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LUCKY LUKE

Page's7

May 2013

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A PUZZLE STORY

Apr 16, 2013 01:42am (EST)

Years ago on a spur-of-the-moment shopping trip, your eye fell on a puzzle with a particularly interesting and beautiful picture. You weren't looking for a puzzle at all, but for some reason, you couldn't resist this purchase. Returning home, you immediately set up a table and went to work carefully studying each piece, feeling a little thrill as they came together to form a picture even more beautiful than the package suggested. Your project was almost complete... almost. There were two pieces left, and three empty spaces.

You searched the box, the floor around the table and retraced your path all the way back to your car, but the piece was nowhere to be found.

You looked back at the picture. It was so beautiful that the missing piece near the top corner was barely noticeable. In fact, it probably wouldn't be noticed at all by anyone else, save the few others that live in the house. So, you decided to frame it and hang it as it was.

Many people passed through your home over the years. Most every one of them complemented your gorgeous puzzle picture. Hardly a one noticed there was anything wrong. You were very proud of it. It was one of your most prized possessions. But sometimes you would just find yourself staring at that blank space. You never could oversee it like the others. Though you loved the picture and enjoyed it very much, there was always a bit of frustration that you were never able to find that last piece.

You still wondered sometimes where it could be. Every now and then you'd plunge your hands deep into the furniture to search once more, but you always came up empty.

As time passed, you had pretty well given up hope that the piece would ever be recovered.

One day, you decide to update your living room. You begin by pulling up the carpet. As you go along, you find various odds and ends. An earring back here, a Barbie shoe there. And then you spot it. In disbelief, your fingers grasp at the edge of a hidden puzzle piece. THE puzzle piece! At last! You're so happy, you feel like laughing and crying at the same time. After all these years, the picture could finally be complete!

As you place the piece gingerly where it belongs and step back to look at the full picture, a certain unfamiliar emotion overwhelms you. Is it sadness? The piece seems almost foreign at first. It fits. It matches. But the picture is no more beautiful than it was before. It is complete. Different. Yet perfectly and wonderfully unchanged.
_______________________________________________________________________

This story is mine. It is what I felt as I sat, after nearly 8 full hours of intense psychological evaluations and testing for Luke, listening to the doctor tell me I wasn't crazy. I wasn't digging for something that wasn't there. He did indeed have ADHD, but there really is something more to his story. He diagnosed him with a Nonverbal Learning Disorder. I honestly didn't retain a whole lot of information about this, but it's a visual/spatial processing disorder. He's sending me a packet of information and resources, and I'll be googling a lot in the near future, but it's something. It's a start to understanding the full picture. Finally.

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

THE GHOST OF PROCEDURES PAST

Mar 20, 2013 01:41pm (EST)

Last week, we visited with Luke's orthopedic surgeon about the findings of the his gait study in February. We discussed the results and the recommended procedures.

Being 12 years old, we wanted Luke to be involved in the decision making, and he was. I was so proud of the way he was asking questions about the meaning of the gait study results as well as various aspects of the different possible procedures. His dad and I barely had to say a word.

After all of that, we were all in agreement of what we feel will be the right path for Luke. Frankly, the whole thing sounds terrifying.

I'll explain the procedure/s first, then back up and explain the blog title. I hope I don't run on too long.

My best understanding of the whole thing:

The will lengthen the hamstring muscles and tendons in both legs, they will straighten both femurs (they have grown twisted) by breaking, rotating, and putting them back together with plates and screws. They will also cut the bone right above both knee joints, angle the knees upward (so they are straight - like normal), and put those back together with more plates and screws. They will pull both kneecaps down into their proper places and reattach the tendons to the tibia. And lastly, they will restructure his right foot to make it as straight as possible.

The whole process should last 7 to 9 hours, and he will come back looking like he got new legs, which, ultimately, he will have. Here's where my stomach starts turning...

