Testing

I think that I figured out how to have my signature show up at the end of a post...let's see!!! Yep, it works!

Surgery is scheduled

Eurodynamics: Nov. 14th
Pre-op: Nov. 18th, check into Ronald McDonald House
Surgery: Nov. 19th

Will be in the hospital 2-5 days, Lord willing.

Moved up from January. :-)

Speech Therapy and Stuff

We had a speech therapy eval today. The funny thing about it is that it was with the same SLP that did Ethan's vitalstim. The difference is that we had to really discuss and observe what types of communication assistance will work best for Ethan. I think overall, it was a good visit.

I am so tired today. Trying to not catch a cold. Ethan is trying too. His walking was superb yesterday! He walked everywhere showing off to people what he could do! It was so cute! Today, I think that he was sore! LOL! He didn't want to walk much.

Last night, I spoke at church about my experience from Africa. People said that I did a good job, so I hope that I did and they aren't just being nice. :-) I started my blog about Africa, but everytime that I go to add a picture, it adds the wrong one. It was beyond frustrating, so I stopped. It's a draft at the moment and I will get back to it eventually.

Today, I went to MOMS at church for the first time. It was so wonderful to be surrounded by such beautiful women. I can't wait to get to know them better.

Another Fletcher update

He is OFF of the vent!!!! OFF, OFF, OFF!!!! Still needing O2 and bi-pap at times, but OFF of the vent!!! Thank you GOD!!!

Fletcher update

This is a seizure- it's like a firestorm in the brain


Cautiously optimistic. He is still on the vent, but agitated, so that is actually a good sign that he is still the fighter that we know he is. Please continue to pray for him! Thanks!

Mizungos!!!

Today was a busy one, I need a nap! Ethan had OT at 9. It went OK. He was a pistol. He was wanting to throw everything instead of focusing on his task. It wasn't until the OT put him, belly down, on a bouncy ball that he completed his task of shape sorting. Lil' stinker...

What he did do that was awesome was he walked across the entire room (big open space!) and just kept wanting to show off! His PT was so impressed! She asked when he started the walking and I said, "Oh, last week!". It was the coolest thing- he went to drop to the floor midway and then decided to keep going, so he actually bent down and pushed himself back up! That is huge!!! It was quite exciting.

I met with my Kenya bunkmates, aka: MIZUNGO'S, for lunch. I love these ladies. I was feeling down about a few things and they were what I needed to perk back up. Thank you, Mama Nancy, Amy (BFFK), Mama Donna, and Amy for such great company today.
(The locals in Africa call white people mizungo's, so we heard it a lot- LOL!)

After lunch, I was able to talk with Mark again- another Kenya BFFK. I love how God put all of these wonderful people in my path and that we all became close friends! We could have all had opposite personalities and looked forward to the time that we didn't have to spend 24/7 with each other, but not this group! I miss them all so much, so if I can talk to them on the phone or see them for lunch, I am beyond happy.

Ethan also had his endocrinologist appointment today. Big waste of my time, really. We had some blood drawn, but unless it shows that Ethan has a growth hormone deficiency, there really isn't anything else to look at for his lack of growth (hormonally anyway). Chances are that his lack of growth is due to the tethered cord, but I just wanted to make sure that there wasn't something else...this is Ethan we are talking about here after all.

I really don't care if Ethan is small. I just don't want there to be another underlying medical issue that we are missing. We, myself and the medical community combined, have placed hidden blame too many times before- I just want to have everything checked. If the blood test- which takes about 3 weeks to get the results- comes back positive for growth hormone deficiency, then we would have to decide whether or not to do injections. I am kind of thinking that unless he would need the shots to prevent further medical issues, we would opt out. But, I don't know enough about that yet to really make a concrete decision.

Since Scott got home early, I was able to go vote without taking Ethan with me. That was nice. Even nicer was the fact that I was in and out of the polling place in SEVEN MINUTES. Yeah, I rock.

