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Cancer Killer - Dean's Thread

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  • Cancer Killer - Dean's Thread

    CK - Any chance you can start updating us on Dean's progress in this Forum? So many of us here have been rooting for the little guy and I was wondering how he's doing.
    Area 51M 7700

  • #2
    Yes CK...that would be great..if you have a few extra moments, please keep us posted.....

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    • #3
      Good idea spaced, hopefully ck will come bringing good news.

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      • #4
        Yes please!

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        • #5
          Sure thing. Been a little busy at work so I just saw this one. Anywho....

          We took Dean to an Opthamologist a couple weeks ago as he is favoring looking to his left and is still looking up more than anywhere else. The doc said that his eyes are put together properly so there is no physical defect that could be causing it. Dean is, however, delayed in his visual development by about a month. The doc said at this point it is something to watch, but his visual development could catch up all on its own and they won't intervene with any type of therapy (there is a type of visual therapy ala physical therapy for kids and adults) until he is past 6 months old. So we go back to see him at the beginning at the end of July. However, in the 2 weeks since the appointment, Dean has begun to look down more and is looking around alot more so we are hopeful that he will continue to improve. As a general rule babies develope one thing at a time, so the more physical developmeny they do, the less verbal or visual. Dean is doing very well with his gross motor development so that could also be playng a role in the delay.

          We saw the neurologist this past Tuesday and he noted the same visual delay, but looking at Dean's MRI his left preference is not due to the injury they saw after he was born. The opposite side of the brain controls the direction he is looking - the right side as he is looking left - but the injury is on the right side. In addition, Dean isn't smiling much, but he isn't a blank slate, he changes expression just not a smile. It is most likely related to the visual delay as he is just starting to look at faces. So smiling at Mom, Dad, and big bro should come in time. Finally, Dean is still a little "jittery" - he has little shakes that are related to the brain injury. They have gotten better overtime so hopefully they will continue to improve and go away all together. The concern with "jitters" is there is some lasting injury that cannot be healed and would be classified as Cerbral Paulsie. However, nothing is set in stone until Dean reaches a year of age. So its more wait and see how he does.

          He still is getting Physical Therapy every 2 weeks and his gross motor skills are all progressing as they should. Also we saw the pediatrician Wednesday and Dean is growing well - following a nice growth curve for all the necessary stats of height, weight, and head size.

          So overall he is doing well, but we are seeing some visual delays, that may or may not be problematic. Being a scientist kinda sux as I can get my hands on alot of info easily and cannot live in a blissful ignorance just hoping things will get better. So I'll share my findings with all of you: If Dean were to continue to only look out the left side of his eyes, and not the right it can lead to loss of the left side visual cortext in his brain. Inorder for the visual cortext of the brain to develope properly a baby needs to use both sides. Looking only to one side would not stimulate that side of the brain (remember the left visual cortext controls right side vision) and it does not develope. Essentially don't use, don't need to have it around type of thing. SO if things do not change Dean would essentially be blind on the right side of his visual field. Now it takes close to a year of life before this happens so Dean has plenty of time and since we know to watch for it we can do things to help him correct it by approaching him and speaking to him from his right as well as place toys and such for him to look at on his right side as well. As I said above, he is beginning to do more with his right side vision, so hopefully we can keep that up and this will be a non-issue.

          In July, there is a NICU follow-up exam that is a rather long (2h) and intensive which will give us a much better idea of what is going on. Luckily even something found then can be addresses so we will keep working, praying and hoping for the best.

          Thank you all for your thoughts and prayers. It's nice to know you all are thinking about Dean.

          CK
          You know Hobbes, some days even my lucky rocketship underpants don't help.

          M17X Black Metallic- Intel Core2 Duo T9600 2.8 GHz, 6 GB RAM 1066MHz, 17.0 WUXGA, 1GB Dual GTX 260M SLI-enabled, 250 GB 7200 rpm HD, 8X Dual Layer DVD Burner, Windows7 Ultimate 64bit.

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          • #6
            Thanks CK, you know we're all pulling for your family...


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            • #7
              Thanks for the update, CK. Sounds like you and your wife and the doctors will be right on top of his progress and that is great for Dean. All the best.

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              • #8
                Thanks for your update - we are all pulling for Dean. It sounds like he's coming along well. He's got a loving and supportive family.
                Area 51M 7700

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                • #9
                  Another update on how Dean is doing. Some might be a repeat...

                  Overall, Dean is doing quite well. He is growing and gaining weight just fine. He has had no seizure activity that we have seen, and he is a fabulous night time sleeper (usually 9 p.m. to 5:30 a.m.).

                  The physical therapist sees us 2 times per month. Dean did have tight muscle tone, but we have pretty much worked through that. His movements are still somewhat "jittery"--especially his arms. But, that is a lot better than it used to be. The P.T. is helping make sure he meets his developmental milestones.

                  Dean does have a developmental delay with his vision. He saw the pediatric ophthalmologist at 11 weeks old and at that time he was tracking and visually acting more like a 4-6 week old. It is still hard to get Dean to track and look at something in particular, but he is doing a lot better in the past 5 weeks. His eyes are physically put together correctly, so we pray that he is just a bit of a late bloomer with his vision. We will see the eye doctor again in late July.

                  Dean had another EEG last week and we are very pleased that it is COMPLETELY NORMAL!! This does not mean that the brain damage is gone (we can only see that with an MRI), but all areas of his brain are active--which they were NOT while he was in the NICU. He will take 1/2 of his phenobarbital dose for the next month, and then stop the medicine completely on June 8.

                  There are 20 skills on the 3 month milestone checklist and Dean can do 17 of them. Two that he can't do are related to his vision--so hopefully he'll catch up later. The other thing is that he doesn't smile like he should. He does smile sometimes, but not as much as he should. Maybe he is just a laid back, thoughtful guy, or maybe since his vision is delayed, he'll smile more when he sees something to smile about. It would be nice to have him smile at us more. His language skills are a month or 2 ahead of schedule. Yes, we're pretty good talkers around here.

                  We are very pleased with his progress, but we still worry a lot. We just have to wait and see how he develops in the next year and pray for the best. Thank you so much for all of your support and keep up the prayers.
                  You know Hobbes, some days even my lucky rocketship underpants don't help.

                  M17X Black Metallic- Intel Core2 Duo T9600 2.8 GHz, 6 GB RAM 1066MHz, 17.0 WUXGA, 1GB Dual GTX 260M SLI-enabled, 250 GB 7200 rpm HD, 8X Dual Layer DVD Burner, Windows7 Ultimate 64bit.

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                  • #10
                    hey vision is always fixable later on in life...glad to hear everything is going well. keeping your family in my prayers.
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                    • #11
                      Much love and healing prayers to you and yours.

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                      • #12
                        Great news CK!


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                        • #13
                          That's awesome CK, I'm so glad to see he's making that kind of progress. Hopefully he can keep it up, seems like he's well on his way.

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                          • #14
                            Dean keeps getting better and better - he obviously has a family that is spending the time and effort to keep him moving forward. I hope his vision catches up with the rest of him soon.

                            BTW, of the 20 skills, I could probably do about 5 of 'em, so Dean's already got me beat.
                            Area 51M 7700

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                            • #15
                              can dean play CSS?

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