"Little guy never controlled" getting under control!

[JacksParents]

Hi All,

Over the past 3-4 weeks our baby has started coming under control! He appears to be in early remission as his 6MP level has been titrated to therapeutic and we are weaning his steroids; was taking 15 mg/day on Feb 29 and is now at 6.6 mg/day. He still refuses to eat any solids but his bottle consumption of Elecare Jr. is solid at 800 to 1000 kcal/day.

Jack's diaper rash is... gone! He is happy, social and - aside from being really short and having an NG tube sticking out of his face - a perfectly normal 15 month old. Gets frustrated at not being able to talk and is ready to start walking.

We anticipate there will be bad times ahead, too, but we can finally sleep well knowing he is on the road to "better."

Thanks to all who were so kind and supportive during our darkest times.

- Jack's Parents (NYC Jack, that is!)

 

[kimmidwife]

Great News, So glad to hear!!!!

 

[Mom2oneboy]

SO happy to hear that little Jack is doing better!!

 

[Tesscorm]

Great news! I also wish that all just gets better for Jack! He is such a beautiful baby! :Karl:

 

[crohnsinct]

Cutie Patootie! So glad he is happy and you have your bundle of joy back.

 

[Johnnysmom]

What a sweet baby!! So happy to hear he is doing so well!!

 

[LilyRose]

Hello!

I am so pleased your beautiful Jack is doign so well. I'm sure it is a great relief to feel like you are now going in the right direction.

Really pleased for you. Kepp us posted how things are going.

LilyRose

 

[Sascot]

Thanks for the update - that is fantastic news. Hope it is only onward and upward from here!

 

[polly13]

Delighted to read your update - great news.

 

[JacksParents]

Thanks for the shared happiness and good wishes!

 

[Farmwife]

How great to hear your little one is doing better. I hope it continues. He's as cute as a button.
:soledance:Farmwife

 

[dannysmom]

Great news! Thanks for sharing!! I hope he continues to improve.

 

[izzi'smom]

Wonderful news...may it continue!!!

 

[imaboveitall]

Happy news rules...ika:
What a gorgeous baby. I wish mine were that size again...

 

[Suzysu]

So great that he is doing better - long may it continue!!

 

[QueenGothel]

He is such a cutie! I hope he keep doing well.

 

[JacksParents]

Hi,

It appears that I spoke too soon. He had a GI bug 2 weeks ago and has had a significant setback; if he doesn't perk up soon we may have to choose between ileostomy vs. MTX or Remicade. Jack hasn't had 1 calories by mouth in 4 days - all NG tube all the time. And back to pooping with blood 5 to 7 times a day.

It was a nice 3 week run while it lasted.

Thanks to all for the good wishes. The sentiment is mutual.

Best regards,
E

 

[Farmwife]

Poor little guy.
I hope all is resolve very soon.
What a cutie!


Farmwife

 

[Suzysu]

I'm so sorry that he has been so poorly again - fingers crossed he will start to iprove soon and you won't have to make any difficult decisions - thinking of you guys lots xx

 

[Jenn]

So sorry to hear about the setback. seems to be the norm for IBD, unfortunately. Big HUGS to you. Hope you find something that works well and lasts!

 

[crohnsinct]

ERGH! Why is it that posting good news often upsets the IBD Gods! So sorry he is feeling badly and you are faced with another hurdle but gosh that picture of him just brings a smile to my face. Hope he is smiling again soon.