It's been a long time

Wow I have completely forgot about this blog. I really should post more often, but I am always so busy. Noah was hospitalized 2 weeks ago to have an EGD done and place a NG tube down his nose. The EGD showed a relapse in EOE (eosinophilic esophagitis). This is the third time for him to be treated for EOE.

He did really well with the NG tube feedings,  but he pulled the tube out a few times. His GI doctor wanted to try this to make sure he could handle tube feedings before doing the g-tube button. Well after 4 days, we all made the decision to proceed with the g-tube surgery. His doctor went ahead and did it the next day because with him now aspirating liquids, it was not safe for him to not have some type of tube. We all knew Noah would more than likely pull the NG tube out on the way home from the hospital, so we really didn't have a choice.

The doctor went with the AMT mini one non balloon tube. I was hoping he would get the AMT mini after seeing someone else who had it. It is smaller than the Mic-key and it's low profile, so that should be good for when he army crawls. The doctor decided to go with this one since it's a non balloon and would be harder for a child to pull out. Noah doesn't really mess with his button. The tubing and extension he likes to yank on though. He's such a stinker.

They put him on Elecare Jr formula due to his EOE. So far he has done well, with the exception of last night and earlier today. He had some tummy trouble that left him screaming and crying. So far this afternoon he has done much better. He gets tube feedings 4 times a day during the day and a continuous feed at night for 8 hours. He can no longer drink by mouth, but he is still eating by mouth with the tube feeding as a supplement.

This has definitely been an adjustment for us, but we will manage. Goal is to add some wright to his skinny body :).

Stroll for Epilepsy

The Stroll for Epilepsy will be April 14, 2012 at the Houston Zoo. Our team, Noah's Ark, will be participating for our third year in a row. We would be honored if you joined us at the zoo. Our team goal is $2000. We raised $3386 for the past 2 years for the Epilepsy Foundation. The money raised sends kids to camp, provides clinics for people with no insurance, educates people about epilepsy and seizure disorders and helps a person with epilepsy learn job skills to become employed.

We will be selling tshirts for $15 each to help raise money for our team. Thes are sizes Youth S - Adult 5X. We will have toddler sizes as well (price not set in stone yet for those sizes). If you would like to purchase a tshirt to help, please contact me.

On March 17, 2012, we will have our 2nd annual garage sale where 100% profit goes towards our team goal. Last year we raised close to $500 at our garage sale. Any donations of unwanted items that you have laying around are greatly appreciated :). We received so many donated items last year, which made the garage sale a success.

To join or send a monetary tax deductible donation, please visit the Epilepsy Foundation website and click on Noah's Ark. Noah's Ark

                                                                    2011 Team

                                                                    2010 Team

                                                                        T-Shirt

Weight Gain!

Noah had an GI follow up appointment today and he has FINALLY gained some weight. Only 1.32 lbs, but still a weight gain. It has been about 8 months since he has gained any weight. Dr. Debroy wants to so another EGD to see if the Eosinophilic Esophagitis (EE) has returned and to also do a 24 hour PH Probe study. Hopefully Noah will gain another pound by his next followup and keep the weight gain up so we can bypass getting a G-Tube.

Another good note....I have found 10 other families that have a child with FOXG1. It is so amazing to hear everyones stories. All of the kids are so much alike. If you read Noah's blog and have a child with FOXG1, look up our group on facebook. Its a closed group so its just us parents :).

Hello

So I have decided to start a new blog for Noah and his journey with FoxG1 Syndrome and Epilepsy. I am so exicted to have met 2 other moms recently whose child shares the same rare genetic disorder as Noah, FoxG1 Syndrome. If any other parents whose child has been diagnosed with FoxG1 that read my blog, I would love to hear from you. I read one place where only 12 or so kids have been diagnosed with FOXG1. Not sure how accurate that is but it does go to show how rare it is.

Now that this site is a little more user friendly for me I am going to try my best to update often.