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LUCKY LUKE

Page's7

May 2013

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NOT SURE

May 18, 2011 01:24am (EST)

I don't know how long this post will be. There is a lot going on, and I hope to touch on all of it without boring everyone to tears.
Also, vertigo is kicking in and I feel like I'm typing on a merry-go-round. Not as fun as it sounds.

First. Bethany hasn't gone more than 4 days in a row without a "seizure" thing. We took her in this morning for a 72 hour epilepsy monitoring. Thankfully, my husband volunteered to stay the nights with her, because I can never sleep in the hospital. All the peds rooms have Wii's and the neurologist told her to stay up as late as she could and play it. She also said there are exercise bikes they can bring in if she should feel like it. We're just trying everything to try and trigger something. This is the one time we WANT her to have one!

Tomorrow, my mom will go up to the hospital and stay with Bethany while Ben and I take Luke to a fun-filled day of urology appointments.

Poor guy. A couple tests are pretty invasive. I just keep thinking about last time he had surgery and they needed to cath him because he wasn't able to void...

Poor kid was totally traumatized. Hoping for answers here too. We should get the results Thursday. Thursday morning, he also has a psych. appointment/med check. These always make me sad. Not sure why, but walking into that office threatens to overwhelm me every time.

Ben graduated from college last week. Yay! Now just to find a better job...

It's been an extremely long two years. I took the kids to the graduation ceremony. All of them. Luke whined the whole time, Nora ran around like she's never had to follow a rule in her whole life AND it was 2 1/2 hours long. Don't ask why we stayed the whole time. I was just trying to be supportive, I guess. Thankfully, we were in the special needs seating section and it wasn't at all quiet. In front of us there was a mom with her son, who appeared to be in his early to mid twenties. He was in a wheelchair and appeared to be otherwise "normal". I watched him out of the corner of my eye... I always do. I can't help but to see Future Me and Luke in those people. I thought he was "normal" until someone behind us blasted and air horn and that man and Luke simultaneously "ducked and covered". It was a lesson in how people view Luke at first glance. A "normal" boy with a physical disability...

Speaking of people viewing him like that... You would think someone who works at the school with special needs kids as a profession would know better. BUT, last week at Luke's annual activity day (a track and field day for kids with special needs of all kinds), we were appalled when a para started bawling Luke out because he was walking with his dad and I and didn't "wait for her permission".... Okay. There's a couple issues here. First, every year, Luke has been released to do the fun activities with us. The paras know us, they see us all the time, my husband works at the school. Another para AND the physical therapist was walking with us. This para starts bi***ing and I can't say that strongly enough because that's what she was doing... at Luke, who is being carried by my husband about not waiting to go with the GROUP... (what f-ing group, Lady?) and when he tried to say he was sorry and he must have been confused about the rules, she continued to ARGUE with him and go on with her rant about how he didn't bother to listen. Holy bleep. My husband and I were about to lay into her when the PT turned around and said, "It's okay. We knew where Luke was!" I watched this .... person... for quite awhile. She was just fine with the other kids she was watching. Another para put Ben and I in charge of him as long as we were there (like always), but every time she had to interact with Luke, she sneered and scowled and snapped. She just doesn't like him. The school will be getting a letter saying that we don't want this ... person... to have anything to do with our son's care at all.

Excuse my language, but nothing makes me angrier than that kind of b.s.

Friday, my mom is having surgery, so I'll get to sit in the hospital one more day, but I don't mind so much. My mom would do anything for me. I'm glad to be there for her. I was so hoping (and still am) to go and visit Little Lesley Lynn's mom, Tracy this week as long as I don't have the daycare babies, but... well... I'm still hoping to work it out. Keep your fingers crossed for me!

Love and Hugs, Shareland! Blessings and prayers for all. I so wish I had a little more time to get all caught up! xoxo

Posted by Page's7 | Comments: (4) | Permalink

MORE ?????

Apr 18, 2011 06:15pm (EST)

She had another episode while we were shopping yesterday. She recovered more quickly than before.

I spoke with the neurologist who told me that the EEG looked normal. He wants to wait and see what the MRI says, but if that's normal (he's anticipating that it will be), we will probably need to be more concerned about anxiety.

