Thursday, June 30, 2011

Quick Update...

Today will be Nathan's first day back at daycare since getting his g-tube... I know things will be fine, because the daycare is just plain AMAZING, but I'm still a bit worried about it. Nathan has adjusted really well to his tube and isn't hardly phased by it anymore. We will keep it wrapped up and tucked away while he is there since it's only for a few hours and they won't be doing any feedings through it. They did a wonderful job of protecting his NG tube and I know they will do the same with this!

We found it at Target Pharmacy... it's OTC
but you have to ask the pharmacy for it!
Tomorrow is Nathan's 2 week follow up appointment with Dr. Williams, I am excited to talk to him about the next steps for Nathan. Mark and I are sure we want to take him off of the steroid medication and see if his EoE can be controlled by diet alone. This would mean continuing to stay away from the top 8 food allergens, which is fine by us, as long as Nathan continues to find fruits and veggies that work for him. Nathan's stoma was starting to get some granulation tissue this past weekend, but we started using Calmoseptine on it which has finally started making a difference! This morning his tummy look beautiful! The GT  is not completely gone, but I can tell that it is going away and hopefully will stay that way! We will keep using the Calmoseptine  and pray that it will keep it from re-occurring. Today is kind of a big day for Nathan in way of his food trials... he is trialing CHICKEN! I am going to wake him up from his nap soon, and he will be having chicken, carrots, and green beans for his lunch! I am so thankful to finally be able to offer him a complete meal! I am praying that this chicken works and it will be added to the list of safe foods! I am using caution with my excitement in all of this however, because we are very aware that by removing the steroid from his daily regimen of medications could mean that he "fails" the foods he has already "passed" as safe with this last scope. I know chicken is a big problem food for other kids with EoE, so as exciting as it is, it is also a bit scary. But we will just continue as we have and pray that chicken will work and that Nathan's EoE can be controlled by diet alone.

Yummy carrots! Thank you Gigi!
Mom cooked up some whole carrots the other day when she kept Nathan. I have to say that I think they are his new favorite food! We have been reluctant to offer him "solid" food because of his difficulty with chewing and choking on it. But he did wonderful eating these carrots last night! I am happy that he finally has something that he can feed himself! He ate every last one that I put on his plate! 


Tuesday, June 21, 2011

Biopsy Results Are In...

Got some exciting news about the biopsy results! Nathan has ZERO eosinophils in his esophagus! That means the current treatment is working: top 8 allergen elimination diet, Pulmicort slurry, and Prevacid.

We are excited to know that the treatment is working for Nathan, but we are now questioning what is working exactly. Is it the fact that we've eliminated dairy, egg, soy, wheat, tree nuts, peanuts, shellfish, and seafood from his diet?  Or is it the fact that we are giving him the steroid? Mark and I are going to talk to Dr. Williams and Dr. Irani about this dilemma we are in now. I am wishing we had only done the top 8 elimination first, because for some kids this works and they don't need the steroid. Of course, if it's not needed to control Nathan's EE, then we don't want him on it. He is too young and has many years ahead of him and I don't like the idea of him being on a steroid his whole life.

There is no known cure for EE at this time, only life-long treatments to control inflammation and symptoms. If we were to stop treatment today, his eosinophil count would climb and his symptoms would inevitably return. I don't know what our GI and allergist's ideas will be with this way of thinking and I don't want to go backwards, but I am wanting to take away the steroid, continue trialing foods that are not the top 8 allergens and then see what his next scope looks like. To me, that's the only way to find out if the steroid is helping to control things, or if his diet is controlling things for now.

We follow up with Dr. Williams on July 1st to check on his g-tube and how it's healing. We will talk to him about the above idea then. We are also going to get him to write a referral for Nathan to be able to go to Food Therapy at the Children's Hospital. Nathan is still having quite a bit of trouble eating foods that are thicker than pureed baby food. I was thinking it was inflammation, but the scope ruled that out. So now we are thinking that Nathan is just behind on eating different textures of foods because right when he started eating them we found out about this EE diagnosis and took all of it away from him. So he has never really learned to eat foods with a variety of textures. Food Therapy will help him to re-learn this.

