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LUCKY LUKE

Page's7

May 2012

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RUDE

May 02, 2012 10:29pm (EST)

A couple years back, we tried a program through the county where Luke was to be taken a couple times a week with a "mentor" to do fun, social activities with the mentor and other kids with special needs.

This didn't last long as the "mentor" was a total flake and angered us to the point of not having him participate any longer.

So yesterday, after an appointmen t with Luke's psych doctor, I was in a rather moody place. He has not gained weight and has not grown taller... again. So he's been in the same place for I want to say about 9 months. Barely making it past that 60lb. mark. We also are adding and adjusting medications which brings him to 6 pills per day, 5 of which are for mood/behavior. I always feel like such a lousy mom after these appointments. We have to talk honestly about what is going on at home, and no matter how I word it, it almost always makes Luke feel bad. He's been unbearably irritable lately, especially with Nora and has even begun to get physically aggressive with her. That's not like Luke at all and we just have to try something else.

We went to Target to get his prescriptions and do a little shopping. Between his and Nora's behavior, I felt like crawling under the shopping cart! We were waiting at the pharmacy counter and this young-ish lady comes up and says, "Luke! Hi!" and as I turned and looked at her face, my polite smile abruptly disappeared. It was that flake that "worked" with him for the county. My honest to god first instinct was to tell her to get the hell away... but I bit my tongue. She's standing there smiling ear to ear and asking if we remember her. Luke and I just looked at her and nodded. Neither one of us able to mask our true feelings. She didn't seem to pick up too quickly though. She asked me how Luke was doing. I just looked at her and nodded toward him. Then she says, "this is my little boy" and pointed to the kid in the back of her cart. We both looked at him and said, "Oh." I managed to squeeze the corners of my mouth upward slightly, mumbled a "well we better get moving", and walked away.

Yeah, I was rude, but I don't care. Just the sight of her brought back all the unpleasant feelings... errrgh.

Okay, done there.

I completed the first steps of getting Luke signed up for the virtual academy for next year. I'm pretty excited about it and so is he. I talked to his psych about it and she said she sees no problem for him with the program, but she's worried about me...

Yeah, I kinda worry about the same things. I guess whether or not I get burnt out is something we won't know until we try. I will keep my job, so it's not like I'll never get to leave the house, right?

This is just mostly a venting entry. I hope to be able to have some time later to fill in the rest of the family's stories.

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

I.E.PLEASE CAN WE GET SOMEONE WHO KNOWS WHAT THEY'RE DOING?!

Feb 25, 2012 01:32am (EST)

I guess the title probably tells you about how well Luke's Middle-School Transition IEP meeting went today... I could not believe we were even calling it an IEP meeting. There was NO ONE there from the Middle school. Not ONE person. The physical therapist was not there. The occupational therapist was not there. His case worker has been flighty all year. I understand that she's fresh out of college and all, but... COME ON!

We went through what they see as issues and what we see as issues, but there is no way we are calling that "meeting" good enough. We requested another meeting AT the middle school with the WHOLE team in August BEFORE school starts.

I'm actually very very seriously considering homeschooling him starting next year. Academically he's way ahead. He would have more options at home (online schooling). I never considered it very seriously before because I figured that would be detrimental to his social development. Well.. at this point I know his social development is not going to improve just by being around other kids. He does not interact normally in any situation... ever. I honestly don't think he ever will. Of course we won't give up on trying, but being the object of entertainment and the butt of jokes he doesn't understand isn't going to help him. Kids are mean. They just are. It might not bother him that they make fun of him, but my heart can't take it.

I've talked to him about online schooling before. He really got excited about it. I guess we'll see how it goes. I'm just really, really frustrated with the whole system right now. It's like they think they're dealing with rookies!

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

THE GOLDEN CHILD

Feb 11, 2012 10:45pm (EST)

Today is Luke's 11th Birthday. I can't believe it's been that long already.

