This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Wednesday, October 9, 2013

Santa Needs a Check Up Too

Yup, this one is a few days - a week - late.  After spending all day in Rochester on Wednesday, then the headaches that accompanied such early mornings Thursday and Friday, I didn't have the energy to update.  Saturday after Sax and I got done with taekwondo and Farmer's Market,

we had to evacuate the house because Daddy was cutting a hole in the basement floor so we can put in the extra supports for the new stairway 

and the house was FULL of concrete dust.  Not good for the lungs!!  And since then, it's been cleaning up the dust - but today we got the approval to pour our cement in the basement.  Maybe we will be in our new room by Christmas!!  Although we did take some time out on Monday to help Opa get the boats off the lake.. it was such a beautiful day for it too!


Wednesday morning was a very early morning for us.  Mom was up at 4:30 am because we had to be in Rochester by 7:15 am for Saxon's first appointment for his GI scan.  Since the guy I had talked on Monday never called me back with the timing of the tests, I packed up Sax's suitcase with extra clothes for us both, packed his nebby and vest, and prepared for the worst.  I also packed his little red suitcase full of books, homework, and coloring so he would have something to do in between his appointments (the suitcase was great since it rolled!) and I took a bag of my knitting so I would have something to do too.

At about 7:30 am, the radiologist came out and called Sax into the back room.  I asked her a few of the questions that I had asked the man at the GI's office.  I told her that the sheet I was sent home with only said that he was having a GI test, that he had to fast, he would have to eat eggs, and he'd have periodic testing, but no one could tell me a timeline or what all the periodic testing was going to be.  She asked "Well, what do you think it should say?"  I told her that it should say he's having scans done, especially when day 2 and day 3 only say GI Test and no additional information.  This "Nurse Ratchet," as I later called her, was quite crotchety and rude whenever I asked a question.  SORRY, I'M HIS MOTHER AND IT'S MY JOB TO ASK QUESTIONS ABOUT TESTS BEING DONE TO MY LITTLE BOY!!!  I asked her what the alternative was to eggs since I have not gotten him to eat them since he was a year old.  She said she would check, but they couldn't do the test unless he ate the eggs.  THIS is why I had called on Monday - and was told there was an alternative. "They don't know anything over there - you should have called us over here." Um, if they didn't know, they should have said so.

So Sax spent another half hour waiting for her to come back.  The result?  He had no choice but to eat them.  I could only hope that his fasting since 8 pm the night before made him hungry enough to eat them.  We went back with her again, where she gave Sax a pill to take (but very important - don't touch it!) and a glass of water.  Then we had to go wait for another hour before the next step.

We found a quiet(er) corner of the waiting room to hang out it.  Most the the people there, sorry to say, were of the geriatric variety, so I tried to keep Sax quieter and occupied.  We started off with reading some stories and playing with his friend Bumble.  The entire time he told me about how he was soooo hungry and why couldn't he eat yet?  His tummy hurt!  I felt awful for him!

FINALLY, Nurse Ratchet came to get Sax so he could do the study.  He had to go to a small room that only had one other person in it.  I asked if he was supposed to get his enzymes or not. "What were you told about meds?" The ONLY thing it said about meds was nothing that affected his stools.  But, of course, I don't know if they'll affect this test! GRR!!

They brought breakfast in as I was giving him his enzymes.  I like eggs, but these smelled AWFUL!!

Maybe it was just being in the small room and the bread smelled funny too, but I tried my hardest not to gag.  Sax really wasn't enjoying them much either.

(See the 'evil one' standing in the corner?)  She left for a while, and I had managed to get Sax to eat almost half of his meal through bribery (and got yelled at for offering him M&Ms because, until then, no one told me he couldn't have chocolate or any other 'caffeine' products.)  He told me he was full, which I believed because he'd eaten more than he normally does, and I thought he'd done pretty well. (Oh, and he only had 10 minutes to eat.) This gal would not accept him saying he was full - took the egg off the bread, and got short and snippy with him, demanding that he eat it.  Sorry, but that's now how you handle kids!  She must be used to dealing with adults all day, because she sure didn't have a pleasant disposition towards this cutie!

We had to wait another hour until Sax's scan.  We killed some time working in his coloring book.

After his 10:20 scan, I took him to the Charlton lobby so he could have a little room to spread out and run around and maybe burn some energy off.  It kept him occupied for all of 4 minutes.  We read a couple books, then he ran around with Bumble again.  About 11 we went back up to wait for his 11:20 scan.  He was given his lunch in a brown paper bag, but was told he wasn't allowed to eat it until at least noon.  What do you tell your child when he claims he's actually HUNGRY (which rarely happens anyway!) and you are standing there holding his lunch?  "Hey, Bubby, let's go find something for Mommy for lunch so we can eat together in a little bit!"  

I decided that, since he was having a sandwich, that sounded good to me too.  We went to Bruegger's Bagels because 1) I love their soups and sandwiches and 2) it is waaaaaaayyyy at the other end of the subway under Mayo.  Unfortunately I didn't think about how we had to walk past The Chocolate Oasis - our favorite treat spot.  I was happy that Sax was starting to understand he wasn't supposed to be eating chocolate, so he didn't ask for me to get him anything.  We chatted with the store owner for a few minutes (she knows us well since we're regulars there) and I promised Sax we would come back soon and get a treat - sometime after his tests were done.

I took my time ordering my meal (I settled on grilled tomato and cheese on ciabatta), passed up any sides since I didn't know what he was getting besides the sandwich, and we headed back to our favorite lunch spot.... slllooowwwwllyyy (we still had time to kill).

The weather was beautiful, it was the perfect kind of day for eating outside.  We usually sit in this garden area.

Dang it  - I knew I waited too long to catch up on this :(  Sax had a turkey sandwich and jello for lunch, then he had to go back for 2 more scans.  He fell asleep in the chair in the waiting room in between appointments.  We managed to make it home by 5 since his last scan was at 3:20.  But then Thursday we had to be back at 7:30 for another scan, and the same thing on Friday.  It was literally a 2 minute scan - and an hour drive each way!!  On Thursday when we were leaving, the guy working at the gate recognized us and looked at the time on the parking card.  We had been there for less than half an hour.  He handed my card back (without punching it) and told us to have a nice day.  I love when good things like that happen :)

As of 12/11 we still do not have his test results, but I'm sure if there was anything serious we would have known by now.  I took Sax back for his followup appointment and was told I had the wrong day, even though I had told them that Thursdays didn't work and I was told it was moved to Wednesday.  Then, to my amazement, I was told I couldn't reschedule while I was standing there in the GI office - I had to leave and call back to reschedule!!!  That made absolutely NO sense whatsoever to me!!  So now it will be March before we go back to see them...

I'm sure everyone is wondering where Santa comes into this, right?  As we were walking into the clinic on Wednesday, a red car with an old man in it drove past us.  The old man had white white hair and a full beard and mustache.  Sax looked at the car, looked at me, and looked at the car again.  (I should mention it was a red car too.)  

Sax:  Mom, did you see that?
Me:  Yes, I saw that car.
Sax:  That was Santa!!
Me:  Maybe it was.
Sax:  What is Santa doing here?
Me:  Well, Christmas is coming, and Santa needs a checkup too.