Nathan is still doing great and is just as sweet as he can be... he must have run up to me 50 times today to give me kisses! It just makes me melt when he does that!

Here he is this morning checking out his new tube:
 

Sunday, June 19, 2011

Nathan's Home...

After an exhausting two and a half days at the hospital we are finally home. You would never know that Nathan just had a G-tube placed 2 days ago... he's just as rambunctious as he always has been. In fact, the fact that he's so active right now has me constantly worried that he's going to fall on his stomach and hurt himself. So far, so good and I hope it will stay that way. When Nathan got the NG tube one of my worst fears was him pulling it out. I can tell you now that was silly of me and a pulled out NG is no biggie. But a pulled out G-tube... that's something to worry about... although it's being held in very securely I'm told, I don't want there to be any testing of how much tugging it can withstand.

We are currently waiting to hear whether or not The Pediatric Connection (our home health supply company) is able to get this G-tube protector belt for Nathan... in blue, of course, not pink. It has a round cover that velcros over the opening to protect it, yet allow for easy access for feedings.
Benik G-tube Protector Belt
If our supply company can't get it, I think we can contact the company that makes them and pay out of pocket for it, which we will gladly do knowing it's going to protect Nathan's tummy, prevent the need for constant tape on his tummy, and keep him cooler than it would by wrapping him with an ace wrap to keep it concealed. It will be especially nice for when he is at daycare too, since they don't do any tube feeds while he is there.

Another thing we are anxiously waiting on right now are Nathan's biopsy results. Dr. William's said that they should be back Monday (tomorrow!) or Tuesday this week. I apologize for not mentioning anything about the scope Nathan had on Friday along with getting the G-tube. My last few posts were written in haste due to complete exhaustion from working eight days straight before Nathan's surgery, and then being in the hospital all weekend with him. Plus, the G-tube was the "big deal" this time around. Looking back at them and re-reading them, I'm noticing that I've left out some details of our stay. Anyway... Dr. Williams said Nathan's  esophagus looked better than it did last time (3 months ago), no signs of inflammation at all. This is good news and we are hopeful it means that his biopsy results will be good news too. Yet, we do know with this darn thing called EE, you can have the most beautiful, normal looking esophagus during the scope and still have a high eosinophil count. So we are hopeful, but we haven't started jumping for joy just yet. 

Thanks a million to everyone thinking good thoughts and sending up those powerful prayers for us these last few days. Mark and I are handling all of this better than we ever could have imagined. God truly does give us the strength to endure even in difficult times when life just doesn't make sense. He also sends angels  from out of nowhere when you need someone who understands exactly what it is you are going through right in this moment better than anyone else... thank you for being there for us Julia, Efren, and especially little Tyler! We made some lifelong friends this weekend with a family we have never even met, and have been blessed by the kindness and love they have poured upon us these last few days.


Saturday, June 18, 2011

Nathan Reading to Curious George...

Back To His Old Self...

Day two was so much better than day one. That's for sure! Nathan was practically his old self today. He only had Tylenol twice the whole day and did great! Mom came by this morning so that Mark and I could go home and shower and take it easy for a bit. That worked out well for Mark, but I just had to get back to the hospital as quick as I could, even though I knew Nathan was in good hands, it's just something about a mommy needing to be with her baby boy when he's just had surgery.

A therapy dog visited Nathan today, you can't tell by the photos below, but he loved her and got so excited when she came into his room. Our dear friends Kristin and Ryan visited for a while this afternoon too. They brought Nathan a Curious George book that Nathan just loved! Later in the evening Nathan read it to Curious George himself, in his own precious babble. Shortly after they left, my dad stopped by for a few minutes, Nathan was asleep, but we made sure to tell him that his GP just came by to see him when he woke up.

Now he is wide awake for some reason, I'm starting to wonder if I'm going to get even less sleep tonight than last night... I'm tempted to tell the nurse to give him some morphine to knock him out... but I won't do that. I am so thankful that his pain is much less today than yesterday and that he doesn't need such heavy drugs to control it. I'm too tired to think about what to write now, so I'll let today's pictures do the talking. Enjoy!

