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LUCKY LUKE

Page's7

June 2013

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CH-CH-CHANGES

Jun 18, 2011 04:10am (EST)

I find it easiest to give an individual rundown of each family member when there's so much going on at once. So here we go:

Ben: Graduated from school, working full time for our school district and looking for something better/different. He has a couple of places interested in him, we're waiting to see how things will pan out. There's a chance we'd need to relocate, but that's really okay with me. Of course it would be harder on the kids, especially Beth... In fact, we've even been discussing allowing her to stay in the area with relatives so she can finish her last couple years of highschool here. She loves this school, and it's been SO good for her. I guess we'll cross that bridge when and if we come to it.

Bethany: Knock on wood, she hasn't had an episode (a major one anyway) since she left the hospital. She's been staying uber busy with JO volleyball and summer basketball. If she's not at a sports practice or game, she's at drivers ed. or at a friend or relative's house and in the rare instance that she's home, she's been mostly pleasent and easy to get along with... as cheeky as she gets sometimes. At 15 1/2, I still get to see glimpses of my little girl in all the grown-upness and I love it. Believe it or not, hugs and smiles are getting more common with this one! 10th grade when school starts... wow.

Grace: What can I say? She's so stinkin' cute and at the same time too grown up for her own good. She's at that knows everything so you can't tell her anything stage. She's at that boys, boys, boys stage. She's at that pushing for more slack but doesn't have the judgement for more freedom stage. She'll be 12 in a few short weeks. What a tough time. You couldn't pay me to be that age again. However, through it all, she's still sweet, sensitive, quick witted. She still has all the physical issues with pain and everything, but she's dealing the best we can with what we have right now. She actually just finished tennis camp. She'll be starting tennis for school in the fall - we hope. Next week she'll be off to bible camp and she has golf lessons coming up a little later on in the summer. She's also planning to golf for a school sport next spring. So if you're keeping tabs, that'll be 2 kids, 4 sports in the next school year. I don't know how we're going to do it, but I guess we will.

She'll be starting 7th Grade!

Luke: Turns out, the same doctor who told us he would be needing surgery to remove the plate and screws from his leg now thinks leaving the plate and screws in his leg is just fine as long as it doesn't cause him pain or discomfort... whatever, but okay. Also, we opted not to do physical therapy for him this summer. For one reason, insurance has been a pain in the butt to try to get to cover services. The more compelling reason, however is that he doesn't really need it. Weird, huh? I mean, he can always USE PT. it's always good for him, but he doesn't really NEED it this year. He does stretches on his own and we help him here at home, and as long as things aren't getting worse right now, we're not worried. There's a huge freedom in that! We finally decided to add an antidepressant to his ADHD meds. for help with obsessive behaviors. We also started him on Omega 3s at the suggestion of his doctor. It certainly can't hurt (anything but the pocket book!). He's also on a bladder medicine that restrict his sweat glands, so we have to keep a close eye on him so he doesn't over heat. I know that there are kids that have to take more medications than he does everyday, but adding in the laxitive, he takes 5 medications a day, sometimes 6 depending on the effectiveness of the adhd med, and one is twice a day. Not something that anyone wants for their babies... He is coming along, though. His psychologist really encouraged him to get out and use his imagination this summer and really encouraged me to limit the screen time... ugh. Easier said than done! Also we talked quite a bit about Luke's fear of bugs and bug noises. She challenged him to face those fears head on by studying and spending time observing bugs and just being by bugs all the while telling his brain that it's really okay... Well, it came out that I also have a *tiny* fear of... June bugs... THEY GET STUCK IN YOUR HAIR!!! It's happened to me twice! I don't think that irrational, but whatever...

Anyway, so I was also encouraged to spend time with a june bug... uh... okay as long as it's on one side of the glass and I'm on the other... wearing a hat. *shudder* Anyway, he'll be going to camp in July and super excited about it, as usual. Hopefully he can work on this bug thing before then. Oh! I almost forgot. On Monday, he goes to audition for the play "Aladdin" with the local children's theater. It will be 5 full days of rehearsals followed by 2 days of performances. Can't wait! My tiny boy will be a 5th grader... can't believe it.

Nora: She's busy. SOOO busy. I enjoy her energy. I just wish I could use some of it! We need to get her in gymnastics.. SOON! She thinks she can do all these tricks! No fear, that one! She needs to learn how to do them properly so she doesn't get hurt... *sigh* I just don't know where I'm going to find time or money for it! Not a cheap sport either! She's such a love and I still feel so incredibly blessed to have her. Well, of course I do with all my kids, but... she's the baby we waited so long for. She loves being outside and swinging and swimming and running and jumping and singing and acting and dancing and being a princess and a puppy, and a puppy princess and a baby. She has an amazing imagination and an amazing vocabulary. She reminds me A LOT of Luke that way... a little unsettling almost, but not something I'm going to over think right now. She'll be starting preschool in the fall and I'm not going to pretend it doesn't break my heart a little bit just to type it.

And me: I blogged about me recently on my other blog you can read it if you'd like at http://www.lifeunprecedented.blogspot.com

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FOR ALL I *DON'T* KNOW

May 25, 2011 04:34am (EST)

We met with the neurologist. He told us what we already knew as far as this NOT being a neurological problem.

He let us know that they didn't find what they suspected they might in her blood test. He said he didn't feel like this was panic attacks, because she didn't have typical symptoms, but he had no other ideas to offer. He said we could check into it from a psychological standpoint if we felt like it might be necessary, but he thinks the place to start is back at the family medicine doctor to see if he had any more suggestions- because the symptoms are serious enough to keep digging into .

I've wanted nothing more than spout off a list of obscenities then curl up in a ball and cry since we left the clinic.

We didn't get anywhere. Well, we know it's not neurological, so I guess that's something. But... She has a dangerous condition, but no one can tell us how dangerous, or how to keep her safe.

I'm torn between continuing my research online and using it to make suggestions to our doctor, and looking for a new medical center altogether.

I don't know what to do anymore. I'm so afraid every time she walks out of the house...

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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

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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.

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?????

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.

.....

.....

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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! 

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