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LUCKY LUKE
Page's7 |
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NO GO
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Jul 19, 2010 11:32am (EST)
Just a quick message to those who've been wondering... Unfortunately, I won't be able to attend SU this year.
With the death of my step-dad came responsibilities that require two trips- one to accompany my mom to VA with his ashes for a proper burial and one to FL as a stand-in for him with my mom as she takes Luke for his turn at Disney World. One will be in late Sept. and one in early November.
Words can't describe how badly I want to see everyone again, but this is the way it is, and there's nothing I can do about it  .
God Bless
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Posted by Page's7 | Comments: (4) | Permalink
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CALEB JAMES
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Jul 02, 2010 08:12am (EST)
Caleb James arrived at 6:14p.m. yesterday. He weighed 6lbs. 11oz., 19in. long.
It seems very quick for a first labor- even with the pitocin! They started it at 12:40. Momma and baby are both healthy. She told me he nursed for 40 minutes straight!  Wow! None of my kids were good- or ABLE to be good eaters right off the bat, so that seems absolutely amazing to me!
Leave it to a mom who knows too much to find something to be worried about... My brother has a cold. 
I didn't say anything, but I was cringing inside the whole time... Praying praying that his germs don't go any farther!
But, all that aside, he's just the most precious li'l peanut! And holding him was heaven on earth!
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Posted by Page's7 | Comments: (3) | Permalink
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IMPATIENT
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Jul 01, 2010 11:40am (EST)
My brother called me this morning and told me that his wife was scheduled to be induced at noon today. I'm SOOO excited to finally get to meet this baby. I was going to wait to blog until after the baby was here, but I just had to get it out.
Please pray that everything goes smoothly! (and quickly, because this lil baby has a very impatient auntie!)
 
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Posted by Page's7 | Comments: (2) | Permalink
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HERE IT IS
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Jun 25, 2010 06:50am (EST)
I must have started at least 5 non-Share blogs over the years, but never kept up with them. BUT... in light of so many of my Share and Non-Share friends going out into this big world to blog, I thought... Why not? I'll give it another shot. So I did.
http://www.lifeunprecedented.blogspot.com - If you're interested.
If you think you've seen the end of me, Shareworld, you are wrong. This is still my "safe" place, and you are still the only family I have that truly "get's it".
Also, I have to apologize again for not seeming very supportive. I have been keeping up as much as I can with everyone, but have not posted. But I want you to know that you are all in my thoughts and in my heart and prayers all the time.
Blessings, Friends!
P.S. Say a little prayer for my sister-in-law and my soon to be born nephew, please. She's been on bedrest for the last few weeks due to high blood pressure. Not too terrible, but we know things can progress quickly. She's due the 17th of July. They won't let her go past the 10th. So... really any time now. Thank you!
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Posted by Page's7 | Comments: (5) | Permalink
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TOUGH STUFF
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Jun 02, 2010 06:32am (EST)
My stepdad (multiple myeloma x8years) has been in the hospital for the last couple of weeks. For the past few days (seems like forever) he's been going downhill. Up until about Saturday, there was still talk of sending him on a Angel Flight to Seattle for a stem cell transplant.
Truthfully, everyone knew that he probably wouldn't ever be well enough to have another transplant, but he held on to hope, and we figured that if that hope was keeping him going, so be it.
Putting all of the nastiness of the past couple of months aside- much of it was induced by certain off-the-charts bloodcounts- he's become much more like himself attitude-wise and in some ways even better. That's a huge relief.
His talking is very slow and difficult to understand. Much like talking to someone who's had WAY too much to drink. He knows what he wants to say, but in most cases, what comes out is a random assortment of words. About half the time, we can get the gist of it, but the rest is kind of lost. Sometimes what comes out of his mouth is so funny, even he laughs at it. And he looks at us and says "Why did I say that?"
