Rural Felicity

Pity

2009-08-06T15:12:00.002-05:00

This was posted on G's caringbridge page:

So I posted a link on Facebook today for www.curepity.org. G has frequent visits to Gillette and their site has this up. I found myself having to put it into practice today.

G has been playing with the neighbor girls a lot. They are both about his age, and they all play so well together. I heard him bawling and crying today, and I didn't know what was going on. Was he hurt? Mad? Why was he so upset? I ran outside to see what was going on, and he was furious because he wanted to ride bike. What do I do as a parent? Tell him he can't? Ugh... I felt so sad for him at that moment. I felt so sorry for him. I decided to put him on the bike and pushed him around until he got tired of it.

He was happy, and so was I! I know there are bikes he can use that are hand-propelled, and maybe I'll have to look into getting one. He was back on the ground playing, and all of a sudden he started yelling again, "Ahhhhh, I can't walk! I need to walk! I'm not too little!! Ahhhh, my legs are broken!"

Wow. He is such a verbal child. He's only three, and he expressed his frustration so well. Here's the thing, though, I have commented on how well he's doing this year getting around and didn't think he was that frustrated.

A little piece of my heart broke for my little one, but I know he'll triumph. The kid has determination and he'll figure it out. I'm not really talking about walking, but more about figuring things out and dealing with them. I know he will. I can't sit and feel sorry for him, but I can encourage and support him.

2009-03-06T11:36:00.004-06:00

G went to a full afternoon of school yesterday! It sounds like he did wonderfully. When I picked him up, and we were heading home, I asked him what he thought of school. His reply, "It's a great school!"

We finally got his twister straps (and STILL no walker), and he isn't loving those. They sound horrible, but they're pretty basic. I plan on getting a picture, but right now, we'll just say he's not too cooperative.

After his MRI results, I feel so elated! And kind of lost! LOL When he had SO much going on, it seemed like that was the way it was going to be. Now, life with G is pretty low-key. When I had to fill out the paperwork for his MRI work up, the space for surgeries was way too small. It's always kind of sad to fill out all his surgeries, and he's only three.

What it looks like:
2005- 9/29- shunt placement/myelomeningocele closure, 12/13-bilateral clubfoot percutaneous tenotomies
2006- 1/9-shunt revision, 2/23-cystoscopy urethral stricture repair, 5/1-shunt revision
2007-1/12-shunt revision, 1/24-bilateral clubfoot percutaneous tenotomies, 1/30-shunt revision, 2/4-shunt replacement, 2/14-shunt revision
2008- 4/25 left clubfoot revision

It's tough to fit that in the space allotted.

As we approach April as our one year anniversary of being surgery-free, I think I can finally accept it. Now that we've been told TWO years for a follow-up, I feel like just maybe, yeah, we'll make it. For so long, not even realizing it, I was waiting for that other shoe to drop. I realize that it still can, but I'm not holding my breath anymore. Life without surgery after surgery feels kinda good. All the unknowns don't seem to be beating on my door so much.

An MRI,etc

2009-03-05T09:53:00.003-06:00

G's appointment went well yesterday. I should really say appointmentS because the boy had several.

We arrived early at 9:00 am. He went NPO at 7:00 am, so it worked out well. I'm not sure about all the times, but it seems like they got things moving relatively quickly. His MRI was scheduled for 10:30, and it was started right at that time! He had a head CT before the MRI, and those kind of freak him out as he's had so many. He did SO well, though. He was sad, but he did remain still.

He charms the nurses like crazy. He's got so much wit and humor and makes the cutest faces. They did not want to poke him for the I.V. but, of course, it had to be done. He and I read a book while they tried to find some in his feet (no sensation), but the veins were too fragile and kept blowing out. He would look over the book to see what they were up to, and would start to get upset about them "hurting" his feet until I'd distract him and he'd forget all about it.
The I.V. ended up having to go in his hand. One of the nurses names was Rosie, and he really seemed to like her. They had a different nurse come in because they didn't want G to be mad at them. While they were poking about, G started yelling, "I get stickers! GET me stickers!" I felt so bad that it hurt, but I had to giggle at his demand in the midst of his pain. It went relatively fast (I'm sure not so much for him, but if he could remember a couple years ago...), and we took him in for the MRI.

Just like that he was out, looking like a peaceful little angel. Hubby and I headed downstairs for a candy bar and then back to the waiting room. He was in the recovery room within about 50 minutes.

Once G woke up, he was off and on a little loopy, and boy, he says funny things. He had a red popsicle and some apple juice. When the IV had to come out, he was so excited to get it out, until it had to be pulled out. The nurse asked if he could count to 10, and he said, "yes". She told him to start counting, and he said, "Ten." LOL

Afterward, we headed to the x-ray department, and G was amazingly cooperative. Usually, we have to help hold him still, but he would just stay in whatever position he was put in. He had about 6 taken, so very surprising to me he did so well!

We headed over to see the neurosurgeon's nurse practitioner, and she was pleased to report that all looked good!! Yay!! We won't need to return for two years to follow up!

So that was day, and the older kids got to go visit their cousins and aren't home yet.
We are so tired but oh so grateful for such a GOOD report.

2009-01-16T10:39:00.003-06:00

Poor little G is sick. Nice, old-fashioned cold, and he's miserable. This morning he woke up and his eyes were glued shut. He was freaking out and crying that he couldn't see, and I think he made a comment about his eyes being gone. I got a warm washcloth and finally he was able to open them. His eyes got as wide as they could in their state, and he exclaimed, "I can see! I can see!"

It was so cute. His whites are a bit red streaked, so I'm pretty sure we're dealing with conjunctivitis. No PT today!

The temperature outside was about 30 below (F) this morning, not factoring in the windchill.

2008

2009-01-09T11:47:00.002-06:00

2008 vs 2007. Quite a difference! G started 2007 out with four shunt revisions, rotavirus hospital stay, and the year went on with multiple UTIs and ear infections. My mother was also diagnosed with leukemia that year. But 2007 is gone, right? Why am I bringing it up? Because it's relevant to 2008, I guess. 2008 was as uneventful as 2007 was eventful. We had ONE surgery. A planned one at that! We had a couple scares where we thought something was going on with the shunt, but not this time... My mom is still on chemo but in remission, so the year 2008 rocked!

Why is it, though, when I reflect on 2008, I mostly think of 2007? I am so thankful this was a non-eventful year. There were things that went on, most assuredly, and not all of them were good, but overall, the year was a very good year. I'm a little shocked, actually, that it's 2009.

G is now three. He has taken steps in his walker. He is going to school sometimes and getting PT twice a week. He is here. One of the things that seems so far away is being told he wouldn't live. Living that first year of his life with bated breath, wondering if he'd be snatched away. Going through multiple surgeries and wondering if this, this is how it was going to always be. And then, here we are.

He may have things in his future, but I'm not dwelling on those. The here and now is that I have this fabulous three-year-old. He is G! He's fun, witty, smart, funny, ornery, and so full of personality.

Walkers, twister straps, waiting..

2009-01-04T12:22:00.004-06:00

We are still waiting for G's walker. Thankfully, we have one through the school that is working well. He's been very stubborn with the PT, and I think he's in all his three-year-old glory when it comes to that. It's such a challenge figuring out how to discipline without giving him what he wants, which is to quit pt. So far, I've been encouraging to apologize after we are all done.

He's been taking steps in the walker! His therapist moves the walker, and he takes the steps. We need twister straps to give him more stability and endurance, but I'm thinking I have to call again to get the ball rolling. The holidays seem to have messed up our fairly timely clinic!

G likes to wheel around in his chair when we go places. Last week we forgot to put it in the van when we went to an event, and he was so irritated. He kept telling us to remember the chair next time. He tends to "run" while he's in it, so we're having to set some boundaries. He's way too good at stopping at will, so he thinks he's got it all figured out. I knew three was going to be a challenge!!

2008 was a really, really good year. No major hospital stays, only one surgery (planned), and overall good health. Soooooo different than 2007. My mom has been doing well with the chemo, and all of our kids have been relatively healthy this year. I have so much to be thankful!

2008-10-22T10:04:00.003-05:00

I took G to school yesterday to participate in the classroom for about an hour. I left him rather than sticking around and observing because I knew he'd do better if I did. I wheeled him in, and he got down on the floor with the kids. As I left, I was totally tearing up. I couldn't believe how many emotions were swirling around as I exited the building. There was a sense of pride, that my little boy was growing up and didn't cry when I left, a sense of sadness for the same reasons, and a nice panicky sensation that my BABY was in school.

I walked over to my aunt's and we chatted and when I returned I sat and watched for about 15 minutes. G didn't see me come in, and he'd join in with the class sometimes, but mostly he watched the kids. They were so cute and so smart! Afterward, I asked him if he liked school, and he said, "yes" and said something about his friends. Awwwww... :)

I was a bit stressed over the weekend because G fell off a chair on Thursday. He hit his shunt, and HARD. I tried to put ice on, but he was very resistant to it. A few hours later, he had fluid all around the valve. I'm pretty sure it wasn't a goose egg because it was pretty soft. He didn't exhibit any other issues, so I've been waiting it out. I know those things are supposed to be pretty tough to damage. On Saturday, though, he fell on it again and bumped it pretty hard. :( I worried ALL weekend, but so far so good.

Three is obviously a bit more daredevil than two was. He has been climbing up onto all our chairs and climbing down on his own. I'm sure the table is next, but trust me, I'm not going to give him any ideas! Last Thursday, he dove out of his chair after something, and on Saturday he ventured down the stairs on his own. How do you maintain independence and caution??? He gets so angry if I help him (unless he asks), but this surge of independence is wreaking havoc on my hair color.

2008-10-13T09:12:00.002-05:00

We went to a wedding this weekend. All the kids did well during the ceremony and afterward, G got in his chair and wheeled around outside. He was having a blast and showing off to no end.

I love the independence this grants him, and even the tantrums that come with that independence insistence are refreshing. What bothers me a little is how much attention he gets. People oooh and aaah over how cute he is, how fast he is, how clever he is, and I worry we're going to create a monster! LOL

At the reception, we didn't bring the chair in and he still went out on the dance floor. Most of the time people carried him, but when it was just the little kids out there he did some dancing of his own. All four of the kids danced up a storm, and they got so worn out, THEY asked to go home!

Things are actually quieting down a little. I'm not so worried about the shunt after the CT and appointments have slowed down. Therapy starts back up this week, and I'm excited to see what things we'll be working with the new therapists.

2008-10-09T08:57:00.002-05:00

Sheesh! I am so delayed on updating! G's evaluation went well. He did qualify for school on physical disability alone, but he won't be attending school yet. He is receiving at-home physical therapy because the bus ride would be as long as the school day! Which is about 3 1/2 hours, we figure. He can't sit that long due to his breakdown issues and because he's only three. I'm satisfied with the set up for now, and the teacher and the PT will each come out once a week.

Also, last week we went to the neurosurgeon and G had a CT and shunt series. All checked out well, and I'm very thankful for that. We also headed to IA for a checkup for his clubfeet, and that appointment also went well. It was a symposium we attended for the Ponseti method, and my oldest and G showed off their feet. Afterward, there was a race for all the little ones that were there, and it was so much fun. Dr. Ponseti is 94 years old, and he was there with his beautiful wife. G went around and around the track in his wheelchair and participated in two of the races. It was wonderful seeing him go. Our biggest challenge recently is dealing with the temper tantrums that come with us guiding his chair. Let's just say, he doesn't appreciate any help. LOL Sorry, kiddo, but there are still rules to follow!

I will try to post pics soon and be more diligent about blogging!! I always have things I want to blog about, but I write it in my head and then, poof!, it's gone.

