More results, more appointments

I got a call on Wednesday night from Dr N. (ortho) who had actually gotten the bloodwork results back before the kidney doctors since he had ordered them.

Dylan has low parathyroid hormone along with elevated calcium in his urine (and maybe blood, I honestly can't remember).  Ding, ding, ding....you've earned a trip to see the endocrinologist now.  Oy! Fortunately, we got an appointment set up for October 9th.  Dr N. wanted him to be seen sooner, rather than later so it was nice that the appointment was just there and we didn't have call the doctor back to try and get in sooner.

Then on Friday, I got a call from Dr. R's nurse (kidney doctor) to let me know that Dylan's kidney ultrasound was pretty much normal.  There was little extra fluid around on of them but it was nothing they were concerned about.  She said that Dr R. would be calling me about the blood work......raised my nerves a little.  He called just a few minutes later and said that he was really surprised by the low PTH  with Dylan combined with the elevated calcium in his urine.  It wasn't sky high but it was high.  He explained that if the PTH had been normal along with the elevated calcium, he would have recommended started Dylan on medication since he's had a fracture BUT.....given the low PTH, he agreed that he needs to be seen by endocrinology because we make any decisions.

So, we're waiting AGAIN!  And I'm sure after we see endocrinology we'll wait again......have I mentioned I'm REALLY, REALLY sick of waiting.

3rd grade.....

In Kira's words yesterday.....

"You know Mom, 3rd grade really isn't much different from 2nd grade except I have more homework."

Kira's doing REALLY well this year.  It's been so nice (and a relief) to see her coming out at the end of the day SMILING.  She's had very few crying episodes and the ones that she has had, with the exception of one, her aide or teacher knew what had happened and she was able to to get it under control really quick.  

She's come home a few days excited to share with me what she played with kids on the playground.  She's struggled with interacting with kids her age...approaching them to play has been very difficult.  They are working on it this year with her.  Undoubtedly, Kira's crying has impacted kids wanting to play with her and interact so I'm hoping that she can really keep it under control and start making some good friends.

Add one more.....

Yesterday (Tuesday) was Dylan's appointment with the kidney doctor.  I really liked the doctor.  He was great about explaining everything and making sure that I was comfortable with the plan when we were done.  I so appreciate doctors who are like that....I really, really do.

So, Dylan had more blood work done and his doctor said that if we hadn't heard from anyone by Friday we should call.......and I definitely will.

At his appointment yesterday, he also ordered a kidney ultrasound. (Adding one more appointment to our already crazy week!)  We were able to get it done this morning at 8:10 AM.  I hated to be taking D to school late again but wanted to get this ultrasound done so that hopefully by Friday we will have all the results and a better idea of what is going on.

Dylan has been just a good kiddo with all these blood draws and tests.  He wasn't happy about having yet another blood draw but once they put the numbing cream on, he did better.  He chatted the whole time he was getting the draw done and at the end said, "WOW!  That's amazing.  I didn't even feel a thing"......over and over and over and over.

Today he hopped up on the table for the ultrasound after this conversation with the tech....

Dylan: "So, you don't have any needles in here, right"

Tech:  "Nope, none at all."

Dylan: "Then we'll get along just fine."

The tech and I both cracked up!  Dylan did great during the ultrasound....I had no idea he could lay that still! ;-)

Fortunately, I had him to school by about 9:15 so he didn't even miss an hour!

4 more weeks....

4 more weeks for no PE class and no recess for Mr D.....likely longer before he can head back to martial arts.  He was NOT happy when the doctor told him that....not happy at all.  I feel so bad for him.  Fortunately, for the most part, he's handled it well and he's figured out that it hurts when he does too much.  BUT he's tired of hurting for sure.