Monday and yesterday were particularly hard. Monday is when he REALLY started going downhill- so quickly. I was going to go to the hospital and visit and my mom called and asked me to pick up KFC for them. He said he wanted that for supper. Well, he hasn't eaten anything for weeks, so whatever he feels like is what he gets. I left my house, stopped at their house to do something else my mom had asked, picked up the food and went to the hospital. By the time I got there, he looked at me with kind of a confused look. Said "hello" with very slurred speech, and before we even got his food out, he was just sitting staring. My mom had to feed him because he couldn't hold on to anything. Then we'd have to remind him to chew. He would chew, but then we'd have to remind him to breathe. He would breathe, but forget to chew again and on and on it went until we eventually just had to fish the food out of his mouth and give up. By the time we got him back into bed with his CPAP on, he was out. Mom left to go home and get some things and I stayed with him. I noticed that he seemed to be struggling to breathe- even with the CPAP. He kept desatting and taking only about 7-8 breaths a minute. He was sweating profusely. I called the nurse in and she said he'd been doing that the night before, but not to this extent. She called respiratory therapist, who called the resident, who was asking me all kinds of questions I didn't know too much about. Jim is DNR, DNI... They kept saying that... So they were limited on what they could do for him there. They drew blood gasses, and depending on the results, would consider putting him on a BiPAP to help him breathe easier, but they'd have to take him to the ICU for that, and my mom and I needed to discuss if this was something he'd want. He was completely unresponsive at the time.
I called my mom, who was on her way back anyway. Blood gasses were pretty normal for him. They ordered more blood tests and a head CT. We called friends and relatives who came quickly. My oldest brother booked a flight for the next day.
When they were transferring him from his bed to a gurney for the CT, he opened his eyes. By the time he got back from the CT, he was a little more awake. Had some color back in his face. By the time my brother and sil and I left, he had said all of our names and even looked at my sil's preggo belly and smiled.
Yesterday, he was even more awake, and had wanted to discuss the stemcell transplant with the doctors and my mom. They told him that there was basically no hope that it would prolong his life in the event that he even survived the procedure. He accepted that.
So he was very emotional. Wanting to talk to my brothers and I alone. The words he wanted wouldn't come to him, which made it that much more difficult for him. When he spoke with me, he tried to tell me that the doctors said he was done now. That he wasn't going to live much longer. He cried throughout the conversation and so did I. He got so frustrated. He just looked at me and said, "There are words I want to tell you..." Sheesh. It's been a rough couple of days...
He also wanted to see the kids. I took them last night and he looked very good. He was in good spirits. He was a bit cofused, but was also trying to make jokes. Very funny ones when the punchlines were so random!
I had prepared the kids by telling them that Grandpa was a little confused and his words got mixed up. Also that he was emotional and he may start to cry, and that it was okay for them to cry, too. It all went very well until just before we left. He wanted them to gather all around him. He said, "I have to tell you my story now. You know I've been sick for a long time..." and with that the tears came. "I'm going to.... we're going to be together again... in heaven..." The kids were all weeping by then, as was I, and He. "I love you all... so much...." And he hugged each of them and told them ways that they can be reminded of him after he's gone. "There will be things you see and hear that you think of me. I'll be there then."
"Some people don't get to cry. They don't get to say goodbye. They don't say 'I love you'. We're lucky."
Oh, Lord. It was heartbreaking. It still is even as I type it...
My brain is mush. I picked up my oldest brother from the airport yesterday. My grandparents are driving up today... It seems that the rest of life has been put on hold for now, but things still need to get done around here... I feel like I'm letting people down because I can't do enough here and I can't do enough there...
I guess since we've had so long to prepare for this, somehow I thought it would be easier...
Sorry this was so long... And sorry if it's all over the place.
Thanks for listening, Share.
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Posted by Page's7 | Comments: (7) | Permalink
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EASY FIX
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May 27, 2010 12:28pm (EST)
Yesterday Luke's case manager from our Children's Mental Health Department was here. We were approved back in Dec. or Jan. for a consumer support grant to pay for services/equipment that would not be covered by insurance. Not long ago, as I've written before, we've at least temporarily discontinued both the services that we were using the grant for.
I haven't thought much about it until his case worker asked what we thought we'd like to do with the remaining grant money.  I hadn't realized that it was just kind of hanging out waiting to be used. As it turns out, this is pretty darn good timing as my husband and I have spent this week wondering how we're going to make our house more accessible for after Luke's surgery. We've actually been talking about how we're going to make the house more accessible since we bought it.. but especially this week. 
The case manager told us that the grant is there to make Luke's life easier, so basically anything we need to do to our house that would make it easier for him is a perfect way to spend the grant money! I'm thinking we'll have enough to build a permanent LEGAL ramp on the front of the house (one thing we've been missing about our old house), and have enough to make one of the bathrooms accessible (which we've been needing to do anyway seeing as how he's 9 now and pretty much needs as much independence in that area as he can get). So... woohoo!
