Sunday, August 28, 2005

It's beginning to look a lot like....zzzzzz

Guess what I bought yesterday? No, not Christmas gifts, per se. I bought the materials to MAKE some Christmas gifts. Now, I can't say what I bought or what I'm going to make because various readers of this blog just might be the recipients of some of my homemade treasures. But I can say that I've got at least a couple fun projects ahead of me to get crackin' on.

(Sweetie is starting to get into the holiday spirit as well. Her birthday is December 20th, so I told her the other day that on her birthday Daddy and I will take her to see Santa. Ever since, she's been thinking about this and will even stop her regular play to get up, run over to me, and whisper to me like it's some great secret she's trying to keep "Guess what? It's my birthday and I'm going to see Santa! Yeah!" So cute! She'll then go into singing Happy Birthday to herself and tell us all about her cake with letters on it. It's not that she really thinks it's her birthday now, I don't think. She's just excitedly thinking about when the day comes. Okay, so maybe she's more in the birthday spirit. Whatever - it's all joyous.)

Another way I can tell it's getting to be that time of year is because - A) I'm starting to get really freaked out about all the money we end of spending for Christmas (hence the move toward more homemade gifts), and - B) I'm starting to get really overwhelmed with all I have to do (i.e. - the homemade gifts. What a vicious circle.) Not just with making the gifts, though. It's everything I have to do, today and looking forward. For instance, Sweetie is down for her nap now, so I really should start organizing my gift materials, but I also always write my blog entries during this time (which is what I've obviously chosen to do now). Then I have to check on the laundry every so often, as there are piles of it to do. I have a second Christmas gift I could get started on. I really should write a little more for the at-home/writing portion of my 40-hour work week (I have a couple hour's work to make up from last week because life was too chaotic to get it done then). But what I want to do most, since I was the one to get up with Sweetie this morning at 6:15 am, letting my husband sleep in until 8am, is to take a nap. And the damp, dreary weather today is strongly pulling me in the direction of my comfy bed.

When I went to my first visit with my new neurologist a few months ago, I was given a five question sleep deprivation survey. I had to rate, from 1 - 5, how sleepy I felt in different situations. My results showed I was "highly" sleep deprived and should seek medical attention ASAP. I rechecked my answers to see if I could better my score, but even changing a few numbers here and there didn't get me out of the "red zone". Hmmm. Is this really a problem, or is this a relatively-new-mom/disabled-woman-who's-not-used-to-so-much-constant-activity issue? I tend to lean more toward the latter, and I suppose my doctor does too, because he didn't talk to me about the survey's findings.

When I first met my now husband he took me on many wonderful weekend adventures. We went mini golfing, shopping at the outlet malls, dancing under the stars at outdoor concerts in the park, out on dinner dates to some great local restaurants, and to meet his extended family at their annual reunion picnic, plus so much more. And you know what happened after dating for just one month? I found myself in the hospital overnight with mono. I was hospitalized because my doctor wanted to be certain in ruling out meningitis, which, of course, it was. But my point is, all this new activity in my life - when I was used to staying home on weekends, reading or watching T.V. - had exhausted me to the point of illness. I'm thankful that my spina bifida is at a level where I am able to be more active if I choose, but I guess my body had had it at that point. It taught both of us that, even though I technically can do the physical activity, I still have to be careful to take it easy.

Writing this entry has made me realize that it's okay for me to feel so stressed - and so pooped. I see that I do have a lot on my plate and it's okay for me to feel overwhelmed about it all. I also don't have to be engaged in lots of physical activity to feel tired. The housework I do, plus all the little mental and physical things that fill up my days in caring for my daughter and completing my job, are enough to wear me out. And that's okay. I just have to remember to pace myself.

This morning when my husband and Sweetie were running around like lunatics, playing "chase me", I was feeling really down on myself that I couldn't play this with them. It especially got to me when, after my husband left to work on some home projects, Sweetie asked me to chase her and I had to say I couldn't. She was totally fine with this and easily transitioned to some calmer activities. I just was having a mini pity party for myself, feeling like I'm not as active a parent or as fun a parent as she wants me to be.

But, then again, who's since woken up from her nap and is now sitting on my lap as I write this - and not with her Daddy who's now resting on the couch? My Sweetie, that's who - the best Christmas gift I've ever received.

