We did it!

Hi friends!

So, I got the official good news yesterday! Ethan gets to stay at The Special Children's School another year! Amen! It really is where he needs to be, so I am overjoyed! Here is one of the reasons why we love it there!



Look how happy he is with the painting! Mrs. Kris (Speech Therapist & friend)and Mrs. Jill (teacher & friend) said that he had the most fun and was using his switch to ask for more paint! I guess he really used some more paint! Gotta love it!

Ethan has another day on his medicine, so he has been feeling good and even eating pretty good! Let's keep this going! We do NOT want to be sick when we visit home next month!

Hope everyone had a Happy Easter! We send many hugs!

Sorry- haven't updated this week.

Ethan is doing better. He went in to the hospital LAST Sunday for fever and bad tummy problems. He was released on Tuesday only to be readmitted on Friday. He has pneumonia again. Why? He may be aspirating his own secretions. I can not thicken that! I thicken everything else, but that is the one thing I do not have control over. Now, this is just a theory. The pulminologist is still looking into reasons.

Ethan's IGG levels were low, so he got some IVIG (immune globulin) the other day and has since perked up. He may even get to come home today or tomorrow- probably tomorrow. Thank you to everyone who has written and who continues to pray for Ethan! Even though he is so close to completion of his treatment, he is still so susceptible to everything known to man. This is the main reason that I need for him to stay at his school another year!

On a personal note for me- the stress of school has been lifted until June. I am taking a break to concentrate solely on Ethan. I won't start back up until after we get back from California next month. While I was nervous to take such a long break, I think it will be refreshing and will also give me and Scott a chance to reconnect.

My friend and neighbor, Paula, asked me to be in her wedding over the weekend. We found her wedding dress over the weekend and now we have to find the bridesmaids dresses. Talk about inspiration to hit the gym!

I think that is all for now. We love you all!

One more LP to go!

LP = Lumbar Puncture, AKA: Spinal Tap

So, Ethan has had his poor little back poked so many times and it is winding down to a close! Yesterday, he had his second to the LAST LP!!! I was nervous to be in sedation with him yesterday simply because of the last incident. Of course, that was silly of me because there was a HUGE difference- we weren't having a scope down his throat into his wide open airway!

The LP went well. His blood counts are good and the bald spot on his head is being tested for ringworm. They said that Down syndrome kids are more prone to ringworm on the head and that it is difficult to get rid of. I said, FANTASTIC! Yippee for us! *slight sarcasm*. The doctor assured us that it was ok for Ethan to go to school. He has had that bald spot for over a month now and has been to school, so he is fine.

We did get sad news at clinic though...Our dear Dr. Chauvenet (an amazing man with an incredible amount of knowledge) is leaving the hospital after this week. I cried and hugged him. I don't know, we just adore him and we are going to miss him. It is hard to think of finishing up treatment without him or even not having him around when we come back for follow-ups. I wish I had taken a picture of him with Ethan yesterday. So to Dr. Chauvenet- we love you, appreciate you, and we will miss you! Please don't ever change! Thank you for taking such good care of Ethan.

That's all for now- I will try and post pictures later. I took some really cute ones of Scott and Ethan reading last night! Hugs!

Great Weekend!

So, since I rarely get to get on here and brag about good things, I thought that I would take a moment...

You know, Ethan had a wonderful weekend! His eating could have been better, but he was happy and lovey all weekend! He even interacted while I read him a bedtime story last night. We read the Three Billy Goats Gruff. Remember that story? Ethan loved the pictures and laughed when I made my voice go deep for the Big Billy Goat Gruff and he chuckled when I made my voice squeal for the Little Billy Goat Gruff. Ethan usually pushes the book away before I can finish the story, so this was definitely a treat for me too!

Ethan is in to everything. He wants to be UP! He is working really hard on pulling himself up on to things. He has the reach of Inspector Gadget! He makes those little fingers stretch! He is such a joy. He wakes up with a smile and gives the best hugs and kisses a Momma could ever ask for!

Good post! :-)

Thank GOD for insurance!

Check out the "Your insurance saved you" highlight!


YIKES!!!

Well...

Here we go again...

High fever, convulsions, cloudy chest x-ray...We will do another CT in the morning.

Ethan had another fever around 3 am, but Motrin took care of it and he hasn't had a high fever since. He is on Vancomyacin (big guns) and Fortaz. He's been in a semi-cheerful mood.

I just woke up from a nap so I feel a little more rejuvenated and I thought that I would come check in with those who care.

Thank you for caring.
All our love,
Kristen, Scott and Ethan
Rm. 907 (336-702-9907)

Sad and Funny- a little of both

See below for my post I made earlier today- before the observation of irony.

