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  • #46
    Lura,
    I know some of you feeling about these little imps. Crystal would deliberately drop something and then look at me as if to say "GET THAT PLEASE." Oh, what a poop.

    Glad to hear Alex's incision is okay. Keep a close eye on it.

    Well, we had an FFA banquet tonight, so am kind of sleepy. Talk more later.

    Love and prayers.
    'til later,
    Nikki

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    • #47
      Hey Lura
      Glad To Hear Alex Incison Is Good. Nicoles Is Looking So Good All The Strips Are Off As Of Yesterday. Last Night Was A Night We Will Not Forget Any Time Soon. Nicole Was Stuffed Up Trying To Blow Her Nose Crying About Being Stuffed Up Up Til 4:00 Am. She Finally Just Passed Out Me Too. Woke Up This Afternoon Fine So Hopefully Tonight Will Be Better. Nicole Is Also Getting Away With A Lot And Getting The Best Of Me Last Night I Told Her I Was Going To Put A Pillow On Her Face If She Didn't Clam Down. Yes I'm Losing It Her Dad Came Downstairs Thank God And Saved Me From Killing My Nicole {the One Who Makes My Heart Shine}. Nicoles Girlfriend Came Over Last Night And She Bend Down And Picked The Dog Up She Said It Hurt. So I Know What You Mean They Told Her Not To Bend Over Or Turn Her Head She Has To Turn Her Whole Body With Her Feet. Maybe A Large Bubble To Keep Her Back Safe. So Now We Worry About This Till The Doctors Appointment. We Were Going To Get Her Brace This Week Now I'm Going May 2 To Pick It Up. My Doctor Is Going Away For A Month To Help Kids In Ghana So Hes Been Busy He Spoke To Me On Friday And Made Me Feel Ok About Her Not Having The Brace Yet. Her Ribs Are Feeling Better So I Guess I Wont Feel So Bad Putting The Brace On She We Her Another Week To Heal.
      Theresa
      THERESA

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      • #48
        Theresa,

        I am soooooo glad Nicole is finally feeling better!! Isn't it nice when those steri strips fall off?! Alex is a complete "shit" since he is feeling better, and sadly it is okay with me, I am so relieved he has handled everything so well! Tonight he was standing on his bed, ready to jump up and land on his butt, it totally freaked me out!! I am going to be very old when all of this is over. I am a 37 year old mom and I feel 57!! The only problem Alex seems to have at this point is when I get him going too early in the morning, he tries passing out! He isn't a good breakfast eater, so I think it has to do with an empty stomach and pushing him too fast first thing. Scott thinks it's due to the blood he lost in surgery and his body is still trying to resupply itself? I don't know, but it drives me crazy!
        Any way, can you believe we are both just almost 4 weeks post op? Thanks for posting, Theresa! Give Nicole a hug!

        Lura

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        • #49
          Hello Lura,
          Just wanted to say Hi! I'm glad Alex is doing fine, gives me hope for Marisa when her surgery comes up. You mothers on this site are great you have given me so much peace reading these posts. Marisa's surgery is coming up May 18th. I will keep in touch with all of you. I'm amazed that I have not been able to find a child with the same hanicapps as Marisa. She is totally dependent on me for all her care. Really can't explain surgery to her at all. Well maybe I will be able to help somebody at a later date.

          God Bless Risa
          Risa the mother of a 11 year old girl. She has CP, Coritcal visual impairment, non verbal, non mobile, total spinal fusion with 4 screws at the base. God's blessing

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          • #50
            Hi Lura
            Not been on for a day or two - still no home computer. I really miss not being able to come on whenever I want to. However, Jan is installing the new disk as I type though so should be up and running again in a day or two. Meanwhile, as he can't do two things at once, I've kidnapped his lap top.
            Glad to hear Alex's incision is OK. They just do these things to make sure we're paying attention. Like Christopher Robin said "Now, what can I do to amuse them today?" after he'd had wheezles and sneezles and possible meezles. The passing out must be scary though - have you asked anyone about that? Would he go for a picnic in bed before he gets up, maybe? If he thinks it's a game instead of breakfast maybe he'll eat.

            Hi Theresa,
            Glad nicole is feling better. It's always a good sign when they start feeling well enough to be a complete pain! Even if you sometimes think it's a question of who kilss who first!

            Hi Risa
            I'll be thinking of you come May 18th. I do know what it's like to have a child who is totally dependent although Genevieve does have some understanding of what's going to happen to her. Megan's Mom is in the same sort of boat as well. I wish we could be some help to you but I guess all we can do is keep praying for you . We will do that.

            Love to all
            Lorrie

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            • #51
              Risa,

              Welcome aboard! Tell me about Marisa's developmental issues. If you've read through these, you know Alex has Down syndrome. There was no explaining the surgery to him either. People said maybe it's better he has no idea and I didn't agree before the surgery, but now I think there is some truth to it. Alex has done remarkably well, very little pain meds the first few days, and he has adapted to his new limitations miraculously! I am amazed daily! If you are anything like me, the worry before surgery was far worse than the actual surgery! It should all be fine!!

