New News

This has been a very crazy week. Tuesday, I headed out the the cancer center in Winston-Salem for another MRI on my calf for my fibromatosis. This is the 6th MRI I have had since last July. My last once showed positive findings for a possible recurrance and with the luck we have been having lately, I assumed the worst. I did, however, get a good report. My tumor has not come backand I don't have to have another MRI until a year from now!! As I was driving home, thrilled with my good news, a rock hit my windshield and cracked it pretty severely. I couldn't do anything but laugh at that. It was just ridiculous.

Luke had his EEG on Wednesday and the test went great. We put him to bed at 11:30pm and woke him at 4 am to make sure that he was sleep deprived. It was exhausting but he slept through the whole thing, which was exactly what we needed him to do. Today we met with the neurologist. He said that Luke's EEg was normal, which enabled us to rule out a couple things; Tourette's disorder and Infantile spasms. We have not been able to rule out seizures. The next step is that we have to keep a journal of Luke' s behavior. We have to first, see if he is having the episodes in his sleep, which means staying up and watching him sleep. Brian and I will take turns staying up for a couple nights to see if it happens. Secondly, we have to see if there is some activity that triggers the episodes, such as being excited, tired, playing or reading. The last test we can do at home is that, during an episode, we have to try to distract him out of it by touching him or talking to him. If he doesn't have them in his sleep, if they are triggered by a stimulus and if we can distract him out of it, it is not a seizure that he is having, but just his body's response to something.

Our doctor answered a laundry list of questions and really conforted us during this time. If we do feel like he is having seizures, they would do an extensive monitor of his brain and try to capture these episodes with the EEG. That would involve hooking the monitors to Luke's head for a 3 day period. We REALLY don't want to do this test (imagine a one year old with wires hooked up for 3 days, Luke won't even wear hats!) so it is a last resort for us at this point. The doctor is going to review the videos of the episodes with several other doctors and give us his opinion based on that. So it's still a little bit of a waiting game at this point but we are able to relax knowing that his brain is working perfectly!

Another Luke update

Well we have been waiting for the last 2 weeks to meet with the neurologist concerning Luke's testing that we had done. Our appointment was to be on Wednesday and we are sure ready for some answers. Well, it looks like we have to do the EEG test over again. They hook up electrodes to his head and monitor his brain activity for 20 minutes. They want him to be asleep when they do the test and he woke up during the last one so we have to do it over. SO we have to put him to bed around midnight and wake him up at 5 am. Then we have to keep him awake until we get to the doctor, which is not easy to do in the car, and then put him to sleep once we get there. PLease, Please, please, pray like you've never prayed before that he stays asleep this time. If all goes well, we will meet with the neurologist on Thursday and, hopefully, get some answers. It is crucial though that he sleep during the test. Thank you for your thoughts and concerns for us during this crazy time. I think that for me, personally, I can handle everything that is going on as long as I know that Luke is okay!!

Why?

Preface- This is going to be a bad, selfish post, jammed full of negative energy and bitter sentiment. I will preface by saying that I know that there are people all over the world with much, much worse problems then ours, but currently I don't think I know any of them and I feel like complaining.

Once again the Garvin's have been hit with bad news. Brian had a teaching job lined up for the school year next year. We got the call yesterday and thanks to budget cuts, they have revoked his contract. This coming now that the education job fair is over and most teaching positions in the county have been filled. So we are basically back to where we were in January, except now we have a sick child. Oh and my tumor in my leg may be back. Have to have another MRI on Tuesday because the last one showed positive findings.
I just don't get it. I don't know why bad things just keep happening to us. I wake up every day and wonder, "what now?". Of course, the last time I said that, Luke started having his tics and seizures, so I'm scared to ask. That job was the one and ONLY bright spot in an otherwise dismal year. I have been as strong as I know how to be, trusting that God would supply for us and care for us, but I am out of strength. My heart is broken for my husband, who has sent out 750+ resumes in the last 6 months. He has been trying so hard to find work and to take care of us. I just don't understand why all the doors keep closing. Go ahead and say it, "the darkest hour is just before the dawn", "every cloud has a silver lining", "God will make a way". All I hear at this point is "blah, blah, blah". I am tired, exhausted, miserable, sick of feeling like God has left us alone in the dessert to be eaten alive by vultures. I have nothing left to offer in the way of support for Brian. I want to get under the covers and just cry my eyes out until something changes. Did we make a mistake leaving Florida? Should we not have come to Charlotte? What are we doing wrong? I have heard so much encouragement and people telling us that they are praying and I am starting to wonder if God hears the name "Garvin" and just stops listening. (I know that God hears all prayers but I am just pissed off right now). Yes my faith is wavering. My hope is gone. I can't ask God to help us anymore because I don't even know what to pray. I am just...done. That's the only word I can think of. At some point I just want us to be able to enjoy our lives together with our son. I feel like we haven't had a chance to really do that since he has been born, not to mention the stress on our relationship. We make the best of it and luckily, we can communicate about how we are feeling but we work so hard at everything else right now that it's a little difficult to work our marriage. We need a date night or something, but honestly don't want to spend the money to do it because, once again, we don't know when we will have a pay check.
I am angry and frustrated and sad. My heart is broken and I am scared. I am tired most of all, emotionally exhausted. I just don't know what to do.