Also still need to check on the blood pressure issues.

That's all for now.

Posted by Page's7 | Comments: (3) | Permalink

?????

Apr 16, 2011 10:37pm (EST)

Bethany has two more of these episodes since Tuesday. We went to the ER after the second one. No real answers yet. She had an EEG yesterday and will have an MRI on Tuesday followed by another visit with the neurologist on Wednesday.

She also needs a visit with family medicine to check up on her blood pressure which has remained somewhat elevated.

The neurologist thinks it may be confusion migraines, but it doesn't quite fit that bill...

Being me, I have looked at seizure info online. The thing that describes what she has going on, pretty much to a T, is called partial complex seizures. But... I guess we'll wait and see what we find out.

The doctor told us that this isn't something we have to rush her in to the ER about every time, but just call when it happens and have the on call pediatric neurologist paged.

She had one last night, but I didn't call... I don't know why, but... she's okay so far today. I, however, am a basket case. I let her go to watch the Grand March for prom with her friend. I didn't want to let her go, but I did because it's at the highschool and my husband is working there tonight. Otherwise, she'd be at home and I'd be following her around like I've pretty much been doing all day...

Posted by Page's7 | Comments: (2) | Permalink

IT FIGURES

Apr 13, 2011 01:02pm (EST)

Of my four children, only one - Bethany - doesn't have any brain or spinal cord issues. So you can see how I might be a little shocked and more than a little freaked out when the school nurse called me yesterday telling me that she thinks Beth is having seizures.

I quickly called my daycare mom and asked her to pick up her son and somehow got to the school without crumbling like I felt might happen.

As the story goes, Beth was in class, suddenly got up and walked to the front of the classroom. The teacher asked her what she was doing, and Beth said she didn't feel well. The teacher said her speech was slightly slurred, she told her to go and sit down. Beth sat down in her desk, where she proceeded to laugh in a strange manner. The teacher immediately sent her to the nurse with another student guiding her. When she got to the office, the nurse said she could tell Bethany wasn't able to focus, and she was slipping in and out of staring episodes during which she would not respond. When she did respond, she was slow and confused. She said she had tunnel vision and her hands were numb. Her blood pressure was 200/100. By the time I got there, her blood pressure was down a little 170/88. She seemed confused and disoriented and was moving very slowly. It was difficult to understand her.

By the time we got to the ER, she was doing a little better and continued to improve. The head CT was clear, bloodwork was normal, neuro exam showed some weakness on left side and slight difficulties with memory and thinking. At one point, she was asked to draw the face of a clock, and she put three 11s, and was missing a couple other numbers. Her handwriting looked like a kindergarteners.

After 7 hours, we were sent home with a diagnosis of seizure and a follow-up with neurology for an EEG and MRI. And of course, instructions to come back if anything else unusual happens with her.

.....

.....

Posted by Page's7 | Comments: (5) | Permalink

UPDATES

Mar 31, 2011 08:18pm (EST)

This is my 3rd attempt at this today, so I guess you all get lucky. I’m going to give you a condensed version! 

We’ve been pretty busy, but I’m afraid it’s just the beginning.
Bethany is in JO Volleyball (Junior Olympic) and that has occupied at least 2 weekends per month. Her team is doing very well, playing and winning consistently against older teams. But… well.. If you know anything about JOs, it’s A LOT of travel and some hotel stays and it’s all around pretty darn expensive. We can’t really afford it, but here we are mid-season. Plus I’m realizing the competitiveness of other parents and coaches and I’m NOT excited aout it. We won’t likely do this again next year. The last tournament is in June (Father’s Day weekend!) and I’m looking forward to being done with it. However, she’s still going to Volleyball Camp in July. PLUS, she starts driver’s ed next month!!! Heaven help me.

Grace’s back is doing okay. She’s wearing her brace and it helps quite a bit while she’s wearing it. She goes back to the doctor in a couple weeks. She’s all signed up for a week at camp at a local Christian Camp. She’s pretty excited. It will be good for her to get out on her own. She doesn’t really know anyone signed up for her week and she’s excited to make some new friends. If all goes well with her back, she’ll be going to a tennis day camp in June and starting school tennis in August. Yikes! I’m not sure if I’m ready to have two in sports! And if all goes well still, she’d like to go out for school golf next spring. My husband is excited about that one! I can’t golf for anything!

