Here We Go Again (AKA More Neuro News)

Well, it has been a while since I have posted anything on this topic. (I will definitely be finishing up the Christmas posts soon, surely before the end of this month and definitely before Christmas rolls around again.) I was hoping that maybe, just maybe, I wouldn't have any thing to really post on this topic anymore, but no, sadly, that is not the case.

When I briefly wrote about my neuro/migraine issues before (you can read that post here) I was pretty optimistic that what we had set out to try (and by 'we', I mean the highly educated doctor) to prevent my migraines would work. Well, by the end of October, I had run into some issues with insurance and trying to get a prescription for when I did get a migraine, which actually were still happening quite a lot, more than I thought might happen given the preventative medicine I was taking.  I finally got that sorted out and it was decided at that point to up the dosage a bit on my preventative medication and try that for a while.  I had a follow-up appointment scheduled for Feb 15 to see how things were going.  Just to let you know how it went, I started out taking 25mg of topomax, the preventative meds and then on Nov 1 I upped that dosage to 50mg each night.  I have also been keeping a headache journal so the doctor knows just how often I am getting the migraines,when they occur, how quickly I can get rid of them, etc. 

Well, last Sunday, actually a week and a half ago, so two Sundays ago, I woke up with a new kind of headache...one that was sharp and painful in the lower left back part of my head.  Um, what?  Never have had such a headache.  Michael, who loves Google and is sure that eventually Google will phase out doctors altogether (just kidding..I think...I hope) read some things so I tried to treat the pain in a few different ways over the course of the week.  Yeah, you got that right, it didn't go away at all for over a week.  During said week, I had three migraines to top it all off.  And my migraine medication got rid of the migraine, but did squat for back-of-the-head pain.  Finally, this past Monday was the worst.  I woke up early with yet another migraine.  Michael had the day off so we had planned to head up to the outlets.  I took my Amerge (my migraine medication and went back to sleep (with both the front and back of my head throbbing).  After a couple of hours I woke up.  My migraine was gone but the back headache was awful.  And oh yeah, I was nauseous....make that throwing up.  What in the world?  I have surely thrown up from migraine pain before, but not after it was gone!  It was at this point that I sort of decided that my follow up appointment was maybe going to have to follow up a little sooner than previously scheduled and Michael agreed with me (and both of my parents agreed too that I should demand that they see me as soon as humanly possible).  Of course it was MLK Monday and when I called on Tuesday the lady that I normally speak to apparently no longer works on Tuesday or Thursdays.  Ugh.  I set my alarm to get up and call first thing Wednesday and after getting put on hold I said that I did have an appointment scheduled and wanted to move it up-Please Hold.  Ugh!  When she got back on the line she said the doctor didn't have anything available until next week.  Um, ok, so I said I need to see him as SOON as I can because my head has been throbbing in the back for a week and a half.  Oh, she says, he has an opening today at three.  Sigh.  Yes, I'll take that.  Apparently you just have to say the magic words of mysterious brain pain and you are in. 

So at my appointment with Dr. Not McDreamy I let him know that I have a massive headache in the back of my head, that I have had 18, yes 18 migraines since we last met (which was mid Oct, just in case he didn't see it in his notes right there) and that I guess that the migraine medication was working somewhat ok for the migraines, but sometimes I have to take two and it is NOT making weird back-of-the-head headache go away.  He, with not a hint of a smile, says that he guesses we are not doing a very good job of controlling my migraines now, are we?  While I think this could be a pass at a joke, he does not have a sense of humor really at all (Michael has reminded me over and over that I do not want a comical brain doctor) so he is probably just stating a fact.  So even though it's funny, he is right, we sure are not.  He checks my reflexes, looks in my eyes, mouth, presses on my head (ouch, I guess he forgot it hurt) and then asks if I've ever had an MRI or a CT.  No.  I told him that the last time and I'm pretty sure if I had he'd have that info, wouldn't he?  I guess that is beside the point.  He decides that I need to get an MRI.  He also decides that my back of the head pain is also migraine related, until we know otherwise.  He tells me to start taking 75mg of topomax a day, one pill in the morning and two at night.  And he also writes me a prescription for Fioricet with Codeine in it to take for the back of the head pain.  And gives me some samples of some powder stuff that could also help with that pain (but cannot be taken with the Fioricet prescription).  And I still have to go back for my original Feb appt so he can see how I am doing and presumably talk to me about whatever he sees in my MRI. 

