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I have not given an update on us lately. I figured since I have been lurking here from time to time and posting here and there, I would give you all an update.
Samantha is 21 months old now, she is 30 inches tall and 23.0 pounds. ( that was from the GI on thursday) That makes her in the 10% for wt and 3% for her height (last time it was flipped) She is no longer considered FTT
. That was a happy day for me. She still has a G-Tube and will until she is at least 3. We are just fine with that b/c it is what helps her keep growing like she is. We only give her tube feeds at night (22 oz over 11 hours) During the day she has to eat on her own. She is on Periactin now to stimulate her appetite and it seems to be working. She eats all the time now. We give her things with small amounts of milk in them now and, other than a little exzema, she does well with it. She will still be on Neocate for quite a while, it gives her the nutrition that she needs, the food is just extra. We give her Neocate 1+ at night and either Neocate infant, Neocate Jr. tropical punch, or the SHS E028 formula during the day. She is supposed to drink about 12 oz during the day and about 1/2 the time we get it in her.
I am very thankful we decided to get the Fundoplication, it has helped her so much as far as progressing. I think that the severe reflux slowed her development and caused a lot of her sensory issues. She is catching up on her development and her sensory issues are getting better with time. I do brushing and joint compression about every 2 hours. She really enjoys this and it helps her.
Her Neuroblastoma is (Thank God) gone and she does not require any treatment. She just gets CT scans every 3 months now and they check her urine monthly for a hormone that indicates cancer.
She has been diagnosed with Nutropenia and they are not sure what is cousing it. They are doing genetic testing to rule out Schwachman Diamond Syndrome. Her immune system is just not normal. She gets sick very easily. If she gets one more ilness in the next month or so, they will start giving her injections several times a week to boost her immune system.
Her speech has definately not been affected by all of this, she talks all the time and you can understand a lot of it. She is trying to potty train and has gone to potty several times in her potty chair.Hope all is well with everyone!
First, I want to say sorry, I am very bad about putting things in terms that everyone understands…I just forget and my nurse brain kicks in.
The ANC is an abbreviation for absoulte nutrophil count. The white blood cells are made up of several different types of cells, lymphocytes, monocytes and granulocytes (nutrophils) are the main parts. For some reason Samantha’s body makes very little of the nutrophils. Normal absolute nutrophil count is between 2000-5000. Samantha usually runs about 500-800. The nutrophils are what helps you fight off infection, they have a very important immune function. Because of this, Samantha tends to get sick a little easier than other kids. The doctor is wanting to start her on G-CSF injections twice a week. The G-CSF is used to treat nutropenia (the official diagnosis for low nutrophil counts) Most commonly you see nutropenia in cancer patients that are undergoing therapy. Samantha is not on any cancer ttreatments (chemo or radiation) so her nutropenia has nothing to do with her cancer. Hopefully she never relapses because the fact that she has nutropenia already can make chemo very hard on her. I pray all the time that this is a bridge that we will never have to cross.
The Shwachman Diamond Syndrome is something that she is being tested for and it is a very real possibility. Kids with SDS have nutropenia, severe reflux and GI problems, and the disease it self mimicks the respiritory symptoms of CF (which many of her doctors felt sure that she had early on and tested her for it several times)
As for the head sorry I did not make that very clear (I posted this on her carepage also and had only posted on the carepage about the whole head incident) So here goes…
On April fools day (of course) we were at home having a lovely day, Samantha was healthy, we felt confident that we were going to have no ER visits or anything that weekend, so we made plans. Samantha would not have that
She fell and hit her forehead on the TV edge and had a 2cm laceration to her forehead. Of to the ER we go…2 sub Q stitches and 6 external stitches later we got to come home. Our life is never boring…I am sorry that I did not explain it better in my first post, sometimes I just forget
Way to go, Samantha!!- You must be logged in to reply to this topic.