Just for the moms

I think that today is the best day on the calendar. I think that mothers should be celebrated as often as possible, especially now that I am one! Mothers do way more than kiss boo-boos, pick out clothes for the day, change diapers. We are critics of TV and radio, selecting only the most appropriate things for our children to watch and listen to. We are storytellers, reading endless books with great enthusiasm. We are chefs and nutritionists, making sure that our children are getting a balanced meal as often as they are willing to NOT throw the peas onto the floor or eat the grass or dirt off of it (especially at Luke's age). We are imagineers, convincing our children that the cardboard box they are sitting in is really a cabin in the Alaskan wilderness and a bear (our dog Jake really) is coming to get them. We are heart-breakers, our own and our children's. Nothing is more difficult than having to say no, or standing my ground when Luke wants me to hold him while I am trying to cook dinner or type this email to all of my mommy friends).We are meteorologists, being certain ever day we know what the weather will do so we know how to dress our little ones. We are magicians, magically making the remote control, cell phone, laptop, etc disappear so that our babies can't break them. We are fitness instructors, leading our children through a routine of heart-pumping play and walking exercises. We are spotters, making sure that every bad fall is cushioned if we can, holding up babies by their hands as they learn to walk. We are mourners, expressing our deepest emotions for the cuts and scrapes and barely being able to hold it together for anything more serious than that (trust me, I know!!). We are coaches, teachers, pharmacists, nurses, chauffeurs, housekeepers, singers and songwriters (I make up the craziest songs about drool and poo! I should win a Grammy), peacekeepers and war-starters. I could go on and on. Don't forget that we are also wives and sisters, daughters and aunts. We as women, not just mothers, take on more roles that we can even keep up with.

We are harder on ourselves than anyone could be on us. We try hard, and then we try harder. We become angry when we forget to pack an extra outfit in the diaper bag, or our freakishly strong child tips him/herself over in their high chair (right, Amanda?). We wish that we had the time or the energy to be the sex symbol that our husbands want us to be after a day that starts at the crack of dawn and ends when the Tylenol PM kicks in. We are our worst critics, our own judge and jury. What we should be doing is celebrating our victories and letting it slide every now and then when we don't see our child bump his head, eat a bug, or stick his hands in the toilet then wipe mommy's face with a mysterious wet hand.

I love being a mother, and I love being Luke's mother. And I am good at what I do, most of the time. Sure I have meltdowns, I hand him to his daddy and proclaim my freedom and that I am officially done. I forget to change a diaper every now and then, until it's literally dragging the floor in between his legs (if it doesn't stink, I don't think about it sometimes). But I strive daily to be the best mother I can be. I pray for wisdom, strength, and an eating disorder so I can finally lose these last 10 (or 20) baby pounds. I pray for anti-gravity to take over my prodigal breasts and that they will return home.

Anyways, I say all of this to tell all of you that I love you and your "motherness". It's beautiful. And even if your spouse and children don't do it, celebrate yourself. Do it for me. Enjoy what it is that you bring to the world. You are truly, truly amazing!! I know, because I am too!!

quick update

We went to the radiologist this morning to have an EEG. They hooked up wires to his head and chest to monitor his brain activity. They wanted him to be asleep during the procedure so I woke him at 4am. He still decided that napping was not what he wanted to do. He tried to pull all the wires off. I held him for the duration of the testing, but they are now telling us that we may have to do it again because he wouldn't sleep. I know they weren't hurting him, but just watching him there with all those wires attached to his head, broke my heart!
The things that now has me nice and frustrated is that we can't meet with the neurologist until the 21st. So that means two more weeks of waiting to find out what is going on. I hate waiting. I want someone to tell me NOW what is going on. So I guess I will have another update in a couple weeks and I will also let you know if we have to have the test over. Thank you all again for your prayers and concerns.

