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!!

Long Overdue... Like Usual.

Just a quick update on what I blogged about last time - He now has Children's Special Health Care, but it does not cover CoQ10 without a confirmed mitochondrial disease diagnosis.  He also started the CANI program, but I have since stopped.  I tried to give it a chance, but it wasn't relevant to us and I found it overwhelming to devote that much time each week to something that wasn't beneficial... plus the lady was about a half hour late for EVERY meeting.  We tried to do a blended diet for Grant for a while.  We got a very nice blender from BlendTec, but right now it is overwhelming to try and keep up with.  I don't feel like I know the right things to give him and the blends are so thick and voluminous that it makes feeding him even more difficult.  I haven't given up on it forever, just for the time being.  

 I was really hopeful that this latest genetic test (Whole Exome Sequencing) would give us some more insight into what was going on.  Unfortunately, it didn't reveal much.  It did find 4 different genetic variations, but they have unknown significance.  Matt has 3 of them and I have the other one, and we are fine.  Perhaps the combination of the four of them has some significance?  No one knows.  I thought this test would give us a clear answer, or at least tell us more about his duplication and our risk for future children.  It didn't do any of that.  They can't tell us our risk for future children because they don't know what is wrong with Grant.  We plan on seeing another geneticist down at Riley, because I don't feel like they really care that much about us.  I feel like they are getting the results and just reading them to us.  I think there is more information out there if they looked a little harder, but it doesn't seem like they care to do that.  Maybe I'm wrong and this is how they all will be, but I want to find out.

We have been down to Riley a few times.  The appointments haven't been very informative.  The biggest news is probably that our new neurologist who specializes in Mitochondrial Disease didn't seem to think that is what is going on with Grant.  He kept bringing up Autism... which just a week prior our Developmental Pediatrician didn't seem to think that was Grant's issue.  The Neurologist tried to give us some insight on our future and told us that Grant will most likely need help all the way through school (Including high school).  He also told us to be prepared for Grant to never live independently.  Our next follow up is in 6 months and we may do a skin biopsy to see if Mitochondrial disease is a possibility and if we need to proceed with a muscle biopsy.  I am giving up hope on getting a diagnosis anytime in the near future.  I am trying to come to terms with that. 

We have started going to private physical therapy in addition to all the therapies he receives through First Steps.  We have only been to the one in town here a few times so far because the week after we started we had the opportunity to go to an intensive physical therapy program at Euro Peds in Pontiac, MI.  His program had him going to therapy for 2 hours each day for 2 weeks.  We stayed at a hotel because the drive was 3 hours.  Luckily, the hotel had discounted rates for Euro Peds patients.  We had to pay $60/night, but our room had a kitchen and was really nice for the price.  The hotel had a hot breakfast and provided dinner Tuesday through Thursday.  We learned a few different things that help Grant during therapy.  He was in a compression shirt, and that really calmed his tantrums from full blown to mild.  He will work through the tears if you keep working with him.  They also recommended compression pants and gloves.  They want him in AFO (basically a shoe insert that comes up below the knee) to help keep him from hyper-extending his knees.

While we were there we did pick up a new skill – ROLLING!!  He can now roll from back to belly and back to his back.  He is really a rolling pro.  He doesn't like to do it, but he will if you prompt him.  He has only rolled on his own without prompting 3 times.  But that is 3 more times than I expected!!!  He still seems to lack motivation.

He has been fitted for the AFOs, and should be getting them in 2-4 weeks.  I am pretty sure insurance should cover it all, so I hope that it helps his standing.  I got to pick out a design to have on the AFOs and I picked Notre Dame.  Matt is pretty excited about that!  We went to Midwest Orthodontics and I was pretty impressed.  In fact, it is the first appointment that I went to that made my life easier.  While I was there I found out that they can order his SPIO compression gear.  That is one less thing for me to have to worry about :)

I just had another foot surgery to remove all the hardware.  I am excited for my mini vacation!  I will try to blog more frequently.  Sorry for those who keep checking to see that I haven't posted anything.  It is hard to keep up with life, friendships, my health, and blogging.

Just Checking In

I know that this post is long overdue.  I have been putting it off because Matt broke the power cord to our laptop and I haven't wanted to post from my phone.  Luckily, I found a computer to use which will make this update take a lot less time. 

Since the last time I posted, Grant was baptized.  It was a very stressful day, and I am glad that it is over.  I didn't plan it very well and his baptism was schedule right in the middle of his usual nap time.  He was a fussy mess.   Thankfully we made it through it!

We still have to wait until the end of August to get the results of our genetic testing back.  We still don't have a diagnosis yet.  His progress is slow, but at least he isn't moving backwards anymore.
Grant has come a long way with his progress with his hands and arms.  Not only is he reaching for things, he is allowing his hands to be manipulated.  He is so much more accepting of someone moving his arms and hands it really blows my mind.  He used to start to crying hysterically whenever someone would touch his hands.  Now there are times that I sit on the couch and just hold his hand.  It is absolutely amazing. 

Unfortunately, there haven't been too many other changes.  He is still extremely limited on what he can do physically.   His therapists think that his muscles and joints all work and he is capable of walking, but it will just be on his own time.  I have been looking into getting him private therapy because I would like a second opinion if we need any special equipment like a stander, braces, or a gait trainer.  Like everything I try to do for Grant it takes a lot of time and paperwork.  I am trying to get everything in order, but it is difficult when people will not return my phone calls. 
I am also still in the process of getting Children's with Special Health Care Insurance for Grant.  I'm hoping that this insurance will pay for Grants CoQ10 that is currently not covered by his other insurances.  Right now we are giving him CoQ10 that is over the counter and not as good of a formula as they would like him to be on.  We just can't afford what they want him to be on because it is $200/mo. 

Grant started a new program called Early Headstart through CANI.  They come out each week for 90 minutes.  There are different things that we work on and it is more of a hands on program then the other therapies he receives.

I am currently trying to get Grant on a blended diet.  Instead of the formula he gets through the tube, I would use a  special blender to blend real food thin enough to put through the tube.  The blenders are expensive even with a medical discount.  They are about $300 (including tax) for a reconditioned one.   I really would like to get him on the blended diet because right now his stools are completely liquid and that just doesn't seem right.  I need to make an appointment with the G.I. doctor because of that and because his g-tube site has some overgrowth of tissue that needs to be "burned off" with sliver nitrate sticks and I don't think I can do it myself.  I'm hoping that the real food will be better for him and help him hit new milestones.

It is hard having a special needs child.  I don't think everyone understands.  People tell me not to dwell on it or not to label Grant as "delayed".  But it is hard when you have to feed your child through a tube 3 times a day.  Every commerical of a baby or anytime I see a child out, I am reminded that Grant is different.  He can't walk.  He can't talk.  He can't even feed himself.  I am constantly reminded of it.  I am jealous of people with normally developing children.  I know that things could be worse, but I just wish our life didn't consist of doctors appointments, therapies, and tube feedings.  I wish things could be easier.