar stays okay we will stay here. If he starts throwing up again or his blood sugar drops we have to go back. I am glad we went when we did though. By the time we got there his blood sugar was down to 51 and he was starting to feel pretty bad. A bunch of his blood work is out of whack, but we will leave that puzzle for Dr. Putnam to figure out. We aren't sure if he is sick or just having eosinophili​c issues.Anyw​ay, Alex is sleeping. Pray for him to start feeling better. I will keep you updated.

Ali

I am on my way to take Alex to the ER. He has been throwing up and is starting to get dehydrated and his blood sugar is dropping. I'll update when we get home...