Category Archives: Chiari

Living with Chiari: 2 years later

Thinking about what has happened to me and the changes that have happened really makes me wonder how much my life was really effected by my Chiari. As a quick overview here are some things that have happened since my surgery.

  • I got pregnant and was for 9 months
  • Had the baby
  • Lost 58 pounds (or 33 if you don’t count the baby weight)
  • Started exercising regularly, by RUNNING
  • Ran a 5K
  • Started training for a 10K

It is a really big deal that I got pregnant and didn’t have any complication during pregnancy. That was one of the firs things my neurosurgeon asked me about at my year and a half follow up. Although, I did have a slight vision weirdness that landed me at my neurologist’s office and the ophthalmologist’s office near the end of my pregnancy. But we all decided to wait and see if it got better after I had the baby and it did.

Anyway, I did some more MRI’s and they show that they syrinx in my spinal cord has almost completely disappeared, which is excellent news. As a result, I don’t really have the tingling my hands that I was starting to have prior to the surgery, and my spinal fluids are flowing correctly now. 🙂

If you would have told me anytime before I started running that I would actually enjoy it and crave exercise, I would have told you that you were a little bit nuts. I loathed exercising ESPECIALLY running. I always felt like it was a major punishment, and perhaps it really was considering my brain’s situation. I am extremely grateful for my new found enjoyment.

Life is looking really great, and I’m so grateful we were able to do something about my Chiari and for the skilled surgeons who were able to help me.

We’ve been busy…

and I’ve been lazy. I have not been taking pictures of my cute little boy like I should be! He’s growing up so so fast. So, let me tell you about our month up to this point. 🙂 Lest you think we just sit at home and hang out (which do a lot, but we do other things too).

Here are some pictures of my little cutie:



So as a result of my lack of photo taking, I am going to start taking a photo a day. I am going to TRY for the rest of the season, but it is sometimes hard for me to remember. I am planning on putting the photos here for your viewing pleasure after I Photoshop them (unlike the ones above). So, ask me about it if I’ve been slacking.

What we’ve been up to:

On March 2, I had an appointment with the neurologist who discovered my malformation. I hadn’t seen him since November, and a lot happened since then. Thankfully my neurosurgeon’s office kept him up to date about what happened to me. 🙂 So, after talking with him, he was quite pleased with my progression and how the surgery has effect my migraines and headaches.

That is a question I get a lot. Are the headaches gone? Yes! The constant pressure I had in the back of my head is what caused the vast majority of my headaches and migraines. While I get the occasional headache it is like normal people do. I’ve also gotten a couple migraine beginnings since the surgery, but if I catch it early and take medicine, it will not bloom into a terrible, knock ’em out headache. I also don’t the blinding pain when I laugh, sneeze, cough or bend over anymore either! I have a follow up MRI in June to see how the surgery effect the syrinx in my spine.

Okay, we also had dinner and played a game with our good friends Brian and Shanna. We always love getting together with them. I have been able to have a few girls nights and lunches with friends. I don’t even mind bringing Spencer. He’s such a good guy for the most part. He’s great to have around.

He’s actually gotten really good at listening and following instructions. Now that I know he can do it, and often does, it is frustrating when he doesn’t. He’s 2, what are you going to do? Just try not to take it personally (which is sometimes hard too), and work on it. 🙂

Spencer and I have gone and played at many friends houses, been to the zoo a few times and to the science museum. He LOVES the zoo and the park. He frequently asks if we can go see animals (zoo), play with toys (science museum) or the pirate park (he’s favorite park). And we go often. It’s great to have memberships to the Zoo and Science Museum. That way I don’t feel bad about leaving after 2 hours there. Since I know we’ll go back again soon.

Spencer is beginning to give up his naps, which makes for a nasty evening for us. He’s very cranky when he’s over tired (as am I). So, I do try to put him in his bed every day for quiet time. It often turns into naptime, but not always. He loves going to school, and I like having that day to do things that are easier without having a kid around. 🙂 We are very fortunate to have gotten him in to the MDO in the middle of the year.