Rewind to a 3 year old Luke. May 13th, 2004. Getting ready for a dorsal rhizotomy. That was to be the be all and end all of his biggest issues. The neurosurgeon was revered as the top peds neurosurgeon in the world. We were assured that he was wonderful. We met him, and felt he was rather full of himself, but hey, he was the best in the world at something... maybe he had the right to be. A very long story short, he or someone in his charge, made a mistake. Luke came out of the 8 hour surgery paralyzed on his right side from the waist down. No one could tell us what happened... Or no one WOULD tell us what happened. We knew someone knew. There were looks between residents and students and fellows that told us they were swearing each other to secrecy. After many days of no answers and brutal testing, they finally came up with an explanation. Somehow, his nerves got overstretched. The good news was, he would heal and would likely get most of his mobility back. And he did. It took a year or so, but he did. I cannot describe to you how it felt and still feels to think about that year. All the uncertainties, all the pain he was in, all the infections and horrible testing... Anyway, just hearing that surgeon's name makes me sick to my stomach. His arrogance never waned, even through the worst of it...

When we met with the surgeon, (this one we know well and trust - he's done several procedures on Luke and has been wonderful since day one) he told us that this was a "one and done" procedure. That when he was done with this, it would be as "perfect as we can make him" and that he would probably not need another major procedure for the rest of his life.

Let me just interrupt myself here and say that if he did not have this done, his ability to walk without assistance would steadily decline and he would be dependent on walker/wheelchair full time within a matter of a few years.

Okay. With the doctor's words being so similar, and the procedure being such a large one, my nerves were already jumping. Then we called for a surgery date. We wanted May 9th. and that was already feeling too close for comfort. They couldn't do May 9th, but offered us May 13th instead. May 13th... ugh.

After a long pause, we decided to go ahead with that date. It's a different procedure, a different doctor, and 9 years later... We can do this. It's just a date, right?

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

PROFESSIONAL HELP

Mar 07, 2013 03:38am (EST)

I've been mulling over the decision to apply for a NICU Family Support Specialist position through my state's MOD chapter. The position has been posted for a really long time, so I wasn't sure if it was really open, or if someone just forgot to take it down. I've been talking myself out of calling to ask about it for a really long time as well, until today. I finally called and found out that the position is still open and if I'm interested in applying, I should send my resume.

Here's where my problem comes in. Resume? I've had exactly 1 job in the last 14 years, and that's in a bakery. And I don't even remember how to write a resume! OMGarsh. I know the qualifications for the job are [formal training] OR experience as a NICU parent. Okay, so I'm qualified, but... then what?

I know you all are super duper intelligent folks... Any ideas or advice for me as far as what to include or not include or... really any help at all would be so appreciated.

Thanks.

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

ERRRGH

Mar 03, 2013 12:12am (EST)

Oh goodness. I read through my last entry again and realized that it may not have made much sense with the title and my health issues, because I left out a good chunk of it. Oh well. I guess the point was made anyway.

So. Beth had her MRI and CT scan yesterday. The doctor called last night. He said that there was primarily good news. What they are seeing doesn't appear to be putting any pressure on nerves and is not likely to be the cause of incontinence and pain. They think that "it" is either a benign cyst or a benign tumor in the bone called a "giant cell". If it is a tumor, it could be fairly aggressive and while it's not cancerous, it could cause bone and tissue damage if it were to be allowed to grow. If it's a cyst, it could also grow, but that wouldn't likely be a big problem. They aren't really worried much about anything right now, and chances are the orthopedic surgeon will recommend that she have another MRI in a few months to see if it's grown and go from there.

So that's what I know.

Thanks for your prayers and spport.

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

BECAUSE THAT WOULD BE BORING

Feb 28, 2013 10:26pm (EST)

Was it only about 2 weeks ago that I last posted? Wow. It seems way longer. I've been abandoning Share once again when it's really the one place I want to be spending the most time on.

My health is on a track that I'd rather it not be on. I'm overwhelmed and frustrated and it is ever more difficult to keep my chin up and look for silver linings through all of it, but that's not really what I wanted to talk about.

Once again, I'm requesting prayers for one of my kids. Bethany this time. She's been having back pain and loss of bladder control for a couple of months. They finally did an MRI yesterday. The doctor called shortly after the test. He said they found what is most likely a cyst on her spinal cord. They aren't able to tell by the images they have exactly what it is or if it would explain the symptoms she's been having. So tomorrow, she has to go back in for another MRI with contrast as well as a CT scan to get a closer look at the bone structures. They also saw some degenerative changes (arthritis) above the area where the "cyst" is. She also has appointments in urology on Monday to make sure everything is working okay there. All of her preliminary bladder/urine tests were normal.

