Another MRI -- no results yet

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Last night Manny and I left after dinner and stayed in Atlanta in a hotel. We had a nice time playing in the hotel room, hanging out at Publix and otherwise doing very little. I had a hard time getting him to sleep but he finally gave up around 10:45 PM.

I got up around 5:50 this morning and got everything packed up, woke up a very sleepy Manny, and headed to Scottish Rite hospital. I had to be at registration at 7 AM and that went smoothly. I was then sent to radiology where I filled out more paperwork and waited. A mom who was there with her son helped me navigate some of the paperwork. "You sound like you have experience with this," I said. She said that her son was 6 years old and had numerous MRIs. When she said that I noticed cafe au lait spots on his neck, as well as a bump under his shirt at his breastbone. "NF1?" I asked. She said yes. We didn't' get to talk any more as they were called back.

We didn't have to wait too long before we were sent to a "sedation" room. Manny was extremely unhappy about the blood pressure cuff, the O2 saturation sensor, and the gown. He was quietly fascinated, however, by the actual placing of the needle for the IV. After one vein blew in his left hand, it was on to the right hand. He stopped crying about the tourniquet long enough to sit in wide eyed silence while the actual sticking was done in both hands. Then horribleness ensued when they taped the little splint to his arm and taped his fingers to it. I was left for about 20 minutes with a hysterical thrashing baby. I pretty much used all of my strength to hold him down and to keep him from tearing the IV out with his teeth. I was actually grateful when they sedated him. I watched him go to sleep then left for a walk. About three hours later he was returned to the room on a stretcher and still sedated. He woke up just minutes later, groggily had some juice and potato chips, and we were sent home.

No results yet. The MRI will be sent to Dr. Reisner and we will have some results next week. Maybe. This was an MRI of the brain and spinal cord with contrast imaging.

I liked all of the staff at the hospital. Everyone was very friendly, something you don't find as much at "grown up" hospitals. I sat in the room with my earphones in playing with my iphone so that I couldn't hear the other disgruntled children. I don't know how the people who work there can stand it. Once again my trip to Children's, especially the neurosurgery area, makes me realize that, at least so far, we are lucky.

Jake stayed home with his dad and Granny. Steve's parents moved up here this past weekend and Elaine has already taken them off of my hands Tuesday morning so that I could work and stayed here last night so that Steve could go to work in Alpharetta this morning. She kept Jake until 4 PM today, which gave me a chance to straighten up the house and cook dinner when I got home. I am so amazingly grateful for her, because without her help in the past our only "guilt free" options were either for Steve to take a day off of work or for me to take Jake with me to the appointments. She has had so much fun with the kids that she is going to come get them tomorrow so that I can sew. I have my much anticipated debut at the Chattanooga Market on Sunday and her coming to help means that I can go to bed tonight and not stay up until 2 AM sewing. Yay! I don't think that she has spent a day without seeing the kids since she got here on Saturday. What an amazing blessing to our family to have this kind of love and support for us. Its so very good for the children too.

When I got home there was a mysterious box at the door. Some of those crazy Phishhookers have gone and sent us another care package. A giant box of crayons and coloring books and a toys-r-us gift certificate for the kids, yummy bath stuff for me, a copy of the Phish show in Asheville (the one we missed a few weeks ago.. isn't that cool?), and a six pack of rare out-of-season Bells Brewery Two Hearted Ale for Steve (I get one... too). Thanks so very very much for such a cool package. It came exactly at the right time.

Here's a video of Jake with his new crayons. Check out his new favorite word (I have NO idea who he learned THAT from) at the very end. Somehow when he obtains a habit it is already well-established before it begins... Oh well... I hope his teachers are understanding.



We are all happy to be back together as a family tonight. Jake is happily crayoning, Mom and Dad are going to have a beer, Manny is tired and laid back and playing in his squeaky shoes (a gift from me that I found in the hospital gift shop). Hopefully the news will come quickly and it will be good.

