Kid's Party - Seth and Jenny's visit

So Seth and Jenny arrived with their kids - Delia - 4, almost 5 and Caleb 2 1/2 who has down's syndrome.

We had a great time the first day! We had an impromtu Kid's Party. Originally I had invited just Adam and Vania and the VanBuren's since Seth and Jenny know all about them but I called and ended up renting a bouncy house for the night - so the calls to others went out! We ordered pizza and had a great time!

THe next morning we were off to Hilton Head!

News of MRI

Great news!!! Best case - no additional growth! This is huge news as this is a fast growing tumor. We were told with this we could expect at least 6 months with him! Huge news as before they were not sure as 1 to 6 months could be expected.

So today was a nice day. We had the normal issues of trying to get out of the house... food etc but we headed to Freedom Park with the boys. Really nice to have them play in the sand. Finn really was in his element with the other kids. He was older than the other ones in the sandbox and really acted like a great big brother. He dug and dug and Elan played right along. We were there about an hour. I had a few thoughts of trying to be a normal family but in reality, we are not - anymore. Watching and listening to other moms doing their normal mom day or nannies doing there normal day with the kids was interesting. I felt like an outsider... like - when will they notice Elan's scar... and if they do - will they say anything. I am a total open book and tend to be the one to say something first. I always want to put the other person at ease. Today I just wanted them all to not notice - but hard not to, right?

I had a great moment tonight too. He wanted to nurse! I let him as dried up since stopped pumping a week ago... too emotional to pump with everything going on. I was getting less than an ounce so made me more upset. Two mornings ago he went under my tank in bed while we were laying there and I let him try - and he did! So this was the second time... he was sooo happy! I was too!

It was a great day for Elan!!!

Fun times this weekend!

So Saturday we tried to make our first 5K event... not to run it mind you - but just to support. It was the cookies for kids cancer. WE did it in typical Miller fashion - went to wrong "Randolph Park" - not the park but actually was the neighborhood. Of course took us 20 min to figure this out and missed the fun run/walk 1 mile for kids. So we went to the cupcakes/bake sale area.

I was hoping to be able to network - sort of happened. We did run into Jennifer of Jennifer and Jeff who were in the PICU next to us with their 9 month old William. He was diagnosed with Wilkes disease and they found out through the ER like we did. They went in on Wed where we went in on Thursday.

William has just a touch which is so great! All they need to do is 1 day a week chemo on Wed. It is hard on her since they were originally told that all they needed was surgery and then being monitored but the day before they were released they noticed a few cells that looked like they could be cancerous around the area. They live on the Plaza - so the same neighborhood we used to live in. We really like them - Erik esp since he is a tennis player :) Talking at the 5K she said she is a CPA and one good thing is she was actually able to see the daylight in March! She also wants to get together - I will definitely take her up on that!

I also met Amy - the mom of Grier - who you see on flyers etc for the cookies for cancer in Charlotte. She was a great person and her mother too. They made us feel like we are at a great place with Bloome. They said several families actually have switched from Levine to Presby - the Bloome clinic. Really gave us a good feeling we are doing the best for Elan.

WE then headed home for lunch and naps etc. Erik and I went for a walk which was nice - just the two of us. We also watched at some p0int the video from Betsy M. regarding Vitamin C. She gave us a book too which I have only glanced through but can't harm Elan so worth a shot for sure!

Erik and I went out Sat night after putting the boys to bed and had wine and awesome meats at Roosters. Really nice.

Sun we went for a "hike" on the greenway - standard Sun am Miller thing to do. Finn took his tricycle - quite a hit as always. Elan had a big smile too and was kicking booth legs! took a great video of that. We then came home - fed boys - put down for nap - studied our Watchtower. Then woke boys up - got them ready and headed to meeting. Nice one since CO visit. BOth of them came up and gave hugs etc. They are both so kind! HE came over Friday with Malcom to encourage us - nice.

We then came home and fed boys then we ate the meal the Phelps provided plus my veggie diet soup. Nice. We have been eating out on the back porch since weather so nice. Really love our house! Finn has been coming to window though after being put to bed to "go potty" so Erik has to help with that.

This am around 4 Finn woke us up since he "peed out" - meaning peed so much came out of his pullup. Bummer! Erik is at work today and I am here with boys and my mom is feeding Elan and Finn playing "farm" in the playroom. Typical normal day - minus the fact mom is here and I am not on campus and Kenya not here... but normal in many ways :)

Doctors' Appointments

Yesterday started my hate of doctor appts. We headed to Dr. Heafner, Elan's neurosurgeon for a follow up. We were in the waiting room for almost 2 hrs! Thankfully we chatted with several other patients who were quite encouraging. One was a couple who lost their 6 yr old daughter to leukemia years ago - they were so kind and shared how they continued on. Another couple our age were there to check their daughter's lighting bolt bottom - the same deal Finn has. His father did Proton Beam Therapy for pancreatic cancer and raves about it.