Sunday, August 21, 2005

Fear and Turtles in New Hampshire

Lately Sweetie's been saying that she's "scared" of many things. Everything from Grampy to bugs to the T.V. (both off and on) and even her toys supposedly scare her. This has got to stop.

It seems to have started after we took her to an amusement park where we all went on the tilt-a-whirl style ride, fashioned in the shape of friendly turtles. She really wanted to ride it and, technically, she was allowed to go on this ride as long as her parents were with her. But really, I was even scared of it! She lasted through the ride (barely - she REALLY wanted to crawl into her Daddy's lap) and we told her how proud we were of our brave little girl. But the lasting impression for her - the story she told over and over for the next few days to anyone who would listen - was of the "scary turtles". "I cried on the scary turtles, Grampy" she said as she talked to him on the phone the next day. Uh oh - now we've done it. We've brought fear into Sweetie's life.

In her infant and even early toddler days, I would pass by certain commercials for horror films, or watch somewhat scary scenes on popular shows like "CSI". Gruesome images that I needed to turn away from flashed across the screen as Sweetie sat calmly on my lap drinking her juice. She didn't even flinch at such visual stimulation. I remember one episode of said show where I told my husband "she has to go to bed NOW." because the storyline and scenes were just that terrifying and brutal. She didn't seem to mind what she saw on the T.V., but I personally didn't want her subconscious mind to take over and give her nightmares from it. Or would she? Who knows. It always made me wonder just when does a child "learn" about what things are scary or yucky to look at or just plain bad? Well, now I know, because we've taught her ourselves. "We won't go on the scary turtles again." we promised as we quickly got off the crazily whirling ride. "That was scary." we told her, followed by "you were so brave!".

I wish children never had to learn fear. But I guess it's better to be scared and cautious than absolutely fearless, always putting yourself in potentially dangerous situations.

I'll tell you what's scary for me. Change. Changing Sweetie's routine has always made me scared. Well, let's say, uneasy. Simple things - like putting her to bed unswaddled for the first time as an infant after weeks of successfully putting her down tightly wrapped up. Or changing how much milk she drinks in a day and when she drinks it. Will getting a little less milk earlier in the late afternoon mess up her system so that she wakes up earlier from hunger? Anyway - you get my drift. Change can be scary.

Now we're facing two of the biggest changes to Sweetie's routine. Potty training and moving her to her big girl bed loom straight ahead of us - and I am terrified. About how to execute the changes and about how she'll take to them.

I've talked about potty training here before. We're still not there yet and I don't know how to teach her, given my own personal experiences. She has successfully peed in the pot once, for which she was abundantly praised, but that seems to have been just a flukey "accident". But within the last couple weeks she has been talking more and more about when she's "tooting" in her diaper and she has even told us when she feels wet - both very good signs that she is approaching readiness. We also have her Dora panties, that she picked out herself, waiting for her in our bathroom. A prize for when she’s learned. We'll see how soon it is before she can wear them full time.

Then there's sleeping in her bed. I'm not afraid of her falling out, really, because we have a safety rail attached to the side. I'm just worried about how to keep her in bed. She also doesn't have a headboard yet, and until she gets one, I think the bed is off limits. Her bed rests along its side against one wall of her room, leaving the head of the bed open to the room. Without a headboard I feel she could easily scoot up to the top in her sleep and fall out that way - or simply use it as an easy escape any time she feels like it. It really scares me that we won't be able to ever convince her to stay in bed. I don't wear my braces at night and cannot help my husband chase after an escaping child all night long. I don't know how parents do it. Should we stay in the bed with her the first few times until she falls asleep? Should we lock her in her room so if she does get out she at least can't go any farther than that? If anyone out there has any suggestions, I'm very open to hearing anything you've got to say.

From Sweetie's fear of the twirling turtles, to my fear of an escaping child at night - it's all about loss of control. Big or little, we all like to feel in control of both ourselves and our surroundings. But growing up - and growing stronger as a person - means giving up some control. You've got to give yourself over to what's out there in this world to see how to manage yourself in new situations and where they can lead you - for good or bad.

I still don't think Sweetie has any cause to be scared of her Fisher Price barn, though. I think she's got that "situation" pretty much under control.

