Friday, May 10, 2013

Jedidiah's Endo appointment

Today we had a follow up endocrinology appointment for Jedidiah.  When the doctor asked me how things were going I told her that I was rather disappointed in Jed's progress.  Ready to hear the 'great' stats?  In six months Jedidiah has gained 2.4 pounds, and grew a whopping 1 inch.  ONE inch.  That would be *bad*.  We had a great afternoon visiting a park and eating a yummy snack, so I was in a really good mood at that moment, but had I not been?  I am sure I would have started to cry.  I then asked, thank the LORD I asked, one of my silly/nagging questions.  I told her that the home nurse seemed to have a wee bit of trouble figuring out what Jed's dosage should be.  The instructions for how much medicine is given is in milligrams, but the units on the syringe are in milliliters.  Or something like that!  As it was his doctor had him on a smaller dosage due to his past history of increased cranial pressure.  Well, come to find out that on top of the already reduced amount, I was told to give was even HALF of that smaller dosage!!  No wonder the poor boy hasn't grown any faster than pre-meds!!!  What the meds have done is stop his sugar crashes. I do believe that all the medicine he was getting was going to his pancreas!  Or wherever it is needed to help control his sugar. 

So the plan is to start him on the original smaller dosage and keep him there for two weeks, and then increase it to where she had told me to in today's appointment.  As it was it has taken us literally years to figure out Jed's lack of growth and weight gain, and to top it off, once we do figure it out I feel like we've wasted another 6 months.  Six months!  Thankfully she replied to my email question about my fears (of being totally behind) and explained that as long as we have 5 years to work with that he will be ok.  And seeing as how he is almost 7, but should still be growing until 17, we have ten years to work with.  Phew!

That was how our later afternoon went.  But, before that, we had spent time at a park I used to take the older girls to.  There is a rose garden in the city and we went there to check it out.  I think there may have been a total of 12 roses in bloom.  Ok, there was more, but seriously, we clearly did not come at the right time.  But that is ok, fun was still had.  In the rose garden is an outdoor theater, with built in stone benches on the side of a hill.  Very neat.  The kids had a blast, except for the two kiddos who took their shoes off and found out the hard way that the grassy areas between the benches harbored some horrid stinging plant.  I've seen plenty of pictures of nettles, but this did NOT look anything at all like it.  This was a totally, totally different plant.  The good news is that the plantain that was growing everywhere took care of the stinging.  And the cool part?  Isabella was the one to spot the plantain and suggest we use it!  I totally wasn't even thinking about that!  That took care of the stinging in a minute or two.

Next to the park is a new playground.  Well, I'm not sure how new as the last time I was at the rose garden was some 10 years ago!  All I can say is that it wasn't there when I was last there.  It was small, but the kids had a lot of fun.  My main goal was to get in some 'nature study' and get the wiggles out before our appointment.  I only took a few pictures while we were there, but here they are:

The rose garden has some lovely stone trails and stone work all around.  It is such a serene place....well when WE are not there it is.  Ahem.  I can only hope that the few people that were there were not there to relax in the quietness of the beautiful surroundings.  My children are not perfect but I usually get compliments from others at how well they behave (clearly those same people have never visited my house!).  But today?  Oh, my!  They were like little monkeys on a sugar high!  All over the place.  A few reprimands and threats of having to sit in the van while the rest of us enjoyed ourselves did help to settle them.  Phew.

The stone benches in the theater.  The kids ran up and down and all around this area.

The stage area.  You can see Jonah in full running mode off to the side there.  The stage is slanted at an angle, with the back being higher up. 

Ok, so there were more than 12 roses, but these were the small ones, and all the larger roses were not in bloom, save twelve.

There was this gorgeous tree, as seen above, that had these 5 or 6 large trunks coming out of one base.  Here Saoirse is standing in the middle of them.