So let's talk about the MRI, shall we?  As I am leaving, the nice nurse or whoever she was hands me a paper and says that Northside will call to schedule my MRI in the next day or so and the actual appt will probably occur in the next week probably.  Ok.  No big deal.  Except I get home and I am looking at the paper and on the back in some rather small writing it says something about if you are claustrophobic, blah, blah, blah.  Um, what?  I turn the paper back over to see exactly what she has ordered for me to have...a Closed MRI.  Now Google is my best friend.  Except not at all.  Sure I knew sort of what an MRI was and that since it was going to be on my head/brain it would probably be a little closed in....but I did NOT like what I saw in the pictures that Google so generously shared with me.  Oh and I found a nice little site dedicated to all those with even the slightest claustrophobic tendencies.....talk about freaking out!!! How in the world am I going to do this???  In one picture the guy had a cage looking thing over his head, a lot of people were strapped down (just kill me now), most of the MRI machines look like rounded off coffins and supposedly it is going to take close to an hour and you cannot move AT ALL.  The hospital hasn't called yet to schedule me and I have a million questions, I already feel terrible for whoever has to call me to set up my time.  The 'helpful' Google sites I found also had some tips for trying to make it bearable...and my favorite so far was being sedated throughout the process.  I also liked, in addition to sedation, having a rag/towel to cover your eyes, and have a CD of music to play to take your mind off of it (cause apparently the machine makes loud noises as it takes pictures too).  They have something called an Open MRI machine, but I read that sometimes the pictures aren't as good as in a Closed and there is no way in the world that if I do this once that I will ever do it again, so we will have to get the best pics we can get on the first (and ONLY) try.  Originally I was planning on just going on my own but now I think my dear husband is going to have to drag me there for this little procedure.  Any and all prayers appreciated, both that I can make it through the MRI without too much anxiety and that nothing too terrible shows up in the results...maybe something that will give a clue to all my migraines maybe though...then at least the MRI won't be totally for nothing...or if it is for nothing I will have to frame it and hang it on my wall or something! Ha! Definite updates to come!!

Christmas Morning, Our House

This year we woke up at our house on Christmas morning. Usually we stay our my parents' house but with the fact that we were traveling back from FL on Christmas Eve and everything we decided that it would be easier to just wake up at our own house, get the Santa stuff done and then go over to their house. We didn't get much sleep because there was 'some' assembly required on a few of Sophia's gifts. Plus we weren't sure how long it would take for her to open and play with the gifts when she saw them and we didn't want to just make her leave them as soon as she got them, so we planned on a very early morning. So we were tired, but excited.

Santa came to our house!!

Overflowing stockings!!

Why are you guys waking me up so early?

Sophia was super excited to see her new kitchen. She immediately had to try out the phone. Apparently this is a very important piece to any kitchen set. :-)

Such a happy girl on Christmas morning!

Mommy, I am in the middle of an important call!! I think she held on to the phone throughout most of her present opening.

She was SO excited when she saw both Minnie Mouse and Ariel peeking out of her stocking. I hope Michael got a good video of it (since we still haven't watched the footage) cause it was adorable.

Even though it took a loooong time for her to open everything, she had a blast and after a couple of hours we realized she must've been pretty hungry, haha. But she really was most interested in playing with all her new toys. I was glad that we were able to bring some of them over to my parents' house (although not too many, as I knew she would get some things there as well) for her to continue playing with.