Just a quick update - I asked my husband this evening if he got a chance to read today's entry. We were talking a little bit about the turtle ride again when Sweetie piped up "I want to go on the turtles, Mommy!" So, it looks like she's over that fear, anyway. Thankfully, at her age, she's much quicker to get over certain things than older kids would be. I just wonder what she'll say the next time we visit that park...

Monday, August 15, 2005

Well Watta Ya Know....

It's amazing how things progress. In just 2 short months I went from having never even heard the words "Arnold Chiari Malformation” before, to seeing it discussed on one of the chat boards I'm involved in, to having a new blogging friend find out that her daughter has it (along with SB), to finding out just today that I have it myself!

I went for a routine neurology follow-up appointment with my new neurologist after having an EEG and MRI done. I want to get off of the anti-seizure meds I'm on because I've been seizure-free for about 6 years now. So my doctor tells me the findings of my MRI - I have ACM I.

He was actually pretty nonchalant about it and thought I probably even knew about it from my previous doctors and medical records, but I hadn't. Neither I, nor my parents, have ever been told I have it.

In my case, I have ACM I, which I guess is a less severe form than the level II. I'm still learning about it but, for me, it seems to mean that my cerebellum droops a bit over my spinal cord. I am not symptomatic (headaches, dizziness, double vision, and weakness), so there's nothing to be concerned about or really do about it now. If I ever do have symptoms, then I can discuss with my doctor different treatments, ranging from monitoring it, to therapy, to decompression surgery.

The seizure I had years back is unrelated, and nothing abnormal was found on my MRI or EEG in regards to that - so going off my meds was approved.

So, anyway, this all just goes to show that you learn something new everyday. Like I said, it's just kind of funny (peculiar, not ha-ha) how fast ACM has entered into my life - first in a very indirect way, until now, finding out it effects me very directly.

Sunday, August 14, 2005

Truth and Consequences

My husband and I are just wrapping up a week's vacation from work. We've spent the week with Sweetie, taking day trips on some days, playing close to home on others. Overall, it's been a great week (with not a bit of home repair made - yay!) and we are saddened to go back to the workweek drudgery.

One thing this week has afforded us is the opportunity to work with Sweetie on improving her understanding that her actions have consequences. Everything from no trip to the "train store" unless the blocks are picked up, to no cookie until she eats all of her dinner - we are all striving to abide by the rules.

Take today's lunch, for example. We all had the same thing to eat - grilled cheese and turkey sandwiches with chips. Sweetie LOVES chips. In fact, we know if we put them on her plate, combined with almost any other food offering, the chips will go but the rest of her meal will stay. So, like we've done before, we first gave her the sandwich to eat. If she ate that, then she could have chips. She is such a light eater, though, that I don't even expect her to eat all of her sandwich before getting the chips. Just one or two bites would be fine with me. So, for today's lunch when I asked her to eat just one more bite of sandwich before she could have chips, she picked up the largest bite on her plate. Great! I thought. This piece is so big that she just has to take one bite of it and she can get some chips. But then she kept eating it. Who am I to complain - eat! As she got closer to finishing up this chunk of sandwich - all she had left was one more mouthful - I changed my plan so that she had to completely finish this bit of sandwich before she could have any chips. Wouldn't you know - with one small mouthful left, she claimed herself done (but still wanting the chips, of course). So, what am I to do? Maybe not the best decision, but I decided she could have some chips because she had, after all, eaten more of that bit of sandwich than I had originally bargained for.

Sweetie enjoying a sweet treat at the family picnic

As all parents know, sometimes we tempt (okay, bribe) our children with promises of certain treats if they do/don't do certain things for us. I ran into this situation just yesterday. We were packing up for home after spending the day at the park for our annual family picnic. The ice cream truck had come into view and many of the little ones from our group were clamoring around, waiting to make their selections. Luckily, we don't have an ice cream man who regularly visits our neighborhood, so Sweetie is still blissfully (for me) unaware of what it means when those truck chimes sound. In fact, we were almost home free, steps away from settling into our car, when she saw some of her young cousins enjoying their cold treats. Of course, she wanted some. We said no. She had already had a fair amount of goodies from the other picnic offerings, so she didn't need ice cream now. She was upset. So, what's the next thing out of my mouth? "You can have ice cream once we get home, but we've got to go now." This, she understood and accepted. We were all happily on our way home. But I knew full well that we don't have any ice cream at home. I was hoping against hope that the 1 hour+ drive back would be enough time for her to forget the deal we made. And if not? Well, I figured my husband could make one of his yummy chocolate smoothies, which Sweetie loves, to share with her. After all, it's kind of ice cream-like.