That’s been our March thus far.

Living with Chiari – Post Surgery Follow Up

On Tuesday afternoon I had my post surgery follow up with Dr. Mapstone. We were expecting him to tell me that healing takes time, and that I need to be patient with my recovery. What we got was something different.

We were told that my incision looks great (which is wonderful to hear since we’ve had some many problems in the last week and a half), and he is quite please with my progress. He also told us that I should start exercising and getting back in shape again, not something we were expecting so soon.

So, I’ve been given the okay to resume life as close to normal as my energy levels allow, and to really start working back to normal. I’m so happy this has come SO very quickly in spite of all that has happened with being sick and getting weird infections.

I was so excited when I heard that news that when I got home I picked up Spencer, and he gave me the BEST hug he’s ever given me. While I was holding him, he would sit back so he could look at me and have me the biggest, cheesiest grin he could. He did that three or four times before he would let me put him down. It made my day. My little guy missed me. 🙂

Living with Chiari – Complications…

Well, everything with my healing was going along quite well (in spite of the fact that I caught a cold), until last Friday night (2/11), well technically it was Saturday. I discovered one of the sites that is pushing the internal stitches out was “leaking” liquid and pussy stuff. Lovely right?

I woke up Adam, and he looked at it. He also suggested I email the nurse we deal with at Dr. Mapstone’s office. We did, and she said in a reply the next morning that we should go to the emergency room at OU (since that is where all my records for this surgery are).

So, we had our friend who is a resident there look at it first. And he agreed with her. We went, and left 3 hours later with a prescription. 😦 On the way home, my neck started hurting. I just thought it was my medicine wearing off. Later that night though, I couldn’t move my neck up and down, left or right. And a spot on my neck started swelling. It swelled to about the size of a little bit bigger than a quarter.

The next morning (Sunday), Adam went to the Instant Care Clinic to get his sinus infection and cough taken care of. Adam was going to take me BACK to the ER, but the cough medicine really did a number on him. So, my Dad drove me back to the ER where a Doctor poked a giant hole in my incision and drained lots of nasty fluid from the swollen spot. (I would show you a picture, but it’s nasty).

My parents took Spencer for Sunday, and Adam and I were sick at home. I had a rough night. My stomach was bothering me, but I’m getting better today. I’m still hurting quite a bit and don’t have the movement back, but I feel much better.

Living with Chiari – Healing Update

So, it has been nearly two weeks since I’ve had my stitches removed. I’m healing quite nicely, and I’m getting energy back. I do have days that are not as good as others, but we’re dealing.

We have been SO blessed to have my G’ma W. come down to help me with Spencer and my healing for 3 weeks. She’s been here for 2 as of today. So, she’s leaving us in 1 week. 😦 She really has been such a blessing to have around.

So interesting thing happened to us today. We’d noticed about a week ago that there was this little white thing sticking out of my incision. At first, Adam thought it was just dry skin, but it wasn’t. Upon closer inspection, he decided it was string. It has gotten longer over the last few days, so we emailed the nurse we work with about it.

We went into the doctor today, and she confirmed to us that it is indeed an internal stitch. Instead of my body just absorbing it (like most people’s do), mine is pushing it out of my body. It’s called “throwing a stitch.” Apparently, I am throwing a couple more too. She said that it isn’t super common, but it is not unheard of. Leave it to me to do the weird thing that doesn’t happen a lot. 😉

I also got the okay to drive as soon as all this nasty snow and ice goes away. But the forecast doesn’t look promising… It’s supposed to dump more on us next week and over the weekend.

Living with Chiari – Before and After Stitches

Well, I haven’t been being as faithful posting, and frankly I best most people quit looking when surgery went fine and I came home. We’ve still had some milestones and some set backs in learning what I can and can’t do.