Did ya, did ya???

My trusty sticker says so!

This day is FINALLY here!!!

Lillian Update

Kamrin says that the surgery went well and that my dad is in Boston. I guess she didn't recognize him at first. :( That's about all I know, but still ask you to pray for her recovery. Thank you.

Walking Progress Video

Make photo slide shows at www.OneTrueMedia.com

I could not be happier with his progress lately. Can you imagine how he'll improve after his cord is detethered!??!!? WOW!

Pray for Fletcher!!!

To all my prayer warriors, please:

My friend's son, Fletcher, has been put into a medical induced coma after a 5 1/2 hour seizure! He has now been put on a ventilator as well. The family were recently uprooted from NC to a very far away place with the military and have no support system where they are. This is serious folks, please, please, please pray for Fletcher's healing and for that darn seizure monster to leave him alone!!!

Thank you so much!!!
~Kristen

I love this boy.

This was taken on my phone yesterday at the Cheesecake Factory. I love it when I can capture his smile. Thank you God for giving me such a precious son.

Happy Halloween!

Today is the last day of the 31 for 21 blogging challenge. I fell short on two days out of the month, but posted more than once on some days, so I hope that I still came through for the challenge ok. Today is also the last day of Down Syndrome Awareness Month. Today also marks Halloween.

I did not grow up celebrating Halloween, so I don't really get into it that much. I do dress Ethan up every year and take him out trick or treating with Madison and Delaney over in their neighborhood. Last year, Ethan was Buzz Lightyear and walked around in his big walker. This year, Ethan was Buzz Lightyear and he walked one-handed up to the doors. Yes, he was Buzz again, but if you have been paying attention in class, you would already know that Ethan has not grown over the past year and I was not paying for another costume when he couldn't care less what I put him in. He still looks cute as Buzz, so sue me. :-)~

Each time we went up to a door, he was all happy and when it came time to leave he practically put the brakes on and started to fuss. I can just imagine next year when he is running!!! :-)

We had a good day/night. We are really tired now, but I wanted to make sure to get in the blog for the day!





One more thing...
Please say a prayer for my dad's mom, Lillian. She was supposed to have heart surgery today, but fell and hit her head, got a blood clot and ended up having to have the pressure released (or that is what I was told...I think). I still don't know if they were able to move forward with the heart surgery today or not. I know that my dad is looking for flights to Boston to be with her. I am really hoping that he is able to find the right deal to be able to be with his mom during this time. Thanks for your thoughts and prayers for both Lillian and my dad.

Duke Neurosurgery Appointment

Today, my BFFK (best friend forever Kenya) Amy and I took Ethan to Duke Children's Hospital to meet with Dr. Fuch's for a second opinion about Ethan's tethered cord syndrome.

I have felt that Duke has been much friendlier during this process. When we arrived, I just felt like it was an actual children's hospital geared toward- um, children. What a concept. Brenner's is fairly new and feels very stale. The walls at Duke are decorated with children's art...how cool is that?

Dr. Fuch's was very friendly and answered my questions without making me feel like a dummy. He did not mock me in any way. He ordered the urodynamics test for pre-surgery and he is going to have his secretary try to work us in sooner than later. If all goes according to plan, we will have urodynamics and pre-op on the same day, check into the Ronald McDonald House, and then have surgery the following morning.

Dr. Fuch's performs this surgery all the time. He said that he has over 400 cases per year. This versus the one a month that the other neurosurgeon says that he may do. I feel so at peace with the decision to stay with Dr. Fuch's!!!

The surgery will take about 45 minutes and Ethan will have to be in the hospital for a few days. Dr. Fuch's was very attentive to the fact that Ethan will need a little extra help staying down post-op. (He is supposed to lay flat for a couple of days!) Another thing that I just loved was that they allow me into the operating room until he is asleep. I think that alone may have sold me. Ok, not really, but I am such a control freak about Ethan's care that I try to be with him until he is asleep with any procedure and the last few that he's had with sedation, they make me leave before he's down. Grrrr, I hate that.