Thankfully, my wager was correct - once we got home she had much bigger plans for how she, Mommy and Daddy would spend the evening than eating ice cream. She made no mention of the frosty dessert, and neither did we. That time, we got off lucky. But, believe me, there have been other times in our past - and many more times to come, I'm sure - when my husband and I need to be more careful about what we truthfully intend the consequences of her good (or bad) behavior to be.

Jo's Experience

For this entry I think I'll let someone new take the reins. Her name is Jo Buck, a woman with SB who recently gave birth to a beautiful baby boy. She has written a document about her pregnancy, labor and delivery experiences and I'd like to share it with you (with her permission, of course granted). It is a very well written personal account, while at the same time very informative for other SB women out there considering pregnancy. So without further ado, heeeeeeeeerrrre's Jo!
Pregnancy and Spina Bifida

Folic Acid
For women with spina bifida, it is vital that 5mg of folic acid is begun at LEAST 3 months before trying to conceive. You can get a prescription from an OB/Gyn or your family doctor. You should also up your intake of green, leafy vegetables, and eat foods fortified with folic acid.

Your siblings, if you have them, must also remember that they too, need to be on top of folic acid. Because of the family history of spina bifida, they and their partners run the risk of having a child with it. In fact, they actually have a higher risk than you, yourself do.

Our son was an “oops it’s a miracle” baby because we were actively trying NOT to get pregnant, due to my fears of passing on the spina bifida. I was therefore, not on ANY form of folic acid. If only I had been prepared, I would not have spent the first part of my pregnancy hysterically afraid of what me not being on folic acid before conception had done to my son. I do want to add, that at my first OB appointment I was put on folic acid and it made me very nauseous

UTI’s are very common during pregnancy. Sterile cathing is necessary. Using new catheters each time, along with washing hands before and after, and using gloves can cut down on the occurrences.

If you are not already, you may find it necessary to be on a low dose of antibiotic for the duration of pregnancy.

My first symptom of a UTI, after the morning sickness stopped was vomiting. If I threw up, I knew I had a UTI. Especially with self-catheterization, keeping on top of UTI’s is a necessity.

UTI’s during pregnancy are especially dangerous because UTI’s can lead to dehydration, which can put a woman into pre-term labor.

During my pregnancy, I had UTI’s so severe I actually bled. For a pregnant woman this is the most terrifying experience in the world. You see blood during pregnancy, when blood should not be there, and your heart will hit your throat. It is very important to contact your Dr. if you see ANY kind of blood.

I typically walk unaided, and for the most part, I did until I was about 5-6 months. Then I began using a wheelchair for walking long distances. By 7 months, I was using one even when I was at home. You may be lucky and never have to go to this extreme. It mostly depends on the position/size of the baby, and your own center of balance.

I cannot speak for those who walk with aides, because I do not, but it might be a necessity for you to do so earlier.

I was very much afraid, that my mobility would be hindered once my son was born. However, it only took a few days to get used to walking without the baby belly being in my way. I also want to say that I had this fear that the pregnancy would do damage to my spine and I’d end up paralyzed, I don’t know why I was afraid of that, but I was. I’m happy to say that I’m almost completely back to what I was like before he was born.

I think it is safe to say, that most of us have had episodes of incontinence in our lives. If not, consider yourself blessed. Starting from about the 4th month on, I had zero bladder control. I found it a wise investment to get my hands on disposable underwear and use those. Even knowing about the incontinence I had a scary experience that I think I should address.

Near the end of my pregnancy, I had a slight scare. I woke up, and as I stood my son kicked me I was immediately soaked. It was far more than a normal “accident” and I ended up thinking my water had broken.

It had not, THAT time. However, due to the incontinence I was experiencing, when my water DID break, I blew it off. If you have a gush of fluid, bigger than normal, during pregnancy, get checked out! I ended up on antibiotics during my labor because I could not be sure when my water had broken exactly.

