Thank you to everyone for their outpouring of support. Between the CarePage Message Board, Facebook, and txt messages on our cell phones, we were inundated with encouragement and we know that God heard from a LOT of people today regarding our Eli. Today went pretty well. It started by getting Eli’s port accessed (again) and going up for a spinal MRI. I had no idea how long a full spinal MRI would take, but it ended up being about an hour. Thankfully Eli slept through the entire thing. After the MRI, we had the spinal tap done. Eli was cracking jokes with the nurses and assuring them that he would “definitely wake up very grumpy”, which they had a hard time believing since he was in such a good mood. He actually didn’t do bad at all, I think it had a lot to do with the fact that New York Grandma Barbara was there to entertain him the entire morning. After the spinal tap, I saw a Nurse Practitioner who told me that the preliminary MIBG and abdomen CT scans were clear. The “spot” on the brain is the only thing they saw. Dr. Cheung did the spinal tap and told me that the results will take at least a day, so we might know the results tomorrow, but it might not be until Monday. Tomorrow we don’t have anything scheduled, but the NP said she would probably call us in to go over the spinal MRI results at least. I left Eli accessed just in case they decide they want to get something from him tomorrow. If they don’t, I’ll just pull the needle out and he’ll be free of tubes this weekend. Of course, Grandma Barbara has teamed up with some of our other NYC friends to have a great weekend of fun and parties planned. Somehow Eli has calculated that he is going to have 5 birthday parties in NY and one at home. Knowing Barbara, it’s probably accurate. 🙂 For those of you that have asked where they can mail Eli a birthday card, here is our address at the Ronald McDonald House:
Ronald McDonald House
Attn: Eli Horn – Room 512
405 E 73rd St
New York, NY 10021
Honestly, I haven’t seen Eli joke or play or dance around in NYC more than I have today. He has been pretty darn happy, very silly, and has had good energy. Even last night he was joking around and we had fun going out to eat at a local favorite, Dallas BBQ, just the two of us. He had the waitress laughing at one point because I asked him if he wanted me to order him yellow rice with his meal. He said, “Well, you can order it, but I won’t eat it.” He wanted to pray at dinner, which is odd since he usually wants me to do it. He said, “Dear God, thank you for this food. I pray that my friends will get better and I pray for my friend Justin that he will get better because he is inpatient. Amen.” I had to hold back the tears as I imagined so many people out there praying for Eli while he was praying for all of his friends. He never asks God to help him get better, I think that is because he doesn’t really associate himself with being a “sick kid”. I explained to him why we had to stay a while longer and that it was because the doctors saw something that they wanted to get a better look at. I explained the two procedures (MRI and spinal tap) and he didn’t seem concerned about either since he could sleep through both of them (one with the assistance of the cherished “sleepy medicine”, or as Eli calls it, “Propofol”). 🙂 At dinner, Eli also taught me how to cure a “brain freeze” by sticking your thumb on the roof of your mouth. I asked him where he learned that and he said, “Titus taught it to Griffin when we were at Disney.” On the way home, we were both listening to my iPod and signing Third Day’s “Tunnel” song at the top of our lungs. We then ended the night by watching Star Wars II together.
Knowing that next week we will likely be starting a new protocol to battle a relapse in the brain or doing a brain biopsy, Lacey wanted to get out to NY in time for Eli’s birthday on Sunday. Since bad weather is moving in to Iowa again, she decided to leave today. After getting packed, she had to take Isaiah into Dr. Paschen because he had spiked a fever. Sure enough, he has a bad virus that is going around and needs to be on a home nebulizer treatment for a cough. Bringing him to the Ronald McDonald House and Sloan wasn’t an option since he would be contagious and around a lot of immunocompromised kids. So at the last minute, Lacey’s mom agreed to take care of Isaiah at home instead of go with her to NY while Lacey’s step dad jumped in the one way rental to drive with Lacey to NYC. He’ll return on a one way flight home Monday. It’s definitely going to be hard to not have Isaiah with us for an unknown length of time, but if we’ve learned nothing else during the past 20 months, it has been to be flexible, adaptable, to ask for help when we need it, and to do whatever it takes. We have also learned to not take for granted the family that we have that is willing to do whatever it takes to help us do whatever it takes. 🙂 I don’t know how, when or where we’ll get back together as a family, but we’re taking it one step at a time.
We don’t have anything scheduled for tomorrow, but hopefully there will at least be some spine MRI results they can go over with me. Otherwise, we’ll just be anxiously awaiting Mommy and Papa’s arrival! Thanks again for the prayers, we really appreciate them and know that many of you have been sending them nonstop since June of 2007. I will update as soon as I have something to report. For now, I have to entertain a very energetic young man that wants to show me what he has made with a coke bottle, a syringe, a bottle cap and a wad of chewing gum. 🙂
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