Every year, his Birthday hits me differently than the other kid's do. The past couple years had been easier. I felt like I started to really heal and deal with everything, and just move forward.

For some reason this year is very, very difficult. I worked this morning and kept watching the clock. Each minute that ticked by was like I was living in two worlds. The one in my mind accounting for every event and emotion this day 11 years ago. It was so bittersweet. I was so thankful to have heard him "cry" when he was born, but sick with confusion and emotion as they took him away. The knowledge of how wrong and backward those minutes and hours felt. How foreign my child looked in the transport incubator before they took him to another hospital. Being unsure of the "rules". "Can I touch him?" shouldn't be a question a parent has to ask about their newborn. And even if the answer was yes, there was no part of him that wasn't covered with blankets, tubes or wires... a tiny patch of thin red skin between his hat, the blanket, and the ventilator tube... I wondered what he really looked like. I wondered if I'd ever see him alive again. Would my voice, my words stay with him? Could he even hear me in there? How would he know that I loved him? How would he know he wasn't all alone? How could I tell him I'd be there as soon as they let me? Was he in pain? How could I help him? How would he tell us? .... *Those* memories hit me hard this year.

But it's not just those. It's also knowing what I know now about his struggles. It's watching him work so hard for every step, every pound gained, every letter written, every relationship gained... and lost. It's the wondering even after all this time, what I could have done differently and how his life might be if I'd been able to keep him safe another 3 months.

I know. It's a little silly to think about such things at this point. I know it's "not my fault" blah, blah, blah... I know, I'm blessed to have him here, and that he's uber strong, he's super smart, he's going to do great things... Yes. I know.

But... Hello feelings, there you are. Again.

Posted by Page's7 | Comments: (7) | Permalink

I'VE BEEN WATCHING YOU

Feb 09, 2012 07:21pm (EST)

So Beth spent just shy of 2 weeks in the hospital. She's been home for nearly a week. There are many many issues that need to be sorted through, but I think I can say that she is starting to show improvement.

There are other issues happening here at home that aren't the most pleasent things to deal with, but I'm confident that I'll come out the other side a stronger person.

I don't often comment on other blogs these days and I'm sorry for that, but I am watching and reading and cheering and crying with you all from where I'm at. I love you all dearly and I am ever grateful for having SYS in my life. Thank you all for your love and support. I honestly don't know what I'd do without you.

xoxoxoxo

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

WHO NEEDS SLEEP, ANYWAY?

Jan 25, 2012 03:31am (EST)

I just wanted to give a quick update and ask for more prayers and positive happy thoughts.

Luke's surgery went well. He had a bit longer recovery than we expected, but he's back to normal Luke now.

On Sunday of this week, I did something I hoped I'd never ever have to do. I dialed 911 to have the police come to my house and get my 16 year old out of her room. She was threatening suicide. She was admitted to the adolecent psychiatric unit where she will remain until deemed ready to come home. Usually 7 to 10 days, but could be more or less depending on how things go.

The whole thing is a little overwhelming for me right now and because I'm working a 7 day stretch right now with having to report at 3 a.m., I've been averaging 2 to 3 hours of sleep per night. It's catching up to me. I now have a nasty, nasty cold on top of my sundae of pleasent-ness.

Alright. I'm up too late again. Good night my beautiful Share family. Thank you for being my safe place.

Posted by Page's7 | Comments: (9) | Permalink

ALL ABOUT LUKE

Dec 12, 2011 11:49pm (EST)

It looks like Luke will be going into surgery again in the near future. He will be having the plate and screws they put in his right leg removed. His bone is starting to grow over the plate, which could cause issues. They tell us it's a very easy surgery and 3 out of 5 times, it's outpatient.

He is also falling a lot more and his hamstrings and left heel cord are slowly, but steadily tightening. He walks with a pronounced crouch most of the time and falls are getting more frequent. There will be more serious discussions in the next year about whether or not to release his hamstrings, or at least the left one. The concern is that a hamstring lengthening could make things worse for him, and there is no fix for it if it does. However, if his crouch continues to worsen and we never had the surgery, he'd eventually be in the same boat as if the procedure didn't work, so I don't know what to think.