2008-09-22T11:13:00.003-05:00

G had his school eval, and we'll find out on Wednesday if he qualifies. I'm nervous. On one hand, I want him to qualify but on the other, I don't. I've never sent any of my other kids to school before they turned five, so this is way different (as many other things have been, but still...)for me. What a big step for momma. LOL

Last week when the pt was here, G was so uncooperative. He's been rather difficult with me recently, too. It's tough when there are possible underlying factors. Is it his shunt or is it just being three? Everyone else wants to think it's just being three. Me? I'm not sure. But, I also don't feel like it couldn't be. It's always figuring out what's going on, and sometimes that gets so difficult. He's not three yet, by the way. That is one week away!! How is it possible this kid is approaching three so quickly??

We took G to the airshow to see the Blue Angels despite his aversion to loud noises. With his ears covered he did remarkably well. :)

2008-09-04T12:07:00.003-05:00

This morning I was emailing another mom about clubfeet and shared some photos with her. I hadn't been in the clubfoot folder for awhile, but my goodness. G was so little. He's approaching three shortly here, and I find myself going back to that last month of pregnancy. It was so marked with doctor visits, with unknowns and worries, and here we are today.

Life, though more difficult in some ways, is so much easier now that he's here. It's just life when you're living it, but when you're waiting for something and worrying, you're not living. You're suspended, and frankly, it really sucks. Limbo Land. I've been fussing about the shunt the last couple weeks. Is he three (two) or is it excessive irritability? For him, he's more cranky than usual. Growth spurt or excessive sleepiness? He's growing but combined with the cranky, I'm not sure. I'm not a fan of this Limbo Land but I have gotten better at dealing with it. Well, I say that now. Definitely subject to change.

2008-09-03T09:05:00.003-05:00

It's just G and me! The older three siblings are off to school. G keeps telling me he wants to go to school! He is being evaluated to see if he qualifies for the Early Learning Program. I should hear something soon. Hopefully.

G's endurance is getting better. He is able to stand for about 10 seconds, maybe 15. It doesn't sound like a whole lot when I write it, but it's progress, baby!

There are several kids about a year younger than G on a couple spina bifida boards I frequent, and they are walking. It's so hard to not compare and feel a little bummed. He IS progressing, and that's what I need to hold on to. I am so excited for the other little ones but a little sad that G is still working on standing. It's hard to try to not rush things. I know deep down he's doing very well and I'm proud of what he CAN do.

What's going on?

2008-08-26T10:00:00.002-05:00

I really have no idea why I haven't been updating at all. Well, I guess, in a way, I do. I haven't felt like writing. I've avoided it as much as possible. Everything I try to say seems to require either too much or I just can't get it to come out the way I wish.

Things are going well. Remarkably well, really. G will hopefully be getting a walker soon. His endurance is still not quite there, but he is definitely progressing. How cool is that?? His shunt has been functioning, and we will be going to a *routine* neurosurgeon appointment in the fall. Wow! It seems weird to not be fretting about the shunt so much. The thought is always there, but I think that's the way it'll always be.

G's siblings are all three heading off to school next week. I'm not sure how he's going to handle it. He's going to be bored, no doubt! Mom will have to step up a little and play more. G will have PT once a week, so we will be setting that up soon with a different PT as he's going out of the birth to three program the end of September.

There's the pretty boring update. Oh, I almost forgot! G has a ramp that is absolutely beautiful! He didn't qualify for funding, but the labor was volunteered by a handful of AWESOME guys.

Progressing to the "finish line"

2008-06-03T08:57:00.002-05:00

I took G to his ortho appointment last week, and was a little disappointed in the appearance of his foot. It was still swollen, so I think that had something to do with it. We were going to have him molded for AFOs, but decided to wait until this week. In about two weeks, I should have a lighter kid. LOL My shoulder isn't doing so well with this bout of casts.

G has been playing outside with his brother and sisters, and his favorite places to be are in the cozy coupe or in the dirt. He has a couple of tractors, and he plays and plays in the dirt. I get a little frustrated because he always gets left alone by the kids, but I'm not quite sure how to balance it.

I have more to post about but too many interruptions. I'll come back to it later. :)

post op

2008-05-06T16:48:00.002-05:00

G's clubfoot surgery went smoothly, and he's sporting a neon green cast to his hip. We did decide to put a short-leg cast on the other foot that didn't have surgery. He was sooooooo bored in the room, but he did very well. I sure was glad to get home!

It is finally springtime. G is loving the outdoors, but it's been challenging. He wants to get down and play but it is limited to hard surfaces. We got his new wheelchair!!! He loves it, but the outside terrain is a litte difficult for him right now. He's getting around in the house, and is so excited to be able to see out the windows and the top of the tables and cupboards. He's all toddler now! LOL

wheels and dreams

2008-04-17T08:22:00.002-05:00

G's wheels are in!! I'm so excited to be getting the wheelchair, and I think it's a very timely arrival with the clubfoot surgery and all!

I had a dream last night. G took four steps, and I was just ecstatic. I can still picture his bare little feet taking those four steps. In my dream I shared it with everyone. His feet were straight, his ankles strong, his balance there, and it was such a moment in the dream! I would fret and stew and think I was having issues with him not being able to walk, but I've had some strange dreams this week. LOL There was this one with four guys with no shirts on....

Anyway, daylight breaks and the dream of G's steps is still with me. I was watching him get around yesterday, and he has his stumbling blocks, but it is amazing how he's figured things out. His arms are his legs, and he knows how to use them. I felt a bit melancholy watching him struggle to keep up with his siblings, but I felt triumphant seeing the ground he's gained. He loves his little homemade chair grandpa made for him, and I love the freedom, the glee that crosses his face, when he's in it. I had him outside in it yesterday, and he wasn't able to really get on the grass with it, but he was able to get around so much faster on the sidewalk. I do think that when all the snow melts and the grass isn't mush he'll be able to get onto the grass. As long as we keep it mowed and pinecones picked up!

The differences

2008-04-09T09:11:00.004-05:00

My daughter was born with a left clubfoot in 1999. She was facing surgery at seven months, and I found out about the Ponseti method and its success rate prior to that. I was on a couple parenting and support boards at the time, and I was urged to call Dr. Ponseti, who was still treating kids at 86 years old. The man himself called me back, and a week later we were in Iowa. R responded wonderfully to the manipulation and casting and needed only a percutaneous heel cord tenotomy, a minor in-office procedure, and three weeks of casting after that. She wore a brace for the next couple of years, and we've had our ups and downs, but overall, it was successful.

My next two kids didn't have talipes equinovarus, but I knew deep down when I became pregnant with number four, he would have clubfeet. I don't know why I knew this, but I just did. When I had the ultrasound that told us he'd have clubfeet associated with spina bifida, I realized I was WAY out of my league. Especially when I saw them. They were so different than R's. It wasn't just the feet, but the entire legs were affected.

While I was pregnant with G, we contacted Dr. P about a referral in our area. We felt that going to Iowa weekly was a bit too much for our family of six, especially with all the other issues. The feet were really the least of our worries. Dr. P found us a doctor, and we met with him at around 30 weeks. He was wonderful and helped us understand spina bifida so much.

G's feet are nothing like R's foot. She's not had a regression, and he's on regression number three or four or something like that. He's had about 30 casts, and he's going into more shortly. We went to see Dr. Ponseti last year, and he had amazing results. G's feet responded fabulously to Dr. P's hands, but several weeks after being out of the casts, his heel was back up and his forefoot started adducting. Dr. Ponseti is 95, by the way, and still seeing kids. His 96th birthday is coming up in June.

G had two sets of tenotomies to bring his heels down. I am worried this surgery isn't going to stick either. That is my biggest fear. We will do this surgery, and it will go right back. Plus, he'll have scar tissue he didn't have before. I feel like I've been avoiding this surgery for NINE years (how old my daughter is), and here we are. Yikes.

It's hard for me to be here. It's tough to say he's having clubfoot surgery in two weeks. I think, though, we're doing the right thing. I want my boy to have the opportunity to walk, or even just to avoid skin breakdown from ill-fitting AFOs. This surgery could be the one to make a difference for him. I know if I sat and thought this long and hard about any of his shunt surgeries, I probably wouldn't have wanted to go through with those either. They HAD to be done. There wasn't a choice. Maybe that's how I need to approach this surgery. I have too much time to think about it! LOL

Verbal

2008-04-05T22:30:00.002-05:00

This kid just never ceases to amaze me! He's just become incredibly verbal this past month where we have conversations. One of the things that really tickles me is he copies everything that's said. I like to use big words just to hear him try to say it. :)

Tonight, at bedtime, he just gazed at me, gave me a few kisses, and drifted off to sleep. What a sweet, precious boy.

scheduled

2008-03-30T12:07:00.002-05:00

We have G's clubfoot surgery scheduled. April 25. I am feeling anxious about it, and I think the biggest reason for that is I have time to prepare. His shunt surgeries were stressful, no doubt, but I didn't have a lot of time to get ready. I just had to go ahead with it.

G STILL doesn't have a wheelchair, and we STILL haven't heard anything either way- approved or denied. He's getting around in a wheelchair my dad made him, and it is stinkin' adorable. He's also been cruising along the couch!! This is big stuff. Of course, he'll have his surgery and that'll set him back for a bit, but it will also help him in the long run.

It's been so busy, but it's also been nothing major, so all is well. :)

Where does time go?

2008-02-21T08:55:00.002-06:00

I cannot believe we're approaching March so quickly! We've had a bout of sickness, going to weekly cast visits, birthdays, etc. It seems like I've been really busy, but I don't think I've been as busy as I've felt. G is out of his casts. For now. I am not sure what the course of action is going to be today because his left ankle is swollen and is hot. I'm worried he may have a stress fracture since he was casted for so long and his bones are probably quite brittle. He doesn't seem to be experiencing any pain, but that wouldn't be unusual since he has less sensation.

We have a brain/spine/scoliosis MRI coming up next Thursday. We'll be checking to see if his syrinx has remained stable or gotten larger. Tethered cord is also a concern, so that'll be addressed. Hopefully, the brain MRI shows things to be stable there.

That being said, we've made it a year without a shunt revision!!! February 14 marked the day. It's odd, but it just felt different to make it past that day and realize, yes, we made it an entire year. We really, truly did. We've had our scares/concerns throughout the year, but that scar has had a year to heal. :) I now know and understand (well, kinda) the nature of the shunt, and I'm aware there may be another revision (or more) in the future, but we'll take any small victory we can.

Interestingly enough, one of my major concerns when he was going through all these revisions was how it would it affect him developmentally. We were told recently he wasn't showing any developmental delays, was quite age appropriate other than physically, and he probably won't be eligible for school therapy once he's out of the birth to three program.

G is almost two-and-a-half. Where does time go???

Regression

2008-01-09T09:44:00.000-06:00

G is visiting the casting room again. His left foot has regressed, so he is back in a cast in hopes to regain some correction.

This is January. What a month for the last two years. I feel a bit of anxiety, as if something is just around the corner, daily.

January 9, 2006, G had his first shunt revision. Experiencing it for the first time was frightening and reassuring at the same time. Scary sending my child off for brain surgery but comforting knowing we had caught it and seen the signs.

January 11, 2007, we took G to the doctor and had revision number three (second one in May 2006) the next day. This revision wasn't so cut and dry. It presented oddly, the doctors were puzzled as to why, but we went home with G not quite looking right.

Two neurosurgeon visits, several phone calls, and amidst a bunch of other stuff, we returned to the ER at 3 am with a leaking incision on January 29, 2007. Surgery the next day.

We have also been in casts the last two Januarys. So much fun in WI to have to drive 2 hours one way. Weather just isn't consistent here. Nor is health this time of year. G is pretty sick with a head cold, and I think we'll be skipping this weeks casting due to weather AND sickness.

I've been meaning to write more consistently here, but I find myself not accomplishing this goal. I haven't made any resolutions this year, but maybe I should. One can make resolutions any time of the year, right?!