Luke has a CP Clinic appointment coming up in May. This includes a urology consult since he’s still having issues there. Right now we have him on a toileting schedule, which is going okay. They also want me to start him on a laxative and keep him on it until the appointment. They seem more concerned about his colon than his bladder. They think that may be what the issues are, and the more we try before the appointment, the faster we can get down to business. We will also find out about when the surgery will be for his leg. His attitude/behavior has been a HUGE challenge for me and the entire family lately. It breaks my heart, but I actually am starting to dread mornings and evenings with him. He’s so bitter and… old. I don’t know whether to ground him or put him in a nursing home. Please don’t judge me too harshly for saying that… But, seriously. Of course, at school, it’s still all good. We’ve tried a small dose of meds when he gets home from school, but he gets almost combative when he starts “coming down” from it. This summer, he will again be going to camp for a week. He will also be joining the local children’s theater in a production of “Aladdin” in June. I think he’ll have a great time with that.

Nora. She’s getting so big. She’s all signed up for preschool in the fall! Twists my heart just a bit. I’m also looking into gymnastics classes for her. Hopefully, we’ll start those soon. There’s also a gymnastics ½ day camp for her age group this summer. She so desperately needs to be with other kids her age! And no. I’m not going to think about her spinal issues. She will be fine. She *will* be fine.

My husband’s just about done with school and starting to apply for “real” work. Though he’s blessed to have a full time job with the school if he doesn’t find something else.

Me? Trying to eat right, exercising, still doing the daycare thing. I’ve got ideas for another little side business, but I don’t want to jinx anything, so I’m keeping that one to myself for now. However, my outlook is bright and positive come what may.
Okay. Maybe it wasn’t condensed… Thanks for hanging in there! 

Posted by Page's7 | Comments: (4) | Permalink

CARB LOADING

Mar 09, 2011 02:23am (EST)

It's no secret that I'm an "emotional eater". I hate that phrase with everything in me, but it is what it is. I get stressed, or anxious, I want to eat. Carbs of any variety. I've been working on that and doing pretty darn well over the last couple of weeks. In fact, I've cut pretty much all empty carbs and sugar out of my diet and have been feeling pretty good about it. I've been working on my attitude and changing my thought patterns and all of that good stuff.

But today... Today has been rough on those little newborn habits. If you remember, back in December sometime, Grace took a nasty fall down the basement stairs and injured her lower back. The area where she has those more worrisome spinal defects. She was taken to the ER by ambulance and after an xray, it was determined that the xrays were essentially unchanged. She was given oxycodone and told to take naproxen regularly until she was feeling better.

Here we are in March and better has yet to come. Sure, she's back to most activities, but always with pain. The swelling around her tailbone area is still there. SO we finally got in to see the ortho team at the clinic. We were scheduled to see our favorite nurse practitioner instead of the surgeon because his schedule was out for another month or so. Since the NP works very closely with Dr. S, we were not concerned about quality of care. Plus, we've known her from the beginning of our orthopedic needs.

The whole floor seemed to be running behind, so we had quite a wait after the xrays. She did stop in and let us know that she knew we were there and she was waiting to talk to Dr. S about the case. That got me thinking something was up.

She came in a few minutes later and said the Dr. S was with a patient and it would be a bit before she could get to him. She took the history (again) and did an exam. She pulled up the xrays from October and the ones from today and put them side by side on a split screen. She explained that she believed there was a difference, although slight, and she REALLY needed Dr. S. to review before she could start to tell us what to do next.

After a while longer,

she and Dr. S (surprise!) came in together. He did an exam, looked at the xrays and determined that it her vertebrae which has been slipped forward 25% previously was now at 30%. Not much of a difference, really. But enough to want to give a back brace a try and start a more serious conversation about surgery.

They would go in and stabilize the defective vertebrae with either a steel rod and screws or by using a bone graft. The latter is the more common procedure for children, however, it's also the more difficult recovery.

Thinking about someone going in and messing with my child's spine... Well... we know how well it went with Luke...

