The Last Month with Nathan

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So a lot of stuff has been going on with the boy.  So I'm going to update.

So - we were living in a bad situation with some "friends" ... our whole family was stressed out, we were basically only sleeping there until we found a place, and we were looking.  Then one night, things escalated and we didn't go back.  We ended up staying at my Mom & Step-Dad's...  and it was amazing to see the kids moods just lift :)

But sickness then ensued.  Nathan ended up acting like he wasn't feeling well.  (here he is sleeping and cuddling his Mickey)

I noticed that his eyes were really goopy ....  so ended up waiting until the clinic opened on Monday, and low and behold, the Monday we went to go in, was a holiday ... so it wasn't open.  So we ended up going into the ER...

 Having a blast playing on the iPad ...

 See how icky his poor little eyes were....

He also had an appointment with Neurology to discuss his migraines which he had been having again, it seemed.  (Hiding from the dark a lot, needing to cuddle/kangaroo, a lot of sleeping....) ...  and when we were explaining things to him, the DR said that with Nathan's medical history he was worried about seizures ... so he wanted Nathan's eyes checked, and an EEG done.  I had never seen him have a seizure, but I also knew that you can not know someone is having seizures.

Two nights before the scheduled EEG I was sleeping with Nathan on my Mom's love seat.  Something weird happened and I actually think he had a seizure that night, I really do think it was.  I was about to record it, when it stopped.  It is the one and only time that I know of, that it's happened, but he wakes up in the middle of the night all the time - upset - and we don't know why.  So who knows.  

What happened?

Well...  he was sleeping, and he let out this whine, and it didn't stop.  Then he would build that whine into a cry and eventually he'd scream, stiffen up completely - like a complete full body stretch, arms and legs outstretched and completely stiff.  Then the whole process would start over.  Whine, build up to a cry, scream, stiff, whine, build up to a cry, scream, stiff...... I grabbed him and pulled him over on me completely unsure of what o do, he wasn't responding to me, he wasn't answering me or even looking at me like he normally does.  So I had him laying on me, back against my chest and belly and I realized while he was doing the whine building up to the cry, he was also trembling.  This repetitive process went on for about 3 minutes before it stopped.  Then he turned around, looked up at me like "what am I doing on you mom?"  He pointed at his pillow, I put him over there, tucked him in ... and he went right back to sleep.

So I called the Neuro the following day, and told the EEG people when he had it done. 

 Nathan is the "Frog" and the EEG lab is in the frog clinic ...

 Nathan playing games on the waiting room computer ....

 Getting the electrodes connected

 Wrapping up his head......

All connected ...

When it came time for the strobe lights, Nathan just laughed!  He thought it was the coolest thing.  He just laughed! Couldn't get him to fall asleep because he falls asleep with his hands behind his head, and he couldn't do that.  So he'd just get pissed off. 

The hour long EEG revealed nothing, so they want to do a 24 hour one, which is May 2nd.   I am hoping that if he is having seizures, that they pick up on it then. 

He had a check up with Endocrine to check to see how the HGH is doing and she was REALLY HAPPY with his growth.  So that's good news.  We see him going in spurts right now where he is really hungry and eats really well, and then when he's not so hungry and just doesn't want to eat.  Lately though, he has been eating like a champ and it's been so nice to see!!

His Autism (PDD) is doing okay.  He's still got major sensory stuff going on but he is doing so well in school.  He absolutely LOVES it...  it's a complete 180 from the school he was in before.  The preschool he was in before was very dull, not colorful at all, and just... he didn't enjoy it.  I donno what was going on there, but he didn't like it, and neither Dennis nor I did either.  Everytime he would go he'd cry.  We recently found out that the teacher is no longer working there either, not sure why, but she's not. This new preschool is amazing, so colorful.  Very welcoming, which is huge.  And his teacher is great.  Everytime we tell him it's a school day, he starts jumping up and down for joy.  We tell him he gets to ride the bus and he's excited.  HE LOVES SCHOOL.  Loves it!!