Aaaaaaaaargh! Sums it up

2007-12-17T15:04:00.000-06:00

A part of it

2007-12-13T08:44:00.000-06:00

Before even becoming pregnant with baby #4, I had visions of my kids playing all together. Running, playing ball, laughing, all that good stuff. I have two girls and two boys. I found out G was a boy the same day I found out he was going to have spina bifida. No, wait, I actually found out he was a boy when we were told he had no chance to live. The next day we found out it was just spina bifida when we saw the perinatologist.

Those dreams of siblings and brothers seemed to crash around me. My overloaded, worrying brain couldn't conjure up happy images. I saw a little boy in a wheelchair watching from the sidelines, left out and unable to do anything. Fortunately, this dismal picture was so far from the truth. The reality.

I had such a narrow view of what disabilities really, truly entail. Oh, yes, my dream is still different than it was when I became pregnant, but it's not doom and gloom. I have a new understanding of what disabled means, how it works.

G is such a part of our family. I remember when I had a difficult time imagining what life was going to be like with him, and now I can't imagine life without him. He fits in so perfectly. He's that fourth child I dreamed about, but an even better reality.

Is there something in the air?

2007-12-12T13:29:00.000-06:00

What a face! :)

I've been making cryptic remarks lately about being stuck in the hospital in January. For the last two years, we've had weekly appointments in January (for casting) and hospital stays (shunt revisions).

We do have an orthopedic appointment for G coming up in January, and I actually should be making one for my oldest daughter also right now, and I dread it. I know we'll be doing 'something' whether it be more casting or discussing the big S word. G's left foot has regressed quite a bit in the last two weeks, and he's bearing weight and we don't want any pressure sores to develop. So far, so good, though.

As far as the shunt goes, I just pray this is our first January without a revision.

Life took over!

2007-12-07T08:46:00.000-06:00

Life took over, and I didn't feel like writing for awhile.

My mom spent 37 days in the hospital, and she appears to be in remission! She's continuing maintenance chemo, and she was doing really well until today. Today she has a fever, and we hope it's not an infection. She'll find out more later when she sees the doctor. I feel so blessed that my mom responded so well to treatment. When those words and enter your atmosphere, there is such a shift, and such a process.

G has been doing well. His loaner chair is gone, so he's been without wheels. He is supposed to be getting his own wheels, but of course, it's taking forever to be approved and processed.

G is progressing on the bearing weight and taking steps front! He gets onto and off the couch on his own, and he's taken about 2-3 steps alongside the couch. One of his clubfeet is rapidly regressing, though, so we need to address that soon.

We recently saw a neurologist regarding possible seizure activity. We thought maybe shunt in October/November, but the ventricles appeared to be stable. We saw the ophthalmologist in November, and his optic nerve swelling appears to be chronic. I was a bit discouraged about that as I hoped we could use that as an indicator. The neurologist ordered a EEG, so that is our next step. Shunt doesn't appear to be the problem, and I'm not sure if there is any seizure activity going on. Sometimes I worry I'm too paranoid and having him tested too much. Sometimes I worry I'll miss something. I need to stop worrying, don't I?!

Last year, G was doing some serious headbanging. The PT, primary, and neuro NP all thought it was probably behavioral. He was 14 months old, and headbanging isn't unusual at that age. Even I convinced myself it was probably normal. It wasn't. From November to January the poor kid banged his head, banged our heads and noses, trying to relieve some serious pressure. It became more aggressive, and I called about it several times before I was finally listened to that I didn't think it was normal anymore.

I think the fact that G has had unusual presentations of shunt malfunction that only I have picked up on due to their subtlety (and lack of "clinical signs") has put me in a "hyper-aware" mode. Maybe paranoid is a better word for it. Anyway, I feel like I've lost my touch and don't know what's going on. I don't want to subject him to anymore tests, especially CT scans in light of recent studies. I don't want to just let things go on either.

And, toddlerhood. Um yeah. Confuses "normal" a bit. He's two and knows it. :)

The wheelchair

2007-09-22T23:11:00.000-05:00

G got a loaner from the PT about a month ago, and it has been amazing how fast he's mastered the wheelchair. He's just so thrilled with it, and he asks to go in it every day. Today he climbed into it. Unfortunately, he's learned how to unbuckle himself and has taken a tumble out. That was before I knew he could unbuckle himself.

It's just a loaner, though, so it could leave any day. :( We are working on getting him his own, but it's such a long, drawn-out process. I hate the thought of him not having it because it is so important to him. He loves being higher and going fast. He's all about the wheels, that boy.

The walker, on the other hand, isn't nearly as thrilling to him. He gets very frustrated very fast that he can't move quicker. His awareness of his feet and legs and what they can do has increased, though, so I think at some point he will catch on. He gets mad because he's not moving fast enough, and he uses his arms to shake it, and yells, "I'M STUCK!!!"

In Love

2007-09-21T11:15:00.000-05:00

Today is one of those days where I am positively absolutely in love with my little guy. Does anyone else know what I'm talking about? I look at G, and my heart feels like it's going to burst because I love him SO much. The little smiles, his profile, the way he moves his legs, everything about him is just so adorable and precious.

It has been a rough couple of weeks, and I feel a bit down today, but he's my little ray of sunshine.

I know

2007-09-11T14:21:00.000-05:00

I haven't posted anything in a long time. A lot has been going on, most of it not related directly to G. He's been so healthy and thriving lately! We had a series of appointments in the last couple weeks and things are good. It's kind of weird.

My mom has been sick, though, and today we found out why. She has acute myelogenous leukemia. Cancer. She starts chemo today.

It is so scary. She is my mom. She is 52. It is fortunately in the early stages, and it sounds like she has a good chance to fight it. She survived septicemia in 2003, and that has much lower odds. It's so hard to grasp, though, and I hope I'm strong enough to be there for her. She's been there so much for me.

Therapy

2007-08-14T12:21:00.000-05:00

I cleaned of the piano recently, and G has been loving it while in his mobile stander! What a great incentive I had on my hands the whole while. I think he plays quite well, really.

He hasn't been enjoying PT much lately. He gets frustrated very quickly, and last week he threw a tantrum for quite awhile. He also has a walker, but he only lasts a few minutes in that. He is really excited about the mobile stander now that's he's figured out he can chase his brother around. G thinks it's quite amusing to run into people or things.

G has PT today, which I have a feeling will go okay, but not great. He's cutting some teeth, and they must be very annoying to him! He is usually quite even-tempered, but he's been impatient a lot lately. Two, I say!

Burned Out

2007-08-09T15:45:00.000-05:00

I think it has something to do with being summer, having all the kids home, being busy, and starting a new business (selling jewelry), but I've just felt burned out about posting. I haven't even been keeping up on reading all that well. If I sit down to the computer and try to spend any time on here, I am being harrassed to do a million other things.

G has been progressing wonderfully. His vocabulary is expanding, especially in the last two days. The kid says his version of "Chocolate", which is "Choc." He points out his ears, eyes, nose, and names them, and his animal noises are spot on.

G now has a walker. He's not impressed with it much. He's had a mobile stander for awhile, and he recently really caught on to how to maneuver it. He goes and goes so much while in it, he gets red-faced and breaks a sweat. The walker, though, needs to be controlled by his legs, and this isn't an easy feat. Being two (almost), he wants to go fast, and he knows his arms can accomplish this. He will tolerate the walker for a short while, though, so we'll take what we can get.

He has also learned how to get on and off the couch. Originally, he thought he was quite clever coming down face first, but he's now decided maybe mom was right, and he should do it feet first. The thing is, he can go face-first and not get hurt, but the potential is really, really there.

Ten years for hubby and I tomorrow. :)

Obviously, I'm no professional photographer

2007-07-20T10:43:00.000-05:00

The pictures aren't in focus, but the kid is still cute. :)

What?

2007-07-18T13:00:00.001-05:00

I have plans, plans, plans to read and post and write, but my life. My life is so busy at the moment!! Eeeesh!

I forgot a PT appointment yesterday. It's been every Tuesday for almost two years. I have remembered to call and cancel during shunt revisions for pity's sake.

*sigh*

I hope things slow down, and I quit being so forgetful.

I think sleep would be helpful, too.

Someone else's words

2007-07-15T12:42:00.000-05:00

Today I read a message posted by someone on one of my email lists about life being like a big waiting room. Learning to wait is one of the hardest lessons as a little kid, but as an adult it's not a whole lot easier. Here I thought I had become a more patient individual, but I think I was wrong. I find myself going crazy somedays with this waiting game. I'm constantly questioning myself and sifting through what is paranoid and what is intuition. It's not so easy to tell. Intuition has been spot on in the past, but I'm starting to feel like I'm paranoid with our recent bout of stuff.

I feel like something isn't right. Tests are showing nothing is wrong. This is good, but why do I keep looking for something to be wrong? I don't want anything to be wrong. Or do I? I can't imagine why I would want something to be wrong, so I'm wondering if I'm just paranoid. Do I just ignore these feelings? Brush them aside? How does one cope with paranoia?

I don't want to become the parent who everyone stops listening to because they've cried wolf one too many times, but I don't want to be the person who ignores the obvious because they don't want to be perceived as overreactive. I've got myself in a quandary, don't I???

Anyway, a lot of this is due to just feeling deep down something is going on, but testing is showing nothing. I absolutely abhor the idea of putting him through unnecessary testing, so I've decided I've got to just let it go and believe and trust that if something IS going on, we'll catch it on time. G had his ophthalmologist appointment on Wednesday, and his optic nerve showed no change. We return in eight weeks to continue monitoring and making sure it has no change or gets better.

On another note, I'm a bit excited about progress in the equipment department. On Thursday, G and I went with his regular PT to see another physical therapist about his mobile stander. We were given the mobile stander because it was going to be thrown, but it just wasn't working. The other PT knew how to adjust it, and we now have a functioning stander. We talked about getting wheels and a walker, and it looks like it will be happening soon, hopefully. I'm hoping G is able to gain speed and mobility.

Terrific Twos

2007-07-06T13:20:00.000-05:00

It's obvious the child is entering that "Terrific" Two phase. It can be terrible for the parent, and tough for the child, but all in all it's a terrific phase. I mean, every day, despite much frustration, tantrums, irritation, it seems there is this energy, this desire to learn, to destroy, to shout, to exclaim. It's encouraging to see development and progress for mom and dad despite the ringing ears. As this photo demonstrates, the kid was not happy. It wasn't because he wanted to be out of the corn, he wanted to do it on his own, and he was furious I had pulled him in there. Once I put him on the ground, he crawled in and was as happy as could be.

G is definitely emerging as a personality. As a baby, he was this silent, watchful, peaceful buddha figure. He didn't use much energy to cry or complain, and he was a huge baby because of it. He is still very watchful, but he makes noise with the rest of 'em! I remember telling people who would often tell me what a fantastic, sweet baby he was, that I thought the twos would be challenging. I figured he was biding his time. And, it was painfully obvious to me that he was taking notes with how watchful he was!

Number Three was my most challenging in this phase, and I must admit, G isn't quite like that or even like my nephew. He doesn't always have the physical capabilities to get into stuff, climb counters, open fridge doors of fish in the toilet, but his personality is definitely that of a toddler entering that two-year-old phase. He expects, no demands, that I allow him these privileges and take him there right NOW! And the word NO to him is as if I've slapped him across the face and ripped his poor, wittle heart out

I love the challenge of this age because they want to learn so much. It's all about learning and discovering and figuring things out. There are days I can't keep up with it and get frustrated and act out like I'm two, but for the most part, I really don't mind the Twos.

With G, there is a different aspect that I find difficult to deal with. This would be the shunt. Again. I'm having to learn what his Two is like. I know what my other three kids were like, I know how they acted, but what is normal for him? What is excessively irritable? Where does one draw the line? What do you ignore and what do you pay attention to? It's a challenge, that's for sure, and I'm not sure I'm relishing it much. I feel on edge whenever he cries or screamz, especially if he sounds in pain. And of course, the smart kid has figured out if he cries, "Owie!" mommy is right there asking where it hurts. Boy, I'm going to have to work on that.