He had xrays done today and it was interesting to actually see the pins.....Dylan was very interested in that and stared at it for quite awhile.  I wish I could have figured out what was going through his mind. ;-)

The doctor was concerned that he's still limping as much as he is and when he watched him walk he said that he could tell it was definitely a limp from his hip. He's still complaining of pain quite often too and was, fortunately, able to tell the doctor about it on his own.   He's hoping that it's a combination of walking around on it fractured for almost 2 weeks and then having surgery.  His gait was clearly effected by it in the 2 weeks it took for something to show up on an X-ray.  We got back on November 1st and see how things are at that point.

Tomorrow we have his appointment with the kidney doctors.......

Random updates...

Last week at this time I was just finding out that Dylan needed to be admitted to the hospital.  I was remarkably calm which was probably because the doctor had just finished telling me that he was concerned that Dylan was at risk for breaking the bone all the way through.  Okay then, admit him.  Really a no-brainer there, right?

The week since his surgery has been rough.  The first few days were rough because he was in a lot of pain and not happy at all.  By Sunday/Monday, he was feeling better and it became a "game" of protecting him from himself.  Clearly the pain medications were working because he actually asked if he could jump on the trampoline...atleast he asked first, right?  

The last couple of days have been challenging since the stronger pain meds are gone and we're relying in Tylenol which works for the most part but I have a feeling tomorrow will be a whole new story when he goes back to school.  He's going to be up more than he has been in a week.  And he can't participate in PE or recess which I'm sure will not make him happy.  I talked to him a little about it this morning and his response was, "Not happy about that at all."  I hear ya buddy.  (Should be interesting since he has to actually GO to the gym but just watch.....oy!)  I'm planning on sending him all day but will make it clear that if his teachers thing it's too much, I will come get him.

We should be hearing in the next day or two what the "plan" is as far as making sure that this fracture isn't a sign of on underlying health issue.  Like I've said, it's in a extremely rare place.  Dylan has had some blood and urine tests done so we should know more soon.

Kira's having a GREAT year so far....really, really great year.  She gets to see her 2 favorite aides everyday which I know helps her and it definitely helps me feel better about things.  She also LOVES her special education teacher and so do I.  She seems to be falling into the classroom routine well.  She has two shortened days again this year, Wednesday and Friday, which works nice since Monday is early release.  She goes in the morning and I pick her up at 11:45.  She comes home and naps those days and still asks to go to bed by 7:30/7:45 every night.

Kira had an appointment at the end of August with the Neuro-Muscular Clinic in town.  It was an all day appointment and overwhelming but I left feeling good about how the appointment had gone.  It was REALLY informative and I feel like this clinic will be good to have an "in" with in the future.  Next week Kira is going to be getting some new ankle braces.  They will go up quite a bit higher but it's clear that she needs something with more support for several reasons (I'll spare you the long explanation of those!).  

Unfortunately, at the beginning of October, Kira will have another EMG done.  She's had 2 in the past but this time it will be done a little differently as they are testing for Congenital Myasthenia Syndrome.  Her neuro here is talking with the doctors at Mayo to ensure that this test is done correctly to test for CMS.  (And you can bet I will be taking my notes from Mayo with me that morning and asking for myself too).  Kira will have a "twilight" sedation for this test and as I'm sure you can imagine she will not be happy about it.  We will not be telling her about it until the morning of since we know that once she knows, she will not be able to stop thinking about it.  I don't blame her one bit.

We also learned at her neuro-muscular appointment that Kira's heart is beating with some extra beats.  It's showed up in the EKG so they sent her home on a 24 hour halter monitor.  I talked with the cardiologist yesterday who said that her recommendation at this point is to repeat the 24 hour halter monitor in 6-12 months.  She also wants to have some bloodwork done sometime in the next month...not sure when we will do that but it will have to get done, even with the screaming that will come along with it! :-/  Hopefully this not be a big deal.

And then there's Miss Eva!  She tried to convince me yesterday that she was "scared" to go to preschool but since she sprinted into the classroom the minute the door opened and didn't look back, I'm not buying it!  Out of all 3 kids, Eva is by far the most chatty about preschool.  I love it!  She gave me a run down of the day, came home with paint up to her shoulders and was smiling!  I think it was a great day!  She loves it and  that makes me very happy!!!