              Lura

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              • #52
                Lura,
                I winced when you said Alex was on the bed about to bounce on it in a sitting position. You won't believe this one. I went to pick my girls up from school today. Here came my 16 year old Crystal, galloping down the hall to me. Talk about put my heart in my throat. I asked her to please slow down. Her history teacher caught her shooting baskets yesterday and told her she wasn't released by the doctor yet to do that. At least I know the teachers are watching her. She told me about it and said "The ball only weighs 7.6 pounds and the doctor said nothing over 10 pounds." Now, how do I answer that one. At least she had her brace on. I am so glad all of the kids seem to be feeling better.

                Love and prayers.

                'til later,
                Nikki

                Comment


                • #53
                  Oh Nikki,

                  How bad is she trying to "bend" the rules (no pun intended)??? It's one thing to PICK UP a basketball, but the jumping and twisting to SHOOT the thing is more damaging that anything. Silly kid! Good thing she had her brace on. I'm glad she's feeling well, but she's got to be careful not to do anything to disrupt that fusion process. She does NOT want to deal with failed fusion issues later down the road. Too bad they have to be normal, active kids! LOL

                  Keep up the good work!
                  Carmell
                  mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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                  • #54
                    Carmell,
                    Her dad is working hard, right along with me, to keep her slowed down. I just don't know how much longer she will stand for it. She is way to athletic to have to come to a stop now. She was pretty satisfied just going and watching a track meet today. It was cold and windy, so she spent time huddling with her friends.

                    Her dad and I are going to try to employ her to do the books for our business this summer. It will keep her busy and she will get a paycheck. So, maybe that will slow her down a little.


                    I think she was actually shooting from the free throw line faced up to the basket and feet planted on the floor. That's how she usually shoots from the free throw. I hope she doesn't keep trying to "bend" the rules, or we are going to have to glue her hands and feet down.

                    I'll keep you posted on how she does.

                    'til later,
                    Nikki

                    Comment


                    • #55
                      All I can say is GOOD LUCK, Nikki! I so hope she doesn't do anything to disrupt that fusion... not a good thing. But, you can only remind her and hold her down so long. Kids... sheesh! LOL
                      Carmell
                      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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                      • #56
                        Other than short of tying her down, I don't know what to do. She wears me out sometimes just watching her. I guess all I can do is keep reminding her of doctors orders and pray a lot.

                        'til later,
                        Nikki

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                        • #57
                          Thank you for your inspiring words of confidence. My daughter will be undergoing the surgery in late may, needless to say, I am a bundle of nerves, always thinking of the "what if..." I want to give my 16 year old encouragement, but it is SSSSOOOOOO hard as a mom to have your child be in pain and have to undergo this or any surgery. But again, thank you for your positive words.

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                          • #58
                            Hi there girls!

                            I have had quite the past week! Alex ran a fever on Thursday of last week along with continued swelling at the base of his incision, so I called Shriner's and they wanted us in Spokane Friday. So off we went, they ran blood tests which showed infection so then aspirated the base of his incision (not fun for any of us). We were then admitted for observation and to await the results of the aspiration. We were released Sunday afternoon since the culture showed nothing. Now he has this awful cough and fever, so I guess this was the bug that was working its way out. Does this ever end??????

                            One of the resident doctors told us they would have to open Alex up again, take out the hardware and clean it and put it back - I freaked out on this imbesil (sp). I must say say that the 3 residents I have dealt with at Shriner's have sucked!! Anyway, I am now completely drained once again!

                            Enough venting! How is everyone doing??

                            Later,

                            Lura

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                            • #59
                              Lura,
                              Crystal had some redness and drainage in her incision. She, too, was running a fever. It ended up being bronchitis and just had to do its thing. I was so worried about having to put her through surgery again so soon. I am glad Alex is okay and it ended up being his cold. Sorry you had a tough time with the residents. Crystal's residents have been great to listen too and seemed pretty knowledgable.

                              Give Alex a hug and tell him I am glad SUPERMAN is better.

                              Good luck to you on your move. We may have to move again. I have an incredible job offer in Baker City. It's to far for me to drive daily. We have to decide if this is what we want to do. Craig could keep his current job, since he travels everyday anyway. But, I am settled into this house and don't know what I want to do. I have my horses home and the girls have their breeding ewes home. Moving our household is such an undertaking. The extra money would be great, and the job pays great. I don't have to make a decision right away. I have a couple of months to make a decision. Maybe it will all be answered by the guy upstairs.

                              Love to you guys.

                              'til later,
                              Nikki

                              Comment


                              • #60
                                Hi Lura,

                                I am so sorry to hear about your little guy's infection. That was my greatest fear when we were recovering! Sorry too about the resident scaring you like that. Send a letter to the hospital, because that guy (AND HIS BOSS) need to know how that made you feel, and how upsetting it was for you to get bad information like that. It will help him be a better doctor someday.

                                Nikki,

                                It is always tough to move. I would suggest a family meeting. Let the kids and hubby have their say, and go from there. I've passed over two opportunities, and acted on one in my carreer, and each time it was a family decision, and it worked out for the best!
                                Susanna
                                ~~~~~~
                                Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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