Overall, though, I'm enjoying the attitude from this kid. He's funny, smart, and ornery.

A little thing called a bath

2007-07-03T13:38:00.000-05:00

G hasn't had many baths in his lifetime. He's 21 months, and he had 21 casts off and on to correct his little feet. Many a sponge bath was had. He has had some baths, but he's been terrified of them, and I decided to not force it. Therefore, it's been awhile since he's had a bath. I've been having him wash his hands and splash and play in the sink a bit, and I have him watch the other kids bathe. He hasn't minded being splashed recently, so I decided it was time to give it a try again.

I put G in the bath chair in the tub with his brother a few nights ago, and at first he cried, but then I splashed a bit of water, and it tickled his fancy, I guess. He was happy and content to play, and he cried when I took him out.

I find this so exciting that he finally enjoys a bath. No more screaming and trembling from him and no more feeling like I'm torturing my kid.

Another thing he's been finding enjoyment in is Blue's Clues. None of my other kids have been suckered into a show like this. He will yell, "Blue clue!! Blue clue!!" while we are watching a show, and he's quite persistent about it. Today he signed "please." It's kind of cute, and it's very, very helpful for bedtime. Getting him ready for bed takes about a half hour, so it's been nice to not have him screaming as I dress him, change his diaper, put his braces on, and give him medications. I think it's taking less than a half hour because we're not engaged in a battle anymore. Thank you, Blue, Steve, and sometimes Joe.

What's worse than dirty underwear?

2007-06-26T09:48:00.000-05:00

The answer: dirty socks. I'm thinking of this because I'm packing. When G had his first shunt revision, hubby and I didn't pack anything when we went to the appointment. We live about two hours away from the hospital, so I'm not sure what we were thinking. G was admitted and had surgery that afternoon. It was a Monday, and we came home by Wednesday. I was able to survive the underwear, pants, shirt, but the socks were giving me heaves when I had to put them back on in the mornings. I shudder at the memory.

We've been through a few more unexpected surgeries since then, and I bring extra underwear, but I definitely overpack socks.

G has an appointment today for a CT scan. His behavior has changed, and we're thinking shunt. I hope I'm wrong.

The shadow of the shunt

2007-06-21T17:51:00.000-05:00

This morning was G's last dose of antibiotics. He has a fever. I debate, I call, and we go. He was on amoxicillin, so I wouldn't have been surprised if it hadn't done the trick for the UTI we were trying to get rid of. It looks like it's just a virus, though.

I said to the doctor that I felt so paranoid bringing him in for just a virus. His comment was, "You need to be paranoid with him." He meant this in a reassuring way, and I took it that way.

I still feel paranoid, though. G is four months post-op for his shunt, and he's still at risk for shunt infection. He cleared for strep throat (his throat was red), his urine sample looked clear, so we're going with the virus. Unless something grows in the cultures. His blood count was good, though (11, 000), so as I run through all these things I feel calmer.

I feel like, though, I live under a shadow. The shadow of the shunt. The questions, the concerns, the potential issues. They are always there. I'm always trying to rule them out. Will I be able to breathe easier someday?

Worry

2007-06-19T10:35:00.000-05:00

I've never been much of a worrier. I'm the laid-back mama who lets my kids play, who lets her kids develop at their pace. I always have a watchful eye, but I try not to smother.

Then along came G, and I've become that mother. The one you talk to who always thinks something is wrong with her child.

I see this about myself, and I don't know what to do. I don't particularly like to think I'm a worrywart or paranoid. I want to be calm and relaxed, but his recent history has warped my perspective.

What I'm most afraid of, though, is being dismissed by the medical community as THAT mother. So far, my record is pretty good in knowing when something was wrong. I'm always questioning myself, though. Is something wrong? Am I overreacting? Over and over I do this, and I try not to make a call unless I'm sure. Reading through some of the medical blogs only reinforces this doubt in myself. I don't want to be perceived as an overanxious parent caught up in having something wrong with her child. I don't want to be perceived as stupid or ignorant.

My latest concern has been tethered cord. I find myself looking for the signs, and I'm finding some. Every little thing that occurs, that is different, that "could" be something, is always, always about the shunt. G's been napping more and sleeping a long time. This could be attributed to a number of things. But there's this "but", and it is so hard to take things at face value. I hate losing that, I hate not being able to appreciate more sleep without that "maybe" surfacing. The one that I haven't spoken out loud because I KNOW it's silly is whether he's laughing too much. Seriously.

Do I seem officially over the top now on the worry factor? He giggles and giggles about something, and I honestly have been concerned that he's laughing too much. Worried that somehow his brain is being affected by pressure causing him to giggle incessantly. Now, honestly, why can't I just enjoy it? I do enjoy it, and I always end up laughing a long, but there's this cruel thought in the back of my head going, "I hope this is okay. I hope this doesn't mean anything serious."

Okay, maybe writing that out was a good thing. I'm giggling to myself now at how ludicrous it sounds.

It's so strange for me to worry this much. Worry isn't a good thing. It doesn't solve anything, and it only causes stress. And stress ain't no good. It gives me a big belly.

Musings on doctors

2007-06-18T15:27:00.000-05:00

I've been attempting to write a post for several days now, but with four kids at home I have CONSTANT interruptions and lose my train of thought. I compose coherent essays while going to sleep at night, but when I sit down to write them during time at the computer, things sound fragmented.

I have several posts mulling in my head about doctors, challenges, perceptions, accomplishments, you know, things like that.

I will attempt to post something today despite the interruptions that frequently occur.

For us, since G was born, we have encountered quite a few doctors. Even before G was born, I guess. Once we found out about the spina bifida, we were sent to a group of perinatologists, and they thought it was brilliant if you saw each and every one of them. I hated that. How do you get comfortable with who is attending your birth? You don't. You don't know who will be there, and they think if you meet each of their doctor's at least once, somehow they'll remember you at your birth. Or you'll be more comfortable since you met this doctor. Or something. It's beside the point, really. My intention for this isn't about that.

At each visit, I had a lot of questions, and I wrote them down in this small notebook I purchased. I referred to it as my Brain because it contained names, addresses, pertinent questions, important answers, and it did the work for me to remember everything I couldn't at that time. Once G was born, I continued using this notebook and bought a new one in January. It's been invaluable.

One of the main questions I had at this time was "What can I expect?" Initially, when we were given a diagnosis, it wasn't correct. It was believed he would die due to his brain malformation. When we saw the perinatologist after an agonizing ultrasound, he said, "Oh no, it's just spina bifida." We were given a pamphlet and some other reading material, and we went home with our minds swirling. I read the handouts, I read stories online, and heard some stories from others about someone they knew with spina bifida.

What I wanted to know, though, what can I expect from this baby, my baby? What will he be able to do? How long will he live? Will he be able to walk? What about his bladder and bowels? What about the shunt? Will he be brain-damaged? How much? Will I be able to breastfeed? What is he going to be like? Will he look funny? Scary? I mostly focused on the birth plan after awhile because contemplating these questions and the possible answers were tough to deal with.

I remember we spoke to the neonatologist before G was born, and the answers he gave were vague and didn't really answer much. Basically, it came down to each baby with spina bifida is individual. The severity is different for each one. My baby's lesion was lumbar 4ish, and it was probable he'd walk, but it wasn't promised. He could have severe hydro and be mentally handicapped, or he could not have hydro at all. The range is wide for spina bifida babies.

It was tough to accept that we wouldn't have definite answers, but I decided I had to. After he was born, the doctors we've seen, the neurosurgeon, urologist, orthopedic, haven't given us false hope. They haven't given us devastation either. They've presented us with information and caring, of which I'm much appreciative. They haven't once said, "Oh, he won't be able to do this or do that." or "He'll have nothing wrong! He'll be able to walk!" They've told us clearly, They Don't Know.

In some ways, it was hard to accept this answer of I Don't Know, but as time has gone on, it's been okay. They were right. They don't know what my son will or won't be able to do. They have an idea, I'm sure, but as one told us, he didn't offer that kind of speculation anymore because he's been proven wrong more than once. I appreciate that. There's the knowledge of what he can potentially do/cannot do in regards to his lesion level, but nobody's stuck him in that box.

I feel that we've had very positive experiences with G's doctors so far, and I'm very thankful. This isn't to say we haven't had negative experiences because we have, but his main team has been excellent.

Comments

2007-06-16T23:41:00.000-05:00

It's been very hot and muggy here recently. I thrive in it, but G is on medication that inhibits his ability to sweat and puts him in danger of overheating, so to speak. He flushes up even when it's not this hot.

On Thursday, my mom, sister, nephew, G and I went to town. We ended up going to a few garage sales, but sis and I didn't feel like taking the toddlers in and out of their carseats, so we chatted in the car. Afterward, we went to a bakery to get cookies (can I say YUMMY?? I'm all about making my own, but these were delicious), and as we walk in the clerk commented on my G's "sunburn." I didn't correct him that he was flushed, but he went on about it a little.

We ordered our cookies, and he brought it up again, saying something about keeping little ones out of the sun. I made a comment about him being flushed by the heat, but I didn't feel like an explanation was necessary at this point. While we were paying and saying goodbye, he said, "Keep the little one out of the sun!"

I finally said, "He doesn't have sunburn. He's on medication that causes him to flush."

"Oh."

I'm not sure what's the correct thing to do in these circumstances. Sometimes I feel like I overshare and sometimes I don't feel like giving all the information. The clerk wasn't rude, and I appreciate his concern.

Not finding time

2007-06-14T14:59:00.000-05:00

Well, it is summer, but I think it'll slow down a bit after this week. The kids have been going to Bible school near my parent's, so we've been hanging out there. It's been nice, but I feel like I'm going, going, going.

G had an ophthalmologist appointment Thursday, and of course, it came with drama. His optic nerve was swollen, and we had to head over to the neurosurgeon for a CT scan and consult. We'll be going back in a few weeks to see if it's resolved. It's possible it is just that way, but it's also possible it's indicating pressure. My gut is telling me he's okay shunt-wise. A few weeks ago, I didn't feel that way, though, and I wonder if he had a partial blockage that flushed out.

The shunt is such a "thing" all the time. It sounds like it can be such a non-issue for some people. Not us, I guess!

He's not Spina Bifida

2007-06-04T15:57:00.000-05:00

In one of my groups, we had a new parent join, and another parent gave her the advice that this isn't spina bifida you are expecting, it's a baby. She told her to enjoy the pregnancy and focus on the fact she has a baby coming.

I remember receiving that advice myself not too long ago. Well, almost two years ago! At the time, I yelled at the monitor, "HOW???", but it was the best piece of advice I received. At first, I was consumed with finding out information, uncertainties, concerns, all that good stuff when you get a diagnosis such as it's "just spina bifida."

But then it shifted. I decided to enjoy the pregnancy, I decided to embrace the baby, and come what may. Sure, each doctor's appointment brought issues to the forefront, but I resolved to have my moment and move forward.

I did have a good pregnancy. I was pregnant in the summer, he wasn't due until the end of September, and I loved it. I loved the clothes I was able to wear (sooooooo cute), I loved that I wasn't itchy (winter pregnancy gave me dry skin), and despite being diagnosed with gestational diabetes, I felt great.

When we were given the diagnosis that he had spina bifida at around 24-25 weeks, I hadn't felt him move much. He started going crazy then. At first, I was upset. It was bittersweet, but it eventually became reassuring.

When people would ask the normal pregnancy questions, it was difficult to not answer, "My baby has spina bifida." There was this sense of that was what he was, if that makes sense. He became different with that diagnosis, and I had to work past it. Even when he was a newborn, I still associated him with spina bifida. He's not spina bifida, though, he's a baby, a toddler, a person. I think he'll get this tag a lot as he gets older. He'll be "that kid with spina bifida", but to his mother, he'll be her son.