Did I take a break?

Yes, yes I did. I can't believe that I haven't blogged for almost a month. I guess I have been taking a break from everything....

In short, nothing has happened on the medical front with Manny at all. He is scheduled for an MRI in a couple of weeks, and I was assured by his doctors that it is alright to wait. I have managed to put my faith in them, and try not to worry myself stupid. Meanwhile I have been taking the boys on outings almost every day, well... at least until the past week, where I have been trying to work a lot.

I went to the various musical events with a lot on my mind, and have had a lot of experiences since I last wrote, and a combination of all of my experiences has left me somewhere in between a state of happy acceptance, and a state of intense angst, anger and despair. I alternate between these two extremes from moment to moment.

I can't believe how fast the summer has gone. I noticed only last week that Jake will be beginning school so early as August 7th. I was not prepared and scheduled our big family vacation the week after that, so we had to cancel. Maybe under different circumstances I would take him out of school, but he is already one of the "special kids" in the integrated classroom. I want him to make connections and be "integrated" as much as possible. A lot of people have trouble understanding why I would cancel our MUCH looked forward to vacation with a large group of friends for a silly first week of preschool, but things are different for us.

Manny:

Manny continues to make progress and has learned a lot of sign language. His speech is pretty much nonexistent, and the words that he does use are almost unrecognizable to anyone but his parents. His motor skills are still that of a child about half his age. He is a sweet and funny kid with a lot of personality and a lot of frustrations. I was so amazingly grateful for the huge outpouring of love and prayers for him when we found out that he had a brain tumor, although I am almost embarrassed by the fact that his "brain tumor" seems to be "no big deal" in the short term, and that we received so much charity when really, its just going to be part of our lives, and we aren't facing an immediate devastating year(s) of surgery and treatment and recovery. Well.. that may come later..... To be honest, I was hoping for answers, for a cure, for surgery that would cut whatever was making my kid all messed up out of his head and make him "normal." That just isn't the case. He is a classic case of regressive mental illness and all we can do is wait and see how bad it will get, or how badly we overreacted....


Jake:

Jake can delight me or make me insane.. sometimes in the same moment. I am so proud of his ability to navigate everyday life and adapt. His speech improves, though you have to listen SO hard to really understand him, and sometimes I'm the only person who has practiced hard at speaking his language. Even then, I have days where I just DO NOT get what he is saying. He speaks in riddles.

He has spontaneously begun the process of potty training, which is very surprising to me since he still seems to not care if he is wet. If I remind him every hour he will pee in the potty but if I forget he walks around wet. He still has not pooped in the potty which gets messy since I let him go around diaper free, if not for any other reason than to save laundry and money.


The Family:

Steve works hard all week and I stay home with the kids and try to work. His parents are moving up here this weekend and supposedly Steve's mom is going to start helping me with the kids a day or so per week. It would be a great help, but I'm not getting my hopes up yet. On the weekends we go play. Jake experienced his first kayaking trip on the Hiwassee river. Well, not really a whole trip, but I picked him up at the upper end of the camping area and we floated to the take-out. He was at ease and it was really cool. I can't wait to take him down the entire river... probably in the spring.

Me? Do you want the "I love my kids, I am so blessed" version or the "I feel like a prisoner and a slave to my situation and I'd do anything to get out of here" version, because I am capable of both. I feel a lot of pressure. I try to internalize a lot of my worry, but it just comes out in outbursts of yelling and anger. If I'm playing with my kids and family I feel like I need to be working and if I'm working I feel like I need to be spending time with my family. The cycle of guilt is really starting to get to me. I need to be doing more with Manny... getting him into early intervention and all, but I am so tired, and honestly, I wonder what good it will really do. Jake begins school in one month and maybe I can find some sort of balance then. I can be honest and say that I am really only happy when I escape from my kids for a few hours or when I am out and about WITH my family, playing and having fun. Everyday life, chores, work, therapy, doctors appointments, homemaking... I dread the days when that is all that is in store because there is just so much, and I never accomplish what I feel is expected of me.