Tonight, while I was making dinner (a rare occasion!), Scott asked me "What happened to Ethan's hair?". I thought that he asked what happened to his hand. Long story short, Ethan's hair is falling out again. A huge chunk is missing from the back of his head. I talked to Jennifer (her daughter, Rachael also has Down sydrome & ALL) tonight because Rachael's hair fell out completely again a couple of months ago. She said that it started in patches but was completely gone by three days later. While this absolutely breaks my heart and I am trying to be strong about this because it is just hair AND we have been through this before AND I know it grows back, it is just another reminder that my little boy is fighting the fight of his life.


Now to end on a funny...Ethan really needs suspenders! When he really gets to moving around the floor, his pants tend to get pulled down. So, ladies and gentleman I present to you- Ethan Faulkner, President of the Future Plumbers of America!

Anniversary...

Today marks the 2nd year anniversary of the day we entered the beginning of some of our darkest days. It has been a long two years, but at the same time it has gone by extremely fast! We look forward to the day that this is all a distant memory.

Ethan has been doing very well. He finished up the Levaquin antibiotic last night, so this week is really going to be an interesting one. We pray that the fever demon stays far away and allows Ethan to continue to gain strength! I will take him in to clinic next week for counts and the follow-up chest x-ray. Fingers, toes, arms, legs, eyes- anything that can be crossed will be crossed that his lungs are free and clear of the pneumonia.

Scott built Ethan a walker out of PVC pipe. Very creative that Scotty boy (as Madison would say!). Ethan gets so excited with the praise that he receives when walking. 2006 will be the year that my baby boy walks!




Ethan will also get to see his Grampa on Wednesday! He hasn't seen Grampa in almost two years! My dad is coming in for a short visit so he can go and visit a friend in Lynchburg, VA which is only a few hours away from us. We look forward to our visit, even if it will be short!

That's it, I think...

Going home soon

Ok, well it looks like Ethan will be released from the hospital tomorrow. He has perked up tremendously and the bacteria has been identified as a strep pneumonia. What is/was the cause? We do not know yet. He will be on the new antibiotics for a couple of weeks and then we will have to have another chest x-ray done in a month.

Apparently, it takes a while for progress to show on scans, so it doesn't do us any good to have it done before we are released. I have been talking to a LOT of doctors over the past few days. Infectious Disease (ID) is clearing him of anything major. We do not need a surgery consult yet because what I originally thought was reflux up from his stomach is actually a nasal region reflux. It's a little weird, but we may need to try an NG tube for feeding to see if it helps and if it does, we may be looking into that lovely G-tube that I have been trying to avoid for a few months.

So, if we come back in a month and the scans still show stuff in his lungs, then we may have to do a lung biopsy, BUT that is a LAST resort.

I swear that I am forgetting something. Both Ethan and I took a nice nap this afternoon. No one really bothered us and I only had to ignore a few phone calls. It wasn't that I didn't want to talk to anyone (well, kind of...I was tired), but more that if I moved, Ethan would have been woken up.

Crazy times...Ethan is going to stay home for the rest of the week and if he does ok through the weekend, we have the ok for him to go to school on Monday. Yeah!

Thanks for checking in!

Brace yourselves, this one's tough...

Ok, well the last thing you heard from me was that Ethan had some CT's and that I was off to work at Victory Junction for the weekend. Well, the CT with contrast showed some definite stuff going on in Ethan's right lung. The pulminologist was then called and he decided to do a bronc (a scope put down the throat and into the airway to gather stuff to culture). I was told that it was a minor procedure done in the sedation suite and it would be just like when Ethan has his spinal taps. Since Ethan has had so many spinals, I was put at ease to go ahead with the original plans of working Victory Junction.

I went ahead and went to VJ and went through the orientation. It was a little past 5pm when Scott called me. I was going to be getting ready to meet my camper in less than a half hour. Scott tried to keep things light, but he knew as soon as he told me what happened with Ethan that I would be leaving camp and heading back to the hospital.

I will cut to the chase...During the bronc, Ethan vomited into his open airway. His lungs and upper airway were filled with pus- more than even showed up on any of the scans. Scott was asked to leave the room and shortly afterward, Ethan coded blue. A swarm of doctors rushed to Ethan's aid, he was intubated and put on a ventilator. Another tube was also put up his nose and down into his stomach. Ethan was now in the Pediatric Intensive Care Unit or PICU. My heart stops thinking of what he went through or even how Scott was feeling when it all happened. I feel like I should have been there- we should have been there together, but I can't take it back.