Michael and I had a great Christmas as well, as far as the gift giving went. We both got each other watches (he got me a Michael Kors watch, which I have wanted for practically ever!) and he got me a Coach purse (I may have picked it out, haha) and I got him a personalized bag for his golf shoes (which I knew that my parents were getting him new golf shoes) and I gave him money for him to go and get his new iphone. We also got each other some other great things as well, it really was a great Christmas for the Santoro household all around! I am so thankful for my husband, who is wonderful, and for my precious daughter, who makes me so happy. :-)

An Amazing Baby, An Amazing Family

Christmas Eve was a very long day. We were in the car for half of it, driving home from Florida. Then we were rushing to unpack and repack (to spend a few days at my parents' house) and I was trying to bake some things, all before church that evening. And I wanted to make sure once we were dressed for church we had time to pose with a 'Merry Christmas, Hallie' sign to post on the Hope for Hallie page on Facebook. After church we had some Santa type things to do before we could go to bed for the night. Somewhere in that afternoon, I happened to check Facebook on my phone, and then I couldn't seem to remember what I was doing at all.

Let me start way back at the beginning.

Maybe in March or April of 2009, I was pregnant with Sophia at that time. My sister was trying to talk my into starting this blog. At the time, she was really the only person that I knew that had a blog, the only one I really read. She said to me, do you remember Chris Green from high school? Sure, I did...sort of....he was on the soccer team that I was a manager for, he was a few years younger than me, had a twin named Brian. Definitely a couple of super nice guys. Well, she says to me, Chris ended up marrying Katie McIver, do you remember her? No, not personally, but I did know who she was. Probably everyone at our high school did, if I had to guess. As I said, I didn't know her personally, never had one conversation with her, not even in passing, but even back then she seemed so...nice. I knew she was a cheerleader (not always a word that went along with nice, in my experience, haha) and seemed friendly. That was about it. Sara tells me that I just have to read her blog. That is was great, they just had their second baby, had two really adorable kids, she writes so well, and so on. Ok, I was sold. And so I spent the entire day at work (we must've been really slow or my boss wasn't there or something) reading the entire blog from start to finish. I think I even had to download something onto the computer so I could watch any videos. I was hooked. What a truly amazing family, I thought that even then. You could see how much love was there, how great of parents they were, just what an adorable family they were through the writing and the pictures. I may not have known them well in high school but I felt like I did after becoming a faithful blog reader that day. Oh, and I decided that I would try my hand at blogging too.

Fast forward a little bit to the beginning of this summer or so. Katie is pregnant with her third baby. Another sweet girl. But this time, through the blog, I saw that the new baby had a very rare genetic disorder (called Trisomy 13....you can read a little more about that here). Basically, if this baby girl made it all the way to delivery (and that seemed like I pretty big if), she was not going to live long. Such devastating news. I literally felt so crushed for the Green family. A pregnancy is supposed to be such a time of expectancy and excitement...now they will be filled with worry and grief and wonder if they will even meet this little baby. When we were pregnant with Sophia, we signed papers to not do any of the genetic testing. I know that I, just as Katie couldn't, would never be able to abort a child that had any type of abnormality. But usually those tests are specifically for Downs Syndrome and my feeling is that I also wouldn't want to spend the entire pregnancy worrying about how we would care for it and all the things that would come along with a special needs child. I would love it just the same anyway. But this was not the same thing as that possible scenario at all. Not only did the Green's not know if their baby would make it to the due date, they didn't know if she would live more than a minute, more than an hour, more than a day. It wasn't a case of what would they do when she got there, more like, would she get there at all? They decided to let God handle everything. It must've been the hardest months of their lives.