There's time to think about it. It's not like the issue is going anywhere.

We had a parent teacher conference at his school a few weeks ago. His teacher agreed to let him do most of his homework on the laptop to help him stay organized. That is working much better already. He still has a few issues to iron out with making sure he knows his assignments, but I think we'll get there.

I also spoke to his psychologist about his behavior and school performance and his teacher filled out a survey for her. We have added Strattera to his other meds to see if we can get better results as far as his irritability goes. Hopefully it works and we can do away with one or two of his other meds. He now takes 7 medications and supplements every day. I hate that, but I guess it's better than seeing him struggle. And, being honest here, he drives the rest of us nuts when he's not on his meds, too.

We are also planning on starting him in some counseling to help him deal with some of his anxiety issues.

That's about everything for Luke right now, I think.

I have started working part-time at a bakery. Besides the getting up for work at 2 a.m., the job is actually quite enjoyable and pays better than I had expected. A double blessing!

I hope everyone is having a good December so far. God Bless!

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

HALLOWEEN AND OTHER THINGS

Nov 04, 2011 07:44pm (EST)

There were only 4 of us trick or treating this year Ben, Luke, Nora and I. Bethany hasn't gone for a few years and this year Grace chose not to go. Sad in a way, how quickly they grow up.

We only went around a large block in our neighborhood this year. Not far, but far enough when Luke chose to walk rather than ride in his wheelchair. Nora was in her glory! She's just about the perfect age, when she really gets what's going on, but it's still new and super exciting. She is generally a fearless kid. She doesn't mind scary decorations and costumes, she knows they are all pretend. Luke on the other hand, stayed back with me a couple of times with his head buried in my shoulder while his little sister happily bounded through elaborately decorated yards and porches. And there were a few times that he stopped in his tracks and grabbed at me, whimpering as smaller kids passed in scary-looking costumes.

As much as I understand it, and expect it, it stills makes me a little sad. Will it ever get better? Will there come a time when these things are not debilitating for him? Will he be 30 years old and refuse to answer the door for trick-or-treaters in the event that they might be wearing frightening costumes?

Things have changed so much with him in the last year, but not for the better. He has an appointment later this month with the psychologist. I hope she has some new suggestions for us, because we're REALLY struggling right now.

A little thing about Nora. I took her to the clinic yesterday because she's been having a lot of mucus in her stools (I probably should have warned you...) for the last couple of weeks and it seems to be increasing. She complains a lot about tummy pain, but it's hard to tell when she's really in pain, because it never slows her down much. The doctor thought it probably isn't too big a deal, but ordered stool samples to check for various infections. I hope she's right - that it's not that big a deal, but there's a deep-down uneasiness about the whole thing for me. Let's hope it's all for nothing.

Oh! And Bethany. We saw a wonderfully kind psychologist who told us he believed Bethany's episodes were non-epileptic seizures caused by stress. He said it's actually not all that uncommon for teenagers that have the same type of profile as she does. (your average over-achiever) He said it can present as any number of physical symptoms, some of them requiring inpatient psychological treatment. He said he's met kids that have these types of seizures multiple times per day. He said there have been kids that lose their ability to use their hands or legs or have stomach pain or persistant vomiting. All with normal physiological test results. After a treatment program, get better. He said he doesn't believe it will take much to get Beth better. He recommended that she start seeing one of his colleagues next week, practice deep-breathing, and oddly enough said that the best treatment for the "seizures" is to not react to them at all. This seems nearly impossible, and seems to be against every maternal instinct, but I'll do anything if it means making her better. So... we'll do our best to ignore it. He also said that sometimes just knowing what it is and having a diagnosis is enough to make it stop altogether. Lord, I hope he's right.

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

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.

Posted by Page's7 | Comments: (6) | Permalink

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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