But she's still so little....

I really, really, really cannot believe that my Eva is old enough to go to preschool!!  It really just doesn't seem right.  I was sooooo disappointed to miss her 1st day of preschool and being parent helper that day since it was the same day Dylan was having surgery.  Fortunately for both myself and Eva, Eema stepped in and went with her.  I think it's pretty safe to say that Eva did NOT miss me one bit! :-)

Eva ready to go...so, so ready to go!

Playing dress up...she talked about it everyday after she went for orientation.

Plpayground fun!!!

This is our families 6th year, in a row at MGNS and I continue to be so thankful for having this preschool in our life!!  And I'm really thankful that we still have this year and next year there........ :-)

Kindergarten and Third Grade?!?

It really doesn't seem possible that Kira is in the 3rd grade and Dylan is in kindergarten this year!  It was interesting to watch the kids different reactions to the first day of school.

My Kira was visibly nervous and vocal about it.  She was excited too but nerves took over!!

Dylan was nervous the night before but when the morning came, he could not wait to go!!  It was actually a long morning of waiting to go!!

Waiting outside his door to go in.....

He found his spot in the circle but right after I took this picture he stood up, walked over to me and said, "You are NOT leaving me here!"  Fortunately, after a hug and kiss, he walked back over and sat down!

Jason took Kira to her first day and let's just say that the pictures I have that he took aren't "flattering!"  She had a rough few minutes but pulled it together pretty quickly.  We are really happy that she has Miss Deb as her aide this year again.  She had her in kindergarten and did REALLY well with her.

Both kids came out smiling at the end of the day which was GREAT to see....exhausted and hot but smiling!!

A fracture? Synovitis? Back to a fracture....

This post is more for me to keep track of the long line of events that we went through with Mr Dylan's leg...although it is entertaining! :-)

Thursday, August 23- Saturday, August 25:  

We noticed that Dylan started limping while we were at the water park celebrating his birthday.  He said that his knee hurt but insisted that he was fine to keep playing.  By the time we left the water park on Friday, he was really limping and having hard time taking steps at time.  He seemed a little better on Saturday morning but by the evening he was limping a lot and complaining it hurt.  He wasn't very active at all.

Sunday, August 26:

Jason and I decided that it was best to go ahead and get him checked out at Urgent Care.  They did xrays and were concerned about one spot at the bottom of his femur...that it may be a fracture.  They put him in a full leg brace and sent us home to wait to hear from an ortho who would look at the X-rays   on Monday.

Monday, August 27:
I got a call fro Dr. Nemeth, a pediatric orthopedist, that he didn't see a fracture but that the spot didn't look "right" for a child Dylan's age.  He felt like we needed to look into further for sure.  He wanted us to follow up with Dr. Clevidence and said that we still may end up seeing him at some point too.  He called Dr. Clevidence who got us in that afternoon.  Dylan had to have some bloodwork done which, I might add, he didn't even flinch for as well as more xrays.  Nothing showed up on X-rays so we just needed to wait for the bloodwork to come in.

Wednesday, August 29:
Dr. Clevidence called to say that the bloodwork was pretty much normal...his SED rate and white count were slightly elevated but not enough to really find an issue.  Since Dylan was still limping, he wanted him to be seen by Dr. Nemeth.  They thought that it would be 7-10 days to get an appointment but within about 20 minutes, there was an appointment scheduled for Dylan the next day.

Thursday, August 30:
We saw Dr Nemeth, who after examining Dylan said that he felt like he likely had Transient Synovitis of the Hip.  He wanted to keep a close eye on him since it could easily turn into an infection.  He wanted to see him again the following Wednesday...which, of course, was the 2nd day of school.

Friday, August 31- Tuesday, September 4:
Dylan was up and down over these days.  He tried to be up and doing things but it was clear that his hip was still bothering him.  I was getting a little more worried since I felt like this was taking longer to go away than it should.