I know very very well that I have no right to complain, and I am reminded of this fact constantly. My bitching is yet another source of guilt for me.

Tomorrow we are taking the kids to the Cherokee Farms Fiddlers convention. Its a 2 night music festival and I am going to be peddling my sewing in a booth. Steve will be in and out but will mostly be helping his parents move, so I'll be on my own part of the time with the booth and kids. I was really excited about challenging myself by keeping both kids both nights just to see how it went, but Steve says he is going to bring the teething Manny home at night and I really can't argue. I am disappointed but he is probably right.. I probably couldn't handle it. I'm nervous and excited about vending at a music festival after so many years and I've worked my tail off just to be able to afford the vending fee. Whether I lose money, make money or break even, I know that it will be a great experience for the kids, and that they'll come home exhausted and happy and begging to "go camper see the music!" again soon.

Living through...

We are still waiting for an MRI appointment for Manny. I call every day to talk to the "MRI scheduler" at Scottish Rite, but I haven't really gotten anywhere. Tuesday, while Cindy (Jake's OT and Dr. Michaels wife.. in case you're just tuning in) and Jake and I were going hiking down the new walking trail at their offices, Dr. Michaels must have spotted us out a window and came to talk and ask for an update. After being so upset at his office last week, I was glad that he came to talk. He has made sure that "Joyce" at his office will always be available to me to help me schedule things and help me find a contact person at various offices. I am becoming to realize that maybe the lack of an attitude of urgency that the offices have is probably a "good" thing, although I am still making sure that I pester the crap out of everyone and make sure that things move forward.

I'm still very confused about about the "brain tumor." Although that word sounds so amazingly terrifying to a mother.... from my reading I'm wondering if the spot on his brain is anything like the cafe-au-lait spots on his body... just another birthmark? Something we will need to monitor but not an emergency? When I talked to Dr. Michaels last thursday, he said that the Dr. Reisner would be the one who would direct me towards treatment, and mentioned radiation, surgery... That terrified me. Absolutely threw me into a mental tailspin. After talking to Dr. Reisner, I feel a bit better.. slightly less frantic. I still want answers and am reading and watching youtube videos about NF1. It is a fairly common (1 in 5,000 people) disorder and can vary so much from person to person.

Meanwhile, in the past week.. my husband and I have been blowing off a little bit of steam (anybody on my facebook will already be informed). We were very excited about a Phish concert in Asheville, but sold our tickets because we just didn't want to be that far away from Manny. We were in the process of getting rid of our Knoxville tickets and decided at the last minute to leave the kids with my mom and drive for a quick overnight trip. It was the best therapy that *I* have had in years. I love the musical community, all levels of it, big or small.. and the energy that I absorbed from that group of fans will carry me on for quite a while.

When we got home from Knoxville there was a box on our counter that had just been delivered from Charles Vergos' Rendezvous Charcoal Ribs. It was marked as from a "Bea Arthur." We haven't received a package from a dead movie star in quite a few weeks, so we were perplexed. It seems that the online Phish community that I got Steve hooked on when we got married had sent us a huge meal. It was SO amazingly nice not to have to cook for the rest of the day after our little outing... and it only deepened the sense of community that I have felt with these people since the early 90's.



Thats just one example of the huge outpouring of love and support that we have experienced in the past few weeks. Sometimes I feel like its more than we deserve, because, after the initial shock, we are getting the feeling that, just like Jake's neuro/social issues,that this is just going to be a long long road that, while the past few weeks have been the scariest part of the roller coaster, its going to be long hike full of ups and downs. Thank you to everybody that has contacted me, sometimes completely out of the blue... and offered support, to watch my kids, given us gifts of prayer fellowship and tangible things. I never EVER know the right thing to say or the right way to act when someone offers their love and support, so I say thank you now.