Then he had an appointment with Genetics too.  He saw DR. Glass.  So we would finally have answers on if his brain issues... and if it was Dandy Walker or Jouberts Syndrome, or something completely different.  We were going to finally find out what was going on with his last MRI.  He definitely doesn't have Jouberts Syndrome, I guess.  And Dandy Walker is questionable, his words were .... "It can be called at Dandy Walker Variant however it is all caused by the Russell Silver Syndrome I believe..." and then said he's rather call it some long doctor word.  So he doesn't really have Dandy Walker either, he has an under-developed vermis (in his cerebellum) or missing vermis ... and we also found out he has something called (we think this is what he said) ... Polymicrogyria ...  he said that, in a normal brain (which we all know) there is one fold, separating the left and right sides of the brain.  In the case of Nathan, along with the missing vermis, he also has a bunch of folds on the front of his brain.  Dr. Glass compared it to looking like a "bunch of grapes" ...

This is a Normal Brain

This is a Brain with Polymicrogyria

The last thing I wanted to talk about is that Dr. Glass said he conferred with Dr. M in WI (Nathan's Genetics Doc there) and completely agrees with her assessment of Russell Silver Syndrome.  Everything going on with Nathan, he said, can be linked back to the RSS. 

We are connected with a great group called the Magic Foundation, and they are having a conference this summer (which they do every summer) and we'd love to go.   But we just can't afford it.  I am debating tying to do some fundraising so that four of us could go, but I don't know if I can do it.  I really want to but...  I donno.......  UGH...

And to end with.... a few photos of Nathan "folding over" on St. Patricks Day...

Kangaroo Time!

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I haven't updated in awhile.  NOT because the boys haven't had medical stuff going on, but because we have been struggling in WA a lot!  The transition just hasn't been easy, from WI to here.  We love the hospitals here, the treatment that Nathan has been getting, and the other kids... but the cost of living is killing us.

Regardless, I'm trying to be a lot better at updating.  I know there are friends and family out there who are wondering how the kids are doing medical wise, so I promise I will do better this year at updating! 

I had to laugh this morning, I had 25 unpublished comments this blog!  SERIOUSLY!?!?!  I rarely look at my Dashboard so I just didn't see them.... and they were ranging from recently to ALL THE WAY BACK TO JUNE!  HA!  Oops....  (Cartoon me has a bunch of hearts floating above my head from all the love I feel though!) .....  teehee... 

So...... Noah has an appointment in Seattle tomorrow, and I have to call to reschedule some appointments for Nathan, and find out what exactly is the hold up for his Autism Clinic because it was suppose to happen in December.  Most likely - it is because I never turned in any school questionnaire ... which was never done, because HE REALLY DIDN'T GO!!  He went for a few days, then got sick for 3 weeks.  This was after he didn't start on time because of his surgery!

Oye-vey......

So ....  Nathan has times where he just cries and cries and cries...   the only way to calm him down really is to do the kangaroo .....  I really regret getting rid of my sling....

 I end up sitting on the corner of a blanket, and then tucking two corners behind my back to make it tight, then he usually wiggles around and flips about inside the blanket.  Sometimes he'll go in the blanket and completely stay covered up, head and everything ...  and sometimes he just  likes to be all tight in there with his head out.  And it has to be my purple blanket... well... usually.  His favorite color is purple.  Usually he'll either cheer right up, or with in a half hour he'll be better and smiling.

We are constantly finding him in places he shouldn't be... he managed to figure out how to open our dryer one day, and heard him yelling - found him in there with the door shut.  The hard thing is, he opens doors!  We put baby locks on a lot of doors but he still manages to somehow get the things off and then opens the doors.  He's a smart little stinker that makes our lives difficult sometimes.  He runs out in the streets and he has left our house without us knowing he left.  Now, mind you - we realize this in a few moments that he's not where he's suppose to be, and then of course, instant panic!  It's hard.  I don't know what to do, right now I just try to make sure I know where he is ALL THE TIME.  Right now, he's on his couch watching cartoons and Kaedyn is laying beside me and Daddy playing with my cell phone (he's singing the alphabet) ...

Anyway - the other day while at my mom's she brought down an empty container to put away my Mom's Christmas Village she puts out on the mantel of her fireplace.  We both had gone in the laundry room for a second, and this is what we came out to.

 Any small confined place he can find, he's in........

There are just things that strike me hard and I keep saying, as much as I want to be wrong, he HAS to be on the spectrum somewhere... this isn't just a stage thing for him.   ::sigh::

He had an MRI done this past week too, he has been getting his migraines more again and it's been awhile since he Dandy Walker Cyst was checked....  We don't know the results yet, but any prayers that they are good would be welcome :)

April 17 ~ Doctor Appointments

MRI, Neurology (all Nathan) … Endocrinology added (Nathan)

Sorry I didn't update right away last night (written 4-18).... I was so tired :( I still ended up being awake until almost midnight.