I'm trying not to let myself think about all this too hard. I'm telling myself that there's no real point in worrying about it at all, because we don't even know what the problem is. But a mama's heart can only take so much before it turns on the worry.

So if you should think about it... say a little prayer. I'll keep you posted. Thank you.

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

ROLL WITH IT

Feb 13, 2013 04:02pm (EST)

Since my last entry, I've come to a place in my own mind where I had to stop fighting everything and just ride the waves. There are things that do require the putting up of dukes, but there's a lot in my life that I really don't have control over so struggling and stressing is futile.

Grace is doing well so far since we brought her home. There is some fairly normal teenage rebellion and angst, but she's been safe. She says she thinks the meds are working because she has more energy and feels better physically. I asked her if she felt better emotionally as well, and she says she does not. She told Ben that she knows that we and and others want her to be well and alive and that is the only reason she's still here. She is in counseling and group therapy, she qualified for services through our county Children's Mental Health department, so she will soon be assigned a case worker. That will help immensely... I hope. We FINALLY were able to qualify for medical assistance and insurance through my husband's job also has kicked in, thankfully, so we don't need to worry about money when we're making more appointments. Things are looking up, over all.

Luke turned 12 on Monday. It's difficult to wrap my brain around that. My s-i-l called me out when I was putting candles on his cake and stopped at 11.

12 just seems so... old. When he was a baby in the NICU and even when he was a toddler, the fact that he would be 12 someday just never occurred to me. I just assumed he'd just always be my little baby boy... He had a good birthday, tho. His best friend came over and they played video games, mostly. It was nice to see him having fun with someone his age.

He had a gait study done last week. He was so excited about it. They make a computer animated stick figure of him and he's all about computer graphics and technology and all that. The techs were wonderful and took the time to answer all of his questions in detail. There was a lot of laughing and joking and story-telling. It was great, but made an already-lengthy appointment even longer. (nearly 4 hours!) The techs will get together with the PM&R doctor and the ortho surgical team and discuss which procedures would be best for him. We have an appointment in March to see what they've decided on. We already have a pretty good idea of what they want to do with his left leg - it's the tighter one. They were waiting for the results of the gait study to see what their best option for his right foot/leg would be. The whole thing makes me nervous as this will likely be a major undertaking with a long recovery time. However, it's always a little bit exciting, because it generally means things will be easier and better for him in the long run.

As for me, physically things haven't been the greatest. Back/leg pain have landed me in urgent care more than once in the last couple of months. I had an MRI about 2 weeks ago that showed advanced degenerative arthritis bilaterally in 4 vertebrae, along with degenerative disc disease and grade II spondylolisthesis in one. What does all that mean for me? That I'm in pain. Basically, my doctor tells me that the nerve pain (which is constant and often unbearable) will go away eventually. The other pain probably never will. Honestly, if the nerve pain goes away, I'd be a happy camper and wouldn't give much thought to a simple back ache. For now, I'm on a few different types of meds to help manage the pain... none of it is doing a great job except to make me feel sick and disconnected. I'm also supposed to be walking as much as I can each day. Apparently a recent study showed that walking is as beneficial as physical therapy and chiropractic care when it comes to back pain... and it's free!

I have another appointment next week to see what else can be done. There was mention of a referral to the pain clinic for injections in my spine. I'll try anything at this point. It just plain sucks when you consider it a good day when you can put your pants and/or socks on without help.

Okay. Enough whining out of me. It's a beautiful day - 35 degrees and sunny! I think I'll take my li'l red-haired beauty queen for a walk to the library.

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

AND THEN WHAT?

Jan 19, 2013 10:01pm (EST)

We brought Grace home from the hospital yesterday. I suppose that should be good news, and it is... sort of. She's here, but I'm not sure that there's been any progress for her or answers for us. Basically, what the hospital told us is that they don't know what else they can do for her. She went through all of their "classes" twice. Those classes were the same thing she covered multiple times at the other hospitals. She knows the materials and she could probably lead the group. The difficult part is taking that knowledge and making it work. She doesn't feel better. We are all kind of on edge, not knowing how closely she needs to be watched, and desparately afraid we aren't watching closely enough. We've locked all the medicines and chemicals up, we've taken mental inventory on anything sharp she could use to harm herself, we've set alarms to go off in the middle of the night to check on her... And yet... I know that all of this isn't enough to keep her safe, and in fact, probably just makes her angry.

