Fall is just about here and school already is- changes, changes, changes:

Summer was great, but it's school time now... Ethan started 2nd grade last week and I think this year at Carter Lake is going to be much better. He has a new para and teacher and he seems to like them both a lot. Ethan is still going to physical therapy a couple times a week and really, really enjoys his therapist. The orthotics are working out great at stabilizing him as well. Unfortunately, he hasn't taken to using canes. He might just bypass them, but his confidence about walking independently is more of an issue than the actual physical feat. Physically, he's doing awesome and we can foresee progress, progress, and more progress. His MRI scans were all clear and all else is well. I don't update this much anymore, as most friends and family members get verbal updates if they need them. However, if you're a random person looking for information because you have a loved one who has gone or is going through something like Ethan, feel free to message me if you have any questions. Because of the type of treatment Ethan has had, it doesn't just end when chemo and radiation are over. He'll continue to deal with and work through changes and challenges probably for the rest of his life. Yet, he is still a happy and very wonderful little boy. We hope to continue this pattern of growth and happiness for him. Thank you All for your support through this journey. Ethan is doing amazingly well and each of you had a part in his recovery. Sending your love, positive energy, and prayers are a big part of why he has overcome so much! Love to all, Nikki

*Working on Walking*

We've been here in WA a few months now and have accomplished a lot. Ethan just wrapped up first grade and is enjoying summer time. While it's not quite sunny, it's still nice to relax a bit more. He continues to have lots of appointments, despite the fact we're already almost a whole year post chemo!!! He's been meeting with his new physical therapist for just over a month now and it's going great. Right away she noticed he was a bit too bendy (over-stretching) and ordered some orthotics to straighten him up a bit and help him stabilize. They should come in next week. We're hoping he can use those with a cane to get around. That is quite a step up from the big, clunky posterior walker! Also, she's reinforced and motivated me to work with him at home. Low stress exercises like yoga, standing games, or even sitting on the bosu ball while playing wii. Ethan also practices taking steps all on his own (no walls, walker, furniture, etc. to hold him up). He can get about 4-5 steps before he gets a little psyched out by it all but he is doing amazing, of course. I am so happy for him! His new school is really close to us and he's made a few good friends. I have to admit, he's not as excited about this school as he was his San Antonio school, but we're hoping 2nd grade will be better. This upcoming Monday, we go to Seattle Children's Hospital for a second opinion on facial reanimation. Yesterday, he met with the neuromuscular team at Madigan, here on JBLM. They will help to make sure his needs are met in the social and academic arena. It's good to have a little guidance and encouragement on our side. In a couple weeks, he'll go in for another MRI and scheduled blood work. I'll post the results. In summary, Ethan continues to move in a positive direction. Keep our little guy in your prayers, he is doing so well with all your help. Best to you and yours, love to all!

Last minute surgery-

We went in yesterday afternoon for a general surgery consult to discuss and schedule removing Ethan's port. Turns out, a patient had just cancelled an appointment for this morning, so they scheduled Ethan in. We did pre-surgery processing last night, got up eeeaaarly this am, and he was in and out in just a few hours! The surgery went smoothly, the doctors were very kind, and Ethan's already home playing his Wii. Kinda crazy how it was just thrown together, but it all worked out. He now will only have to get blood drawn every three months and will not have to be admitted if he gets a fever for a minor illness. YAY! We are glad it's done. We now have a souvenir, too. We have yet to keep anything left over from his surgeries, treatments, etc. but I thought keeping the port would be cool. Much easier to hold onto than a giant radiation mask. Until next post. <3

Getting Settled

It has been a really, really long time since I've posted. Ah, but finally, here it is. Since the DC trip, we have been busy. Ethan continues to do amazingly well. He practices walking all on his own! Just a few steps at a time now but progress is progress. He also adjusted really well to going full days at school in San Antonio. In late March, our house was packed up and we started our journey to WA. We visited several family members along the way and had a great time. We've been here at Joint Base Lewis McChord (JBLM) for a couple weeks now and we are all settling in nicely. The weather is quite a change. It was high 70s, low 80s in San Antonio when we left and it's pretty much in the 50s here daily. It sure is beautiful though. There are an amazing amount of trees here. Our neighborhood is quiet and beautiful, too. Again, Ethan is adjusting really well to school. Although he misses his friends and helpers in San Antonio a great deal, he's getting to know his new teacher and assistant and enjoying it. He has yet to start up PT again, but should be getting in within the next few weeks. Since he is really getting strong, we feel he could benefit from physical therapy right now more than ever! He has a lot of doctor's appointments on the horizon; eye doctor, surgeon (for port removal), pt and neuro eval, etc. Before we left San Antonio, Ethan had an MRI. They did spot something down in t9-t11, but I have been assured not to be alarmed. It is likely just an enlarged vein. They have noticed it before, without mentioning it, but this time it was more prominent in the scans. They are not concerned enough to order an unscheduled MRI, so we will follow up on it in a few months at his regularly scheduled time. They will order thinner slices to get a better look. I have to admit, I was a little freaked to hear about it when they initially called to notify me of the results, but it was a hectic time (packing and hitting the road) and I was a bit more stressed than usual. However, since meeting with Ethan's oncologist here, I've calmed down a bit and realize they have to inform us of anything they see even if it is little to be concerned with. Ethan's oncologist here doesn't seem to think it is necessary for Ethan to keep his port in any longer either. That will keep him out of the hospital if he gets fevers from common colds, flues, etc. In summary, progress, progress, progress. We couldn't be happier about all Ethan has overcome. Ryan has been busy in-processing and has yet to start his actual job but hopefully will be able to soon. I wish I could say I have done a good deal of unpacking, but I haven't! I keep finding other things to occupy my time... In essence, all is well. We hope the same goes for all of you. Thank you for staying tuned in and love to you all. <3 Nikki

DC, school, etc.

