Chugging along!

Since I last posted things have gotten better.  Grant passed his 24 pH probe to check reflux and he passed his gastric emptying study.  However, when he had his endoscopy done it painted a different picture. His stomach showed a lot of irritation which indicates reflux.  The sphincter at the bottom of the his stomach was closed so tight the doctor could not get the scope through.  The doctor dilated the sphincter to get the opening to the correct size.

Since the procedure, he has not been throwing up!  It is likely to tighten back up again, but the doctor would rather dilate it again a few more times before resorting to surgery.  The surgery is not ideal from what I have heard.  I haven't researched it because I have enough on my plate so I've learned to only research what is relevant at the time.  Just take things one by one... yah know?

We have had the chance to have an appointment with an orthopedist for Grant.  My concerns were about him possibly dislocating his hips at night, the difference in his femur length, and his flexibility.  They did an x-ray on his hips and looked him over.  The doctor said his right hip socket looked different, but wasn't an issue.  He said his femur length wasn't an issue because it was only 1cm.  And he gave me a pillow with straps to use at night to keep him from crossing his legs.  The pillow hasn't worked for us but I cut the straps off to use them separately.  That has really prevented the issue we were having.

A lot more has been going on, but they are all little things:

Our first steps OT left the program.

We are working on getting a wheelchair and a sleep safe bed.

We start private OT next week

Grant has initiated a few steps while I help him stand (yay!!!!)

I decided to start the process on getting a gait trainer.

And Grant likes to headbutt now.  See the bruise on his forehead in the picture?  Ouch - That's ouch for me, not him.  He thinks it is funny... I think it hurts me!!

...and more but I can't remember it all and I can't say the other :)

24 Hour pH probe

Like the title says, Grant is doing a 24 hour pH probe test today.  It involves them sticking a sensor that looks like a tube down his nose and the other ends connects to a little device that records his reflux for 24 hours.

We got up at 5:30am so we could be at the hospital at 6:30am.  The probe was placed at 8:30am.  We had his arms put in splints to keep him from pulling at the tube.  I later took off the right arm splint. 

Other than him being very unhappy, it has been annoying for me too.  I have to be very careful to not pull on the tube.  I also have to record everytime he eats, coughs, gags, throws up, and lays down.  That involves pressing buttons on his recorder and writing them down on a piece of paper.  By 4pm I already needed a second piece of paper...

I made the mistake of keeping our other appointments today.  That means at 10:30am he had physical therapy and at 2pm he had an occupational therapy evaluation to add additional services to our regular routine.

He cried. And cried.  And cried some more.  He was not able to calm down no matter how many times I sung, "Baa baa black sheep".  It was very rough on all of us.

Tomorrow morning he gets to have the probe removed.  Unfortunately he has a gastric emptying study to see if his stomach empties too slowly.  I'm pretty sure it does because he is always sloshing around hours after meals.

These tests are because of all of his vomiting.  He will also likely need an endoscopy with stomach biopsies when we get back from vacation.

Here is a picture of my unhappy boy:

Puking and fun weekend times!

Grant has been having a lot of issues puking lately.  We have been having issues for a couple months now with the severity and frequency of symptoms varying.  This last week has been pretty bad.  He is gagging, dry heaving, and puking at almost every breakfast and the occasional other meals too.

We had to change outfits twice today and I'm worried about him.  His meal volume has stayed the same for the last 15 months along with the frequency as well.  When we get home we have a 24 hour pH probe, a delayed gastric emptying study, and an endoscopy with a biopsy scheduled.  He has already had the upper GI and ultrasound done with negative results.

We didn't let all the puking keep us down!  We had a fun weekend.  Saturday I got to meet up with 3 moms from my online birth month board I talk so much about.  We had a little play date at one of their houses.  Grant did well, but it was really eye opening to see what typically developing kids are like and the things they can do.

My mother-in-law, Grant, and I went to the Detroit zoo on Sunday.  It was a very large zoo, but the animals were few and far between.  We got to watch a short 4D movie there.  The movie was cool!  The 4th dimension was physical.  Water splashed us in the face, our seats vibrated, and bubbles blew through the air.  We also each took a turn on the carousel and we took two trips on the train.  I was most excited to see the rhinoceros because we don't have any at our zoo.  It was really incredible to see.  Overall, I think our local zoo is better, but  glad we went.

We head back home this Friday!

Pictures!

EuroPeds

Today is the last day of EuroPeds this week.  He still has one more week of therapy before we go home.  I haven't gotten to witness all of his progress so far because he does better for the therapist if I wait in the waiting room. 

I have been told that he has rolled independently a full 360° starting on his back.  Previously he would roll off his belly when placed, but never would roll onto his belly.  She has gotten him to push into sitting using his arm.  Previously he would try to sit without using his arms and obviously he wasn't successful.  There are other things he has made progress in, but it is hard to explain.

They have amazing equipment here.  He gets to wear SPIO which is compression gear that helps him stay calm.  Check out more information here.  He has access to gait trainers, the universal equipment unit (the cage he is in during the jumping video below) and special adaptive bikes.  It is really amazing that they have so much.  It is shocking how little other therapy places in town have considering how much you (or insurance) pays for therapy.

Below are some videos!

Jumping Jumping!: http://youtu.be/IPXsCcH-zrs

Walking Grant walking: http://youtu.be/-lqbYghyVdc

Biking Riding a bike: http://youtu.be/YLyljnfac28

Hopefully I have more to share soon!  I'll leave you with some pictures of the murals here.

Upsee

We finally got the Upsee in the mail a couple weeks ago.  We ordered it on April 7th when it first came out.  It was a nightmare!  We were refreshing the website for almost 4 hours because it kept crashing due to the demand.  It was $489 including shipping.  Most people would gasp at the price tag, but truly for medical equipment this was reasonably priced.  It is too new to have insurance help with it though, so it all came out of pocket.

