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LUCKY LUKE

Page's7

May 2013

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FOR ALL I KNOW

May 21, 2011 04:15am (EST)

Bethany came home from the hospital today. She had an episode this morning and they were able to monitor and document it. What they said is that it's definitely not seizures. That's good news. But they have some ideas about what it could be... That's the news that makes my heart sick to think of and wonder on.

I know I should stay away from the internet during times like these, but.... I didn't. What the doctors suspect she has can be serious. Very serious.... Then again, they could be wrong, right? I'm not going to go into details just yet. We find out the results of the blood and urine tests they took today on Tuesday- that's the beginning of the process. If it goes one way, it's horrifying, if it goes the other way, it's confusing, but better. Beth knows nothing about it. It's just not right to worry her if there's no reason. It's going to be a very long few days. I feel sick.

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HARD TO SWALLOW

May 20, 2011 03:18am (EST)

We met with Luke's urologist today. Yes. He's back to having a urologist. Thought we gave that up at age 3.... Anyway. It wasn't as encouraging as I had hoped. While I understand what's going on with his bladder, I have a hard time explaining it. In short, his nerves, muscles, brain, don't work together like they should due to the cerebral palsy. That includes those in and around his bowel and bladder. His bladder wall is already a good deal thicker than normal due to the muscle "misfires" and this complicates things further. There's really nothing we can do, other than put him on a regular bladder control medication, which isn't guaranteed to work, but could cause more constipation and affect his sweat glands as well. Also we are to keep him on an every two hours while awake bladder program indefinitely.

The news that stung most, was when the doctor said that at some point down the road, he could lose bladder control completly. And we just have to sit back and hope for the best. I'm really trying not to dwell on that... because... what's the point?

Also, neurology decided to keep Beth another day or two. Nothing yet, but she's so exhausted, I thought it looked like she may be on her way to an episode. I just want this to be fixed.

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LOOOOONG DAY

May 19, 2011 03:19am (EST)

Holy Moly. I'm exhausted today. It was a very long day at the clinic with Luke (10:00 to 5:00), but more than the time, it was pretty emotional. I've gotten so used to Luke's strength when ever he had procedures and testing, but today... It was rough. Two of the tests involved catheterizing him, which apparently is the limit on what he can take without panic. I understand, I mean, no one enjoys being cathed. It's horrible! We had to hold him down a couple times. It didn't help that he ran out of concerta due to a pharmacy shortage and can't get his new prescriptions until tomorrow. I gave him a dose of his other meds, but it didn't last and I forgot to bring it along.

I won't get any definite answers until tomorrow when we meet with the urology doctor, but it looked like there was no reflux, which is good, and the only potential problem *I* saw with my fairly untrained mom eyes was that he seemed to have a problem with emptying completely. I wouldn't put money on my guesses, though. Tomorrow isn't far away.

Bethany... Still nothing. This was day 5 since her last episode, so she should be due to have one, but... Conditions are just so different in the hospital that it's really unpredictable. They did see a few bouts of abnormal brain wave activity when she was sleeping that could indicate the potential for epileptic seizures, but nothing they can use as concrete evidence. They had her sleep deprived last night and today and they said no more than 5 hours of sleep for her tonight. I'm hoping and praying that she has an episode while she's in there so they can tell us with more certainty and at least have a plan to put together.

Well. It is bedtime, I think. Sleep tight, All!

Oh, I forgot to tell you. Because she can't be left out, Nora woke up with her eyes crusted shut this morning along with a gooey nose and a "sore sroat". Poor baby's tonsil is huge and her throat is sooo red.

Fortunately Grandpa was around to watch her for us today!

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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...

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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?

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