Jonah was insisting on me taking his picture and every time I would go to snap it he would get all serious looking.  Apparently that was the look he was going for!  I kept saying I'm trying to take your picture, look at me and smile.  He would say, I know, take my picture (all while smiling).  Then I would hold up my camera and he would get all serious looking.  He did this multiple times throughout our visit.  Pretty funny.

The bug net and bug guides go everywhere with Jed.  Every.  Where.  (Yes, I know that is supposed to be one word, I'm going for the dramatic effect, so work with me :-))  Jed insisted I take pictures of him catching bugs.  I only got this one since every time he would "pose" for his bug finding picture one of his brothers thought he had actually caught a bug and got in the way.  Oh well, I have a feeling there will be plenty of other opportunities.

Moira in the majestic tree.

I had called all the kiddos over in an attempt (silly mommy) to get a group shot.  I have yet this year to take a decent group shot of all the kiddos together.   These guys were waiting for the slow pokes to get there ;-)  I think the other two were taking pictures of their own, you know, of the 12 roses that were in bloom.  Anyways, in order for these guys not to run off I had to start taking pictures.  Aubrey was in some funky mood.  Not bad, but really odd.  He was clearly, clearly enjoying himself and the new surroundings, but anytime I had to make him stand still I got the above serious/deep thought look.  This morning I noticed his nose was all stuffy, and he feels ever, ever so slightly warm.  So maybe when he had to stand and he wasn't in the 'middle' of exploring or climbing he was just feeling yucky?  Poor little guy.

This was the best picture out of the handful I took.  Jonah wanted to be dramatic and serious, and Jed couldn't stand still to save his life.  The girls kept trying to get someone next to them to look at the camera, all the while not looking themselves.  I do believe I understand why professional photo shoots cost so much!

Lots of rose bushes....not in bloom.  Still very beautiful.

Now we are at the playground.  There were two diggers there, and three boys.  Um, you do the math :-)

I finally convinced Jonah to smile.  I should do a collage of all the dramatic/serious pictures I got!

Aubrey had a blast in the sand pit.  There was a dump truck left behind, and once he figured out he was too small to work the diggers he spent most of his time playing with it.

The slide was perfect.  Fast, but not too fast.  No one went flying off the end.  And all the boys could climb up on their own. 

I wanted to get portraits of each child individually.  I had the cooperation of only a few :-)  Isabella was up for it.  She just recently got this hat and has been wearing it ever since.  She took it off for a little bit in the van to get cooled off.  But then...then we 'hit' some speed bumps.  She was driving, we are all telling her to go slow, and she's there saying, "Where's my hat when I need it?! Yee-haw!"  Disclaimer:  No one was driving dangerously, and no one got their brains rattled.  End disclaimer.

We were discussing that Isabella was born in the wrong time period, or at least in the wrong part of the country.  I think one of her favorite quotes from a movie is of a little boy who wears a cowboy hat all the time and is being asked by a little girl why he always wears a cowboy hat.  The boy's response:  'Cause it fits my head.  But you MUST imagine that being said with a southern twang.  Otherwise it just doesn't have the same effect.

You have to love the safer sew-saw alternatives.  I must say that although I miss the more thrilling stomach butterflies, I do NOT miss the slammed jaws from someone dismounting before you are ready.  But, anyways, these girls had a blast, pretending they were on bucking broncos.
We must not neglect to get pictures of children on the swing.  Not that Flannery would let me forget :-)

Saoirse's turn.

There was a climbing rock there.  Surprise, surprise, Flannery was the first one up there! 

Some kiddos taking a break in the shade of the climbing rock.  This was the challenging side of the rock.  Isabella scaled this side and made it to the top.

After some climbing time it was time to take off to our appointment.  Everyone is excited to go back to the garden and playground in the future.  I was thinking it may be really fun for our homeschool co-op to practice a play and preform it on the outside stage.  Afterwards we can have our nature study and a picnic.  Must get some plans going!
I have a lot of other pictures from our two week break that I will upload as either just a photo post, or in a slideshow.  I also must share my hair raising bug experience.  Shiver.  Stay tuned.

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