Just what I needed

I woke up this morning feeling very overwhelmed and it didn't get easier! We had a doctor's appointment scheduled for Friday morning at 9 am with a neurologist. At around 11:30 am today another neurologist's office called us to set up an appointment. We were quite confused about what was going on. Turns out, the first doctor wouldn't take our insurance plan, so our pediatrician had contacted another doctor to set us up another appointment. I started to get really frustrated thinking that we weren't going to able to get Luke in to see a doctor tomorrow. As you can imagine, I want this done as soon as possible and will pull out all the stops to make sure that it does. I am not opposed to hurting somebody's feelings at this point!! Anyways, we were able to get an appointment for tomorrow at 10:30 am with a new doctor that takes our insurance. That's the good news. The bad news is that instead of having to wake him up two hours earlier than normal, we now have to wake him up at 4 AM!!!! I must have asked Brian a dozen times if he was sure that was what they said. We cannot let him take a nap before we go to the doctor and we can only feed him once before we go. It's going to be a challenge because Luke decides when he wants to sleep, he takes naps when he is ready. I lay him down when he lets me know that it's time and he goes to sleep. When he doesn't get a nap, it's a bad deal! So bad!! Not to mention what mommy is like at 4 am! All of this added to my feeling that I am overwhelmed.
Around 2 pm today I sat down on the floor with Luke. He had eaten his lunch and I had eaten mine. I had loaded the dishwasher, picked up the house a little bit because we have company coming for the weekend, and finally got ready for some play time with Luke. I didn't feel like it honestly. I wanted to let him play alone whole I sat on the couch and watched reruns of Top Chef. I sat down there thinking that there were a thousand things that I needed to be doing: Laundry, vacuuming, moping. The last thing that I wanted to do was sit and read a book or play with Thomas the Train. I did it anyway because that's what mom's do, right?? The second I sat down, Luke crawled up into my lap, wrapped both of his sweet little arms around my neck and gave a big, wet kiss. It was the most perfect moment I think I have ever had. It was almost as if he knew all of what I was feeling and let me know that it's going to be okay. He sat in my lap for just a few more minutes, which he never does anymore because he is too independent for that, and then he was off. I sat and cried. What else could I do?
I sat there with him until about 20 minutes ago until I put him down for a nap, and I loved every minute of it.

Luke

I know that I have talked to some of you or texted about what is going on with Luke, but I've decided to put all the info on here. It's a little bit easier than trying to call, email or text everyone.
On April 16th, I started noticing little "tics" with Luke. He was clenching his jaw and his head was jerking backward. It was usually just for a split second and usually when he got very excited. At first I thought it was just a silly face that he was making, since he is doing so many funny things now. I mentioned it to Brian, but he didn't notice anything. I kept a close eye on Luke, trying to determine if I was just being paranoid, or if something was really wrong. One evening, I sat down to read to him, his favorite thing in the world. As I was reading, Brian was watching. The head jerks and clenching were very apparent and seemed to both of us to be involuntary. Brian got the video camera so that he could have something to show the pediatrician. SOme of the tics were so sever that if he was standing up, it would knock him over. We stopped using a steroid medication that he had for his eczema and that seemed to really help. A few days passed after that with no tics at all. We thought that he was better and didn't call the doctor. Every now and then, I would notice a small one when he got very excited, and sometimes just without explanation, but they did seem to be getting better.
This past Sunday, we were all sitting in the kitchen. Luke was playing on the floor and he was laughing at Brian because Brian sneezed (sneezing is VERY funny). His laughing all of a sudden, turned. His chin dipped into his chin, his arms and legs stiffened and began to shake, his laughing turned into an almost choking sound. I don't know exactly what happened but it looked very much like a seizure. We called the doctor right away and she told us to go the pediatric ER. They did a catscan and didn't find any abnormalities, and his blood work was normal. He had another episode in front of the doctor, smaller than the one at home. They sent us home without answers and told us to make an appointment with a neurologist.
We have an appointment set up for Friday. On Thursday, we have to put Luke to bed late and wake him 2 hours earlier than he normally gets up on Friday. They will hook him up to a machine that will monito his brain activity. They want to simulate a stressful situation and try to induce an episode. The doctor did say that his development is normal, he has meet all of his milestones for his age, which is a very good thing. He has also never lost consciesness during an episode, which is also a very good thing.
As a parent, I think that the waiting game is the worst part. I want someone to tell me right now what is wrong and what I can do to fix it. I want to know that my baby is okay and will always be okay. We have spent the last few days watching Luke's every move, never letting him out of our sight. We have videotaped as much as we could so that we can show the doctor exactly what we are seeing. Most importantly, we have prayed. That's all I know to do for him. Even now, as my eyes are filling with tears, I feel helpless, but never hopeless. I know that Luke is my gift from God and I can't imagine for one second that something is seriously wrong with him. Brian and I ask that as many of you that will, please pray with us that everything will be okay.
I will update all of the information as it comes in here on my blog, so please feel free to check it periodically and leave comments. We appreciate all of our friends and family that have expressed their concern during this time, as well as all the other crazy times that we have experienced in the last year. You are all wonderful and we are lucky to have you!!