What I really wanted to share are the before and after photos of my stitch removal. I don’t think I’ll take another picture of the scar until all the scabs from the stitches have come off, but these are still cool to see.


if you want to see them closer, here’s a link to that particular photo

no stitches

No stitches up close

I’ve been doing well. I’ve been out to eat a couple of times, been to the store a couple times on SHORT trips. I’ve pushed myself too hard on Friday and Saturday and as a result have been feeling a little more crumby today. But we are making progress and weening me OFF the heavy pain medicine. 🙂

Living with Chiari – Post Surgery (at home)

1/19 9:30am: Adam took a really cute picture of Spenc and me, it’s below. I had to move this post up since it is the one getting up dated. 🙂 Our first night of more sleep seemed to go well, with the exception of THE. WORST. DREAM. EVER. I won’t go into details, but I woke up had to check on my baby then cry to Adam about how awful it was. 😦

On to happier things though, I took a shower this morning before Adam gave me the Valium that makes me TOTALLY pass out, and my hair looks more like I actually did it than it has in more than a week. 🙂 It won’t last long since I’ll be going to sleep on it again soon, but small victories.

Discovered in the last few days, that the thing that hurts the worse on my body right now is my hair. I’m not even kidding. Since I’ve been sleeping on it a certain way and it just kind of stays that way, whenever I move it to brush it or wash it, it is really painful. Weird, huh? I don’t think there is anything that can be done about that, so I’ll just have to live with it. 🙂
1/18 12:45pm: Adam just took Spencer out for a bike ride. 🙂 It was our first day to have Spencer back with us all day and all night. It felt great to have our whole family here. When I took my morning nap this morning, Spencer did great. Right up until it was time to go. But the best thing was hearing him call “Momma!” “Momma!” and trying to get into my room. It was a great feeling knowing he wanted his momma.

On a medical note, we are getting my stitches removed on FRIDAY afternoon. Yeah! We also decided to change my nighttime pill schedule. I was having lots of CREEPY dreams and so was Adam. We are taking my 3 hour doses and going to make them a 6 hour dose (which is perfectly fine according to our doctor). That way I only have to wake up once at 1am instead of at 10, 1, 4 and 7. So, I’m feeling good now. We’ll see how the rest of the day goes.

1/17 6:10 pm: I guess it is up to me to update the blog now, but I can mostly handle it. It just won’t be as often as Adam did it, but that was when information was more critical. 🙂 Well, it’s the first time I’ve been left alone at home. Spencer and Adam are off on a grocery run. Leaving me here to fend for myself. Lucky me, I am feeling pretty good. Everyday comes with a new little challenge, but it always seems to get better. We have a “routine” that will likely change now that Spencer is home, but maybe not. 🙂 We can predict when my bad times of day will be usually, and know why so they are easier to deal with. All in all, things are looking better.

1/16 12:42. I feel like I just got up for the day (although I’ll probably be taking a nap in a little while too). I am on so many medicines that make me tired. I actually woke up at around 9:30 am (after going to bed at 7:45), to eat and then take more drugs that knock me out completely. So, after being up long enough to eat breakfast and watch a TV show with Adam I was back to bed and didn’t wake up until 12:30ish. This does seem to be an odd pattern I’m in.

I have discovered that if medicines say that have a drowsy side effect, which didn’t used to affect me at all, REALLY do a number on me. I’m one of those people who really shouldn’t operate heavy machinery after taking something like that. Who knew!? The doctor says my brain is learning to see certain parts of the world in a whole new way (since I had the malformation forever) and to expect stuff like this. It will be interesting to see. 🙂

Living with Chiari – Surgery Liveblog

1/15 10:00am: We slept until 9:45am! It was so nice. The night was kind of long, but not too bad. When we first put Jessica in bed, she got way too cold before she could heat up under the blankets, and she started shivering pretty bad. All the shivering made her REALLY sick, so I crawled into bed with her (it was only 9:00pm, so I wasn’t ready to go to bed yet). We snuggled really close trying to heat her up. I felt really bad for her, but she was ok after a while. Also, we found that making her eat a couple pretzels every time she took pills during the night (2 or 3 times) helped curb the nausea some. Anyway, she ate a bowl of mini wheats this morning with a small glass of chocolate milk and is taking a shower by herself before she starts feeling tired/sick/in pain. It really is always one of those three things, but it IS getting better. I feel really blessed to have modern medicine that they can just cut their way in and make room for her brain/fluids to move around and sew it up all in a couple hours and the only immediate side effects are nausea and headaches. Granted, they are very much helped by drugs, which itself is also a miracle.