After the wait we saw Dr. Heafner - he is so kind and loving to Elan. When waiting we had a nurse look at Elan's Eye - she thought it was pink eye - so we called up our regular Pediatrician Dr. Lye. He got us in as the last patient of the day. He did the black light and saw a scrape on poor Elan's right eye. He gave us lubricant prescription (which made Erik late to meeting - I TOLD him it would take time at the pharmacy but you know guys :)) but had to follow up in am with Optometrist.... so started our day today. They said they would try and fit us in - we were there around 9 and didn't get out until 11:30 - 1 hr late for Dr. Bell our Oncologist but she knew what was going on. Erik was there already with Kid's Path (Kid's Hospice) nurse which was good for them to chat. It was the first time Erik met with her outside of the hospital.

Dr. Bell went quite well. She is amazing! I didn't mention above but she wrote a 2 page synopsis for all doctors involved in Elan's treatment which I read in Dr. Lye's cart for him. She put us in such a great position for any issues we may run into. She talked with us for over 2 hrs going over all of our questions and research we sent her. She is lucky there isn't much out there for AT/RT as we had plenty with just a bit! She went over every vitamin with us and gave us thresholds etc. She also talked with us about alternatives etc... really helped us feel better about Dr. B for sure and helped close that door more. She also was realistic with the fact we didn't get a full resection and not really having a ton of hope unless we do another surgery in the future.

So basically 4 doctors in one day is a bit much! Elan is totally wiped since missed nap yesterday and didn't get put down until after 2:15 today. He has been a bit cranky but can't blame him as i am too!

I have been getting a bit sad at night. I bet sharing a full bottle of wine isn't helping either :). I have been stuffing myself with Stacy's pita chips and hummus late at night with wine - probably why put on 5 lbs since Elan has been out of the hospital! I do wake up once a night and feel sad, as do when I first wake up in AM. I want to stay in bed but force myself out - coffee is a great driver for that!  All in all we are both feeling positive in outlook and creating a happy environment for our boys to live in.

Elan has continued to improve today! He tried crawling, but it was hard with the IV in his hand again. His central line was leaking so they took it out. He read a half dozen books with vigor! Cynthia and Sharmel stopped by the room and Elan's favorite book during the visit was about Thumper from Bambi. He flipped the pages with his right hand and grabbed for the book frequently. We are so proud. He is really getting so much of his personality back, it is reassuring. "Reassuring, comforting, and encouraging" are the words of the day around here. Those are the qualities in people we appreciate the most! Whether it be from Dr's and staff or from friends. If people can't be that for us, then we don't want them around.

Elan even takes a few steps if you hold him up. We feel good that he has a chance to return to crawling and maybe walking. Last night he fell asleep shortly before an RN visit, when we woke him up he was having a bad dream. He cried out! It was gut wrenching to hear. He was so scared. And his face was twisted in panic. His eye shocked and mouth open. - erik

March 2nd

So today has been a bit drab. Erik and I drove here with Finn to meet up with Elan. Early in the AM Finn entered our bed to cuddle. Around 7 AM there was a big thunder crash which woke Finn up. He asked me "will that make Elan sicker?". I of course reassured him... such a loving boy.

He went promptly back to sleep - I actually had to wake him up at 9 AM to start the day. He was cranky all AM and wasn't cooperating with getting out the door. He insisted on daddy getting undressed and redressed with him... so not going to happen. We didn't make it to the hospital until 10 AM.... not the original plan. Kenya was to pick him up to take him to a movie... he wasn't wanting the movie from the onset.

We arrived at the hospital and had gifts from the Lassens, Potters and Terrenez families. Beautiful pictures, cute Cars toys, and yummy cookies! Awesome!

This evening Mom called and apparently she is totally over us and our parenting style with Finn. She is upset regarding our lack of consistency and routine - hello - we have a boy with AT/RT in the hospital right now and Finn is not in his regular routine, sorry!!! Frustrating but we know she is totally exhausted too. My parents have been totally amazing throughout all of this. Mom has stayed over here with Elan and kept up our laundry etc.

She is getting wacky now with Dad back in DBQ... she called saying she spent 1 1/2 hrs rearranging Charlotte's meal she provided us - basically putting in different containers. She then went off about parenting style and how Kenya and she are able to keep all well with Finn but we can't ... we are the parents and of course he is showing his true feelings to us.

Tonight Elan's central line started leaking so they had to take it out... quite an ordeal. Dr. Johnson is totally amazing. He was able to find a vein in Elan's arm when no one else could. It is angled a bit odd but will work! there was talk about having to go through his forehead to get one so I am thrilled with the one we now have. He is going to be given IV fluids through it tonight and then fed through it Sat and Sun. Monday we are going to have the Barium test and then the feeding tube put in Mon or Tuesday.

I feel so confident with his abilities and concern for our baby. He stops by at least twice a day just to check in. I love him so much and just would be a tizzy if he wasn't around to make me better! When we hear bad news he reassures me and for some reason I just feel better after talking with him - even if it is the same outcome. I am told something and see him in the hall right afterwards and all is just a smudge better. I think I like him because he has a townhouse right off Briar Creek :).

E