Ethan will have a private room post-op and I will be able to stay with him. They have chairs that fold into beds or some rooms actually have murphy beds for parents.

Here's a laugh for you- the pediatric urologist's name is Dr. Weiner. Laughing? Yeah, I am too. LOL!

If we cannot get in any sooner, we are scheduled for urodynamics January 5th. I will keep everyone updated.

We went to Cheesecake Factory for lunch. Yummy. Ethan didn't really want to eat, which is not like him, so hopefully he's going to eat dinner well.

Scott had one of his wisdom teeth pulled today so he looks like he's been punched on his left side. He's doing pretty good and Heather just called to say for him to take tomorrow off too. Ethan is out of school, so it looks like a FaulknerFam day!!! :-)

Happy Birthday Grandma Lynda!

Today is Scott's mom's birthday. The above picture was taken during Ethan's Make A Wish trip to Orlando, Florida. Lynda LOVES horses and we were able to have our picture taken with a clydesdale at SeaWorld. Beautiful animal...

HAPPY BIRTHDAY LYNDA!!! We love you, miss you, and look forward to seeing you soon!!! Thank you for the support that you have given us over the years! We know how much you love us, and how much Ethan means to you! Thank you for being his advocate back home in California. Your actions speak much louder than any words- ok, so your words may be your actions, but still. :) Ethan loves you so much and I know that he can't wait to see you again. Have a wonderful birthday! *muah*

Great Day!

Ethan had OT this morning. His school OT joined us, which was awesome! I love that I have people surrounding us that want to do what's best for Ethan! I love that we all are wanting to be on the same page. The big news of the session was that Ethan stacked a block!!! This is HUGE! He is usually master of destruction and wants no part of stacking blocks. And, even though he didn't get the second block on top of the other before wanting to knock them over, I was just elated that he stacked a block all by himself!!! Round of applause please...

After therapy, I took Ethan over to another school for their fall festival celebration. They have the children get dressed up in their costumes and play games, make crafts and stuff since the regular school does not allow kids to dress up anymore- I have mixed feelings on that, but it's all good.

While at the school, I ran into a friend whose daughter passed away one year ago today. This woman amazes me with her strength and determination to have life go on. Her daughter was such a blessing to all who knew her and she definitely got some of her fighting spirit from her fabulous mother!

I also ran into Jamie and Lil' Richard. Jamie was a HUGE part of me actually going to Africa. She supported me (in more ways than one) with my decision and encouraged me to go. I cannot wait to actually sit down and tell her all about it. Plus, she may want her camera back someday. LOL!

After I left the school, I went and had lunch with Nancy- a fellow Kenya teammate. Oh how I love this woman. She has held my hand through some tough spots and I know that she will continue to encourage me and lift me up. I love you Momma Nancy!!!

Then, I went over to my former CU employer. I got to talk about Africa to so many there. I just smile when I get to talk about the trip and what an impact it has had on me. Yes, yes, yes...I promise to write about it soon. Now that my head is clear- I think- I should be able to do it soon...maybe tomorrow.

So, Ethan is napping and I have laundry to do. Great day. Toodles.

Swallow Study

Ethan had his follow-up modified swallow study this morning. This was to see if he had any improvement since finishing up his second round of Vitalstim therapy. There was some improvement- not a terrible amount, but some. He is also still swallowing about 2 seconds too late, so there is still a definite need and purpose to thickening his food/drink.

One step at a time...