Changes

2007-06-02T23:21:00.000-05:00

When G was born, it was hard to imagine what his feet would look like. I knew he'd have clubfeet before the ultrasound. When I found out he did have clubfeet amidst the other issues, it was almost reassuring. It was something I was familiar with. Our oldest had been born with a clubfoot, and we'd been there, done that.

At birth, though, the sight of his feet and legs shocked me. He didn't have "just" clubfeet, and it was very apparent. I remember when my daughter was born, and I couldn't imagine how they could fix her foot to be straight. It happened (quite nicely, I might add), and I naively thought it would be just as "easy" for G. When he was lying in the NICU, and his little legs lay there, I had the same thoughts, the ones I wasn't expecting to have because, hey, I've already done this! How would they possible straighten and appear "normal"??

It did take a lot of casts (21), but his feet really do look good. He's had tenotomies, but he hasn't had to have major surgery on them. Perhaps it's in the future, but for now, they are straight and beautiful. It is such a small victory avoiding that one surgery. There was a time where I gave up and felt "doomed" to have the surgery. I remember thinking, "What's one more surgery?", and I can't believe I ever thought that, but I did.

That feeling of isolation

2007-05-31T12:01:00.001-05:00

Sometimes, it just hits you, that feeling that no one listens or understands. While I know that's not true, sometimes it feels like it. It's when it's the people you think are closest to you, seem the most distant.

Yesterday, I had a conversation with my sister, and I exited the conversation feeling so slighted. During the hospital stays in January and February I felt very alone. I was two hours away from everybody, and their lives went on while I cared for a crying, in pain baby who endured more pokes and stabs than I would have been able to. It was hard.

My sister, I thought, had some insight into that. We've discussed it, I've tried to convey some of the stuff that went on and how I felt. I got off the phone yesterday feeling like I've never been heard. As if I've been talking to myself.

It's not all about me and how I feel. She and I have conversations about her and her frustrations, feelings, etc.

Yesterday, though, she was talking about her youngest and being concerned he might have adenoid problems. She said she couldn't put him through a surgery for his tonsils because she did that with her oldest, and it was so hard. I responded that my view on surgery is a bit skewed (I certainly don't advocate surgery unless it is needed, but the Big Dealness of it hasn't lessened exactly, but certain surgeries seem like bigger deals than others, if that makes sense), and that's all the further I got. She responded, "Just IMAGINE seeing your baby in pain! Imagine yourself having the sorest throat ever and imagine seeing your baby go through that."

I could not even respond to that. It's not like she's just some person of the street who heard our story for the first time and perhaps forgot some of the details. It's not like she's even an acquaintance who knows us and of our story. She's my SISTER. I talk to her almost every day.

Can I possibly imagine, can I, what it's like to see my baby go through pain? Can I? He had four neurosurgeries in the span of one month, and my sense of normal is a bit skewed. I held my poor little baby down for I.V. lines to be placed, for blood to be drawn, for shunt taps to be done, and I watched him go off to surgery after being informed of all the risks time after time.

Having tonsils removed is scary. I don't want my nephews to go through that either, but if they have to, they have to, right? I tend to be pragmatic about our situation and not fly into a tither every time he's had surgery, so I'm not going to be overwhelmingly dramatic at the thought of a "potential" surgery that may or may not occur. It doesn't mean I don't care, it doesn't mean it isn't a big deal, but when your son's brain has been tampered with as much as mine has your perception tends to be a bit different.

I wasn't trying to minimalize her situation, and honestly, I didn't say a whole lot. I pretty much kept my mouth shut other than to say as far as surgeries go, her older son's did go really well, with no complications, and that if she did have to go through it again, she would know what to expect.

I'm not sure exactly why she thinks I can't imagine what it would be like to see my child recover from surgery. Am I being overly sensitive or was she insensitive?

*sigh* It's just one of those days. I'll move on and get over it.

Getting around

2007-05-25T14:52:00.000-05:00

This isn't his most efficient way of getting places, but he likes to use it when he welcomes daddy home or he just has a short distance to go. Those little power arms are so wonderful to see again. After his surgeries in January and February, his arms looked so frail.

I also am so happy with his feet. We've gone through a lot of casting for those feet, and I'm so pleased they are looking so good. When he came out of his casts after all his shunt surgeries, his legs looked so limp and his feet so floppy. They seemed to want to immediately turn back in. Once he regained his strength and then starting bearing some weight, I've noticed a big difference.

I'll be so pleased and happy if he walks, but if he doesn't I don't think I'll be disappointed. One doctor made the comment that if you can't walk, you can still run a boardroom, and that's really stuck with me. I'll do my best to support G on his journey. If he walks, I will be thrilled. If he wheels, I'll be thrilled.

So many people put such an emphasis on his walking, and it's kind of weird to me that it's such a big deal to them. I've said many times the likelihood that he'll probably do both walking/wheeling is very high, but they are so dismissive of the wheeling aspect. I don't think they understand how weak his legs are and how much effort he has to put into using them.

I really think he probably will walk. And that's a great thing. I think, though, that he'll also use a wheelchair. That doesn't make me faithless. It doesn't make me a pessimist. It doesn't even make me a realist. I'm not accepting a negative reality because, really, what's so wrong with him having to use a wheelchair? I'll encourage the kid as much as I can. But I sense, I feel, this judgment when I say he'll probably do both. As if I'm somehow giving him limitations. I honestly believe he'll be limited if my focus is on just getting him to walk.

Two years ago

2007-05-24T08:45:00.000-05:00

Two years ago I was pregnant with G. I had seen my midwife once as I was planning a homebirth, but my ob/gyn I normally saw wouldn't see me. I was very sick at 11-13 weeks. I remember calling and asking to be seen, and they said they couldn't see me for over a month. I knew at that moment I wouldn't be dealing with them.

Being I was going to have a homebirth, I wasn't going to have an ultrasound unless medically indicated. This was going to be a hands-off kind of birth. I felt very strongly that I needed to have an u/s, though, because I felt like something was not right, and I talked to my husband's cousin who is an u/s tech. She agreed to do the u/s, but it wouldn't be an official one. I was okay with that.

I remember being late for the appointment. "Marilyn" was waiting for me at the entrance of the hospital (a very small, rural hospital), and we went back. She asked me if it was okay if someone observed, and I said that was fine. She did the u/s, showing the other girl, and explaining things. She didn't take very long, though, and she kind of rushed through it, I thought. Afterward, as we were talking in the parking lot and saying goodbye, Marilyn said she had to mention something.

I felt this sense of, "Okay, here it comes, I KNEW it." She told me the ventricles were enlarged. Ventricles? What was she talking about? I noted the words in my head as she continued talking. I was around 19-20 weeks at the time, and she said that sometimes they resolve in a couple of weeks. Her recommendation was to have an official ultrasound in a couple of weeks by a different tech and read by the radiologist. She told me not to worry, but she definitely recommended I be seen again. I thanked her and told her I appreciated her taking the time to do this for me.

At home, I researched on the internet. At first, I didn't type in ventricles, but vesicles. When I did type in ventricles and got more information as to what it might entail, I prayed. Things mentioned were hydrocephalus, spina bifida, other problems that resulted in death, and many even mentioned it could signify nothing.

I found a different doctor, since my ob/gyn wasn't receptive to working with me. I was still clinging to the hope that I would be having a homebirth. I met with Dr. A, and I really, really liked her. She was perfect, and if I ended up having to deliver at the hospital, the facilities were acceptable and comfortable. She also felt the enlarged ventricles could resolve on their own, and we scheduled an ultrasound that would be about three weeks from the first one. Dr. A also mentioned she'd be on vacation at that time, but she wanted to know if it would be alright if I didn't get the results until later. I was fine with that. I left that day, feeling calm and reassured. I was leaving my fears in God's hands, and if something was wrong, there was nothing that I could do about it. I didn't stress or worry those two weeks. I really didn't. I did my initial homework, but I let all of it go. I trusted in God, but I knew, I just knew, that something was not right.

It's weird to think that it was two years ago. It truly seems like it was a few months ago we were dealing with the knowledge. I don't remember the date of that u/s, but I remember it was in May. I do remember when we got the results of the second u/s. That was June 15.

Shoes

2007-05-23T09:21:00.000-05:00

There were so many things I looked forward to with my last baby. I couldn't wait to buy him/her baby shoes. With my older kids I hadn't heard about Robeez or Bobux, and I couldn't wait to purchase some. I looked forward to enjoying and relishing so many different things. Homebirth, slings, being that ultra-relaxed fourth time mom and enjoying every minute with my last baby.

I don't mourn often the things that changed when we received his diagnosis, but the shoes are the one that cuts the most for some reason. My nephew was born the same time as G, and he has some of the cutest shoes ever. I missed out on shoes with my oldest, who also had clubfoot. At least, when she turned a year, her shoes could go straight on her feet. With G, we're always having to figure something out that will go over the AFOs. The robeez did fit at one point, but they don't anymore.

It's one of those things. Just one of those tiny losses that cut deeper than they should.

My sister has helped find some cool footwear for my kid, and I love them (and her), but I would so love to just buy the shoes I want to.

So many people comment on the cuteness of the AFOs, but I have a hard time with the appearance sometimes. We've gotten the buses and trucks, or whatever the design is, but they mostly seem awkward and hot-looking to me. I don't mind them in the winter, but in the summer I want to leave them off and let his toes be bare. He needs the AFOs for stability and maintaining correction for his clubfeet. I don't want to lose that correction (we went through 21 casts, two tenotomies, and 7 hour trips one way for the last five), and I don't want him to fracture his leg again. So, they aren't optional.

I miss bare toes, I miss cute socks, I miss adorable shoes. It's just one of the little things that seems big sometimes.

Playing

2007-05-21T10:39:00.000-05:00

This weekend we went to a park for a party, and G and siblings had a blast playing. G was determined to crawl up the steps over and over, and he did it. I was so proud and amazed at the strength his upper body has. He even went down the slide with my brother's help and me at he end. The first time he looked scared, but after that, it was belly laughs.

Other kids were there, and about four to five of them were his age, and it is always a little jolting to see where they're at as opposed to where he's at. It's impossible to not notice.

He's my incredible G, and he is who he is. I love him, I support him, I encourage him, I embrace him, I accept him, and I am truly blessed.

Quiet

2007-05-17T09:30:00.000-05:00

Things have been quiet around here. I find myself worrying in the too quietness of it all! We've had doctor appointment after doctor appointment week after week, and May has been so quiet. G had his orthopedic appointment on the 2nd, and that's been it this month. I don't feel safe, I feel something looming in the future, and I hate that feeling. I want to just appreciate things for what they are rather than feeling watchful for every little thing. How does one work past that? I feel paranoid, and I don't care much for feeling that way.

The shunt has been THE issue this year, and I am having a hard time relaxing about it. Is it even possible for it to go an entire year without malfunctioning?? I know it's not only possible, but it happens for many people on a regular basis. Little things have been bugging me, though. A little head growth, bulging soft spot (intermittent), some "different" breathing that's hard to explain but there, a large bruise on his forehead from smacking it on the floor, veins seem darker (in my head, though?), and the other night he cried "owie" off and on for about an hour. He slept fine last night, though. This is why I feel paranoid. They are such little, subtle signs, probably easily explained away. I've been obsessively measuring his head again, and when I get like this, when this feeling doesn't go away, I hate to say it, but I haven't been wrong yet. The intuition with this kid is so strong!! I think he's teething to cloud the issue.

On a positive note, though, this kid is doing some exceptional things lately. Progress has been phenomonal, I think, and his PT has been happy with what he's doing. It's amazing when something clicks. He's been "dancing", and it is just adorable. I HAVE to capture it. He's also been becoming much more verbal and entertaining us with babble stories.