Fast forward a little more. We had taken my brother to Dave and Busters for his birthday, just me and Michael. It was Sunday, Dec 18th. We had such a fun day and I was pretty tired when we got home. But I saw, on Facebook through a site that was made for the sweet Green baby who had made it all the way to term (Hope for Hallie), that Katie and Chris were headed in to the hospital because Katie was going to be induced in the morning. I thought back to when we did the exact same thing with Sophia. Checked in the night before. Induced the next morning. C-section the next evening and our girl was here. But I knew that the events for the Green family would probably not play out in quite the same way, even though they were in the exact same hospital and everything. I didn't sleep well, I prayed and prayed that everything would go ok and the little girl would make it into the world ok. That her parents would be able to hold her and love her and even that maybe while she was tucked all safely in her mother's stomach the doctor's had maybe somehow made a mistake with her diagnosis?
That next day I probably checked Facebook a hundred times in a hour. Hallie Lynn Green had made it in to the world! She was breathing and when I read that post I breathed a sigh of relief. I guess I let myself think that meant things were good. She was here, that was clearly a miracle. Actually, all week long I checked Facebook a thousand times a day, just waiting for an update, hoping for a picture of the precious baby girl. And I prayed and prayed for the Greens and for Hallie. I knew that so many others were doing the same. Surely God would hear all of us, see how many random strangers from all over were praying for this tiny miracle and heal her, right? Sophia and I made a 'Hope for Hallie' sign...I couldn't figure out how to keep her from crumpling it up so I would say clap for Hallie! and then snap the shot. When Hallie went home from the hospital a few days later (we were actually at Sea World when I saw that post) I said to my husband they are letting her go home...that has to be a good thing, right? I know that sometimes I can be a bit of a pessimist in situations and I thought that I would only concentrate and pray on the positive and be thankful for the positive in this situation, also constantly thanking God for all the positive in my own life at the same time. I thought the Green family would spend Christmas, and maybe even New Years, with their precious new baby before having to tell her good-bye and handing her over to God. I figured all the prayers coming from everywhere would at least "buy her that time". Although I know that really isn't how things work.

Back to Christmas Eve. Facebook. Hallie had passed away, in her mothers' arms, with all her family there with her. I could not stop crying. I could not remember what I was cooking or packing. I was so mad at myself that we hadn't done the Merry Christmas post. I texted my sister to make sure she knew (she had not seen yet) because I could not call her to say the words. Church that night was so hard...I cried through Silent Night because the words seemed so sad. I couldn't imagine how difficult this night, this holiday, this month, this year, was going to be for the Green's without their little Hallie.

Last weekend, a memorial service was held for Hallie Lynn Green. I knew that I wanted to go and I knew that I would have to go alone (as I was planning to leave Sophia at home with Michael). As soon as I got there, saw the screens with the pictures and heard the piano music, my throat pretty much closed right up. I tried to sign the guest book without crying (the guest books were awesome....had all the pictures from the Hope for Hallie site...I should've looked for the picture of Sophia and signed near it...but I didn't want to hold up the line) and then took a seat, alone and near the back on the side, in the large auditorium. I admit, I had to look at my phone a couple times, possibly at my Bejeweled app, to keep myself from crying before it even got started. A very sweet stranger, a nice girl who probably didn't want to be alone either, sat down by me just before the service started. At the start, more pictures of precious Hallie with her family set to beautiful music...but what I think made me really cry was seeing the video of her moving and breathing...a true miracle and Katie and Chris were sharing her with all of us. Their sweet second daughter, Farrah, was in a video singing Happy Birthday to Hallie...I felt like my heart just broke...oh, that whole family just loved that little baby so much. Also, Farrah is maybe about 9 months or so older than Sophia....I just wanted to hold my baby right then and never let her go. There was a beautiful, truly beautiful song written just for Hallie that was sung and even Chris and Katie spoke. This is where I was truly in awe. The strength and love and faith that they have...if I even have a tiny fraction of that in a time of such pain and hurt and sadness...well, I'd be doing ok. They were really inspiring, just made me want to be a better parent, a better person....if they can stand up there and speak to a large crowd (a daunting task under any circumstance for me) after they have just lost a baby (probably the single most difficult thing a parent can go through) then I can be more understanding, more compassionate, more loving, more patient on a day to day basis. Right? I guess those aren't things that just change overnight but at least I know that I can work on that and have good models of understanding and love and faith and patience and compassion to think of when I am feeling challenged.