While in the PICU, Ethan was on a fentanyl and versed drip. One was considered a "paralytic" so he wouldn't fight the vent. Because of the medicine, his bladder could not work either, so a catheter was inserted (thank God he was asleep for that torture!) We have seen a lot of things happen to Ethan over the past two years, but this past experience has to top the list of horrific feelings. The good news out of all of this is: Ethan is so stubborn that not even a little PICU action is going to get him down! And, now we have some definite answers for all of Ethan's fevers.

We knew that Ethan was aspirating his fluids, but even after thickening them, he would still get fevers. Well, his reflux was sending gunk back up into his airway even after being digested. We are going to be talking to a surgeon about a procedure to make sure the flap between the esophagus and the stomach stays shut and stuff can't come back up.

So, Ethan needed some blood while in PICU. All of the massive amount of fluids that were being pumped into his little body made him anemic and his blood pressure was not stabilizing. Another chest x-ray done yesterday morning showed great improvement, so Ethan was taken off of the vent, the tube was removed from his belly and the cath was also removed. He was very swollen and beyond groggy drunk, but he did really well!

I tell ya, Ethan really does deserve a medal. He amazes me with the ability to smile even after the hell he goes through.

Thank you for the prayers, dinners, visits, and phone calls offering support...I apologize if we were not up to visiting today. Sleep has not been in the stars for the past couple of nights. Ethan did not sleep last night and was very fussy. I can't imagine why! Today, he was still wanting and needing to sleep, but he still would not. We got him some benedryl this afternoon and he finally went to sleep, as did I. We got in a few hours and Scott had put a message on the door that we were trying to sleep so no one disturbed us.

Scott and I are feeling better. Of course, with everything that just happened, anyone is going to have a hard time getting me to leave Ethan right now. He looks SO much better, but he still needs oxygen and was starting to peak a slight fever tonight. Sorry, no pictures...we do not want to document the last couple of days with pictures, but as soon as he is smiling again- I will be sure to pass them on! I did get him laughing a little today, but not for long.

I am sure that I am forgetting something, but I just also want to acknowledge my work and Scott's work for being so amazing during this time (as always). I also want to thank those involved with my schooling. I have not been able to even come close to concentrate on it over the past couple of weeks, but I am hoping the next week will bring better things.

We do not know how long we will be here, but FINALLY the doctors are treating things aggressively. I discussed Ethan's chemotherapy with his doctor today. While I am nervous to get him back on it after this past week, I also realize that we have one clear chance to beat the leukemia and this is it. Ethan has had his chemo held so many times over the past year and I just do not want to give the leukemia any more of a chance to come back.

I think that's it- plus Ethan is having a couging spell. Gotta go. Hugs.

Still in...

BIG YAWN!

Ok, so again, short and sweet...

Ethan is still spiking high fevers with an unknown source. BUT, he has had two CT scans. The one for the sinuses came out fine and today he had a chest/abdomen/pelvic CT with contrast to search for a possible fungal infection. He is not on any antibiotics because the doctor wants to see what the pattern is for the fevers- and yes, he had some more fever today over 104 just like yesterday.

Scott made it home just fine. We are so happy to have him home! Scott will be staying with Ethan the next few days since I am working at Victory Junction this weekend.

Now, isn't he so precious?

Hospital- again

I won't make this long- I don't think anyways! Here's the scoop:

Friday: Released from hospital
Saturday: Fever at night
Sunday: Fever again
Monday: Fever again (over 103)
Tuesday: Fever again (104 with Tylenol), chills & misery

After leaving a few messages for the dr. to call me, I call again and say that I am bringing Ethan in. I did, he was admitted. I am not in a good place this trip. I don't know why specifically. I think that it just hurts my heart so much to see Ethan as sick as he is and to not be able to fix it or take it away. I would take his pain in a second if I could. So, that's why I am not in a good place today. I am hoping tomorrow will be better and I think it will be because my husband is coming home! The time that he's been gone has gone by surprisingly fast considering what we've been going through while he's been gone, but I am glad to welcome him home!

That's all- see that was short.

Update with Pictures!

Hello friends! Well, I was able to bring Ethan home yesterday afternoon. We stopped by the school because as we were driving by, Ethan got all excited! He really loves his school! When we got home, we both laid down for late naps and slept way too long, but I guess we both needed it! Ethan is still neutrapenic, but fever-free, so that is why I was able to bring him home. I have to take him in to clinic on Monday for counts. Let's hope that they come up by then!

Scott made it to California fine. He has gone to the family viewing and the rosary. He said that Tia looked good...she had her rosary in one hand and her referee whistle in the other! Gotta love it!