I have to let go of that worry. Even writing that, in my head, I hear, "but this...", "but that...", "you can't..." Worry doesn't want to let me go.

One day at a time

2007-05-10T09:04:00.000-05:00

When G was born my sisters both had babies. My niece turned two yesterday, and my nephew is 11 days older than G. I also have two cousins who had babies, one in July before G was born and one in January after he was born.

There's a large group of kids the same age. And here's my little boy. Everybody says how good he is doing and how good he looks, and it's true. He's pretty amazing.

But what he's starting to do, they've all been doing for a long time. What is so wonderful to me, is these parents. They share in my excitement of his achievements. He's 19 months old, and he's just learned to stand. All of their toddlers are running around, but they are SO excited to see him achieve something that came with ease to their little ones. That means a lot to me.

I'm thankful he's my last baby rather than my first. I find I'm pretty relaxed, and I'm actually happy he's kinda staying a "baby". He's definitely a toddler in attitude, but he doesn't get into near as much stuff as my nephew. LOL But it also saddens me. That little ache in my heart when I see my nephew trying to get G to stand up. Or seeing these other little toddlers running while my toddler looks longingly after them. He can't crawl fast enough to keep up. My heart hurts when his little fingers get stepped on or he hurts his hand on something sharp on the ground.

Recently, a few other people I know have had babies that are very early (around 25 weeks gestation). I feel so deeply for them. For the struggles they are facing, for the fears they are facing, for the realities they are facing, for the future they are worrying about, and for all those things that hit you when you bring a child into the world. It's hard enough worrying about a "normal" child, but when you have one with challenges you don't know what to think. You hear "Take one day at a time..." an awful lot, and it is truly one of the best pieces of advice to recieve, but to actually put into practice... Easier said than done.

Before G was born, and we found out he had spina bifida, hydrocephalus, bilateral clubfeet, and he would have bowel/bladder issues, the future seemed to collapse. It was impossible to not feel like my entire future was changed. It was hard to not think about those changes and how my life would forever be affected. It was a Big Deal. I thought and felt ways I never imagined I'd feel. I wished things that now make me sad. But it all had to be done. It was part of a process. It was grief over losing my future that I envisioned. It was grief as expectations were pronounced dead. It was grief as dreams were lost. And then that process shifted. Perspective changed. Acceptance, dealing with it, joy returned.

One day at a time. It is valuable advice. Sometimes, though, it's impossible to do. Sometimes it's the only thing that'll get you from one day to the next.

I do now take one day at a time. I worry about G's future now and then, but it's not an overwhelming worry. When we're going through a crisis, the only way I can survive without dissolving into a helpless mass of tears is to resolutely take it One Day at a Time. Sometimes it is one hour at a time. If I look too far ahead, if I allow those fears and worries to creep in, I become overwhelmed and incapable of facing the situation.

As he's gotten older, as we've faced some major, scary surgeries, and made it through, the future doesn't seem so frightening. I made it through some heavy stuff, and I can do it again.

Shunt revisions

2007-04-30T16:04:00.000-05:00

Tomorrow it will be a year ago that G had his second shunt revision. I've been working out in the garden the last couple days, and I was wondering why it kept popping into my thoughts. A year ago I was feeling so hopeful with promise and thoughts of getting gardening done. Life felt good. And concerns started creeping in. I ended up going in on a Friday with him and spending the weekend. His revision was on Monday, and we took him home on Wednesday. It seems so weird that it was only a year ago.

Thankfully, this year I don't feel as if anything shunt related is going on. Well, I still worry, and I check the signs, but he seems okay. His burr hole "soft spot" has been fuller but not tense.

It took a lot out of me, and I ended up not doing any gardening when I got home. I think I did a few annuals around the yard, but I didn't do anything special.

There is such a love/hate relationship with that thing. I love it because it's the reason he's still alive, but I hate it because of its frailty. Not even frailty really, but it is flawed. Shunts are as dependent on the person in some sense as the person is on them. G has had 7 operations on his brain, and he's not even two years old. It really freaks me out sometimes!! Most of the time, though, we go on our merry way. :) His shunt failures/malfunctions have occured due to tissue blockage and the gel incident.

Well, I am going to try and not worry about the shunt this week. It'll probably me more on my mind, though, I think.

Gone and home again

2007-04-20T15:07:00.000-05:00

One of the things about a hospital stay is life goes on for other people, but it halts and shifts for me. I come home, my house is still the way I left it, my kids are missing me, and life resumes, but I'm behind. I've missed something. I feel so alienated after a hospital stay.

G was in the hospital Monday and Tuesday night. He is still not himself, and today I'm getting worried. Monday he had these diarrhea diapers that were just water, and he had about 6 of them on the way home. I was cloth diapering, and it went surprisingly well and smoothly, but I can't say it was the most ideal circumstances in a five hour car trip with four kids. Fortunately, they didn't stink, the diapers that is. We got home, and he had two more diapers full, and then he vomited all over me. Oh joy. So, then I went into "I think we have to call about this" mode, cleaned up the floor, took my clothes off, put on some fresh clothes, helped get the kids ready for bed, as G laid on the couch without moving. He looked lifeless, and I was really worried he was dehydrating fast.

After we got the other three kids to bed, hubby and I took G to our the ER. MIL stayed with the sleeping beauties. Long story short, G got an IV, some blood draws, and an overnight stay. The next day, he seemed to be doing better until the afternoon, and then he became lethargic, hard to waken, and he had a low-grade fever. We stayed another night, with another dose of antibiotics, and Wednesday we took him to Children's for a CT and to see the neurosurgeon. It looked good, so we left very relieved.

The diarrhea has continued, though, and yesterday and today, he just passes out. Today, he was sitting in the high chair, and fell asleep. I know this happens with kids after a long day, but it isn't sitting right with me. So, worry, worry. And, OF COURSE, it's the weekend!! It's always the weekend. I remember the days when I used to think TGIF, and now I'm praying we make it through the weekend.

Coming out of the hospital, and getting back to Life is just a surreal experience.

What exactly?

2007-04-13T10:10:00.000-05:00

I've had a struggle figuring out what I want this blog to be about. I have so many "things" to write about, so then I choose not to write about them at all because I don't know where to start. I don't think I'm a great writer, but I like to write.

So, anyway, as I'm not getting off to a great start here trying to say what I want to say, I'm going to try and be coherent.

I've been reading blogs recently of micropreemies, kids with cerebral palsy, and other things. I have a caringbridge page for my son with spina bifida, and at first, I wasn't sure that was what I wanted to write about here. I think I present a "nice" version and more of an update thing over there, and I think I could write more here about the reality of dealing with spina bifida and the stuff that goes with it. I also have a livejournal that I write about stuff with him frequently, but I'm thinking now, this would be a good forum to write an account of the stuff we're dealing with.

I also have three other kids, and I might be sharing things about them here, also. This is their story, also.

So, I dunno. I don't know if I'm interesting enough to do this, and I feel a little awkward about baring my soul. We'll see where this goes, I guess.

better

2007-04-11T13:12:00.000-05:00

Things have been settling down. No neurological stuff seems to be presenting itself recently, thank goodness. In fact, he seems to be thriving, growing and learning. January and February were so incredibly stressful, I'm not sure what to think about them. March and April have been busy but mundane.

A Summary of 2007 (so far)

2007-02-21T12:03:00.000-06:00

It has been an incredibly insane year. It feels like is should be half over.

December 29, 2006 is pertinent enough to add to this summary, so I will. We headed to Iowa to cast Grant's clubfeet, and we took all the kids to spend a little time as a family. The oldest ended up going to the ER that Friday night because she sprained her ankle. We thought it was broken, and so did they until the x-rays showed no broken bones. Whew. But stressful! The rest of the weekend was great.

January 5, 2007 was another trip to Iowa for change of casts. We are seeing great progress. I'm a bit worried about Grant's behavior, though, and I've put in a call to the neurosurgeon. Wait and see.

January 12, 2007 was my mother's birthday. She was heading out of town, and we were supposed to head back to Iowa for a cast change. Change of plans due to a CT scan showing an odd, "cystic" area along his shunt tract. Grant had a shunt revision that revealed his ventricular catheter was completely blocked. For some reason, though, the fluid didn't accumulate in the ventricles but along the shunt tract, causing many comments on the unusual presentation of malfunction. We skipped Iowa. We headed home on the 14th.

I was very pissed at the nurse practitioner's dismissal of my concerns when I called on the 10th (her instincts told HER that his symptoms weren't shunt related), but it sucked to be validated, too.

January 19, 2007 we were back in Iowa for a cast change. We were concerned with the appearance with Grant's shunt area. It was very swollen, we had returned to have it looked at on the Tuesday before we headed to Iowa. The CT looked good, but the ortho liked the appearance of the swelling about as much as we did.

Then I got sick, and I was really sick. I was still worried about Grant's incision site being so swollen, and when I went to the doctor, I had her look at him, too. Wait and see.

January 26, 2007 we were in Iowa again. This time for tenotomies that were performed in the office. He had casts put on, and we were to have a three week break from travel.

I was still worried about the appearance of his incision area, and it seemed like it was becoming bigger. Phone calls made. Appoinment set for January 31.

January 29, 2007 was my father-in-law's birthday. The big 50! At 3 am in the morning, though, hubby and I were headed to the ER in Minnesota. Grant's incision started leaking, and he had vomited earlier.

January 30, 2007 was my oldest's 8th birthday. I was devastated to be gone. Grant had a shunt revision, and his ventricular catheter was blocked due to the gel that had been used to seal his dura expanding. It's something they've never had happen before. Lucky Grant. :( They'll no longer use that gel on him.

January 31, 2007 we thought we were leaving, but Grant vomited and started having severe diarrhea. We decided to stay and that night his incision began leaking again. The NS came in, reinforced the stitches (heartbreaking cries), and figured we'd probably be taking the shunt out. There was no leakage in the morning, though, and we went home February 2.

February 4, 2007 we returned to the ER. On Saturday morning, a day after being released, I noticed some leaking, put a call in, and was told to try and wait it out until Monday. No such luck. It started leaking a bunch on Sunday, so we headed to the ER. It was hubby's Grandpa's birthday and the Super Bowl. We didn't get to see Grandpa, but the Superbowl was on in the ER room. Yea. Way too many pokes for my baby. :(

February 5, 2007 was a shunt replacement. The old shunt valve and catheters were removed, and a new system was placed in a different spot. Surgery was longer, and recovery was really, really rough. There was an abdominal incision to go along with the head incisions, and Grant seemed so sore and uncomfortable. We went home on the 8th.

February 14, 2007 ended up being a pretty sucky Valentine's day. We headed to the ER on the 13th because of symptoms and leaking he started having over the weekend. His new shunt already needed a new revision. We came home on the 16th. His casts were taken off the 15th. We were scheduled to have that done on the 16th, but we couldn't make the trip to Iowa.

We're home now, and I hope we have no more revisions/replacements, etc. He has a few things going on, but I'll detail those later.

Compliments and Memories

2006-12-17T00:09:00.000-06:00

I've been absent here, haven't I? I've been writing in my livejournal recently about the everyday stuff.

Today, I received a compliment from my dad in his roundabout way. I sat next to him at a potluck, and he made a comment about sending me a note, cooking like mom, and something about cooking like his mom. I was confused what he was talking about, and I asked what I had cooked. He said I had sent over some cookies, and they tasted just like his mother's.

Wow. What a compliment. My dad doesn't dish out compliments. I had made oatmeal cookies with raisins, cranberries, walnuts, chocolate chips, and some m&m's. I thought they were yummy (my kids didn't), but I sent a bunch over to mom and dad's when they watched the kids. Apparently, dad like them. :)

I miss my grandmas so much. They were such strong, beautiful, amazing, sweet women, and I miss them so much. This has been one of the toughest years of my life, and I miss their presence, their love, their prayer, their hugs. I dream of both of them often. I have dreams of them holding my babies. I dream of their hugs. Their presence.