Now that a little time has passed, I think about how Hallie has affected my life. I think about how my praying changed upon first hearing her diagnosis up until now. I really wanted that diagnosis to be wrong. I didn't want to think about how the Green's might have to lose a daughter, maybe even before she was born. And then she was born and I was very thankful for that. I started to pray that she would just make it home, and she did and I was very thankful for that. And then I would pray that she would just make it past Christmas time, would just make it past New Years, that wasn't all that long. But really all along, God knew that Christmas Eve was her time. I should've spent more time praying differently. I was praying for a miracle but there were so many miracles happening the entire time....Hallie made it full term. Hallie and Katie both made it through the delivery well. Hallie was able to go home from the hospital. Hallie changed the lives of those who knew her and of so many who didn't know her. All miracles. Such an amazing little baby. But, like I knew from the second I started to read their blog, the little Green family is an amazing family. Hallie couldn't have been born to another family. And I am happy to know their story, I thank them for sharing it with me.

To read the entire story of the Green's go to:
http://thelittlegreenfamily.blogspot.com/

Yum!

Ok, this isn't really catching up on much but thought I would post on it anyway. Last week Sophia was napping and I was kind of bored...I was supposed to be tackling the mountain of laundry but that didn't sound fun...and we happened to have some overripe bananas in our kitchen. I enjoy baking so much more than cooking, just ask anyone. Namely, my husband. He will surely blame any weight gain since our marriage on the fact that I will bake cookies or a cake or brownies or some type of bread product...and then not touch more than a bite of it, leaving him to eat most of it. I guess it is more the satisfaction of making the baked goods than eating them. You'd think I would be much skinnier. Except the few things that I do like to cook, dinner wise....pasta, pasta, and more pasta. Just kidding. Sort of. I like making homemade pasta sauce and pancakes and chili....surely there are other things, but to be honest I could live off pasta and forget the rest. My husband has to have meat. Often. I try to touch raw meat as little as possible...thankfully my husband also likes to cook and so we do not live on pasta alone.
Back to the actual topic of my blog post (no, it is not the fact that I am not Betty Crocker). Anyway. Bananas. I really like banana bread and a lot of the time I will just use an easy mix to make it (it does say there are bananas in the mix...not that I have ever come across one) but we didn't have one of those. So I googled banana bread recipes and the first one that came up seemed to be perfect. As in, we had all the ingredients, it didn't seem messy, and the words 'no mixer' were included. This worked out, cause like I said, Sophia was napping and her bedroom is pretty close to the kitchen. It was so simple (if it is easy and doesn't have a million ingredients, I will try it). And it was from scratch! Mash up bananas. Add some other stuff. Bake for an hour. It came out moist and tasted great (I actually have had several pieces of it, Michael has not had to eat the entire loaf) and made the house smell all nice and banana-y. So move over Betty Crocker. Sure, we can't eat banana bread for dinner but who knows what kind of cooking adventures I will get into this year!! Should I try a new dish every week and then blog about it? Well, that is probably getting waaayy ahead of myself. But the banana bread was good, that is for sure!!
PS- If you want the awesome banana bread recipe it was at www.simplyrecipes.com/recipes/banana_bread :-)

Sophia loves Molly!

The day before Christmas Eve we spent the whole day with Michael's family. At their house they have a couple dogs and a cat....Sophia really likes dogs...but always from a distance. They get near her or even bark and she freaks. Last time we were there (right after Thanksgiving) she did NOT want Molly to bark at all and did not want Bunker to jump on her or be near her for that matter. This time, little miss brave decided that she wanted to be friends with the dogs, especially Molly. She still wasn't fond of Molly's loud bark...she would yell, Moll, Moll every time Molly would bark at cars or people passing by the house...it was actually cute. And if she was caught off guard by Molly running by she would run straight to our legs and hold on for dear life. But other than that, Molly was probably wishing that she would go back to scared clingy baby. And was probably super happy when we finally left. Poor Molly. She was definitely a good sport about it though. :-)

Sophia giving Molly a pet for the first time.

So sweet!

Now I'm going to hug her and bother her all day long!

Hey, Molly, here is your Christmas present, even though it's not Christmas yet!