Also, I finally got up the nerve to call and schedule his surgery date. I'm still waiting for a confirmation call, but it looks like Aug. 9th. I kind of wish we were scheduling him sooner just because with every passing day, I get a little more nervous about it. Last time he spent more than an hour and a half in surgery, he couldn't walk for a year. And of course.. perhaps even more than that is the general risk of general anesthesia... He's been under more times than I remember in his li'l 9 years, but it still turns me into a blubbering wreck. 
It seems like so long since I've gotten to comment on all the other blogs... I'm going to try to get a start on that now. Thank you Share Friends, for being here, even when I'm not...
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Posted by Page's7 | Comments: (3) | Permalink
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THE BLAME GAME
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May 25, 2010 08:43am (EST)
I've spent a lot of time on Share and out there in the real world telling parents that it's not their fault that they lost their baby or that their baby was born early, or with birth defects. I've told them that there was nothing they could have done to stop it. That they did everything they could for their child. And I meant every single word of it, and I would not take it back. It's true. Parents- moms especially- take on so much undeserved guilt...
But. Those words don't apply to me. Especially not on days like today when the weight of everything that Luke's prematurity has resulted in sits heavily on my heart. Reminding me that all of this could have been avoided.. if only.. Luke could be living life like a 9 year old boy is supposed to. Without physical limitations, without "surgical tweaking" of his bones and muscles. Without social barriers - If...
I'm not writing this because I want you to tell me to stop blaming myself. I don't want or need those words. They are not of comfort to me. I don't walk around my life constantly thinking about how I've done my children wrong by having them early. I've accepted the guilt as part of my journey. It's been there. It always will be. No amount of therapy is ever going to make it go away. The best I can get is when God's grace answers to those sullen reminders. And, thankfully, I know that God wins in the end.
Some day maybe forgiveness and grace will outweigh the guilt indefinitely and it will just fade away... maybe... But for now- here it is.
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Posted by Page's7 | Comments: (5) | Permalink
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TONGUE TIED
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May 24, 2010 02:44pm (EST)
There is SO much going on in my brain and life at this moment that it's impossible to put all into words... So I'm just going to be safe and stick with Luke's CP clinic appointments today.
We started at 9am and finished at 3pm. That's a long day to have to drag around Nora and a not-feeling-too-hot-yet Grace, but we made it!
So to make a very long day's story short, Luke will be having surgery sometime soon (we're thinking early August to work around his camp schedule). I don't remember what the technical term is for the surgery, but they'll be cutting into his right shin bone, rotating it and putting it back together with a plate and some screws. Inpatient procedure, usually 2-3 days in the hospital. He'll be non-weightbearing for 4-5 weeks, then in a walking cast for another month or so. Not being able to bear weight means several kind of big changes for our household, but I'll talk more about that later, I'm sure.
The surgeon was willing to put this off yet again, suggesting that he couldn't see where it was hindering Luke too much. This is where my mama bear instincts kicked in, and I explained just exactly how it was affecting him, and more over how I was concerned it would further affect him if they didn't do something. After all this the surgeon told me that he felt that my feelings and concerns were valid and it would make complete sense to go ahead with the procedure whenever we were ready.
So there. 
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Posted by Page's7 | Comments: (5) | Permalink
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APPOINTMENTS
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May 21, 2010 08:28am (EST)
I took Bethany and Nora to the doctor yesterday. Beth needed a wart removed- blech! It's huge and has been on her toe for several months. Poor thing. And Nora needed a blood lead test because the insurance company has been hounding me about it for about 6 months now. grrr. Our *doctor* said he really didn't think she needed another one, but ordered it anyway. AND I also had him look at her li'l toes/feet. *Just for the record.* He said that while it's probably nothing, he would feel better if we saw orthopedics. His thought was that they may want to do something now while things are still pretty flexible to help the bones to straighten out as she grows.
Luke's big appointment is on Monday. I'm getting a little nervous about it. I'm afraid they're going to tell us they want to wait it out more. "See what happens in a year." If I hear that... arrgh. I'm just so tired of the waiting and ready for some forward motion. To me, we've been just getting by. Working with what he's got. That in itself isn't a terrible thing, I guess, but... He gives his best every single day, and I feel that he deserves the best that we and the medical community can give him...
I guess that's what's on my mind right now.
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Posted by Page's7 | Comments: (4) | Permalink
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