Life is an emotional upheaval right now, and I feel like I'm barely holding together. Today was a Christmas get together with hubby's side of the family, and I really, really didn't want to go. I just wanted to stay home. I did go, I did enjoy myself, but I didn't, also. Everybody seems to be so distant, and I don't know, just not friendly like they used to be. I feel like people don't talk to me because they don't know what to say to me anymore. I feel like I'm unapproachable, and I hate it. I remember after G was born this doctor said many people would pull away, and we'd have to be the ones to reach out. I think I'm seeing it now. Instead of reaching out, though, I'm feeling myself drawing inward. I know it, I see it, I don't feel like changing it. Maybe this is how depression feels.

I've been asking myself that question lately. Am I depressed or am I conserving? By conserving, I mean conserving my energy for the important things, such as my family. I feed my kids, dress them, send them to school with the necessary notes and papers, I dress myself, feed myself sometimes, keep appointments and try to be on time. My house is a terrible mess, and I can't consistently keep up on anything. I am behind on thank-yous, I don't have any holiday cards ready to send out, I am behind on so many things I'm not going to bother listing them, but I feel like I have all I can to do the important things.

Does this fall under depression? I am overwhelmed. I don't sit around and cry, but I do sit around and read blogs. A lot. I don't wash the dishes, I don't wash the table, and I don't sweep the floor, until it's absolutely necessary. And I don't care. But I do, as there is a bit of self-loathing that it's not done. But I don't care enough to do it.

I am also gaining weight, and I'm terribly out of shape. I used to exercise, and everyday I plan to start, and every night I go to bed having done nothing.

Oh, I don't know. I'm so tired. My body is exhausted. My mind is exhausted.

So Much For Frequent Posting

2006-11-26T15:20:00.000-06:00

Yeah, that didn't happen.

Anyway, we went to Iowa, lost our new palm pilot (it was found and returned!), I lost my wedding ring and watch somewhere in the house, and I washed and dried my wallet with over 500 dollars in it after we returned. Thanksgiving went well despite the snags in the preparation. I got tons of stuff done and ready to go, and then I was told I wasn't needed. ARgh! I'd go into why I was so upset, but I don't have time. Baby will be going back into casts to correct his clubfeet...again.

I feel frazzled. Apparently, it's going to start snowing tomorrow, and I'm not looking forward to driving in it. I have a mountain of laundry to tackle, floors to sweep, but my fab hubby is making supper. He's the absolute bestest.

Packed!

2006-11-16T09:37:00.000-06:00

I did it! I packed my and the kids' bags yesterday. I was on the ball. I also was very motivated and put alllll of hubby's clothes away. I hung stuff in the closet, and I put them in a specific order. I also put the rest of his stuff in his dresser, so it was funny when he went to pack and was looking for stuff.

Today is another gray day. November days are so dreary sometimes. It's been a beautiful November, though, so I'm not going to complain too much.

Yesterday, the cows were out. I heard them bellering, and I could tell something was up. I looked out the upstairs window, and sure enough, they were munching on my lawn. I called FIL, and the kids and I watched him round them up with his four-wheeler.

Well, off I go to prepare the rest of my stuff for this trip. I've got plenty yet to accomplish.

Finding Motivation

2006-11-15T09:10:00.000-06:00

In highschool, I was a major procrastinator. I always managed to get my work done and in on time, but I always put it off to the last possible minute. Here I am, doing this kind of behavior again. I have many, and I mean many, things to accomplish before we head off on a trip to rural IA. I have to pack for a three day trip, and I have to pack for three kids, a baby, and me. Hubby does his own packing. :)

It must be warmer outside, but I haven't left my house to find out. The snow is melting, though. It's almost gone. The sky is still gray, and it looks like it's misty.

So, why I am sitting on here reading blogs and posting? Packing, washing laundry and dishes, making beds, all that good stuff, just seems so daunting. I think the caffeine I ingested this morning is starting to kick in. I don't feel dead tired anyway.

This Blog

2006-11-14T13:28:00.000-06:00

I'm trying to decide what I want this blog to be about. I have a livejournal account, and I find I write there most often.

What do I write about that is relevant to my blog's title or that would be interesting? I thought maybe I'd post about the weather and about the mundane happenings of my day. This is my life.

We'll see what happens, I guess!

Today, in my part of the world, there is some snow on the ground, and the wind is blowing. The sky is gray, and the fields are golden and browns with patches of snow. My rose bush is beastly huge, since I didn't prune it at the end of the summer, and it has some dead leaves and rose hips lingering on its branches. My yard is in a very sorry state, and I'm shamed to think of my previous goals for gardening.

I'm of the mind, in regards to gardening, that it's something you do if you're rich or old. Of which, I'm neither. I want my money to go other places, so my garden is sorely neglected. My gorgeous climbing rose doesn't seem to care, and my irises haven't protested too much either.

I don't have a lot of time I'm willing to dedicate to gardening at this point. I have four small children, one with special needs, and my time is limited. The kids are now getting old enough, I think, where they are going to be a lot more helpful and a lot less in the way. I tried when my first two were younger, and I quit after my third because I lost the joy of the relaxation of working in the garden.

I'm thinking of having the older two kids join 4-H and perhaps we'll all gain a love and interest in horticulture.

It is time for me to get ready for the baby's physical therapy. I was a slacker in putting him in his vertical stander this past week.

Bummer!

2006-11-10T08:20:00.000-06:00

I forgot to post yesterday. Oh well. I was going to try and post every day to see if I had anything interesting to talk about.

I think my baby is losing weight. He has become incredibly active with crawling from one end of the house to the other. I think he's burning too many calories, though, because you can feel his ribs and he feels lighter weight.

He can pull to his knees on the bottom step, and he's pulled to standing several times! He crawls commando style so fast he glides across the floor, and he's able to crawl on his hands and knees, also.

He's just too cute. :)

Yelling

2006-11-08T21:03:00.000-06:00

Why is it so hard to not yell? I mean, come on. Yell I did. Ugh. I feel bad now, but at the time I was just so upset! Poor kids. :( I apologized for yelling the way I did, but I still feel badly.

My 3 yo cries a lot. I'm not exaggerating when I say that he cries a LOT. It is mentally and physically exhausting to me. This morning, before the hour of 8 am, he cried for about 45 minutes. Everything I did was WRONG and would set him off. It would be okay, if this was an unusual occurence, but it is just about every morning, and I'm NOT a morning person. I put him outside and FIVE times today, so he could scream outside how much he hated me, so he wouldn't wake his sleeping brother. I'm so SICK of being told I'm the worst mother in the world. I'm so SICK of being told he hates me.

His oldest sibling isn't much better. She cries a lot, too. She contributed mucho crying tonight. AND ALL I DID WAS GO OUT FOR DINNER FOR A COUPLE HOURS WITH SOME FRIENDS, AND I PAY AND PAY AND PAY!!!!!!!!!! I really feel like my kids DO hate me sometimes.

The thing is it wasn't that bad of a day. I accomplished things, I played a little, I laughed, and the weather was beautiful. For the most part, it was a very good day, but the incessent crying sucked a lot of joy out of it. Me yelling only clinched it. *sigh*

Woo hoo!

2006-11-07T13:37:00.000-06:00

I'm going out tonight with some friends!! I can't wait to sit and chat about what's been going on in our lives. This has been a looooong weekend, and I could use the time away from the kids, methinks. Some adult conversation is in order.

I'm wasting way too much time on here. I need to get dressed in presentable clothes, makeup on, and be ready before Mister G's PT is here at 3:30. I have to leave as soon as PT is done, and I should probably wash the dishes, start some supper and clean off the table. Oh, and find some pjs for the kids would be helpful, I'm sure.

Off I go!

Domesticated!

2006-11-06T17:48:00.000-06:00

Well, I actually accomplished a bit today. I made cookies, I made supper, and I got somewhat caught up on laundry. It's still a mess, but I'm feeling accomplished. Woohoo! Gotta go and eat that supper...

A bit of yardwork...

2006-11-05T19:48:00.000-06:00

The yard was in huge disarray, so today the kids and I went out and actually picked it up. I finally was motivated to do something! Hmmmm... my kids have wayyyy too much junk. Outside, inside, everywhere. I really, really need to focus on getting rid of some of it.

We also played catch. It was fun, but they are still a bit whiny about taking turns. What's the deal, I wonder?

Now my house could use a huge bit of picking up.

Annoyed

2006-11-04T23:12:00.000-06:00

I feel rather childish, but needless to say, I feel rather annoyed. I called Mom this morning to see if I could come over and visit. I haven't been able to go over for awhile, and I really, really wanted to see mom and dad. I told hubby after I got off the phone, "I just have a feeling M will show up with her family."

So, we headed off to church, and when we returned I called mom to see if there was anything I could bring. And guess who was there? M and her family. I love my sister, but when our kids get together there is no peace and quiet. Plus, M is a conversation hog. She's been driving me nuts this week with her neuroses. Everything is about her, and it drives me crazy.

I almost didn't go. Mom just had knee surgery on Tuesday, and I didn't want to be causing too much hassle. I did end up going, and I prayed and tried to have a positive and friendly attitude. I still feel upset, though. I tried to bring up Thanksgiving, and M blew me off. I also tried to show her some cool stuff I wanted to get Mister G, and she basically ignored me. And really, every conversation has to be about her or something she wants to talk about.

My nice, anticipated evening with mom and dad, didn't end up that way. She'd also been over earlier this week, and I just really, really miss my mom and dad. I wanted to just be able to talk to them and see them, and it didn't work out that way at all. I feel bummed.

I guess I'm done being petulant now.

C-c-cold

2006-11-03T08:14:00.000-06:00

It would be a chilly morning today. Brrr.... My feet just aren't warming up, and I want another cup of coffee.

The kids and I all seem to be tired today. My eyes just don't care to stay open! I wish to curl up in a blanket on the couch and slumber. Of course, it's not an option as I have tons of things I need to do around the house. It is in a wretched state of affairs. I was so lazy this week, and I didn't really accomplish anything. I didn't go anywhere either.

I have been wondering this week if I'm suffering some depression. I just don't do anything. I don't make supper for my family, I barely make breakfast and lunch, I don't have any motivation, and I'm just so tired. My house is such a mess, and I want to do something about it, but I don't. Same way with my weight and exercise.

Yesterday, the 3yo cried aaaaaaaallllll day. It was very agonizing since it was the third day in a row. I found myself at my wit's end, and I just about went nuts. Seriously.

I hope I find the energy and motivation to clean, even it isn't a lot. I really have a lot to do, though, and it almost seems futile to attempt to start. That's how overwhelming it is.

2006-11-02T11:07:00.000-06:00

What American accent do you have? Your Result: The Inland North You may think you speak "Standard English straight out of the dictionary" but when you step away from the Great Lakes you get asked annoying questions like "Are you from Wisconsin?" or "Are you from Chicago?" Chances are you call carbonated drinks "pop."
The Northeast
The Midland
Philadelphia
The South
North Central
The West
Boston
What American accent do you have? Take More Quizzes

Unmotivated November

2006-11-01T12:24:00.000-06:00

It's the first of November already. It's weird to change the calender and only have two months left. I'm feeling motivated but lazy. I have lots of things I want/should/need to do, but I'd rather sit at the computer and pretend to be busy.

Despite the cold today, it's beautiful. The sky is a delightful sky blue with little puffy clouds. Fields are harvested and everything looks crisp and a bit stark. It looks so nice that I want to go outside, but my toes are telling me it's a bit colder than it appears.

I've allowed the tv to be on all morning because I can stay on here longer. How sad is that? I just don't have motivation when I'm chilled.

