Child Had A-typical HUS Disease

You have been and are going through hard times. I feel in order for your family to be healthy - healthy meaning less stressful - you and your husband need to go on a date! When the two of you are functioning together your family will come together much easier and less stressful. Take a couple of hours for you and your husband. Number on you deserve it and number two you need it. This may also clear your head and be able to think better and to see better what is needed for your family.

You and your family are in my toughts and prayers

I can only imagine what a difficult time you are going though. My daughter was 1 when she was having issues with not gaining, and then loosing weight, with all the needle pricks she still 1 ½ years latter does not want anyone in scrubs to touch her, and she never even went to the hospital. My son had minor outpatient surgery and went into a deep depression for about a week following. So I can understand where your concern for her mental well being is at this time. These are a few of my thoughts; maybe one will work for you. Dates – you do not HAVE to go out if you feel too guilty. See if you can get a sitter to take your older daughter out to a movie or something, and set up a portable DVD player in your younger daughter’s room and have a quiet dinner and movie on the couch with your hubby. Not that I would advocate the DVD thing on a regular basis, but once in a while to grab a break will not hurt. Have the same sitter come over once a week to take care of the girls while you and your husband get the yard work done together, clean the garage, etc. It may not be a date, but it is time together and would give you daughter time to get use to someone new with you still being there if she needs you. In a month or so she may be ready for you to leave her. Also remember, if you decide to just leave here with a sitter and go, she may cry for a while, but she will be perfectly fine – as another mom, I know it will be harder on you than her.
For re-establishing trust of other people, have you tried any group activities with her? I did WeJoySing with my little one, it gave her a chance to be around a “teacher” other kids her age and still have me right by her. I am not sure exactly what the illness is she has, but if she is allowed to be out and about with others, this may help with the anxiety of being around other people. They also have an early intervention program that I think is more for kids with autism and speech delays, etc. but it may be worth asking about to see if it can help you and your daughter. Good luck

I found your letter very interesting. I have been a nurse since 1986 and will graduate RN school in May and I have never heard of this disease. I am going to find out more information for sure. In all of my schooling, they say a child's earliest memory is not until 3 yrs old so hopefully she will not remember any of this unless there is no cure? I hope this is the case. Anyway, I don't think anyone will think bad of you because you want to spend a little time with your husband and other child. You need to do this especially if you don't want a strain put on your relationship with your hubby. It's stressful on them too though they show it so much differently. Take the time and your daughter will be fine. The good thing is she won't remember you left her to go on a date with your hubby. I'll be thinking about you and pray all of this has a good turn out for you and your little daughter. Prayer does wonders.

Hi, My name is M. and we had a scare of our own. My daughter is 15 months old.I came home from work 3wks ago today to find her gray looking and her heart feeling like it was coming out of her chest. We loaded her up and took her to the hospital and her heart rate was 300 beats a min. They had to stop her heart so she was dead for 1 min while I held her. She is the only one I can have so I was freaked out. They rushed her to childrens and we were there for a few days. My little one would smile at anybody and wave and now she hides and clings to me not to much on daddy which hurts her daddy very much. They told us she has PVT it's where her heart doesn't make a full cycle so she is on meds twice a day which they have to be refrigerated which makes it hard for us to go places and like you I need a break. Just someone to talk to about all the things that we hwve been thru. It is a strain on my relationship with my fiancee. She has night terrors where she screams and she shakes and it is very hard. Just stay strong and keep a good communication going between you and your husband and things will be ok. I will pray for you and your family. God Bless.