Constipation is an issue many women face during pregnancy, for us, many already face it on a daily basis and pregnancy can make things worse. Water intake is very important, not only to keep yourself hydrated but to keep constipation from getting severe.

I have always dealt with constipation, but on one occasion I can think of, it got so severe that I was having extreme back pain. This was a new occurrence to me. I have never had it so severely that it made my back hurt, and I found it frightening.

Some stool softeners can be taken during pregnancy, but for me this was not an option, because I also have Irritable Bowel Syndrome, a stool softener would lead to diarrhea, which could then lead to dehydration, and pre-term labor.

Shunts and Pregnancy
This was something I faced, and I think it is important to pass along. For those of us with shunts, it MAY actually be better to go the route of vaginal delivery. Of course, this is best discussed with your doctor.

For me personally I had a c-section scheduled, because I have always been told this is how I had to do it. However, one of the obstetricians I saw during one of my hospital stays actually suggested I try a vaginal delivery: BECAUSE of the shunt!

It never occurred to me, that I was risking my shunt becoming infected, if somehow the incision were to be infected. Not to mention having my bladder nicked during the surgery.

When I went in labor on my own, I ended up choosing to try a vaginal delivery, and though it was only supposed to be a “trial”, I’m glad that it worked out so that I didn’t need a c-section.

This is of course, a decision only you can make, along with your doctors. Due to the different body structures, c-section might be your only choice. You and your doctor will need to make the best decision for you and your baby.

This was my major fear. I was terrified that I wouldn’t know I was in labor. I don’t have a lot of feeling below the waist, even though I do walk. During one of my L&D (labor and delivery) visits I remember asking the nurse’s how I’d KNOW I was in labor. Her answer? “You’ll just know.” That was not a good answer, but there truly are no words to describe contractions. When I was 34 weeks along, I had an episode of threatened pre-term labor. I was feeling a lot of pressure, and it felt different and not right. When I told my OB this, he said “it’s just pregnancy pain, don’t worry about it.” Luckily, I trusted my instincts and went to get checked anyway. When I got to the hospital, I was 2 cm dilated and having contractions. Thank goodness, they were able to stop them.

A few weeks later when I actually went into actual labor, it was far different. I was having excruciating pain in my back. I’d had back pain the entire pregnancy, but nothing like this. The only way I can think of to describe it is, it was as if an elephant was standing on my back and driving a sword into my spine and twisting the sword. By the time I got to the hospital, I was 6 cm dilated.

I am extremely fortunate, that the OB who was on call, was the one who I liked, and who had suggested natural labor. He told me I could choose to go ahead with the c-section, or I could try a vaginal birth. I opted to try a vaginal delivery, with the understanding that it as a “trial” and that if it became necessary a c-section would be performed.

There were several instances when it looked like I would be getting the c-section I so desperately hoped to avoid, even though I’d had one scheduled. I was amazed that I was able to have an epidural, it was performed a bit higher than they normally do them. I will say, that it didn’t completely work for me, but it did take the edge off the contractions.

They figure I was in the beginning stages of labor for several days and didn’t know it, because I had grown so accustomed to the back pain, which is where my entire labor was felt. I never felt pain or tightening in my abdomen like I was told to expect. I had a relatively easy delivery” Active” labor lasted for 8 hours. I was told, however, that a second pregnancy would likely go faster, and that next time, if I so much as think I’m having contractions I must go straight to the hospital.

Things to Remember
1) YOU know your body better than anyone else. If YOU think there is something wrong you should trust your instincts and get checked out.

2) Don’t be ashamed if you jump the gun, and end up running to the hospital for nothing. It is always better to be safe than be sorry. Above all else remember “healthy mommy, healthy baby.”

3) I didn’t touch on this above, but if you are offered pain medications, don’t be afraid to take them. Your doctor/L&D nurses do know what they are doing and will not ever give you something that is dangerous to your or the baby.

4) Rest often, and don’t push yourself to do more than you are able. Your housework can wait.

5) Ask questions about things you don’t understand. If you aren’t satisfied, ask until you are. Your health and your baby’s health is what matters.