The DC trip was informative. Basically, Ethan's paralysis is not typical. We met with several doctors while we were there and each sat with us and reviewed their ideas and the potential for reanimation. They are currently reviewing Ethan's case with other colleagues in the facial reanimation field before proposing an actual plan. They eluded that they may be able to give Ethan a smile and would probably start on the right since there is no movement there now. Yet, if that was successful, he would then have more asymmetry than he does now, since there is only mild movement on the left side of his face. Also, the type of surgery they could possibly give does not provide spontaneous movement for a smile. That is, he would have to mentally command the muscles in his face to create the smile. Thus, if they later go in on the left too he could maybe lose the spontaneous, natural movement there. I assumed a smile would also provide him with the ability to close his lips too, but they don't think it will provide him with that.

Surgery would require taking a strong, working muscle from his leg and transplanting it to his face. They ran some tests on the right side to see how much movement he had there and unfortunately they can no longer detect any temporal muscle, but did detect a weakened masseter. Visually, they could discern both muscles working on the left.

I'm not convinced at this point that a surgery is worth it. However, I've yet to hear back regarding their final recommendation. Maybe they will come up with something that will work for him. Additionally, they informed us about potential future surgeries; brow lifts, lid weights, and other procedures that may be of help in the future as gravity or lack of movement begins to cause drooping or dryness of the eyes.

Overall, I was reassured that Ethan's progress has been good and most of the doctors were impressed with how well Ethan has adapted to his disabilities. He has come up with clever sound substitutions and efficient adjustments to eating and drinking. I'm relieved the trip is over but very thankful to have had the opportunity to go and learn about the opportunities that may be available to him now and in the future.

Meanwhile, Ethan has been doing very well in school, attending all day. He got honors and received good citizen recognition this grading period! He misses his home school teacher very much, but is happy to have made some sweet, new kid friends. It's too bad he has to start all over again in just a month.

Ryan has been working hard in the field at BOLC and recently got a promotion to 1LT! I have been busy getting rid of unnecessary stuff - trying to lighten the load for our move at the end of the month. We're all getting anxious to go.

Uncle Cole split town shortly after we got back from DC. We miss him VERY much! We hope he settles in nicely to California and we"ll be sure to visit him a lot. Thank you, Dr. Pullfinger, for all your help. XOXOXO

Also, thank you to my mom who hopped a train to San Antonio last minute so that our trip to DC was a success. Love you!

That about sums it up.

Best to all! <3

Reanimation, progress, progress, progress...

It's been quite a while since I posted. I suppose that's a good thing! We have all been very busy. Ryan started BOLC, Ethan started going to school, and Brynn and I are getting a little more quality time together.

Ethan was getting home-schooled, as you know, but he recently started going to his first grade class just a few weeks ago. He is really enjoying it and after only a week he decided he wanted to go from 2 1/2 hours a day to 4 a day. His class mates have received him well and he's having a lot of fun. This past Friday he had his first field trip to the Magik Theatre downtown. He got to ride the bus there too, which he couldn't wait to do! The only thing he is sad about is his upcoming homeschool teacher's departure. She has been meeting him at school to help with the transition. I think he only has her for a week more. He has really bonded with her and we're very grateful.

Bethesda, the hospital in DC which was interested in Ethan's possible facial reanimation, has been in contact with us and scheduled an appointment with us on February 15th. We still have no flight plans, but they have reassured me it will happen. I'm crossing my fingers as I think it is important for Ethan to get this consult. We are moving to Seattle in late March and, although there are doctors there that can review his case, it's more likely we'll have a second opinion if we get out to DC before we move. Plus, time is of the essence as they will be testing his nerves and muscles, reading reports and scans, and checking to see if there is any potential to reanimate his face. Nerves and receptors die out after a lengthy lack of use. It's a little nerve racking going through this process but we feel it's really important to investigate anything that could make Ethan's life a bit easier. A smile goes a long way...

We continue to go in monthly to get his blood drawn and it always looks good. He also had a recent MRI and his scans continue to be clear!!! They have talked about removing his port recently as well. I am hesitant, but they reminded me that if he gets sick with a fever he automatically has a hospital stay due to the port. That is motivation enough to get it removed! We'll see if anything develops further with the facial reanimation and then schedule the port removal based on any need for it or lack thereof. Ethan also continues to make progress. We've discovered he can stand unassisted for long periods of time - up to a minute or more. That is, not holding on to anything at all! He's not walking on his own yet but I am more hopeful than ever that he will some day. When he goes to school he uses his walker. His wheelchair is still needed for long walks and all day physical events, but he mostly relies on his walker. Also, he is becoming more independent when using the restroom, which is amazing!!! I think when we move into our new house in WA, which will be ADA, he will really flourish and become fully independent when it comes to things like the restroom.

Almost forgot to mention our Make A Wish trip. It was awesome. A perfect vacation for the kids. A non-stop theme park extravaganza. From Give Kids the World resort to Disney, Universal Studios, and Gatorland, it was a fastpaced, never get bored kind of trip! I'm not sure we will ever be able to top that vacation - at least from a kid's perspective. And, boy, did Ethan and Brynn deserve it!

We are very thankful things continue to look up for Ethan.

We wish you a lovely February! Thank you for keeping our family in your hearts.

<3 <3 <3