Playing with the huge balloon from Aunt Amanda


Checking out all of the get well wishes from the pre-k class at his daycare! 


My sweet monkey plus two more!

Brushing his teefers

Coloring... or more like playing with colored pencils time!

First taste of something in 39 hours... I'll bet it was the best tasting vanilla flavored EleCare ever! 

Coda the therapy dog came to visit Nathan

Daddy's boy! - Getting his first g-tube feeding! :o)

Plotting his escape

Reading his new book

Pretending that George is the patient and reading to him.


"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" (1 Thessalonians 5:16-18).

Friday, June 17, 2011

Amazing Nathan...

Nathan amazes us more and more! He has been sitting in his crib and even stood for a few seconds trying to "walk" in his crib. I stopped him because I was afraid he was doing too much too soon. Dr. Williams just stopped by and thought Nathan looked excellent! He still isn't allowed to eat/drink anything as they want to let his stomach rest. We will do his first feeding with the tube tomorrow morning; although he is going to be so hungry he is going to want to drink with his mouth for sure by then!  He did get to take some Tylenol by mouth this afternoon because of a fever, he about swallowed the whole syringe too! Bless his heart, he is so hungry! It's been 18.5 hours since he's had anything, I'd be hungry too! Considering the circumstances he is doing wonderful, only occasionally fussy every 2.5-3 hours when his morphine is due.

Mark's parents visited this morning during his surgery and my mom, dad, and sister came by this afternoon/evening. We are so blessed to be surrounded by such supportive family and friends! We appreciate all of our new found EOS families and all of the prayers that they and their families have been saying. Today wasn't easy by any means, but I did feel some sense of peace and calmness in all of this craziness. I know it's because of God and all the wonderful prayers going up for our family. 

Here are some photos of our day:


Just waking up after first dose of morphine.
Daddy and Nathan
Mommy and Nathan
Nathan's got a lot of buddies watching over him

The most giant balloon ever from Aunt Amanda. Thanks!

So sleepy but having fun coloring. He fell asleep with the marker in his hand and held it tight till he woke up.



Gotta represent CURED!

Sitting up on his own and coloring! :o)

Getting woozy again. 

Whew! What a day! Time to relax and watch some Mickey Mouse Clubhouse!

Nathan's new tummy :o(

Hugging on Curious George
Playing with his new Leapfrog drum he got for being such a brave boy!

Nathan's room sign.... he stayed in the same room when he was here on April 10th getting his NG tube. Kinda neat!


Proverbs 3:5-6

 5 Trust in the LORD with all your heart
and lean not on your own understanding;

6 in all your ways submit to him, 
   and he will make your paths straight.

-Thanks for the reminder Dad! :o)

Doing Good...

Nathan did great this morning! Everything went as planned with his scope and g-tube placement. He is such a trooper! They brought him to his room in a giant adult bed, his eyes were wide open and looking around as he rolled in to his room. :o) It was just too cute, and I'm sorry I didn't get any pics of it.

Here he is in his hospital crib:


Right afterwards he got pretty uncomfortable with pain. He started arching his back and drawing his legs up close to his tummy.  It hurts so much to see your child in pain, especially when you can't tell them what's going on in a way they will understand. The nurse gave him some morphine and he settled in what seem like an hour, but was really only 15 minutes or so. I wished I could trade places with him at that moment.

We are so thankful things went smoothly and now we look forward to him healing and no longer hurting. I hear from other moms that day 2 is so much better than the first, so I am looking forward to tomorrow.

Thursday, June 16, 2011

Nerves have Arrived...

For 3 weeks now I have wished June 17 would be here faster... now that it's tomorrow, I am wanting it to be 3 more weeks away!

Julia, Tyler's mom, has been keeping me up-to-date via text about Tyler's prep this morning at the hospital for his g-tube and scope. When she texted and told me that he was asleep and off to surgery I just sat their and cried. I know what it's like to hand your precious baby over to doctors and it's such a tough thing to do! I don't know that I'm ready to do it again tomorrow with Nathan either! This is all just so hard!