1/14 7:30pm: I’ve been home since 1:45ish. The first thing I did when getting here was go to sleep. I’d been awake for quite a while before getting to go home, and needed a nap very badly. I got to see my sweet little boy around 4:15. I don’t know how I’m going to keep up with him! He’s got some much energy, but he does make me smile. I’ve seen my family and they brought me some dinner from Louies. It was a HUGE sandwich (really more like 2), and I only ate a quarter of it. So, you could say I ate half a sandwich. 🙂 It’s been a pretty radical diet (and not one that I’d EVER recommend), but I can already see a difference in how my pants fit. 😉

1/14 11:40am: just finished lunch. Didn’t eat quite as much as breakfast, but she was snacking and drinking lots of fluids between meals. We are leaving in 20 minutes! We are now packing up and waiting for her next round of meds at noon. Yay!

1/14 8:40am: Good Morning! It is a good one for us. Jessica got off her IV again last night around 1:30am, and she woke up feeling really well. She ate a TON (well, relatively) of breakfast and only stopped once she felt full, NOT SICK. She has yet to feel sick from it, so the doctors are sending her home today! In her words: “They are springing me from this joint today!” So, let’s just hope to have no more new news!

1/13 6:10pm: check out the video below for your latest live blog courtesy of Jessica!

1/13 6:05pm:

1/13 2:15pm: Well, they didn’t like the increased nausea and dizziness after taking her off the IV, so they’ve put it back on her. They did decide to try giving her solids for lunch. It wasn’t any better or worse than liquids. She could only stomach about a half a roll. Her dizziness is a little better than this morning. Its all kind of frustrating for her because we are not seeing much improvement. At least the headaches and soreness are at acceptable levels. We don’t mind waiting for time to take it’s course with the nausea, but it’s difficult when you don’t know how much time is required.

1/13 10:15am: Sorry about the lateness of this. I had to take Spencer to his first Mother’s Day Out and just barely got here. Lots to update. Jessica had a really good night last night. Except for being woken up every so often to give her medicine, she slept really well. When. She woke up this morning she was feeling her best yet. She ate some broth, juice, and some of the Ensure. She said it was more than she’s ever eaten yet. The doctor came and said he was really pleased with her recovery so far. It was his estimation that she could probably go home tomorrow or Saturday. The only thing she had to accomplish was keeping down solid foods and being able to walk around a bit more. Based on what I see now, I’m thinking Saturday more than Friday. Her incision is still looking really good. They took off her IV this morning. That scares me a little bit because drinking very much at all can make her sick, but I guess they won’t let her get dehydrated.

Anyway, while she felt good, she got up and brushed her hair and put on some chap stick. Previously, she’d only been able to be up long enough to go to the bathroom. She unfortunately started feeling sick again. Let’s just hope it doesn’t last too long. It is funny because we thought the headaches were going to be the biggest hurdle for her while here, but it has really been the nausea.

1/12 9:00pm: Jessica got a good nap from about 5:30 to 7:30. She woke up acting almost like normal. It was really encouraging. She wanted her dinner and ate about half the broth. She basically had very low pain in her head and no nausea. It wasn’t to last forever though. About a half hour after dinner, the nausea set back in. It is pretty bad right now (just asked for the barf bag), but the meds for it are due in about 20 minutes. Hopefully that will help. So, a little more food, a little more delayed nausea. We’ll call it a victory.