Granted, that was a different procedure with a different surgeon, but at the same hospital and recovery on the same floor... I don't know if I'm ready to face that again... Poor Gracie. She has a mom that's probably more scared of it than she is!

Anyway. That's all talk right now. We're giving the brace a month to see if it helps at all. After that, it's surgery. Well, there is one more thing we can try before that, but it's not a fix, exactly. More like a bandaid. Injections through the "crack" in her spine and into the affected area to relieve some of the pain. But again, wouldn't fix anything and isn't guaranteed to work.

So it was a fries at lunch and waffles for supper kind of day. Tomorrow will be better.

P.S. Luke has his well child check up yesterday. Everything looked good, except his growth (there wasn't any), but blood work all came back fine, so we'll increase vitamins and not worry about the growth just yet. He *is* still on the charts- not by much, but he's there.

P.P.S. I mentioned Luke's bladder issues to the Dr. yesterday. He was more than willing to set up appointments with urology, but suggested we might try a toileting schedule first... Eh, it could work... We shall find out.

Posted by Page's7 | Comments: (3) | Permalink

SICKY MCSICKERSON

Feb 18, 2011 08:18pm (EST)

Luke came home from school with a fever and cough on Wednesday. This is the second time in 3 weeks. 2 weeks ago he missed 3 days of school because of it. Hmmm. Nothing else hurts, no wheezing, lungs sound clear (yes, I do have a stethoscope... duh.)

Anyway... It seems like a cold, but with a icky stubborn fever. He also has a runny nose. I'll likely take him in tonight.

He has another issue going on lately too, though. He's been having increasing "accidents". He says he doesn't realize he wet them, or he doesn't remember when it happened, or he must have "dribbled" a little... But it's not just a little dribble - it's a lot of dribble... So... I'm sure trips to urology and/or neurology will be in short order.

I don't even want to speculate on what the issues might be right now. I think I'm actually doing a good job of avoiding thinking very far into it. That's a big step.

Yup. Because he didn't have enough on his plate, right?

Posted by Page's7 | Comments: (3) | Permalink

DECADE

Feb 10, 2011 04:42pm (EST)

Luke turns 10 tomorrow. Double digits. He's so excited. Me? I've been thinking about the last 10 years quite a bit lately. Who was I on this day 10 years ago? Who did I become at 8:39am 10 years ago tomorrow?

10 years ago today, it was day 4 in the hospital, upsidedown, after my water broke. Trying to keep my baby boy safe. I was a tearful mess. Later today (10 years ago) I would know that there was no stopping it, labor would begin. On that day... I was simply a 22 year old mom who was fearful knowing that her son would be arriving too soon. Lord, sometimes I wish I could go back there and... I don't know... what could I do differently? Insist that the Drs. and nurses listen to me? Tell them what I needed because I knew. Yeah... Let's try to make them listen to a 22 year old who is preggo with her 3rd child... To them, I suppose I looked stupid and irresponsible. Perhaps they thought I must have done something wrong to cause this to happen... I don't know. I suppose it all would have ended the same whether they listened or not.

Tomorrow (10 years ago) I would be a different person. I would find my inner mama bear and she would grow stronger by the hour. I would learn that I wasn't a "normal" mom anymore and that my life as I knew it would never again be one of normalcy, never be predictable... I guess in a way, I grew up that day.

Since then I've lived in a different world. Full of people and places and feelings I never knew existed. Full of abbreviations of which otherwise I would have no knowledge. Specialists, medications, therapies, IEPs., adaptive equipment and technology. These are all normal.

It's hard for me to remember who I was before 10 years ago. What did I worry about? What did I put all my energy into? What filled the little spaces in my mind? Of course I had my girls and my husband and the house. Surely they kept me occupied. But man oh man.. I sure wished I would have realized how blessed I was just to have everyone safe and healthy.

Well. I realize it now. I know how incredibly lucky I am to have my four kids all here with me. I know how blessed I am to have the opportunity to take my son to therapies and go to IEP meetings. I know that every day I walked into the NICU and every night I've ever spent at his bedside in a hospital or at home is a gift.

With his struggles, and his challenges and his amazing attitude, he's taught me more about how to live than anyone else ever could...