If you can think of anything I’ve left out of this please feel free to ask, or let me know. I can only speak from my experience here, but I hope you’ll find it helpful

Sunday, August 07, 2005

The Buzz on Bee

Hi all. So much to talk about today, but what to focus on? First off, I'll mention that my article is now published over at Audacity Magazine. I've gotten some good feedback on it already. As the writer, I can see some flaws with the technical aspect of it that I wish I had caught before submitting, but as a whole I'm pleased. I encourage you to take a look at what I wrote, then post a comment or two at the on-line forum/Parenting Corner over at Audacity. Anxious to read what you think about it!

Secondly, I wanted to tell you all about a new blogger I've found in my searches for others dealing with spina bifida. Her name is Bee and I happened upon her site last week. She and her husband have been dealing with infertility issues for some time now and she has had a number of miscarriages. Deciding to "give up her own biology" for the better of the baby, Bee and her husband decided to go the route of a donor egg. And back in April her wish came true - she was pregnant! Cut to just last week (now at 19 weeks along) when she went for her Level II ultrasound. Her secret wish of having a baby girl was confirmed. But her ultimate wish of having a baby that is "just healthy" was not. Bee found out that her little one has spina bifida.

The baby's level of SB is L4 - just higher than mine at L5/S1. And she's showing signs of hydrocephalus. She has mylomenigocele, as I do - the worst type of SB you can have. Obviously, Bee's head is whirling. How can this be when she gave up her own (presumably) "faulty" genes in order to have a baby with all the "right" parts? It just seems impossible to think that a disabled baby could result from a donor egg. But here she is, living that reality.

At first notice, the doctors painted a very gloomy picture. Possibly her child could walk, but the hydrocephalus - in this baby's case, a form of Arnold Chiari Malformation - could be a larger problem and even cause mental retardation. But by now Bee has had further testing and has gotten some amount of good news in all this chaos. The hydrocephalus is mild and the baby's brain development is normal. Also, the spinal cord is not tethered, which, if it was, would cause further damage by not being able to grow along with the baby (as it is caught up/"stuck" at the site of disability). So it seems like little baby Bee is already a fighter - just like most of the SB kids I've ever known.

The one thing that Bee wants more than anything is to have prenatal surgery for her little girl, so that things that can be "fixed" now can be fixed. Surgery won't reverse or take away SB, but it can halt further damage. Trouble is, this surgery is not considered elective anymore and, in fact, you have to be accepted into a study in order to have it. The study is only looking for healthy, "average" women to participate and Bee does not think she would qualify. She is a slightly older mom-to-be, as she is in her 40's. She also has placenta previa (where the placenta covers the cervix), which in most cases automatically excludes a woman from the study. She has since found out that her placenta previa is only partial, which typically completely corrects itself by the time the baby is due. But still, it seems like it may be a sticking point for getting into the study. Please, if you have any extra prayers floating around your house, give them to Bee, her husband, and little girl. I've only just "met" them, but I know they are kind, loving people who really deserve this opportunity to improve their daughter's life anyway they can.

I've been in contact with Bee since reading about her baby. I posted a comment on her board and told her to email me if she'd like. We've emailed back and forth a few times and I think I've been able to alleviate some of her fears for her daughter's future. Like I said, SB kids are fighters and have just as much gusto and life in them as any other kids out there! As a child I wasn't "allowed" to run, but I did anyway - breaking through many a pair of braces in doing so. Metal braces, mind you. My parents were/are great and always let me try almost anything I liked. From roller skating, to bike riding and so much more, I was never held back in pursuing my dreams - no matter how big or little. I found out for myself that some things weren't possible for me (like roller skating and bike riding), but at least I was given the opportunity to find out on my own.

I've linked to Bee's site over on my sidebar, under "Raising SB Kids". I have become so interested in her story and thought that you, my faithful readers, would be interested as well. Click on over, leave her an encouraging comment, and help her, her husband and little girl get through this difficult time. They will do just fine, I'm sure - but I know they'd love to hear from anyone who can leave a kind word and helpful advice.

(And Bee, if you're reading this and see that I've written some misinformation about your situation, please feel free to go to my message board - the pen icon in my sidebar right under my name - and post a correction. As I've told you, I don't know much about Arnold Chiari Malformation, and I may have misinterpreted some other parts of your story. Please, correct me where I need it. Take care!)