OH, speaking of steps...Ethan took close to FIFTEEN independent steps!!! I had just taken him back to school after the study and it was time for PE. He was all happy as we were walking, so I let go of his hand and he just kept going!!! Stood tall and straight and away he was going! I about cried. Ok, I did cry, but it was a very HAPPY cry. He was so proud of himself, you could tell. Just wait until after his detethering! LOOK OUT!!! :-)

Make A Wish Reunion @ Carowinds

Faulkner Family Portrait... wouldn't be an accurate picture without Ethan screaming DON'T CAMERA ME!!!! lol!


Today, we went to Carowinds for the annual Make A Wish Family Reunion. MAW gives us parking permits, lunch, and free admission. The last time we went, Ethan had just had his ear tubes put in and his adenoidectomy. He did NOT have a good time. He freaked out on everything that we put him on, including the carousel and swings. Today was a different story.


He rode the cars.


He rode the boats.


He rode the swings...TWICE.




He rode the flying balloons. This ride absolutely freaked him out the last time! There were some moments when he got a little frightened, but he ended the ride laughing and that was so cool to witness.


Ethan was quite the tired little boy when we left. He was asleep fairly quickly after getting in the car. I hate that he falls asleep chewing on his bib...it's comforting to him though.


On the way home, we saw hot air balloons flying around. They were so beautiful. I am not sure if you can see it well, but I thought the beautiful North Carolina fall foliage was worth capturing too.

Good day, good day. And to think...I woke up not wanting to go.

Woops again!

I thought I blogged yesterday, but I didn't! Ooops again for 31 for 21! My bad!

Anywho- Ethan had his GI follow-up yesterday. Because of the new tethered cord diagnosis, we are holding off on ANY GI surgery. No g-tube, no pyloraplasty. I am happy with this decision. I am also happy that the surgeons were not jumping to get Ethan into surgery that may cause more harm than good down the road. So, we will wait at least 3 months post-detether before even thinking about it again.

YAY, it's Saturday. The week flew by. Partly because when I wasn't taking Ethan to school or an appointment, I was sleeping. I think I was over the jet lag around Thursday. It is crazy for me to think that this time last week, I was on a plane from London to Chicago. I am dreaming of being back in Kenya. I miss the people and the children especially.

I will post about Africa, I promise. Along with pictures, but until then, here's some photo albums to look through. Enjoy.


Africa album
Africa Album 2
Africa Album 3
London Baby!

I'm sorry, did you say NORMAL!??!

I took Ethan to his ENT appointment this morning to go over the sleep study results. Overall, the study was NORMAL!!! That is such a change of pace from what we have been hearing lately. PRAISE GOD.

He did have one apnea episode per hour and some shallow breathing, but his respiration never fell below 92%, so that is good. Ideally, they would like him at 94 or 95%, but 92% is not that bad. It was recommended to repeat the study annually, but our dr. doesn't feel that is necessary unless I notice some significant changes in sleep pattern. I trust this ENT more than anything, so I am rolling with his recommendation. Plus, I love the idea of not having to do another sleep study anytime soon- even if it is in a year!

Another thing that I appreciate so much about our ENT is that he wants to know about ETHAN. Not just Ethan's ENT stuff. He wants to know how his leukemia treatments were going, or how his behaviors are. I told him about the tethered cord and my reservations about the neurosurgeon at Brenners and he just solidified the way I feel. He was so supportive and told me exactly what I needed to hear in order to not completely feel like a overprotective mama bear.

We have a second opinion appointment at Duke next week. I am so happy with how quickly they got us in! My friend, Amy- who went to Kenya with me, will accompany me to Duke. It will be nice to have someone with me at one of these appointments for once.

I am finally over the jet lag. Boy, that sucked. Well, not really---I love to sleep. LOL! I miss all of the team members from the Kenya trip. It has been like some sort of decompression without them all. I met up with Amy today at Starbucks and we are all having dinner tomorrow. We called Mark in Florida- it was so good to hear his voice again. These are forever friends that God placed in my life and I am forever grateful. Now, if I can just get motivated to tell you all about Africa. Let me just say, IT WAS AWESOME!!!