I love you, My Boy. Happy 10th Birthday.

self portrait

007

Posted by Page's7 | Comments: (2) | Permalink

THREE AGAIN

Feb 08, 2011 05:35pm (EST)

Nora's 3. Omagarsh is she ever three!!!

I've found the entire 3rd year of children's lives (my kids anyway) to be the most challenging thus far. Keep in mind that I do have a teenage girl. (That's saying a lot.

) No matter that I have been through this dreaded 3rd year three times before. Nope. This tiny-ish, picky, fit-throwing, bossy, changes-her-clothes-at-least-50-times-per-day, refuses-to-eat-even-when-she-chose-every-aspect-of-the-meal, tiara wearing, cat squishing, bedtime fighting, brother hitting 3 year old has taught me this: That I have learned nothing in the past 15 years of parenting that can help me in the 3rd year of any child's life.

P.S. the pic title should be Nora AFTER her first haircut.

Nora before her first haircut 010

Posted by Page's7 | Comments: (3) | Permalink

SORRY...

Jan 26, 2011 01:54am (EST)

I've been having a hard time dealing with... well... me lately. If anyone knows how to completely delete a post after you've already hit the post button, would you kindly let me know?

Here's today's post from my other blog. It may be boring, but it helps me to keep track of what the Dr. says and when.

Tuesday, January 25, 2011What's "Bugging" Him?

We had an appointment with Luke's psych. this morning. We talked about how he's the model student at school and how none of the teachers or paras working with him saw anything to be concerned about.

We talked about him having very rigid thinking and how it affected him and my mom and me when we went to Disney World at the beginning of this month. And how it affects his everyday home life. We talked about his obsessions and the fears he has that don't seem to make sense at all. Take as an example the meltdown he had when we went to the "Bug's Life" production at Animal Kingdom. He started pitching a fit before we even got close to it because he was afraid he might hear buzzing. And the earplugging and screaming as we waited in line because he did indeed hear buzzing. Luke's not really afraid of bugs- just the noises they make. When asked if he understands what the noises are, how they're made, and that they are just noises coming from a speaker, well, of course he did, but it wasn't enough to calm him down.

I've often wondered and thought that it was true that he has sensory issues, (he did receive OT for sensory concerns when he was a baby) but testing never reaveals enough of an issue to approve therapies. However, his psych. thinks it may not be a sensory issue, but more of an anxiety issue that he can work on. She may be right. All of Luke's "quirks" were worse when we were at Disney. They also get worse on weekends. I believe it's a lack of knowing what was going to happen next. He could/would not make eye contact even with me almost the whole time we were there. He had tantrums. He obsessed over the map and where we would go next. He was rude and seemed agitated most of the time. (Except when we were at the thing he wanted to do next, but as soon as we did it, he was back to the grumpy old man-baby syndrome.)

Since we've been home, things have been better, but when we go somewhere more unpredictable, I notice these things getting worse again. SO, we talked about increasing his meds and maybe adding in some therapy for anxiety. However, she also mentioned that we could try him on an antidepressant for the anxiety issues. First, though, we'll wait until we get the re-eval back from the school OT and see what they have to say about the sensory portion of the test.

While we were in the waiting room before his appointment, he was reading a comic strip in a magazine (what else?) and I noticed that his hands were shaking like someone who'd had too much coffee. I didn't think too much of it. I thought maybe he was just tired. (happens to me sometimes when I'm overtired) He needed a weight/height/vitals check when we got there and the doctor noted that he had grown half an inch since last time, but had not gained a significant amount of weight. No surprises there. She said his bloodpressure was normal, but his pulse was 120 where it's normally at around 88. I pointed out the shakiness to her and she said sometimes the meds will build up in the system and cause that to happen, but that's almost always in the afternoon or evening, not in the morning shortly after taking the meds. SO, she wants me to do pulse checks 3 to 4 times a day over the next few days and see how it goes.

I would hate to find out that his medicine is causing bigger health issues. They really do help him keep focused and more in control. (and the last thing he needs is more health problems!)

I guess that's all for me right now. I have two babies and a toddler all starting to cry right now... Fun. Fun...

Posted by Page's7 | Comments: (5) | Permalink