I'm going to check my email one more time, and then this is it. I'm done with the computer, and I'm going to wash dishes and laundry. I'm going to make lunch and decide on supper. I'm going to sweep the floor vacuum. I'm going to do things!! I have to.

My Rural View

2006-10-05T16:49:00.000-05:00

I have a super unhappy baby on hand. I'm not sure what's going on. I took him in to his pcp today to see if he had an ear infection, and it's been ruled out. I therefore am stressing that it is his shunt, but then again, I called and ns didn't seem all too concerned. I wish it was a more straightforward thing.

Anyhow, the boys and I had a nice drive. It's a beautiful autumn day, and the colors are beautiful. I love fall. I had lots of lovely thoughts on the drive about why I love this time of year, about how summer used to be my favorite season and how spring and fall now are my favorites.

I also visited my future home dreamspot. It's right here on our farm, and I want to build a house there soooooo badly. It is just gorgeous with its view of a valley with gentle slopes and thick trees. I'd leave the cows in the landscape, too. They have a charm in their shape and movements that I'd miss if they were gone. *sigh* It's just such a beautiful spot.

That's all I have time to compose now. My wonderful, fabulous hubby is trying to make supper, and the kids aren't being very helpful.

Happy Birthday to me

2006-09-16T23:59:00.000-05:00

Yesterday, it was my birthday, and I almost baked two of my children. Bad Mom.

Here's how it all went down. I was loading the boys in the van to head to my sister's to have fun visiting on my Special Day. I put the baby in his carseat, loaded up all the crap I have to bring with everytime I go somewhere, and realized I had to put the other seats in their spots. The girls have boosters, so I just placed them where they're supposed to go, but I had to buckle Mister S's in. Being a Good Mom, or so I thought, I was making sure that sucker was in there right and tight. While I was doing my duty, Mister S headed up front to play with buttons. I heard the locks go up and down, and I told him to quit. I did! He didn't pay much attention to me, but I finally coaxed him to the backseat after telling him to put the locks up. Okay, perhaps I'm a bit optimisic (or stupid) thinking a 3 year old might listen to that command.

I buckled the boy in, and I shut the door on his side after I checked that it was up. It was. I walked over to the other side, and I slid the door shut, and then my utter stupidity, my idiocy, hit me full-force as the locks clicked shut. There is a feature on our van, of which I am aware, but at this moment I wasn't considering, where the doors all lock after all the doors are shut. Most of the time it's not an inconvenience.

My heart sunk. I swore. I threw my purse. The doors didn't unlock. So, I figured I needed to be proactive. I went to Mister S's window, peering in at his tear-filled eyes. He was so sad. :( He said, "It clicked." Yes. Yes, it did. It most certainly clicked. "It clicked all by itself, Mama!" Weeeellllll, if you say so, hon.

I tried to tell him he needed to unbuckle so he could unlock the doors. He hasn't been able to do this before, but at this point I was still optimisic. With a little coaching and cheering on surely we wouldn't fail, right? I told him to use both his thumbs to push the red button really hard.

"These thumbs?" he asked, holding said thumbs Fonzie-style.

"Yep, those are the ones! Be sure to press REALLY hard." I replied.

While he tried pushing the red button, I called the Husband. Or tried to. My first message, I guess, was rather mundane and a bit perky, so it didn't cause major concern. My next call, after five minutes of trying to get Mister S to push the red button harder was a bit more detailed. I told Mister S I was going to run in the house and get some keys to try to unlock the door, and I waved at Mister G and he smiled at me. I tried the keys, and I tried them again. And you know what? I tried them three more times at least, and they still didn't work. Mister S told me where the keys were when I failed to open the door with the keys that wouldn't work.

"They are right there, Mommy" he said as he pointed up front.

"Oh, you're right! What a smart boy you are!" I said in a decidedly optimistic and sarcastic voice. Thankfully, the sarcasm flew right by him.

I tried Husband again and left a more frantic message. I thought perhaps he knew were the spare was or had it on him and was nearby. It turned out he did know where it was, but it was with him and he wasn't nearby. I called work to see if they could get ahold of him, and I called my in-laws to see if FIL could come to the rescue. He wasn't answering his phone either!

MIL said she'd call the local repair relative, and I continued to encourage Mister S to unlock his seatbelt. I think my persistence about it was annoying to him because he kept burying his head in his blanky.

It was hot, though. When that click first occured, I was pissed. I figured, though, we could get it open, and I felt pretty positive. As time passed by, I had visions of my babies dying, and it wasn't good. Their little cheeks were flushed, and Mister G had sweat running down his forehead.

Rescue arrived and within five minutes he had the door open. At this point, Mister G was crying and Mister S was obviously upset. When that door opened, Mister S burst into tears, and I don't think he'll play with the locks anymore. He still draws on the table no matter how many times I've told him not to and threatened/disciplined/punished him, though, so I'll be sure to check the doors.

All ended up well, but it certainly isn't an experience I care to endure again!

School Days

2006-09-08T09:55:00.000-05:00

Off to school they went. I now have a second grader and a kindergartener! It was Miss I's first full day of kindy, and she seemed a bit taken aback at the idea. She was a bit weepy and told me she was sad and was going to miss me, her two brothers, and her dad.

Miss I's first three days of school were only a couple hours each day in the afternoon. The first day I buckled her in, got in the car, and she said, "I don't think I can walk all by myself. My legs feel funny."

So we talked about being nervous and scared, and how it was okay. I assured her I'd walk her to her classroom, and Mrs. L was very nice. She giggled and was fine. When we got to her classroom, she ran off after hanging up her backpack. Actually, she hung up her backpack, looked around at the others that were there, and turned hers around so it faced out. I was surprised by that. She's obviously a bit worried about fitting in. It's so sad it starts so early!!

Anyhow, Miss I ran off to play, realized she didn't say goodbye, and gave me a HUGE hug. She's so sweet and loving. :)

I've walked past Miss R's classroom the last several days and peeked in. She looks so grown up. I asked her on her first day how school was, and she replied, "It was just like first grade! It was like I never left!"

Mister S is very whiney and complainy since his sisters went to school. I hope this phase passes relatively soon. Mister G is teething and crabbing, and I'm discovering though it might be quieter around here, I'm no less busier.

Sad

2006-08-26T23:02:00.000-05:00

I'm feeling a bit sad. My youngest has spina bifida. He doesn't have sensation in his feet. Today I went to church, and two people tried to tickle his feet. One said, "He's not ticklish?", and I replied he wasn't. She replied, "Oh, he's no fun."

And it really, really bothers me. She wasn't being mean or malicious, she just didn't realize he has no feeling in his feet. I didn't explain, and perhaps I should have, I don't know, but the comment just won't leave my head. He's no fun, he's no fun, he's no fun.

He's precious and adorable, but it's true, I wish I could tickle his feet. I can't say how often I've stroked his feet to comfort him and let him know I'm there, and then remember. I squeeze his little toes and play games with his feet, and then it will hit me. It's important to do these games with him because it gives him an awareness of his feet. He was actually giggling and laughing the other day when I pretended to bite his feet, so we can still have fun with his little toes.

I don't know, but that comment, and another one made shortly afterward, just made me feel so sad. I am sad about many things today. I'm sad because three years ago my grandma died. I'm sad because I feel like things have changed SO much, and I just want to be able to say to people, "I'm still me! You can talk to me!" I know I can make the first move, and I probably have to, but I just don't know how sometimes.

He is the most fabulous baby, and I love him so much. The spina bifida is a tremendous deal sometimes, and sometimes it's just part of life. I have to believe all this is just part of dealing with something like this. Tomorrow I'll probably feel better and smile at my sad silliness.

One other thing that saddened me today was looking at his older brother running like a maniac. When I thought of having number 4 I thought it would be awesome to have brothers together like my older two girls to play, and do boy stuff like baseball, football, and wrestling. He is pretty young yet, and I think they will find things to do, but it will be different.

I'm rambling quite a bit now, and I need to get to bed.

Afraid

2006-08-24T13:53:00.000-05:00

It's become painfully obvious why it's getting more difficult. When he was born, there was a part of me that expected he might die. I didn't want that to happen, but I was prepared for it to happen. Well, as prepared as one can be. And with two revisions under our belt now, you'd think I'd be calm, cool, and collected. I'm NOT. At all. I'm a bundle of nerves. I'm scared he'll be changed or die or harmed. I love him. I love all the things he can do, what he's accomplished, and I'm scared the surgery will take that away from him. He's real to me. No longer do I think he might die, I now am fervently afraid he will be taken away.

*sigh* I'm waiting for his neurosurgeon to call back. It's been all day. I called when the office opened, and I'm getting sick of it.

Bats!

2006-08-22T17:53:00.000-05:00

Today is a beautiful day. It's the kind of day you feel like doing things and enjoying life. I haven't done much, but I've enjoyed the day. But here is the thing that's been bugging me.

Bats. I hate bats. It seems to me there are many bat lovers about, but I'm not one of them. Well, allow me to clarify. I'm fine with bats outside, but I am NOT in the LEAST okay with them in my house. In fact, I love bats outside, and they don't even freak me out if they are outside. Inside is a completely different matter.

I've lived in this house for 9 years, and I have not gotten used to the bats that invade my nights. I have prayed, bargained, pleaded for their demise, or really just for them not to come in. So far, they still visit. They aren't hanging out in the attic (we've checked), and they don't come in every night. It is probably about a total of two weeks out of the year that they make their appearance, but one night is one too many.

Two nights ago, I was feeling quite comfortable with the lack of bats thus far this year, so I was taken by surprise when I walked into my bedroom and saw one hanging on the window frame. As soon as my mind processed the blob hanging there was a bat, I ran as fast as I could hunched over and carrying a sleeping baby down the stairs. I went as quietly and quickly as possible and told my hubby in hushed tones, "There is a bat upstairs. Hanging in our window. Please. Take. Care. Of. It."

So, I went into the living room, heart pounding, with the baby to nurse him back to sleep, sure my knight would rush to my rescue. It was draft night for fantasy football. Very Important. I sat on the couch in frozen, freaking panic, and he took ten minutes to go upstairs and get rid of it. I was going crazy, telling myself I could wait until he was done, the bat wasn't going to fly away or disappear, but I felt so anxious and scared in that time.

I remember the time when we were first married. I fondly called him My Batman because he'd rescued me the night before from a bat. As I spoke the words, the window shade in our room rustled and out flew a bat. I about died. He used his trusty tennis racket, and once again, was My Batman. It was funny.

I have numerous bat stories. Once, hubby was bartending at the bar his parents own, and at midnight I awoke to see a bat hanging on the door frame. I called him, and he came home, got rid of it, and went back to work. And there was the time I was carrying my sleeping daughter upstairs, and I turned on the hall light (which I seldom do), and there was a furry creature on the floor. If I hadn't turned on the light I wouldn't have seen it, and I probably would have died of fright as I walked into its space and it flew up. Oh shudder. I can't even think about it.

Last year, we were watching a movie, and I was very absorbed in the storyline, and suddenly, out of nowhere a bat swooped down by me. I lay there so petrified, and my heart was beating so hard and fast. Hubby returned, sat down on the couch and resumed the movie. I started crying and sobbing as I came out of my frozen state.

Today I found someone who has a similar fear and panic. My youngest gets physical therapy, and his therapist and I got on the topic of bats somehow. It was humorous and comforting to exchange stories.

Recently, we had our house weatherized and insulation put into the walls. I was hoping perhaps we'd have no more bats, but the other night disproved that. Ah well.

First Blogger Post

2006-08-17T11:01:00.000-05:00

Today it is raining, and I feel better. Yesterday, it was gorgeous, and I was so sad and angry. I felt so, so, SO down yesterday, and I felt like I was drowning. I moved to this house nine years ago, and I have always loved it, but it now feels like a trap. Or a pond, and it is swallowing me up.