I've spoken multiple times with another mom I know who has been through this kind of thing countless times and continues to walk through it. She doesn't have a lot of answers, but knowing what has and hasn't worked for them, and just knowing there's someone there who knows this path better than I do, helps a bit.

We understand that one more trip to the ER will more than likely end up in a residential treatment facility. Iptoh hate to think of life that way, but on the other hand, I hate to think of life without my girl. I keep thinking that this has to end sometime. She has to get better. There has to be something - anything- that can get through...

I've lost faith in the hospital setting. It's a good place to keep her from physical harm, but that's about all. My mind keeps wandering to to "what if". I know I shouldn't even think it, but it's there.

What if Grace's friend hadn't come forward when she did? There is no doubt in my mind that we would have lost her... I also "what if" about the presesnt. What if we tries again and succeeds? What if she can't be reached? What if we find her too late? What if we find her? What if Nora or Luke or Bethany finds her? What if we lost her? How would my heart continue to beat? How would I live and still be a mother to the others? How could I go on knowing that all I could think of to do wasn't enough?

I know these are disturbing questions... It's that part of me that has to see the worst case scenario in order to view our current situation as functional. I'm strange that way, I guess.

Maybe I need to adjust my thinking patterns. Maybe "maybe" could have been left out of that last sentence. Maybe I'm just scared.

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

MORE OF THE SAME

Jan 16, 2013 05:28pm (EST)

I cannot begin to explain how badly I want to come here and share good news. My heart hurts that all I really have to tell is more of the same.

Grace is still in a hospital 3 hours away. The doctor, nurses, and social workers are working diligently to get to the bottom of why she feels the way she does. She continues to send mixed messages about where she is, emotionally. There are events in the past that have been surfacing... things that are scary and heartbreaking and confusing all at the same time... I guess we could call it progress, but some must be taken with a grain of salt, because we know that Grace can make things seem worse than what they really are, and stories sometimes get twisted in her own mind... We are left to sort and untwist and try to make sense out things that just don't seem to add up. It feels like putting a 5,000 piece puzzle together when you've never seen the picture.

Talking with the doctor and social worker yesterday, they are continuing to work on cognitive behavioral therapies adding in a positive thinking piece. While they aren't finished working with her, they have also put "residential treatment" on the table.

Being honest, I don't feel like I can keep her physically safe from herself if she comes home. That alone is enough to break my heart.

thank you for being here. Please keep the prayers and good vibes coming. There has to be an end to this. There has to be.

Posted by Page's7 | Comments: (8) | Permalink

MOSAIC

Jan 12, 2013 06:05pm (EST)

I've been trying to gather all the bits of my world of thoughts and feelings and put them together in the form of a blog entry for several days. I don't know if I am ready yet, but... I'm trying.

I'm hurting deeply, as I'm sure you all are, in the knowledge that the St. Clair family had to say goodbye
to Kyle. Though I never met him, I know in my heart that he was a little boy who was made for love. He gave it freely and accepted it whole heartedly. The world was forever changed when he came into it, and has been changed again as he left. Sweet Kyle... We will never forget. We will never give up. We will live life for today. Thank you, St. Clair family, for sharing your boy with us.

In light of what that sweet family is going through, my struggles here sound like nothing much... And yet, there are struggles, unlike any we've ever known. I can't exactly explain what our family is going through without making us sound insane, but I can tell you that Grace is in the hospital again. A place she hasn't been before, once again 3 hours away. It will not help her, but it can keep her physically safe, which we were not able to do confidently. Before, we were worried about her. Now we're scared. We were so close to losing her. We are so grateful for her friend that recognized what was about to go down, and alerted us to it... If said friend would have ignored the signs, we could be in a very different situation now.

I don't know what we're going to do when she's discharged this time. In the past, we've tried to handle things on our own, kept the painful truth inside, put on the happy face... I think that's called foolish pride. I cannot do this alone. We need people. We need prayers. Lots of prayers.

I can't see it all the time, but I know that there's light at the end of this tunnel and all around it, too. I can see well enough to keep moving, but not so well that the darkness doesn't seem daunting.

Thank you all for your love, friendship, support and prayers... and keep it coming, please!