Here's a couple of pictures I just took of Ethan and the before and after pictures from the concert! :-)
Ethan says HI!



Before on the left...After below.

Happy New Year!

Wow, it's been a while since I have posted...my apologies. I hope that everyone enjoyed their holidays! Ours were pretty quiet- we enjoyed the time that we had with friends. I turned 29 on January 2. Last year of my 20's...I am ok with it. I wish I still looked like I was under 30 though! Darn stress! Here's to 2006 being better!

Ethan has been hospitalized twice since the New Year. I am actually posting from the hospital. I "stole" one of the hospital laptops, which is a no-no...all that HIPAA junk. Anywho- we may get to go home tomorrow if his counts come up. He's still neutrapenic, but not by much.

I am now flying solo this trip because Scott got on a plane today. One of our dear family friends passed away last Friday...the 13th. Ethan was dx'd on Friday the 13th. I now hate two things- CANCER and Friday the 13th. Joann was an extremely instrumental member of our family as well as many others. We will miss you Tia! I am so glad to know that Scott is able to be home for Tia's services.

Scott has been such a trooper this trip. Ethan was admitted on Tuesday, but I had to work because I was only working part of Wednesday and then took today off. I had the time planned off because of my birthday present to myself...BON JOVI! That's right, you are jealous! lol! I have been wanting to go since I was young when it seemed that everyone in my family went but I was not allowed to go because of my age. (I'm not bitter...really). That has been the best birthday present I have EVER given myself before! Thank you Theresa for going with me and making sure that we rocked out like there was no tomorrow! WOO HOO!

That's about it for now. I need more time for homework, but hopefully we can go home tomorrow and I can work on it! Oh, by the way...if you call my cell phone and it says that my number doesn't exist or something like that it's just because I can't find the stupid lil' booger and I had the phone restricted just in case someone has it. Pray I find that phone! It has so many numbers in it!!!

I will post some new pictures of Ethan when I get a chance!

Hugs,
Kristen

Merry belated Christmas!

I apologize for not sending out Christmas cards...Ethan kept us quite busy this entire year. Maybe next year will be better! Not maybe- next year WILL be better! Scott, Ethan and I hope that you all had a wonderful time with family/friends this Christmas! We spent Christmas Eve at Chris & Theresa's. We exchanged a few gifts with the girls which was fun. Ethan did not want anything to do with presents this year. Again, next year WILL be better!

Ethan is still doing well with the thickened liquids. His cough is coming back which makes me a tad nervous because his last chest x-ray did not show any better from when he was in the hospital two weeks ago and he is now off of the pneumonia medicine. Fingers are crossed...

Anywho, we hope that you have a Happy New Year! Have fun, but be safe! All of our love to you, as always.

Disney on Ice & Most importantly- We have ANSWERS!

Hello everyone!

Let's recap, shall we? So, you all know that Ethan is in remission for leukemia. He has about 9 more months to go until he is done with treatment. He has been very sick over the past year especially. He keeps spiking fevers with no apparent source. WE HAVE A SOURCE!!!

On Saturday, I drug Scott and Ethan with me to my office so I could decorate my cubie- there's a $25 Target gift card is at stake people! I'm on it! ;-) Here's what it looks like so far (I really should be compensated for that lovely Costco Kirkland advertisement!)...




So, now that you've enjoyed my office space, back to the subject at hand...Ethan was fine and playful- even pulling off the bows from the cabinets. Then, boom! Right after lunch he developed chills. When we got home he was 99.7 and just wanting to be held. He was at 104 within 30 minutes. Tylenol took a long time to kick in, but it did after Scott got him to the hospital. I did not make the initial trek because Theresa and I had plans to take Madison to Disney on Ice: Princesses for over two months. If rushing Ethan to the hospital was a new scenario, I would not have gone to the show, but Scott insisted that I go and enjoy our new annual tradition. My grandma used to take me to see the Ice Capades every year and I it was always something that I looked forward to! I am hoping that Madison will too! And, next year Delaney (Madison's lil' sis) gets to get in on the action!

Ok, so Ethan had a chest x-ray done (pretty routine for him now) and it has been showing for a LONG time a spot on his right lung. This time around, it was more profound apparently and he was diagnosed with pneumonia. He has had pneumonia a few times this year. We also had a swallow study done and it turned out to be our miracle. Ethan has been aspirating thin liquids. Ok, for those of you that don't spend half of your lives in the hospital and know what that means- it basically means that a lot of fluid has been going down the "wrong pipe" into his airway. If he can't get it back out of the airway then it settles and gets irratated/infected which equals...dun, dun, dun, dunnnnnnnn: FEVERS! Oh, and we also discovered that he has reflux too! Fun times...