1/12 5:35pm: I guess I should update this. She is sleeping a lot less. We watched two whole episodes of Friends and some Everybody Loves Raymond. Her parents came and visited for a while. Nice to see the “real” Jessica come out for a while. She was sitting up and not looking that drowsy for a couple hours. Her lunch came late, and all she was able to get down was a half cup of juice and a half cup of jello and a half a Popsicle before she felt nauseous again. She looked like she was about to lose it, but she managed to keep it down. I guess it’s good to win the small battles and all that. I’m guessing the doctors’ criteria for her leaving the hospital would be to a) not be exhibiting any complications from the surgery (especially spinal fluid leakage) and b) be able to eat and keep down caloric intake. I’m guessing that second thing will probably take another couple days. Here’s hoping we can figure it out quickly. I’m sure it will end up being a really small thing in the long run, but you know how it is dealing with is stuff in the present. 🙂

1/12 2:08pm: here is a shot of her “zipper”:

1/12 1:45pm: still sleeping a lot. She does pretty good with getting up to go to the bathroom by herself and doesn’t seem to slow about it either. Still a lot of pain and dizziness and nausea, but that is very expected. As the doctor told her, you’ve reconfigured the way your nervous system is flowing out of your brain. It needs to relearn a lot of things. Until it does, you’re going to be unbalanced and nauseous. She isn’t really drinking anything yet, but no doubt they will be making her do that soon. Maybe later we will walk up and down the hall some.

1/12 10:25am: Jessica is out of the ICU. She just got set up in her new regular room (by ourselves, not sharing). She is in pretty good spirits, but after being awake for about 3 hours, I think she is going to sleep for a while. The nurses had get retake the meds she vomited, and they stayed down this time. Also, she is off the morphine and on percocet, which is a good sign.

1/12 9:37am: Ok! Sorry about being such a slacker last night. Don’t worry, nothing really changed after my post. That is, until this morning. I couldn’t stay the night, and before I got here, he had seen her surgeon and some other doctors. They removed the bandage from her incision. I haven’t seen it yet, but they said it looks really good. When I came in this morning, she was sitting up a more alert than she had ever been yesterday. They had er get down some fluids including broth, juice, jello, etc. Unfortunately, she piled it all out about 10 minutes later. They are going to try some different nausea medicine because they should be able to control this better.

So, she was awake from about 7:30 to 9:30, so that’s a really good sign! She even got out of the bed for the first time to go to the bathroom (oh yeah, no more catheter either). They have our next room assigned (call if you want the number), and they will love us soon. Less than 24 hours in the ICU! Yay! All her monitoring wires have been removed, so that’s good. She is just down to two IVs.

Anyway, I guess you can probably tell that I am kind of excited. :). I just didn’t like seeing her devoid of her normal personality yesterday, and it was nice seeing some of that shine through this morning, especially her smile!

7:25pm: She is about the same as ever. I had to leave from 6:30 to 8:00, so last I saw the nausea medicine was working. Headaches worse than any she’s ever had, but they seem bearable. She’s still sleeping 95% of the time. Also, the doctor said that the nausea is common with this surgery for up to 3 days afterward as part of what they are cutting is part of what controls nausea or something like that. I will post one more update when I leave at 10pm.

3:45pm: Code red finished about 10 minutes after it started. No idea what it was. Anyway, Jessica woke up to roll over and vomited (or tried to; nothing in her stomach) for about 5 minutes. She is back to sleep now though.

3:25pm: Attention! Code Red! That’s the message that is blaring over the ICUs speakers. It sounds like it is for our whole floor. It is accompanied by loud whooping sirens. The first time it came on, Jessica fluttered her eyes some, but now she is just snoring away! A nurse came by and made us clise and lock our door weird! Jessica did wake up for a bit a little while ago, an she seemed a lot more coherent than before, but she quickly fell asleep. Anyway, I’ll update if I find out anything more about our code red.