Unless Manny's appointment for his MRI gets scheduled for Monday (which is pretty impossible at this point) I am hoping to head up to Bonnaroo to see Phish on Sunday night and stay with a friend up there. I feel guilty for running away and having fun.. but then again sometimes I don't know what the future holds, and I just need to inject a little more of that fabulous energy that I feel when I'm around music and energized people.

It was the possibility of music that made me keep the date open for Jake and Ariannes birthday party for Saturday, even though I had no idea what I was walking into last Friday. When Manny and I went down to Atlanta I was sure as the shoes on my feet that I was looking at brain surgery or doing a lot of research about radiation for my tiny boy. I was "sort of" there when my father had brain surgery about 10 years ago, so I have a tiny bit of experience in that arena... but that can't really compare to the fear that I felt on my drive down there. In the back of my head I was frantically trying to plan a party with food and live music.. with unestimated guests.... I think it was the only thing that kept me from breaking down, screaming and just simply not being able to function on a level that I needed to.

Jake totally knew that the party was "for him" (little did he know, eh?). He ran around counting his friends, and you can hear him doing so here:



"One friend, Two friends! THREE Friends.. TEN FRIENDS!!"

Ten must be a huge number if you are four.

pictures of the party here.

(Elsa and Steve... you can not even imagine how much I am STILL thanking you every day for helping me with this....)


My husband told me not to stay up late... and here I am at 11:20 blogging. He says I'm getting "the crazy eye" from lack of sleep, but at least this time its from going down and wandering around the Riverbend Festival in Chattanooga last night, and not from sitting in a chair crying when I'm supposed to be in bed. I don't think its possible to describe how understanding this man is. He somehow knows that my trips to see the music aren't just excuses to "party" but some sort of therapeutic missions that I can carry with me for months on end, and he loves me enough to work with me on going to see shows. I love him so much.

I love all of my boys so much.





P.S.... due to popular demand.. I am working on changing the name of my blog.

Visit with Dr. Reisner

This morning we drove to Children's Healthcare of Atlanta. I was very pleased that we got to see Dr Andrew Reisner which was unexpected. Dr. Reisner looked at Manny's MRI disk and within a few minutes said "Ok. Take a deep breath. This tumor is not exactly something that I am going to get really excited about." It was a nice first thing for him to say.

Dr. Reisner feels that the spot on Manny's thalamus is more than likely a neurofibroma due to Neurofibromatosis (NF) possibly Type 1 (NF1). He feels like, although it needs monitoring, that it isn't yet time to do surgery or begin treatment. That was totally unexpected, and good to hear... I think. So he has a brain tumor... and we just leave it there... and watch it....

But what about Manny's symptoms? Dr. R ordered another MRI, this time of the brain with contrast as well as an MRI of the spine. I "think" (it was a long day) that he suspects another tumor on Manny's spine. The MRI has been ordered to be done in the next couple of weeks, this time in Atlanta, probably at Scottish Rite hospital.

Dr. R was very interested in what I had to say about Phelan-McDermid and said that he wants to be given the results of the genetic testing ASAP (when it is done, of course). He also gave Manny a preliminary diagnosis of NF1.

I'm trying to feel better. I guess the good news is that we do not have to do surgery or begin radiation immediatly. The down-side is that we probably eventually will, and that its looking more and more like Manny is going to have problems his entire life. It is a lot to take in.

Tomorrow is the party. I can't think of a better time to be surrounded by friends.

Something...

I spoke to Dr. Michaels shortly after the last post. As usual he put me at ease as much as is possible at this point. He was also disappointed that we were unable to get an appointment with the neurosurgeon sooner. He promised to call as soon as we were off the phone. I asked him questions.. like where the tumor was located. It is in the thalamus. Thats the center of the brain. If your head was an apple.. that would be a seed. I don't like that at all. Not one little bit.