Sea World, 3 Days Before Christmas

This year we went to Florida to visit Michael's family before Christmas. Michael's cousin TJ was on leave from the Navy for a short time and wouldn't be there long after (when we usually go down) and we really wanted to see him and for him to meet Sophia (last time we saw him I was pregnant) so we squeezed in our trip a few days before Christmas to make sure we had time to spend with him. We planned to spend the day at Sea World, just us and TJ and Michael's youngest brother Brian (the rest of the fam had to work). Plus when we were there in November we didn't get to take Sophia to see the Sesame Street show they have special during the Christmas season and we wanted to do that. It really wasn't too crowded at the park, probably because it was three days before Christmas. The reason we had not seen the Sesame show the last time was because we hadn't gotten in line soon enough...that sucker filled up fast. So this time, Brian and TJ (they didn't want to see Elmo, imagine that!) went to ride some rides and Michael and I got in line really early for the show with Sophia. You can imagine that a one year old just loves to stand around and wait for something that she isn't really sure what she is waiting on. Oh, did I mention it was about 80 degrees on this day? And we were packed like sardines waiting with apparently whoever was at the park with kids under 10. They actually let us into this giant auditorium thing a half an hour before the show started to sit and wait some more...at least there was some air. Sophia was as good as can be expected. She kept saying Elmo, Elmo over and over. Like where in the world is Elmo, is he even worth waiting this long for??!! She did love the show once it finally started though. She kept yelling to Elmo, although she really didn't want the characters to come near her (evidenced by the fact that when Telly...we had to look him up to be sure that was who it was...give us a break, we know all the main ones....anyway, Telly came running by and waved hello right in her face and she freaked out and clung to us, hahaha). And she was not at all happy when it was over. Personally I wasn't really either, after all that waiting it probably could've been a little longer! :-)
We really had a fun day and enjoyed spending the time together. Sophia and I didn't ride any rides so her and I got to look around in a lot of the shops and at some of the exhibits the boys didn't get to see, just some mommy/daughter time. We got back later than we thought we would, but saw and did everything that everyone wanted to do. All in all it was a nice way to spend the day!


Our little family!

The Boys!

Daddy and his girl!

The star of the show...Sophia's fave!

Blog Resolutions

Well, here it is, the start of the second week of the new year. I can't believe that another year is already here. I guess it felt like time flew by, but having a child really does make it feel like it goes by that much faster.
And pretty much almost an entire month has gone by since I have last posted on here. Ugh. And it has been busy too, not just a quiet month with nothing to say. So I clearly have a lot of catching up to do. A little holiday known as Christmas, Sophia's second, happened in those weeks that have passed by in my blog silence. That in itself will need to be several posts as we traveled to Florida to visit with Michael's side of the family and spent time with my side of the family as well as doing some things with just the three of us.
And there is another event that I really do want to post about, but haven't yet, because I still just don't know how to quite put it all in words. Even after reading so many others putting it down in words so perfectly. But I will figure out how to get the words out.
Which brings me to the very point of this blog....my resolution for this very blog for the new year. I will really try so much harder to keep the blog more updated and current. Or at least visit the blog more often. Maybe post at least once or twice a week? I know that blogs can be set up in advance....so even if I have to stay up really late scheduling a weeks worth then maybe that is just what I will have to do to keep this 'ol thing going. Now, as far as my blog issues with pictures go. Ugh. This will take some major patience on my part. An entirely different resolution altogether. But I will at least make the attempt to not throw the computer out the window at the first sign of blogger rebelling against my wishes to post a ton of pictures. I will try hard to grit my teeth and solve the problem the best way I can and hopefully at least post a few good pics to please the masses (ha) who want images to go along with text.
I can do this! Plus, my favorite blogs to read are the ones that post often.....great role models for the blogging world! And I at least have so many topics that I want to blog about....catching up our holiday activities, what I hope the new year brings (maybe including some actual resolutions), and most importantly I want to blog about a precious baby girl who was born and lived only 5 short days....but changed the way that I have been looking at almost everything around me.
I know this isn't the most difficult or life changing resolution to have....keep up with my blog....but for now, I think I can easily manage it and it won't be one of those things that gets dumped by the wayside after a month (example of resolutions past.....go to the gym every day. Ha. Not sure that one lasted a whole week). I'm not actually doing this to gain a ton of readers or anything.....but for the few that actually do follow....guess you'll actually find something new to read when you check this thing!! Happy New Year!!