IVIG Infusion January is in the Books

Gary is doing good.  We had our infusion yesterday at the Seattle Campus at Children's.  I went ahead and tried the sedation again,  one more time.  I was curious to see how it went.  He slept.  A lot.  Lately, sleeping as not been something he does a lot of.  So when the lorazapam hit me, it worked well.  We slept thru the whole iv prep.  We thought we were about to get an iv while he slept but as soon as it hit the skin, he woke up.  Unfortunatley I didn't have a good hold of him.  Our nurse, SUPER GREAT but pregnant with twins due next week.  Hello?  She tried but she was challenged with size.  The size of herself that is.  He jerked back pulled the iv out then it quickly went in for a 1-2 poke.  It was a no go.  The nurse went past the vein because he was jerking back and forth.  We tried the other hand, nothing.  She finally got it in the crook of his arm.  I thought about it afterwards.  How would I like to wake up to someone poking a giant needle in the back of my hand.  Well,  I wouldn't, and would most likely be pretty ticked off.  So after 3 or 4 pokes if you count the first poke as two, we were rolling.  He went into a coma.  He slept through the whole infusion.  It went smoothly.  Woke up hungry, and grumpy.  On the way home, he had a serious chocolate fit.  MUST HAVE CHOCOLATE.  I actually had to stop and get some.  He deserved it.   His labs look great.  His clinic appointment is Feb 8th.  His hoarse voice issue seems to be backing off.  His thrush is getting better but very slowly.  The nurse said I should check back with the pediatrician because we have been treating it since Jan. 4th.  It is better however, so in the next few days if it doesn't improve further, I will give him a call.  He did say at his appointment however, 'as long as it takes'.  Gary does have a cough that returned but I don't think it is really serious.  Post nasal drip and a cough.  The calcinosis on his arm has changed.  It is less angry and going down but I am not sure what to expect or what it even means when it does that so we shall see.

You're Beautiful Today (Erin's Song)

Not Again

Just last night has we sat in the parking lot of a walk in clinic for Daddy who has a nasty nasty case of bronchitis, I was sitting there thinking I was glad the Rituxan seemed to stop the weird bouts of tummy bugs or what we thought was a bug.  I thought to soon.  Hours later, as if Gary's was trying to tap into my maternal conscious to tell me he was going to throw up all over my bed last night.  I got the wrong sub conscious message.  I am so very tired of everyone being sick.  Elexis had a run in with fifths disease.  Turns out she came down with  pneumonia.  Daddy has been hacking and I truly can't remember what he even looks like because he is always in bed.  He even stayed home from work today and he never does that.  I have managed to not pick up anything I don't recover from quickly.  I am sure my turn in coming but I plan to keep battling back with running to  "run away" from the germs.  I have been bathing the house in bleach.  I will continue the great germ fight.   So back to the barf.

Nov. 13
Nov. 16
Dec. 9
Jan. 10

Stomach cramps and vomiting.  Nothing from down under however this time.  Just bad tummy cramps.  What is odd is that Gary isn't in preschool.  I know the kids go to school and can bring stuff home but wouldn't they bring has in getting it first, then passing it to him?  The dates are all around the same time of the month.  I got it!  It's menstral.  Oppp, three year old boy, not possible I guess.  Huuuummmmm.  Allergies to food.  Well lets see yesterday he had mixed nuts, blue berries, celery, peanut butter, a small snicker bar (nicka bah), refried beans, brown rice, corn chips.   I do not recall what he ate the other dates,  but for documenting purposes I will start for the next time it happens.  I suppose I should keep a daily food journal.  Now, I could call the rheumatologist and let them know it happened again.  I don't think it is necessary just yet.  If he didn't recover so quickly (by morning), I would be more concerned.  But since he woke up and asked for a tuna fish sandwhich and hot cocoa, then I would worry more.  But then again, that makes me worry more because if it was a viral thing he would take longer to recover.  It clearly is his stomach cramping.  Because he cries and tosses and turns, then barfs, repeat throughout the night.  I really don't want him to have some invasive test that won't show anything.

New Year: Dodging sickness

We have seen the pediatrician more than once this week.  Gary came down with thrush.  Rheumatology said to take him to his regular pediatrician, whom I love!  Then Elexis was in last night.  We had separated Elexis and Gary because Lexi was exposed to Fifth's disease.  I mentioned this to our doctor.  He advised if it was possible to keep them far apart.  So Lexi has missed a whole week of school.  She stayed with her Aunt and Uncle a few days but starting getting worse.  We were concerned she was showing signs of getting Fifths disease, but it actually was walking pneumonia.  Now she is under quarantine in her room.  They put her on a mean antibiotic and an inhaler.  Of course when you tell her three old brother to not go in her room, opposite day is in effect.


CALCINOSIS

So this is what calcinosis looks like.  It only hurts if it is bumped or if he is putting on a jacket.  It was funny he let pediatrician mess with it.  He was strangely cooperative for him.  He is getting more on his bottom around his tail bone.   I don't post these to make anyone feel uncomfortable.  I do it to show other families what to look for and to document.  I wonder if this was actually a molluscum until I got onto another families site.  It look exactly like their daughters calcinosis.

 

A New Year

What a year!  I can say it was full of blessings.  We are looking forward to this year as well.  Christmas was wonderful.   I mean I must have been a really good girl!  We had our infusion a couple days after Christmas.  It went good.  We got our own room because Gary has had a cough for awhile.  Poor guy had to have a nasal swab,  and chest xray to check for viruses, ect,.  He was in the clear, but at least it got us our own room.  The nasal swab was pretty bad.   They stick a small tube to suck out mucus from your sinuses.    Ouch.  Gary responds very well to the Rituxan.  He looks beautiful.  He does have a calcification that is coming thru his arm.  It started several days ago.  As long as we don't accidentally touch it, its ok.  I hope the rest of it doesn't start doing that.  That will be tough.  I can't believe in 3 months Gary will be 4 years old.  He is turning into such a boy.  I am so grateful for God's protection and blessings he gives us.  This year we are looking forward to stepping closer to remission. 

Pictures from Christmas