I wanted to keep you guys updated on how we are doing...

Ale​x is doing great. We met with Dr. Benzick (our beloved pediatricia​n) on Monday and he is really pleased with how Alex looks and his development. Alex has gained 1.5 lbs since having the tube placed. So far he hasn't gotten any taller, but hopefully that will come. Dr. Benzick applauded us on how "normal" Alex is with all that he has been through. He is impressed with his development. As we have known Alex's intelligenc​e and verbal skills are above what they should be at this age. We briefly discussed having Alex's IQ checked in about a year. Dr. Benzick felt this would be beneficial as we progress with schooling.

A​lex's belly is healing really well. He is climbing and lying on his belly. He has virtually no pain, but he still hates for me to clean around the tube. We are now taking baths (thank goodness) and eating small "meals". (Dr. Putnam only wants about 200 calories a day to come from food so he is having some banana or blueberries in the morning and a small portion of beans and carrots at night.) We have been to playgroup and out to several activities. Alex has shown his friends his tube and they have decided they like Alex's new way to eat. Life is pretty much back to normal around here.

The only problem we are seeing right now is Alex's reflux. We knew going into the surgery that there was the potential for Alex's reflux to get worse from all the liquid of the formula diet. I hear Alex gagging and coughing quite a bit, but he is not in pain which means the meds are doing there job. We are trying to determine whether to proceed to several feedings a day as planned or to stick with the continuous drip. We do not want to aggravate the reflux any further.

We had hoped that by this point some of the peripheral symptoms we see would be increasing. Unfortunate​ly, Alex's energy levels and heat tolerance have not improved. We are hoping it just has not been enough time yet. If not, the next step is for Dr. Putnam to perform a muscle biopsy at one of our subsequent trips.

The only other new thing is that Alex and I will start homeschooli​ng some time in the next few weeks. As most of you know, Alex has a compromised immune system so the Dr's have advised not putting him in a school environment at this point. I have ordered a home school curriculum that we will work on for the next 2 years and then make a decision with the Dr's as we approach kindergarte​n. We are letting Alex participate in Sunday school and he is very excited to start this morning!

We are so grateful for all th support you have given us over the last months.

We love you,

Ali and Bruce

I just wanted to let you guys know that Alex is doing wonderful! He is feeling great. Pretty much back to himself...r​unning and jumping and climbing on Mommy and Daddy. He is amazing. He has completely accepted his tube and likes to help me. My favorite quote is, " Mommy, I'm beeping". This morning he woke up to the beeping and said Mommy did I stop the flow again? So he gets it!

Thank you for all the support and prayers through the last few weeks. We know god was on our side through this whole experience and is visible in Alex everyday. Alex's spirit and joyful outlook are a reminder everyday of how blessed we are.

I forgot...

A lot of people have had questions about the tube and eosinophili​c disorders in general. This is a really basic description​:

Eosinophil​s are types of white blood cells. There job is to attack invaders or toxins in the body. They are normally found in VERY low numbers in the GI tract. When you have an eosinophili​c disorder, your body sends eosinophils to attack certain foods. They then cause inflammatio​n and pain in the GI tract. The trick is figuring out what foods cause this response. There is NO testing that can pinpoint the foods. For some kids only a few foods are problems. For other kids virtually all foods cause problems. We already know of about 25 foods Alex reacts to. We also know he has 4 safe foods. Whether he will ever gain any more foods, we don't know. It will just be a slow case of trial and error.

As for the tube... At this point we are considering the tube to be a lifelong necessity. If at some point he gains enough foods to support him nutritional​ly that will be a bonus.

Pleas​e do not feel sorry for Alex or Bruce and I. We are very aware of the fact that there are so many disorders that would be so much harder to deal with. We are blessed to be living in a country and a time when there are treatments and ways to keep Alex growing and thriving. They are continually doing research to try and find better treatments and even possibly a cure. We are blessed with a happy, smart, loving little boy who we wouldn't trade for the world.


We love you.

Ali

We are home! Sorry it has taken me so long to update. It took me all day yesterday to unpack and today I have been cleaning and catching up on paperwork. I finally feel a little bit settled.

Ale​x is doing really well. happy to be home and playing with his toys. Every day he is moving alittle more comfortably and a little less hunched over. he loves his backpack. He doesn't want to take it off.

We are struggling with two challenges right now. One, Alex hates to have his belly cleaned (not that I blame him). We are supposed to be using a qtip around the surgery sight a few times a day to clean it. It is really painful and Alex puts up quite a fight. The second is that after 4 months of sleeping in the same room as Mommy, he is having a hard time sleeping in his room. In the grand scheme of things pretty minor.

He is doing great about not eating. He asks once in a while, but is fine when I tell him he can't eat yet.

Anyway, I just wanted to let you know we are doing well.

Love you,

Ali