He said that if it were asymptomatic, then they would probably just monitor, but since Manny is showing so many symptoms, that they will probably opt to try to remove/shrink it. He mentioned surgery, radiation.....Dr. Michaels is very clear that this isn't his speciality, and that he will defer to the brain surgeons to tell me what is what. We hung up after he promised to make things happen faster.

The nurse called and told me that everybody had gone home at the neurosurgery group, and that they were booked solid through next week, but she would talk to her supervisor tomorrow and see.. Dr. M's nurse just wanted to assure me that they were working on it. As I was walking out the door to go see a friend and "take a break" the phone rang again. We have an appointment tomorrow in Atlanta at 10 AM.

Steve went with the kids to Erlanger in Chattanooga to pick up the disk from radiology records so that I can take it with me in the morning. I came home from my visit to an empty house. I can't remember the last time I came home from somewhere and nobody was here.

I am in some sort of survival/nightmare/dream state. I can't talk normally to anyone at this point and, for the third time in my life I wonder how "everybody else" can just walk around doing their normal day-to-day thing. I may throw something at the next person who tells me that I'm strong.. or that I'm a good mom.

Tomorrow.. get up.. get Jake ready for the sitter, get Manny dressed.. should I pack a bag? What's going to happen? Is this real?

Frustration, Anxiety, Anger

Almost 48 hours ago a nurse called and told me that they had found a tumor on my baby's brain. After I called the pediatrician's office twice, I finally got a call-back saying that they had Manny's appointment ready with the neurosurgeon. That appointment is scheduled for 2 weeks from today.

Manny is definitely getting worse relatively fast. Within the week between the visit to Dr. Michaels and the MRI, his gross motor skills have declined even more. His fine motor skills are also declining and he is again palming food instead of using a pincer grasp. I really don't want to wait two weeks. The sound of him hitting the floor after a quick few running steps that he didn't mean to take and knocking the breath out of himself is just too much to take. It is hard for me to put him down anywhere where he could fall. He has bitten through his tongue twice after falling on his chin or face. He is hard to hold because he is an active 21 month old who wants to explore. I wear him as much as possible.

I called the neurosurgeon's office and talked to the receptionist there. She was non-plussed by anything I said. I have researched the doctor that we are supposed to see, and although I "think" that he is our man, and the right person to go to.. I am simply guessing. Googling and trying to grasp at anything I can find.

I have called Dr. Michaels office a few more times in the last two days. I keep getting sent to voicemail. We really don't know if we should be treating Manny any differently or what we should be looking for. I am getting extremely anxious about not talking to anyone, and although I am "Doing OK" otherwise.... this level of anxiety threatens to send me over the edge.

I have written this while on hold with Dr. Michaels office.... for 25 minutes.

MRI... and results

The morning went fairly smoothly. Save for an hour and a half of screaming by Manny because we waited for 2 hrs after our appointment time for him to go back (which was approximately 4 hours past his breakfast time), everything seemed to go well. He woke up fine and had a grand old time having his ultrasound laughing and giggling at the technician.

I knew when I drove him to the hospital this morning that we'd be cutting off all that hair this summer. The call came at 3:14 PM today from Dr. Michaels office. I knew that that was too soon to be nothing. The nurse said that they had found a small tumor. She coughed up the "reassuring" things that Dr. Michaels had told her to say about how with neurofibromatosis, tumors were common and usually benign. We don't even know if he has NF1 and seriously, you can't really soften the blow of the words "brain tumor." We will see the neurosurgeon this week or next... ASAP. We don't know anything else at this point.

I'm going to call my dad at some point when I can talk (please don't call our family members yet... they may not know). I'll probably tell him to tell my family and that I don't feel like talking about it right now to them. If you are a family member or close friend and you are finding this news out through facebook or blogger... please understand.. I got the news an hour ago... I don't know what else to do. I felt everyone's thoughts and prayers today.