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LUCKY LUKE

Page's7

May 2013

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STILL HERE

Oct 27, 2011 06:46pm (EST)

It's amazing how much things can change in just a couple of months.

Quitting daycare saved my sanity, but opened doors that turned an already difficult financial situation into a nearly impossible one. It became painfully clear that either my husband or I would need another job. Since my husband already works 50 hours per week, I thought it only fair that it should be me. I found a job working only morning hours (5 to 11) five days per week. This works pretty well for us since my husband works mostly afternoons/evenings.

Bethany has been having those seizure-like episodes again since August. We thought we were done with them, but they are back with a vengence. We've been to neurology, endocrinology, cardiology, and now will visit psychology to see if they can figure anything out. If they don't feel like this is psychological, we will be back to neurology for more extensive studies.

Grace is doing pretty well health-wise. She hates school, but always has. She's had some difficulties and made some pretty poor personal choices socially lately. We are struggling to get her back on track. Academically, however, she's doing pretty well. This journey we're on with my sweet girl scares me, as I have no idea where we'll end up. She's very sensitive, very in tune to other's feelings, very caring, especially patient and sweet with Nora... I'm so afraid of her slipping away to a place where I can't reach her...

Luke. He's like a totally different kid this year in school. He's disorganized, often having late assignments because he "forgot" or didn't understand what he was supposed to do. He's failed multiple tests and has gotten several very low scores on homework for failing to finish or follow directions. I have a feeling his teacher is not the most structured person in the world and Luke thrives on structure. Confrences are coming up and I can't wait. It should be interesting. On a positive note, he was placed in a gifted/talented English/Lit. class and he loves it and is doing well. Also, besides the fact that he's not growing, he's doing awesome health-wise. He has not missed a single day of school due to illness this year and it's already the end of October!

Nora is loving preschool and is looking forward to turning 4 in December. She has big plans for 4! We had her parent/teacher conference last week and she's doing exceptionally well academically, but is exhibiting many familiar traits of ADHD that have us a little concerned. (of course we knew this before she started school, but we were hoping it would improve.) I'm not going to go crazy with the testing and stuff just yet, but I can't seem to shake that shadow. She has an appointment in orthopaedic surgery next week for a recheck on her spine. There have not really been changes. She still complains of back and leg pain, especially when she gets up in the morning. I don't imagine anything will come of the appointment and I don't expect them to order another MRI. It doesn't matter if she still has fluid in her spinal cord if she has no new symptoms, they wouldn't do anything differently anyway.

Just an FYI, I have made my other blog private. I'm not actually blogging at this point, so if you were following, you aren't missing anything. Also, I've closed my facebook account - temporarily at least - in case you should notice I've disappeared from your friends list. My cell number is the same, (you can text me now!) as is my email, so if you need or want to reach me, that would be the way. I try to keep up around here, but it's not easy. Most of the time I'm on the computer, a brief check of the email is all I have time for.

I continue to hold you and your children all very close to my heart.

Much Love,
Page

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

WHERE ARE YOU, SUMMER?

Aug 15, 2011 11:18pm (EST)

Most of my summer was spent working. The whole daycare thing kind of sucked it away along with my sanity and patience and ability to care for my family and home. So in July, I gave 5 weeks notice to the parents of the babies. Today is my first day back at being a stay-at-home mom ONLY. So far I think it's going well.

School doesn't start until after labor day. I figured I'd try and salvage a few weeks of summer. I don't have any big plans for it and we can't really travel due to finances being tight and because Beth and Grace have officially started volleyball and tennis, respectively. They will practice 3 hours a day 5 days a week until school starts. I'm glad they have something active to do, though.

10th grade, 7th grade, 5th grade and pre-school... I just want to stop time for a little while... Maybe even rewind a bit.

Every year that passes, my anxiety for Luke seems to creep further into my heart. Every year, the gap between him and "typical" kids widens. Every year, I see the looks he gets from his classmates get less friendly and more judgemental. I see stares going from curious to sneering... They are going from laughing with him to laughing at him and it leaves my heart broken and bleeding.

He loves school. He thrives academically... I wish I could just say that he thrives in school. It's horrible, but I wait and worry for the day he comes home broken and changed because he finally got the joke- and realized he was the punchline...

A mother shouldn't worry about such things. She shouldn't have to.

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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

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

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

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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