Julia just texted that the g-tube is in and it went well.... they now just have to do the scope and biopsies. I pray that Nathan's goes as quickly and smoothly tomorrow!

I better finish getting ready for work... I will update tomorrow on how things go!

Wednesday, June 15, 2011

A Reason To Smile...

video

This totally made my night tonight! Thank you Momma J!!! I've been getting more and more anxious about Nathan's surgery this week. Today was the hardest on my nerves thus far. Momma J gave me something to smile about! A friend who I only know through this blog, and whom I only know as Momma J sent me this tonight from all the way across the country in Arizona. Her son Tyler, has EE just like Nathan and is getting his g-tube tomorrow... only one day before Nathan gets his. I am amazed at the friendships I have developed over these last few weeks via this blog and on the facebook EOS support group! I truly feel a part of a family with these amazing moms and their brave kids! I hate that our kids have to suffer, but I love that we have each other to lean on when times are hard no matter how many miles there are between us!

Wednesday, June 8, 2011

Carrots...

So far so good with the squash over the last two weeks (we think... no vomiting at least). So today we started carrots. Nathan loved them and ate 7 ounces of them in one sitting! He still had a fever when he woke up this morning, but he is still acting pretty much like his normal self. Hopefully whatever it is will pass quickly!

Enjoying his carrots:

Tuesday, June 7, 2011

VOTE for the CURED Foundation!!!

Only 3 days left!!! Click below:

Vivint is giving away $1.25 Million to charities. Help us win!

It Isn't Allergies...

Nathan woke up from his morning nap with a fever today. So much for thinking it was just allergies causing his cough and runny nose. So exhausted with all of this!

I know, I know... God won't give me more than I can handle, but sometimes I just wish He didn't trust me so much!

Not so happy feverish Nathan:

Monday, June 6, 2011

Venting...

Nathan has been coughing since the weekend (mainly at night/nap time), and has had a runny nose again... is it a cold or is he allergic to something!?!?!? No fever... as of yet. Oh how I wish this were simple!

By the way... next time Nathan needs a surgical procedure I will be demanding that it be done ASAP... We're one week down with two more to go in the wait until the 17th and it's driving me crazy. It's way too much time to think about it and second guess it and wonder if we've exhausted all other resources before surgically placing a feeding tube in to his precious tummy. Deep down I know it's the right thing to do, but it doesn't make it any easier. These three weeks are giving me nothing but time to think about it way too much! Please pray that these next two weeks will pass quickly!

In an effort to focus my crazy thoughts in a more positive direction I have contacted Ellyn Kodroff with CURED about fundraising/events to raise money for research. 100% of the money that is raised goes towards finding a CURE for this terrible disease! I will be calling her tomorrow to get all the details. I am nervous about it, as planning and hosting a fundraiser event seems bigger than what I can handle right now in my busy life, but I know that with the right support from friends and family I can make it happen!

Another EoE mom I met through facebook across the country in California, has held several events since her son was diagnosed and she has been kind enough to offer advice and tips on getting things rolling. She was honest and said that she was just as nervous about it as I admittedly am, but she has worked through that and has done amazing things for awareness!

So here's to biting of way more than I can chew and trusting in God to make it happen!

Wednesday, June 1, 2011

15 Month Well Visit...

Today was Nathan's 15 month well visit with Dr. Terry. Nathan weighed in at 25.11 lbs. up from 20.9 lbs. three months ago, at his 12 month visit. We are so thankful for his NG tube allowing us to give him these precious calories! It's working and it's wonderful! He was 32 inches tall today, up from 30 inches at his last visit! Two inches taller in three months is pretty impressive! He's going to be one tall boy! Dr. Terry said he was pleased with Nathan's growth and developmental progress! It is so wonderful to know that this EE is not affecting Nathan's development in any way. Dr. Terry said that he thinks Nathan is one of the happiest, most social kids he's seen! That makes me a proud mama to hear! I know Nathan is an awesome kid, but to hear it from other people makes me smile too!

Checking out the fish before seeing the doctor: