I just wanted to post a happy (for us) - DS5's energy level seems to be getting better!

[AimeeM]

We were REALLY concerned about Nico's energy level - for a 5.5 year old, he seemed very lethargic, has dark circles under his eyes, complains of pain, etc.

We're still pursuing reasons with the geneticist and his primary special care team (cardiology, pulmonary, endocrinology), but he seems to have a LOT more energy lately! It's so nice to see! I've also posted about how much Nico loathes being outdoors... while he still loathes dirt (and bugs) and too much sun, the cool (but not cold) days have been GREAT for him.

Big sis has been taking him every day to play soccer with him. He wanted badly to play team soccer, but we made the (hard for us) decision to say "no" - he's too small physically for us to be comfortable with him playing soccer with "average sized" 6-8 year olds (he would age out of the U6 division this fall), and we're kind of leery of the "he's cleared for non-contact sports" clearance - at this age almost all sports have the potential to be "contact".

Anyway, we bought him his own soccer ball, since Big Sis got one for her new soccer season, and Big Sis has been taking him and DS2 out to play daily.

He even looks better with some sun on his face. His eyes shine when he comes in, and he ASKS to go out. 

I know this doesn't seem like much, but it's huge for us. We took the kids to the park last weekend when we had showings, and he ran all over the empty playing fields with his sister and younger brother, and then he asked me if we could lay in the grass and look at clouds :)

 

 

[Ethel Mertz]

What great news! He is so preciously cute! Enjoy looking at clouds with him.

[Guest]

He is adorable! I love how excited he looks in your pictures. It is so great he found something he enjoys that is helping him enjoy the outdoors and move his body.

[fraidycat]

He's so cute!! What a lucky boy to have such a wonderful big sis to play soccer with her little brothers.

[ElizabethB]

I am glad he is feeling better!

 

My son is only allowed to play non contact sports, the national foundation for his condition has a list of sports with rankings. Soccer is not on the recommended list, neither is basketball, they are actually pretty high up on the contact sport list, the few I can think of ranked worse off hand are football and wrestling.

 

Example true low contact sports they recommend are tennis, swimming, track, cross country, volleyball, golf, and archery.

 

They rank gymnastics pretty high but I would let my son do a well run recreational level gymnastics class, the upper levels start getting dangerous.

[AimeeM]

I am glad he is feeling better!

 

My son is only allowed to play non contact sports, the national foundation for his condition has a list of sports with rankings. Soccer is not on the recommended list, neither is basketball, they are actually pretty high up on the contact sport list, the few I can think of ranked worse off hand are football and wrestling.

 

Example true low contact sports they recommend are tennis, swimming, track, cross country, volleyball, golf, and archery.

 

They rank gymnastics pretty high but I would let my son do a well run recreational level gymnastics class, the upper levels start getting dangerous.

Yeah - I participated in (competitive/upper level) gymnastics and it can definitely be a bit dangerous. 

 

They gave us no such list - but one would have been nice! Nico has some pretty serious sensory issues, which would make things like swimming and lower level gymnastics hard - he hates feeling like he's falling backwards, hates being upside down, doesn't care for water, etc. Frankly, if he didn't have enough going on with other appointments, he would qualify for services regarding his sensory issues, because I *know* they rival those of his little brother (who is simply a "serious sensory SEEKER", according to his interventionist, lol).

 

He's starting tap this fall! Once he turns 6 he can take tap without having to take the "combo class" - he wanted nothing (nada, zilch) to do with the ballet/tap/jazz combo that required he wear tight shorts. He just wants pure tap. AND we found a dance school that works well with medical (and other) special needs, AND they will let his Big Sis "buddy" with him for the class (he isn't fond of other people touching him, and she would be able to tell if he was tired and needed to break), even though she's technically too old for the class. 

[Tanaqui]

 

He's starting tap this fall! Once he turns 6 he can take tap without having to take the "combo class" - he wanted nothing (nada, zilch) to do with the ballet/tap/jazz combo that required he wear tight shorts. He just wants pure tap. AND we found a dance school that works well with medical (and other) special needs, AND they will let his Big Sis "buddy" with him for the class (he isn't fond of other people touching him, and she would be able to tell if he was tired and needed to break), even though she's technically too old for the class.

 

That's wonderful!