First of all, Lacey and Bill made it safely on Friday night, so thank you for your prayers for safe travels. Eli was very happy to see them. Ok, in all honesty, he was more excited about playing with his friends because Justin had just come back from being inpatient. He didn’t even say hi to Mommy until later when we were in the room, but despite that oversight on his part, he really was very happy to have his mom and his Papa here. He understands that Grandma would love to be here, but has to watch Isaiah at home since he isn’t feeling well (although he is starting to feel better, so thanks for the prayers and offers to help in that area as well)! Hopefully we will figure out a way to all be together again soon.
This weekend was full of fun birthday activities! Saturday we went to FAO Schwarz with Barbara and met with the General Manager (William) who generously offered to let Eli come before the store opens any day so he can have the store to himself! I wish the Apple store next door would extend the same offer to me! 🙂 Eli got to play on the big piano and pick out some candy. We went to a late lunch at a diner (I really like the NYC diners) that we hadn’t been to before called The Mansion. I had a burger with sauteed mushrooms and onions and Eli and Lacey had omelets. Lacey claims that her broccoli and mozerella omelet was the best omelet she has ever had in her life. My burger was excellent as well and I can attest that Barbara’s spinach and feta cheese omelet was quite tasty. So there you go, another food review since I know it has been ages since you’ve had one. The manager was also a very cool guy and of course there was singing and a piece of cake involved (4 layer red velvet, yum)! Click the thumbnail below to see more photos:
Sunday morning we went to Build-A-Bear with Barbara (of course) and Eli got to build another dinosaur, complete with an Iron Man costume and cowboy boots. That all goes together, right? 🙂 We were going to head to the Carousel in Central Park after Build-A-Bear, but Eli was tired and his stomach was starting to hurt, so we just went back to the Ronald to rest instead. A friend of Barbara’s gave Eli a Transformers sheet and comforter set for his birthday, which is a really cool set that he can use at the Ronald as well as at home! On Sunday night, our friend Maria who owns the best restaurant in Manhattan (I’m not just saying that because she is an amazing person, I’m saying that because I truly believe I’ve never had better Mexican food than I’ve had at Maz Mezcal), threw Eli a free birthday party for him and 14 of his closest friends! We were SO happy that Eli’s buddies Justin, Sam, Ben, Kate and all of their adults got to make the trip to 86th Street and enjoy a great dinner with us. Mary from Fiber Hair Spa even joined us (she is the one that does Eli’s mohawk) and brought him some tattoos and “Jaguar Green” hair spray! Unfortunately, Eli was starting to feel REALLY bad and basically had to lay down on my lap the entire dinner. He did sit up for the cake and birthday presents though, of course. Eli’s buddies (and their moms) know him extremely well and every single gift he got was right up his alley and he loved them all. So, although he was feeling a bit rough, Barbara did an amazing job of giving Eli a great NY Birthday weekend. Click the thumbnail below to see more photos:
Monday morning we called Dr. Kramer’s office to see when we would get to talk to Dr. Souweidane. They told us to call his office directly and ask him. Of course, nobody ever returned our call, so we sat all day yesterday waiting for a call. Eli spent the entire day sleeping (quite literally as he was only up for a few hours and when he was awake, his stomach was really hurting him). The only time he sat up was to open a birthday package he received from the Animoto.com guys. They sent him an awesome Spy Gear kit that he was very excited about and will undoubtedly be using around the House with his buddies. If I’ve said it once, I’ve said it 1,000 times, we love the Animoto guys (and girls)! If you haven’t done an Animoto video, you have to try it out (it’s free for 30 second videos): http://animoto.com/?ref=muibglwq
 |
| NYC |
Last night, we took Eli downstairs for dinner at the Ronald and one of our friends Amanda brought down her thermometer and confirmed that his temperature was 102. That’s a fever and that means a trip to Urgent Care. We finished our dinner and strolled over to Urgent Care where we had the best experience we have EVER had there. The guy at the front desk was ultra nice, the lady who did his vitals was great, his nurse was amazing, and the pediatric Dr. on call was awesome. We had to wait for a while, but then all it took was for Eli to get accessed in both ports, have some antibiotics put in, and then we headed back to the Ronald 4 hours later.
This morning Eli seems to be feeling a bit better thanks to the antibiotics. I deaccessed his tubes and he got to take a shower this morning. We are praying that it did the trick and that he’ll start to feel better. We called Dr. Souweidane’s office again this morning and it seems as though they don’t know anything about Eli. The receptionist took all of our information and said that he is booked until March, but that this sounded urgent and so she would check with him and find a time they could “squeeze Eli in” sometime sooner. To add to the stress, we found out that Dr. Souweidane is not covered by Blue Cross and Blue Shield (nor are any of the neurosurgeons at MSKCC), which means that we would be responsible for any charges that are above and beyond what Wellmark “allows”. This hasn’t been an issue with anyone at MSKCC since we arrived, so I’m sure this will just mean that I will be on the phone a lot over the next few days trying to make sure I understand everything. No big deal, how much can brain surgery possibly cost, anyway? 🙂 That’s a joke for those of you that are new to my sarcasm and have already started typing a reply.
Another piece of good news that we received is that Eli’s spinal fluid cytology came back as negative for any malignancy, so there is no apparent cancer in his spinal fluid or spine. Also, his urine markers came back normal. We will find out about HAMA by tomorrow and hopefully his bone marrow results will come back this week sometime. We definitely still need the prayers and appreciate them all very much. We are so fortunate to have you all in Eli’s Army. Thanks to everyone who sent Eli birthday cards and packages. Eli always enjoys getting mail here. We have been getting bracelet requests, but unfortunately we won’t be able to send them out until we get back home from NY (which at this point is at a time still unknown). For those of you that would like to get a free “Prayer Warrior in Eli’s Army” bracelet, just send an e-mail to: bracelets@elihorn.com and you will get an immediate auto-reply with instructions. We have hundreds still, so if you need more or if you have lost/broken yours, feel free to send off for more! I will update when I know more!
Facebook
Twitter