breakthrough

[confuzzled]

has anyone suggested to you that she is exerting more calories than she could possibly be taking in with this shake diet?

hours on end of doing nothing but feeding and raging is self defeating. there needs to be some kind of reasonable time limit on these shakes. she is going to end up losing more weight if every meal is this extended battle.

what happened with the lithum--did you just stop it or are you titrating up on it...presumably she can't be at a theraputic level based on the timeline you've given. have you had her levels drawn to see where she's at with it?

i also saw that someone is considering Sensory Integration Disorder (SID) as a diagnosis....thats an interesting route to go. there is a pretty big difference between true Sensory Integration Disorder (SID) and adversion. has she presented with textural aversions her whole (solid food) life or is this a recent change? i've never heard of Sensory Integration Disorder (SID) just popping up at her age, but i guess anything is possible. of course, its alway possible that it was a missed diagnosis, too.

but it still seems like all of these issues are symptoms of the bigger picture, not seperate diagnosis'.

 

[Jena]

hi

she gained 2 pounds so far in my care for 5 days so no.

 

[Mamaof5]

I just wanted to say : KEEP AT IT JENA AND GIRLY!! You can do this!!!

Even in the bad moments bring up the accomplishments, always praise for past success. If it can be done once, it can be done many, many times!! Proud of you both, even with the mini pumpkin set back there has still been more leaps forward in 5 days than a whole set of docs and nurses at a hospital could accomplish. You two did better than they did at home, by yourselves. That is huge!!! Keep at it, I'm cheering you both on and keeping you both in my thoughts. Don't give up!!!

 

[Farmwife]

I am so proud of you two!! You deserve this win. Don't let the small setbacks get you down, you have done an amazing thing.

Pardon me f I missed this in another thread but...are these the premixed shakes? Had you considered smoothies? You can get a whole heck of a lot of goodness in with yogurt, bananas, orange juice, some berries, protein powder, weight lifter high calories powder ect. ect.

Oh yeah, what about baby food? I know some is just gross but some may not be bad like the fruit mixes such as tropical.

Apple sauce? Cream soups? Mashed potatos? Jello, it has some "chew" or mouth feel. Maybe on the days she isn't up to "real" solids you can tempt her taste buds with other stuff. Maybe the newer flavors will kick start her appetite.

I'm sorry husband is being a dookie. Not exactly a good time for him to be non supportive. I'm guessing you don't have time to sort him out right now. Regardless of what may come you are doing what you must, protecting your baby. If he can get over whatever it is later you can always deal with it then. I'm big on advocating patience and preserving a marriage if possible. HOWEVER, kids ALWAYS come first in my book. You can replace a spouse but you can never replace a child, never.

"One monkey don't stop no show." You are a strong woman and a great Mom, you will get through this.

 

[susiestar]

confuzzled, Jen's daughter has shown MANY Sensory Integration Disorder (SID) tendencies for a long time. She and I discussed them when she was here a year or so ago, but she was doing other testing and the $$ simply wasn't available to do the Occupational Therapist (OT) evaluation for Sensory Integration Disorder (SID). I don't know how much it extends to foods, though from my faulty memory I think difficult child was a picky eater. Regardless, Sensory Integration Disorder (SID) is something that was overlooked for a while because there were more urgent things to address. Now Sensory Integration Disorder (SID) treatment might do a whole lot to help. in my opinion the food issues with Sensory Integration Disorder (SID) can be some of the hardest to handle. My own Sensory Integration Disorder (SID) problems create some real food issues as there are quite a few foods I simply cannot eat or even put into my mouth for either smell or texture reasons. There are at least as many food that I cannot eat because the texture as there are because the taste. If difficult child truly has Sensory Integration Disorder (SID), the anxiety and choking phobia can trigger the Sensory Integration Disorder (SID) problems and make them much much worse. Treating the Sensory Integration Disorder (SID) is one way to start to get a real grip on anxiety ADN to teach difficult child to calm her anxiety and work through it. It isn't a cure, but it will give her a tool that can be very powerful if difficult child will let it be. I do the brushing therapy on myself when my anxiety gets really bad, because it makes every sensory issue a thousand times worse. (The Occupational Therapist (OT) who taught me to do brushing therapy on thank you also showed me how to do it on myself.)

Jen, you are an amazing advocate and parent. Please remember that you have to find a way to put some time into the rest of your relationships even during this very stressful time. If all the focus goes onto one thing, the rest of life ends up suffering a LOT. If life was a car you wouldn't just put gas in it, you also clean the trash out of the interior, wash the outside, clean the windows, put oil and other fluids in the engine, etc... Right now difficult child needs a lot of your time and energy, but you cannot forget the rest of your life. This is a time you can work to teach her to calm her own anxiety. Maybe have her work on calming herself through 1 or 2 mins with-o you, or 1 swallow on her own, so that she learns that she can use the tools even if you are not right there. Baby steps will be needed, because until now she has primarily used you as her way to cope with all of her problems. It has gotten her through a lot, but she has to learn to tackle the anxiety on her own if she is ever to stand on her own two feet.

You are truly doing an awesome job. In time husband will see how you needed to do this now, and that you haven't forgotten him.

Hugs.