Well my baby boy is now 6 1/4 years old. Winter time has been a lesson in patience. Fear that his inattentiveness would further hold back his learing we put him on ADHD meds. While they do help, the side effects sometimes manifest in an unwillingness to eat, sleep issues..which become sleep issues for us both, and picking at the fingers. The other issues seem to be taking care of themselves but his poor fingers are paying the price.
Hearing is an issue again, the tube in his good ear has come out and his ear is filled with fluid and his hearing aid mold is too small and is getting feedback so therefore he can't wear it either. He takes atvantage of this and has become about the orneriest and LOUDEST boy i have ever seen or heard. He repeats everything over and over and says what when we are two words into answering him just out of habit. We are all about to go crazy. Thank God for "Uncle Nut".
Lukie LOVES Nut! He follows him everywhere - we have had to crack down on bathroom prvacy time and whenever he accomplishes anything he can't wait to tell "my buddy, nut".
Nut/Jim told Luke, "Draw me a picture of your most favorite thing, anything, color it for me and when I get done I am going to come over and you are going to show it to me - whats your favorite thing, Luke?" Luke answers, "You" awww....
Luke has finally begun to lose some teeth as the adult teeth are pushing the babies out of the way - but not before they are all twisted and contorted into funky directions. He has lost 3 and it is so cute to see him with a front tooth missing. He is getting so big!
Kindergarten has been an adventure, especially for his teacher who has 6 boys and no girls. He is learning well and seems to be doing only slightly less than his typical peers. I am so pleased with his progress.
I am so proud of my guy, for all of his frustrating moments, he is so sweet - i am too tired to be anything but greatful :)
Hearing is an issue again, the tube in his good ear has come out and his ear is filled with fluid and his hearing aid mold is too small and is getting feedback so therefore he can't wear it either. He takes atvantage of this and has become about the orneriest and LOUDEST boy i have ever seen or heard. He repeats everything over and over and says what when we are two words into answering him just out of habit. We are all about to go crazy. Thank God for "Uncle Nut".
Lukie LOVES Nut! He follows him everywhere - we have had to crack down on bathroom prvacy time and whenever he accomplishes anything he can't wait to tell "my buddy, nut".
Nut/Jim told Luke, "Draw me a picture of your most favorite thing, anything, color it for me and when I get done I am going to come over and you are going to show it to me - whats your favorite thing, Luke?" Luke answers, "You" awww....
Luke has finally begun to lose some teeth as the adult teeth are pushing the babies out of the way - but not before they are all twisted and contorted into funky directions. He has lost 3 and it is so cute to see him with a front tooth missing. He is getting so big!
Kindergarten has been an adventure, especially for his teacher who has 6 boys and no girls. He is learning well and seems to be doing only slightly less than his typical peers. I am so pleased with his progress.
I am so proud of my guy, for all of his frustrating moments, he is so sweet - i am too tired to be anything but greatful :)
2 comments:
My daughter is going on 33 weeks pregnant. Last week at a 4-D ultrasound, the tech thought they saw something wrong with the baby's brain. Her OB wanted her to come in to confirm, so we did. He said it looked like Dandy -Walker with hydrocephalus. He is sending her to a perinatologist Thursday this week (in another city to confirm- go over details, etc. ) (There is also a Children's hospital in that city-1 1/2 hrs away. (The Neonatal unit in our town is excellent, but we want to know what is best -where she should deliver, etc. Any questions we need to ask? She and her husband are young- he is 20 yrs old and she is 18 yrs old. She is TERRIFIED the baby is in pain, she did something wrong, he is getting worse-the longer he stays in, she can't have kids again, she is depressed- doesn't want to hear anything about it until Thursday. When her husband goes to work, she comes over here- she doesn't want to be alone. (She is SO VERY upset about this. ) It is hard to comfort her. My way to do it is to research everything about it I can! Can someone give me any info!
Thanks!
Elizabeth Williams
P.S. I have been to DWS Alliance site and HA site and got that info. Maybe I need info about what people's experiences are. (My daughter has Medicaid.)
Please email to:
elizabeth@battletroll.com
Best way to reach me!
Hello!
I am 23 and was born with Dandy Walker Variant and hydrocephalus and I write a lot about my experiences with these in my blog.
I don't think I required much special education or physical therapy assistance until I got a bit older. The effects of DWV won't necessarily become apparent until your son gets older and also the impact of the condition can vary throughout his life. It would be helpful to have him assessed for mobility and learning disabilities now to see what his needs might be.
Sharing his experiences publicly like this is unethical: I really don't think I would have wanted my mom to share my difficulties with the world wide web. And I certainly wouldn't like it now to have had this all on record and out in cyberspace, or to know now that people read about my problems. It's hard enough to be monitored for signs of difficulty in private. Being exposed publicly would make it so much worse!
You are conditioning your readers, especially those who know you personally, to expect that your child will or might have problems. Expectations are a horrible burden. I'm glad that you've at least focused on HIM and not his disability, but your son has no say in this or at least doesn't understand the repercussions of this being public.
I hope my criticism hasn't overshadowed the insight I offered at the beginning of my post. I truly just want to help.
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