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Hi Archana. Its good news that Aarambha Jyoti's (what a lovely name and I wondered what AJ stood for) surgery has been a success. I am so sorry to hear he has been diagnosed with being Hypotonic. I hope the nerve test goes well as you really deserve some good news! I hope now they have diagnosed the problem they will be able to help AJ. I do not know so much about Hypotonia but what little I have read (Some disorders have a specific treatment but the principal treatment for most hypotonia is physiotherapy and/occupational to help remedy it. I am thinking of you and the family and I hope all goes well with the test. Love from Sweden Al

Awww, that's tough! At least hypotonia can be worked with. We have been going to physical/occupational/speech therapies for 4.5 years now and my daughter has grown tremendously. And her tone, which I think I said in a previous post, was severe. So severe she required a feeding tube in her stomach. She is not my cranio baby. I hope your test goes well, keep us updated Oh and it's crazy that it's been five months post op! We are that with Jack too!

Hi Alan and KalimomFinally some good news, the nerve and conduction and muscle test went rather well, the doc said he has 'beautiful' nerve and his muscles look great! So yes he is hypotonic but nothing related to the muscle and the nerve. We are meeting a physio therapist on Monday to get some tips and ideas about the exercises before we head home on Tuesday! So smiling again more broadly.

Hi KalimomJust hearing of your daughter makes me think just how strong you must be going through it all.....I am not sure of the quality of PTs back home which makes me worry, but I am determined to get him through this too. I was with a friend this evening who has a boy a month younger than AJ, and there he was this little fella, scurrying around the room in his fours, standing and i have to admit my heart did hurt a bit! But one step at a time...

Glad the results were good. It is tough to see other babies around the same age as your little doing things that your little one cannot do. My daughter didn't start walking until she turned 3 so I definately seen/felt a lot of that. If you can, buy a big ball, like an exercise ball. Those are amazing for therapy. You can lay him on it and roll the ball slightly different ways, encouraging other muscles to work. Sit him on it, doing the same. We have a peanut shaped one which was great too. Both aer great for standing exercises too. We would put toys on the other side of the ball, lay her on it, we would hold her feet, and roll her forward to play with the toys. It helped with her upper body strength. For standing, we'd put some toys on a bench, stand her there, (us sitting behind her) and we'd hold her ankles firm. She would protest a little bit but the toys became a distraction from what she was doing. We used to call all of her therapists "terrorists" because she screamed a lot, it was hard work. There was not a dry eye in the room when she started walking after 3 years of intense therapy. I am sure you can find a website that would show good exercises to do for AJ. Take care, and yes, one step at a time....

Hi KalimomThanks so much, it feels so good to talk to someone who has been through this. It's really very reassuring. We reached home in Nepal today so will have to start the exercises religiously now. We do have an exercise ball, and your tips are great, thank you again so v much. I haven't been able to website as such with explicit exercises mentioned but I will try again. Thank you so much again. How old is your girl now? How is she doing?

Our little Elsa is doing great. She just turned 5 on June 16. Looking back on her pictures from birth til now, you cannot see the same girl. She now runs, there is no holding her back at all! She starts her first year of regular school in the fall and is right with her peers. Here is a YouTube video http://www.youtube.com/watch?v=Q_r5n0M44BM -that is a down syndrome baby on a ball doing exercises I wrote about. You can search You Tube for infant or pediatric physical therapy. Also google infant physical therapy exercises. You can see I am an advocate for physical therapy, I think that anything YOU can help your baby with doesn't hurt! It is hard work for them but once they get used to it, it's not so bad and they notice that it's a help. Take care, feel free to private message me for any other questions!