Wednesday, September 5:
9:00 AM appointment with Dr. Nemeth who also agreed that since he was still limping he needed to have another round of xrays done.  I was expecting a short appointment and back to school.  He also said that there was an MRI scheduled for Monday which he felt like we should move ahead with.  He did the xrays and everything changed pretty quickly.  The xrays showed a very likely fracture at the top of D's femur close to his hip bone.  Because this is a very strange place to have a fracture and a dangerous place since it can effect the blood flow to his hip, Dr. Nemeth felt like the safest thing to do was admit Dylan into the hospital on bed rest and get an MRI ASAP.  He was concerned that if we waited until Monday and he continued to walk and run on it (which he was trying to do), there was risk that it could break completely and then it would be a much worse situation.
Around 3:00 he had an MRI that confirmed a fracture that would require surgery and 2 pins to repair! WOW!  It's hard to believe that he was walking and playing on the playground the day before!!

Thursday, September 6:
We were told around 6:00 AM that Dylan's surgery would be around 11:00 AM.....then at 8:00 AM, the nurse came in and said that they were going to be taking Dylan down in just a few minutes!  WHAT?!?!  Jason was still at home!  Around 8:15 they came to move Dylan to pre-op and by 8:45 AM, he was in surgery.  Jason got to the hospital around 9:00 AM! :-)  His surgery only took about 45 minutes.  He was pretty sleepy until around 2:00 when he woke up, said hi and asked for food!  By 3:00 he was inhaling a breakfast sandwich and banana bread....and while he waited for that he ate ice-cream and Fruit Loops!

We decided to head home that day since he seemed to be doing okay and they gave us that option.  We were out the door around 5:30.
The doctors are still a bit concerned about this fracture and are running a few other tests to see if there is any underlying health issues that may explain it.  We should be hearing more about all of that next week.

Friday, September 7-Saturday, September 8:
Dylan's been doing pretty well.  Friday was rough in the morning until the pain meds kicked in...he didn't want to walk at all.  By around 5:30 or so, he was walking some and wanting to play.  Today, Saturday, we have officially hit the point of him wanting to do more than he should be at this point and it's getting tricky......he went downstairs to find Jason while I was gone and now he's having a lot of pain.  One day at a time..... :-)  Just happy that he's smiling again!

Celebrating Dylan!

Once again this year, Dylan wanted to go to a water park for his birthday rather than have a party at home.  He could not wait!  We went to Grand Harbor in Dubuque just a couple of days after his birthday and both sets of grandparents were able to join us!

He was excited to swim but couldn't wait to open presents either!!

A green shirt!  Perfect!

 Gravedigger 30th anniversary DVD....another perfect gift!

Bumpa's birthday was the day before we got to the water park so we took a break from D's presents to give Bumpa his....look at those to laughing!!

Gravedigger lunchbox.....are you sensing a pattern here yet?

Couldn't wait to put together one of his, you guessed it, Gravedigger Knex trucks!

 Hula girls...

Yep....a Gravedigger cake too!

Finally time to swim!!!

WHAT?  Bumpa going down a water slide!  Yes, it shocked us all but we frequently couldn't find him after he started! :-)

Dylan and Daddy at the bottom of the BIG slide!

I know it's blurry but Eema's face is priceless!!

This is Kira's kind of slide...just her speed and size! :-)

Tired girl.....end of day one!

Chilling in Eema and Bumpa's room...it's was nice to have adjoining rooms.

Sorry Bumpa...no room in the bed for you!

Day #2 ......Dylan started limping and we had no clue what he did but it really didn't slow him down much.

Daddy and Dylan again.....

Tired.....again!

Kira spent a lot of time right here.....

Dylan's leg started bothering him more and they all got tired after about an hour and half the second day so we headed up to get changed and head home!

It was a lot of fun and I'm sure that it won't be the last time we make an over night trip here!!

Dylan said for several days that "it was the best birthday ever!"