Anyway .... we left the house at 6:45 am ... getting to the clinic at 8:30...walking back out the door at 5pm, getting home at 7pm. Oye!

We got there and Nathan got the Cloral Hydrate ... and thankfully did NOT need an IV this time. It took awhile for him to go to sleep but he finally did. So off to the MRI he was whisked while Dennis and I got sandwiches - then went back up to the room. It wasn't very long after we got back up to the room 40 minutes later or so that he came back into the room. While the nurse was doing something, he woke up - hates being messed with. She had put some patches on his arm to help numb the skin just incase they had to do an IV and for the blood work that had been ordered. So after she gave up and realized he wasn't going to pass back out, Dennis and I got up an were talking to him. Lab came up and Jenny (our sedation nurse) asked if they had all the orders. Apparently it wasn't just genetics ordering tests, but neurology too. Then it came to light that - our appointment with neuro had gotten switched from 1:45 to 11:30 ... well... Nathan was still in the MRI at 11:30... so since he didn't show, and they didn't call (not knowing that the appointment had been switched) ... then he got marked as a "no show" and the labs were taken out. (rolling eyes, what a mess) ... so after we got all that situated, Nathan got poked AGAIN for the neurology labs.

After Nathan woke up, we were basically told we'd have to go back to our original appointment (the DR had a conference or something until 2) ... so we walked up and down the hall outside of Neurology while Dennis sat in the playroom with Nathan ... Kaedyn was tired, was the only way I could get him to go to sleep... so after he did - it was a little bit before we got called back.

Basically - Dr. M said that the MRI came back good - there was no signs of hydrocephalus and his Dandy Walker was still stable (whew!) but when she had run the labs, checking his hormones and other stuff... his thyroid level came back showing hypothyroidism, but since it was just one blood test, and slightly elevated, she wasn't sure if he actually had it and it can be a sign of migraines (which we have been suspecting) ... so she decided that she wanted us to see the Endocrinologist right away and talk to him about the Growth Hormone and so he could keep an eye on him starting the migraine med that she was going to start him on. She decided to go with a med that one of the side effects is to make you more hungry, and hopes he gets that side effect. He's starting out at a tiny bit once a day for a week, then the same tiny bit twice a day for a week, and then the following week doing it three times a day which is where we'll be at. She wants me keeping a migraine diary for her too, for him. So I asked her about my suspecting Autism and when I handed her the list I had made up, she nodded in agreement and said, she agreed and he is showing a lot of key symptoms. So she was putting in for an assessment at the Autism clinic - which will take a few months to actually happen. So I'm going to keep that diary along with his migraine one. She called Endocrinology and we couldn't see him until 4pm - so, we were stuck there for awhile longer.

Made some phone calls and then settled down for another long wait. Once we got called back, he did a bunch of measurements said that even though it doesn't look it, his head is larger for his frame and he really does fit the symptoms for Russell Silver Syndrome (which is one of the things that genetics is testing him for but we won't know the results to for several months) ... anyway - he said based on what he was seeing, he thought that Nathan would be a great candidate for Human Growth Hormone. He wants to do further testing for the thyroid issue to see if that is a true thing, or if it was just a fluke today... and some other testing, and then he thinks in about 6 months, odds are, we'll be starting it.

HGH is a daily injection so that means that Dennis and I will have to learn to give it to him.

At this point..... I really just want to know what else this poor kid could have wrong.

And it's driving me insane that when I was pregnant with Noah and we found out about his MT16 I was told he would be so mentally and physically delayed it wouldn't be worth it, and was basically made to worry - and with Nathan, when they discovered the cyst and 2-vessel cord at the 20 week ultrasound, they told me "not to worry" that "everything would be fine" ... and now he has this coming up and that coming up and more diagnoses and more things going on then Noah EVER had. Noah was in the hospital more, but I feel so bad for Nathan.

When we tried to pick up the medication for his migraines - we were told they had to order it, so we asked them to send the prescription to the pharmacy at home, and we'll go through them.

Basically - that was it. By the time all that was done I had two very tired babies...