What do we do for this? We now have to thicken all of Ethan's drinks to a honey consistency (with Thick-It, a tasteless modified corn starch that is going to burn an even larger hole in my wallet...not cheap!). He is also going to be taking Zantac for the reflux. No wonder the poor child doesn't look forward to eating! This is good news even though it is bad news. This is an answer to prayer. While the news is not something to be excited about because of the new processes involved, we are hopeful that we will be able to keep booger butt aspiration-free (made that word up, work with me here) and fever-free.

Ethan was released from the hospital last night since the pulminologist (sp?) was confident that Ethan could do well on Clindamyacin (icky med) at home. Amen. So, I stayed home with him today to allow him to rest and just play at home and then his buns are back at school tomorrow! :-)

Lots of love to everyone! We miss all of our family and friends from home, especially this time of year. Hugs.

Home & Well!

Hi y'all!

Ethan was released on Tuesday afternoon. He went to school yesterday and has been great since being home! He is on amoxicillan, so he should be covered against any infections for nine days at least!

I hope that the holiday season is treating you well so far!
Hugs,
Kristen

Quick update

Just a quick update:

Ethan's fever spiked up high again last night right before leaving for the hospital, so it is definitely a good thing that he is there. He needed to be tested for RSV, flu, infections...So far, the RSV and flu are negative and nothing has grown from the culture sample. I don't know what his blood counts look like, but Scott said that he did finally get some rest (I left around 1:30-2am)and that he was playful this morning. Maybe more info later...

Going back after a month out

I was hoping to post before Thanksgiving and then again after, but I didn't. My apologies...Anywho, I hope that everyone enjoyed their holiday! We spent the holiday at our dear friends house. Thank you Chris, Theresa (aka: T*Potts), Madison & Delaney! Ethan enjoyed a real dinner complete with turkey, cranberry sauce, stuffing, sweet potatoes, mashed potatoes and fruit salad! He also enjoyed his own little homemade cup of chocolate pudding courtesy of Theresa's mom, Becky.


Ethan had a temperature spike up to 102.5 later that night, but we decided to watch him at home. Friday no temp. Saturday, Ethan went back to Auntie's T*Potts' house so Scott and I could attend the wedding of my friend and co-worker, Paula. Her new initials are P.M. Her husband's initials are A.M. Of course I have been teasing her that their initials are now A.M & P.M., but it didn't occur to me until AFTER I had their wedding gift wrapped that I should have gotten them a clock!
Oh well...back to Ethan! He started to have another temp at Theresa's, but it subsided and he was fine by Sunday. Monday, about 4:30 a.m. he wakes up and is 103.5. We gave him Tylenol and took him into clinic first thing later that morning. By the time we got to clinic, the fever was gone (good). LOTS of tests are ran again, including a chest x-ray and CT scan. Neither tell us anything we didn't know already, so we opt to get some IV antibiotics to boost him up and then go home around 3pm.

Ethan was fine all week- great week at school! Ate well, drank well, played well, had great therapy sessions...Friday- fever again. We had a big Saturday planned, including breakfast with Santa and then an Oncology luncheon at noon. We did not make either- I was bummed for him!

Today, he was playful. I was sick this morning with some sinus junk that kept me bedridden until 3pm! Gotta love sinus stuff! Anywho, Ethan started looking puny but he needed a nap and he would not lay down- he only cried. I took him to the recliner and rocked him to sleep. His sleeping was deep but restless, so I knew something was brewing. Sure enough, he woke up with a 104. So, we are taking him into the hospital in a little bit. I have to put some finishing touches on a paper that is due tonight and then we will take him in to get some fluids and antibiotics. That's the story for now. His temp is down to 100, so Tylenol is doing it's job. I will try and keep the blog updated, so check back in.

Hugs,
Kristen, Scott & Ethan

Ethan's Cousin, Eryleigh

Ok, so Ethan was telling me that I should brag a little on his new cousin. Miss Eryleigh Meridian Sheetz was born on September 17th. She has two big brothers, Sebastian, 12 and Jaidyn, 10. Miss Eryleigh certainly kept everyone on their toes during Ethan's Auntie Kimmy's pregnacy, that's for sure!!! Well, she was over NINE POUNDS when she was born and is just so cute! Eryleigh was sent an ultra-cute Adidas sweat outfit from her Uncle Scotty and she just looks so "born-to-play-soccer"! :-)

It is hard to be so far away from the newest member of our family, but Auntie Kimmy keeps us up to date with lots of pictures- courtesy of Shutterfly!!!