2:20pm: She finally got an ICU bed! I just came back, and after saying hello to her dad, she promptly passed out and seems to be resting peacefully. Hearing her snore has never been so comforting! I can’t see her stitches yet because they are still so bandaged up. Before passing out, she told us she vomited 2 or 3 times after waking up from surgery, but not since then. The nausea is still there and the headache excruciating, but other than that, good! Ok, I put that last part in there, but she seems about as good as can be expected. I really hope she just sleeps and sleeps.

1:36pm: the nurse finally called us and said she got permission to move Jessica to any unit in the ICU, so she’s hoping one opens up in the next 30-40 minutes. She said she (the nurse) hasn’t been more than 6 inches away from Jessica’s bed this whole time, so that’s reassuring. She also said that Jessica is still kind of sleeping on and off, and they would like to keep it that way since it is the best way to combat the nausea.

1:20pm: Still waiting.

11:35am: Ok, after all that cursing, I’m going to bless someone. Bless Justin Clayton! His family are friends of ours, and it just so happens that he is a surgical resident and is on call around our building today. He is stopping by to check on Jessica every so often, and he said that the vomiting was just initially and a typical reaction to the anesthesia. He said that she is sleeping now and is doing pretty well. We are so lucky that even though we can’t go in to see her, we have a friend who can. Thanks Justin! Oh, and still waiting on that ICU bed.

10:57am: Curse you bad-news-giving lady! The nurse just called again. Jessica is still in the recovery room and STILL can’t leave and we STILL can’t see her. And she is apparently now vomiting. I don’t know how much because AT&T dropped my call and now she’s not calling back. Curse you AT&T! Curses all around!

9:45am: A nurse called me from the recovery room. We aren’t allowed to go see her yet because they have other patients in there and privacy and blah blah blah. She said that no rooms are available in ICU yet, so until they are, we can’t go see her. :(. Grrr. She did say that she is ok. She has been kind of nauseous (normal) and in pain (also normal), but she is giving her drugs to help. Let me see my wife!!!!!!

9:00am: The surgeon (Dr. Mapstone) just came and talked to us. He said the operation went well. He said she was really tight when he opened it up (the brain was really cramped), so it was really good we got this done now. He said she’ll get into recovery soon and we’ll get to see her. He said everything went really well and she should have no complications, but that’s why she is staying here for several days, so they can monitor her.

7:45am: I got the first call from the nurse. They finished anesthesia ok and the surgeon has made the incision. Crossing fingers!

7:10am: Ok, we’ve parted ways. She’s probably gone under anesthesia (spelled it right the first time!) at this point. We probably met about ten doctors before she left. Dr. Mapstone (our surgeon) came in to say hi. Last month we asked Heavenly Father to give us guidance in picking the right surgeon, and when we met Dr. Mapstone, we felt at peace with him being the right one. Well, after he stopped in this morning I felt that same peace very strongly. I hope Jessica did too.

6:20am: We got here around 4:50, but they didn’t open until 5. Longest 10 minutes ever. We actually got called back to the pre-op room around 6:00. She’s all IVed up and ready to go now. No turning back now! (not that we would want to). Now we wait for all the different people to show up here before surgery. Luckily, they will all come to us.

I (Adam) will be updating this post with all the pertinent information about Jessica’s surgery over the next few days, so keep checking back. Here we go!

Living with Chiari – Adam’s Goings On

1/12 9:05pm: The cafeteria here is pretty good! I had lunch and dinner there, and it is really cheap. I had a hot link in a bun, chips, a cup of soup, and a large drink for $5. I didn’t know they closed at 7, so I made it down there a little late, but they did have a vending machine that sold the same fresh salads and sushi that they sell in the cafeteria, so I bought a HUGE Cobb salad for $3.60. It was a really good deal and quite tasty. I’m glad that they don’t rip off all the employees and visitors here and actually understand that people are usually here because they are dealing with something crappy. It makes us feel a little better when someone cuts us a break.

Anyway, I’m about to leave for the night. I might stay tomorrow night, but I’m going to take Spencer to his 1st Mother’s Day Out tomorrow. We wanted it to be one of us taking him because it is such a new place.