Posted by Page's7 | Comments: (8) | Permalink

WHERE TO START

Dec 29, 2012 10:11pm (EST)

My mind has been so full of several different entries and I'm not sure where to start...

GRACE:

I guess first, Grace was released from the hospital on December 26th. She didn't feel like she was quite ready to go home, but the hospital was pretty certain she was out of immediate danger. I'm okay with having her home. There's a lot to think about now though. Seems like every small decision to be made regarding her is something that needs to be mulled over from every angle. Honestly, it's exhausting and I'm not sure if there's even a need to feel that way.

CHRISTMAS:

Christmas was definitely different this year, and I know it was disappointing for the kids. We didn't have much money or time or energy. I let several traditions drop this year because I didn't really feel like it was Christmas. I cried most of Christmas Eve, thinking about Grace waking up in the hospital on Christmas morning. Every year, we get the kids new pajamas and let them open them on Christmas Eve, this year, we got them the pajamas, then realized that Grace couldn't have hers in the hospital because there were drawstrings on the pants, so we ended up searching the mall right before closing to find some that she could wear. She had a 4 hour pass that night to spend with family. We all went to my moms for dinner. It seemed normal, until I realized we had to drop her back off at the hospital. Christmas morning the other kids slept in quite a bit. We were able to pick up Grace at 11am for another pass. We got her home, and opened gifts, they played games and there was laughter and again, a sense of normalcy... except that we had to keep our eyes on the time in order to get her back on time.

After I took her back to the hospital, we went to my grandma's house. I promised her I would be there, but it was so hard to feel motivated. And then once there, there were lots and lots of questions, comments, and opinions about Grace... I know it was all well-intended, but.... ugh.

LUKE:

A couple of weeks ago, Luke had an appointment in the CP clinic. We met with his PM&R doctor and his orthopaedic surgeon. They agreed that he is not improving with stretching and at this point, no amount of physical therapy is going to make much of a difference. Contractures are contractures and in order to ensure that he maintains maximum mobility in the future, we need to make some forward movement while his bones will still grow and heal quickly. So, he will undergo a gait study and some xrays before we set the surgery date, probably sometime in April or May, or maybe even push it back to summer. They will likely fix the contracture in his left leg by doing a cautious lengthening of his hamstring muscle, breaking the bone just above the knee joint, angling the joint, pining it back in place, and adjusting the tension of his patellar tendon to help keep the leg straight. They are almost certain that they need to do something with his right side as well, but they aren't quite sure what. They will wait until they get the results from the gait study before they decide. While I've been doing a pretty good job pretending that all this doesn't bother me because it's for his own good... the truth is, it does bother me. It scares me just as much as any of the other surgeries. You would think after so many, a person would get used to it... But seeing pain in your baby's eyes is not something a mom can get used to.

A FIVE YEAR OLD:

My baby girl turned 5 on the 27th. It's so hard to believe that she's 5 already, but nearly impossible to remember what family was like before she came along. We managed to throw together a party for about 20 family members. Thank goodness for Little Ceasars Pizza, premade salads, and being able to order a Hello Kitty cake at the last minute. Yeah... I did essentially nothing but clean the house, which took way more effort than it should have. All in all, she doesn't know it was nearly a disaster and she had a good time playing with all her cousins. That's what really counts.

ME:

I finally got to the doctor for the spine xray he ordered. The nurse called with results... kind of. All she could tell me was that the xray showed degenerative changes... I assume that means they compared it to the xray they took 4 or 5 months ago that they said was fine. Nurse failed to elaborate, but told me to enjoy the rest of my day... so... yeah. Haven't had a chance to get a hold of the doctor to see what else I'm supposed to do. In the mean time, I'm taking the max number of all the pain meds and OTC meds I can to try to keep the pain under control. Not working well, besides that, I'm not supposed to be taking alieve or aspirin or ibuprofen because of stomach issues. I've been taking them anyway because they're what works best... As a consequence, my reflux is out of control and I'm coughing up blood. (Oh, stop... it's not that much, really.) Ugly, ugly cycle, and yet, I continue to hobble my way through my work days. Honestly, I don't know why. The job is getting less and less interesting and my paychecks just seem to be getting less and less.

Okay. That was a lot of stuff for one entry. Thanks for listening, Share-land.

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