Grant has been using it mostly at therapy until he gets more comfortable with it and then we will use it more at home too.  He went from 5 minutes to 20 minutes his second time!  I think being outdoors helped.

Here are links to his 1st time http://youtu.be/J9fJpqp2h68 and his second time http://youtu.be/d3eGKdVwb_M in the Upsee.

You can find more information about the Upsee here: http://www.fireflyfriends.com/upsee

Doctor check up

Let's start with some progress reports.  Grant has been moving a little bit.  You will see in the picture below how far he moved off the blanket I set him on.  He arches his back and pushes with his legs.  Any mobility is awesome!  He has been doing great standing and has started to use his legs by alternating them.  Which will be helpful when we get him walking.  He has also been playing with toys a lot more and he has even been mouthing a few toys.  He has also been doing great at drinking water from his cup.  I've been getting to hear a lot of sounds when he knows I'm there too.  He used to only make noise when he thought he was alone.  I'm really excited for all the new things!

I took Grant to the doctor today to get a few things looked at.  He has been sticking his fingers in his ears quite a bit lately so I wanted to make she he didn't have an ear infection - he does not.  I also had the cyst on the back of his head looked at.  The NP (nurse practitioner) said it was a lymph node and is perfectly normal.  I also had her take a look at his manhood.  She didn't see any problems and was glad I was getting a second opinion.

I also got a few test results back for him that were normal.  Now I'm just waiting on the upper GI results.  He is no longer throwing up or gagging during his feedings, so if the GI results are normal, I will hold off further testing unless his symptoms return.

He has been biting himself really badly.  He has broken the skin and it doesn't phase him at all.  I have been making fingerless protective gloves to try and find something that works.  You will see in the pictures his injury and the first prototype.  We are on the 3 prototype and I still have a few things I'd like to try.

General family update: We had our sewer line get clogged, but luckily a $95 fix was all it needed.  I'm really glad I was making a sandwich after I started the laundry or else I wouldn't have heard the water pouring onto the basement floor.  Sometimes I'm glad our basement is unfinished. It could have been much worse!  Both cars are still broken, but hopefully we will get to that soon.  My knee is feeling better but I'm still having trouble from time to time.

Okay, so I promised to talk about EuroPeds.  EuroPeds is a therapy center in Pontiac, Michigan that does intensive physical therapy.  We went for 2 weeks last year and did 2 hour days.  During that time we got Grant rolling back to belly and belly to back.  Since then we have lost back to belly but he kept belly to back.  I think he just really hates being on his belly. 

We will be going there for 2 weeks again at the beginning of June.  This time Grant will be doing 4 hour days.  My mother-in-law is coming with us to help.  Last year my dad came for a week to help.  Insurance should cover everything except our coinsurance.  Since it is out of state they do not accept his other two insurances that are state programs.  We will also have to pay for a hotel, but the Sonesta works with EuroPeds so we only have to pay $60/night.  It has a kitchenette so that will help with some meal expenses.  They also have breakfast everyday and dinners Tuesday - Thursday. Its not a bad deal.

I guess I'll write about his Upsee and our vacation next time.  Hopefully I can figure out how to upload some videos because I have a few good ones to share!

Time to bring the blog back

I haven't really blogged because it is very difficult to do from my phone, but I just downloaded an app that hopefully will help with that! 

I'm not sure really where I left off, so I will just begin with what's been going on lately.

Grant hasn't been tolerating his feeds very well lately.  He was being fed 3 bolus feeds a day of around 11 ounces.  About a month ago he started vomiting during his meals.  I tried giving him less and running the feed over a long period of time, but he was still having trouble.  I attributed it to his runny nose and mucus drainage.  When his runny nose went away, but the puking remained, I got concerned.

I tried to get into a doctor here that manages most kids g-tubes and I've heard lots of good things about, but he was booked up for a week.  I called the doctor we have been working with that doesn't have as good of a reputation but we haven't personally had any issues with.  He recommended a few blood tests along with an ultrasound and upper GI. 

We had those tests run today and we don't know the results yet.  He did really well with the ultrasound especially considering how upset he was this morning and how much he fought his last echo.  The upper GI was rough on all of us (my mother in law was there too), but it was over quick enough.

Side note: Believe it or not, but I think he was so upset this morning because of HUNGER!  He never shows signs of hunger and I would normally love this but it was the only morning he wasn't allowed to have food.  Figures.

Remember that doctor I wanted to get him into but was booked for a week?  Well, I made an appointment at that time and decided to keep it.  I met with him yesterday.  He agreed with the tests the other doctor ordered and told me our next steps related to his vomiting.  He caught that there is also something wrong with Grant's manhood.  He recommended surgery.  I will be getting a second opinion from a pediatric urologist but unfortunately the first available appointment isn't until the middle of August.

I also started to realize that Grant's flexibility may not be normal.  I think heay have some issues with his hips and knees.  I plan on scheduling an appointment with a pediatric orthopedist to have them check him out.  His PT thought I was on the right track when I showed her a picture of Grant sitting with his legs in the splits position in the air.

Also I found a cyst on his head that I will have checked out.  I promise I am not looking for problems!!

Other things seem to be falling apart too.  My knee started to hurt really badly about 3 weeks ago.  The doctor thought I tore my meniscus, but my MRI results today showed a bad bone bruise and some micro fractures.  So that was good because it means no surgery! 

Both of Matt's cars are not running, so we have had to figure out how to share just the van.  I have been stuck at home quite a bit!

Next blog I will update everyone on our Upsee and our plans for June.  Stay tuned!!