1/12 1:52 pm: it is a lot more comfortable for me in this room. I can control the temperature, I can close the door, and I am way less stressed about Jessica. I have been mostly playing games on my phone and watching Netflix on my iPad. I was so excited the hospital’s wifi was letting Netflix work. I’ll probably get a lot of stuff watched this week. Last night, I was reading Metro 2033 while sitting next to Jessica in the ICU. It is a sci-fi post apocalyptic thriller about human life in Russia that was forced underground into the metro tunnels. It is often quite creepy, and reading it in the dark late a night was pretty cool. I highly recommend the book, and if you like video games, there was a game adaptation that was actually very good.

1/12 10:17am: I left last night around 10pm, and I thought I was going to just crash into bed when I got home, but I ended up not going to sleep until 11:30. I was worrying about Jessica because I didn’t know if her constant sleeping was normal or not. Now I’m just sitting in our normal hospital room watching her sleep. I’m really encouraged by her progress so far today. Hopefully they can get the nausea under control.

1/11 7:30pm: Well, I mostly just sat in the chair next to Jessica and read a book, played on my phone, etc. She is sleeping so much, which is good. It makes me wonder if I am doing any good being there, but I think she rests easier knowing I’m there. Now I am sitting back out in the waiting room. They kick all visitors out from 6:30 to 8 in the AM and PM. I grabbed some KFC before coming back here to sit. It is interesting being in the same room as so many anxious people who’s relatives/whatever are all in the ICU. Everyone either seems antsy or exhausted. I’m currently antsy.

1/11 2:30pm: I’m finally in the ICU with Jessica. Read the main post for details about her. A perk of being here is that the heat is on high and it feels really good! Plus I can just sit and listen to her breathe. I’ve never quite enjoyed it this much before.

1/11 1:20pm: We finally found a waiting room that wasn’t cold. I was finally able to nod off a bit, though I’m not sure if I feel any better. I just want to see my sweetie!

1/11 10:37am: gah! It was so cold in that waiting room that we moved down to the cafeteria. It is still cold here, but not as bad. To put it another way, we went from the icebox to the popsicle.

1/11 9:45am: so, I’m just waiting for them to bring us into recovery, and this waiting room we’ve been waiting in has no heat. It’s the coldest day of the year, and no heat! I’ve had my full winter coat on for the past three hours and I’m not uncomfortable in the least. Anyway, I’m kind of scared for how much pain Jessica will be in.

I will be updating this post throughout the next few days with what I’m doing. Definitely not the most interesting stuff, but it will give me something to do while Jessica is recovering/sleeping/etc.

Living with Chiari- Impending Surgery

It’s been a while since I’ve updated about what is going on with my Chiari situation. We have decided to go for the surgery with Dr. Mapstone (the only one I wrote about). I am going to be having a Sub-Occipital Decompression on January 11. I will be in the hospital for 5 to 6 days.  So I’m either coming home Sunday the 16th or Monday the 17th.

On November 30th, I had my 4th MRI in November.  Dr. M wanted to see if I had a tethered Spinal cord, which would change a few things he did during surgery.  I do not have one, for that we are grateful.  I also had my first CT scan and some X-rays taken to see if I had a weak neck, which would also change the way the surgery went.  I do not, so we are good to go.

December has been an oddly quite month compared to January, but we do have it scheduled and are getting things ready to go.  People keep asking me what they can do to help, and I honestly have no idea what to tell them.  For the first 3 weeks, I’ll probably need people to take Spencer so the person with me can take help me without having to fight Spencer to do it.  We really don’t know what we are going to need.  It’s hard to tell from this side of things.

I have a friend taking Spencer the first 3 days after the surgery (day and night) while Adam is staying at the hospital with me.  Then Spencer’s G’ma and G’pa H are going to take him over the weekend.  We’re hoping that I get to go home on Sunday, but either way the friend that is taking him Monday knows it could be an all day thing.

Everyday that first week I’m home, Spencer is going to play at a different friend’s house every morning.  Thank you to all my friends who are willing to let my little boy come play.