Summer ends and School begins with LOTS of INFO

 So summer has gone and school has started I'm going to try to catch up on everything that has happened since I last posted about Rhett’s birthday. 

Family road trip.  Yes Rhett is asleep in the back of the car.  This is normal to the point that we had not even gone 5 blocks and he was out.  He will sleep for hours, and yes it is sad but this is life.

Rhett had an appointment with the cardiologists on June 15th for his cardiac cath because he has high blood pressure.  The doctor paged for me after Rhett was finished and told me that while he was under they gave him medication for his high blood pressure during the lab and the medication really didn't do anything.  Then he asked me if we have been part of Make a Wish before.  Geez!  This really sucks!

On the 18th we saw Rhett’s primary care physician(pediatrician) for his well-child, and Rhett told him that this last school year was a really hard because he is more tired than before, he can't seem to breathe very well, and that he sleeps more often and he's falling asleep in classes.  The list of what Rhett told the doctor just continues, but you understand that Rhett know himself rather well.  I sat there in dread because this is something that he had not told me anything about, even though I knew about it.  The pediatrician and the cardiologist collaborated and decided that it would be best if Rhett were mostly homebound this school year, because he cannot do a full day of school without injuring his heart by causing it more stress.  On top of making sure he is not turning grey and blue and purple because he is struggling at breathing while at school.  The pediatrician sent out a letter to all of Rhett’s doctors in June finding out what they thought about him being homebound and they all decided that it was important that he not completely be homebound.  Since being homebound is a very restrictive environment and they don’t want to restrict him from having a good quality of life, so they want him to be able to continue doing drama at JMS which he loves to do.  They also said that if he can take one class a day at the high school then by all means do it so.  We also saw the geneticist at the very end of the month of June.  It had been almost 5 years since we had last seen him so he was kind of wondering what was going on with our boys.  Like all the other visits that we had with them they took pictures and they told us that they presented the boys in several different places and nobody has seen anything like our boys before. Which we expected because they are just unique.  By the time we got to August the beginning of the school year was looming, and I still had not known what was decided with the doctors until about the 5th of August. I did find out that everybody pulmonology cardiology and pediatrician all decided that Rhett needs to be at home mostly, and they did put together a letter.  His pediatrician was representing all of them on what would be best medically wise for Rhett.  I had called an IEP which ended up on the 11^th of August, which was the day after Rhett’s appointment for pulmonology where he was going to have a pulmonary (lung) function test.  The test on the 10th of August informed us that his lung function had decreased from 16% to 14%. That decrease was from March 25th to August 10^th.

His PFT from March.

His PFT from August.

In case you need a little help with math that is a little over 4 months. I was expecting it to decrease because it always has and I'm sure always will. It was still emotionally really tough to get the information from the doctors even if I was expecting it. On the 11th at his IEP we gave them the information that we had, we also asked for him to be partially homebound partially in school and their response was it can be one or the other not both.  HOLY CRAP!!!  I DON’T NEED THIS!!!  It isn’t enough that his health is getting worse and he might die, let’s just do what we want not what the child wants. (Vent over for a little bit.) I am glad that I had gotten in contact with a AWESOME lawyer and was told that they can accommodate him and to set up a different date to have his IEP.  It was rescheduled and the plan was to get them to accommodate Rhett.  For those that are in education this isn’t trying to getting you upset or hurt you I am grateful for everything that you do.  Just a word to the wise, DO NOT CROSS A MOTHER AFTER SHE HAS BEEN TOLD HIS SON’S HEALTH IS BASICALLY FAILING. Get this a day after the supposed IEP Rhett had an appointment with the dietitian who blames his pulmonary function test decreasing on his 4 pound weight gain.  I was appalled that she would even consider that.  That 4 lb weight gain was from June until August and I was surprised that it wasn’t more seeing as we had family out and Rhett had a birthday and everything. So I had to explain to her that Dylan’s lung function also went down even though he did not have a 4 pound weight gain.  What a stressful week!!!  I was planning on having a fun evening trying to forget everything that happened that week with my friend Crystal (who I think is amazing!!!), But when I went to leave the house I looked at Rhett and noticed that he was breathing really hard and he was a little pale and blue.  I had to stay home and make sure he was ok, and force him to have a breathing treatment since he doesn’t like them.  On top of a breathing treatment I also had to give him a lot of extra encouragement to turn up his oxygen.  After all that and some time he did feel better but it was still frustrating because I still have had that opportunity to just relax and have fun with my friend.  The things that are given up for our kids.  On the 19th he started school at Skyline that one class every day.  I was picking him up and dropping him off that first day.  Then I found out that his aide will be coming to get him before class every day.  I did a happy dance when I heard that.  The next day was the first day of drama and he was able to go.  He love his drama.  We set up another follow up IEP after the one attempt on the 11^th and we had that IEP on the 25^th of August.  They had to have the assistant superintendent come and the compliance person.  We invited the lawyer that we had been working with to be there with us.  They finally said, alright we will support you at home.  But because we are doing that you need to do electronic high school with 30 minutes of home support a month.  Which for right now I'm okay with if they can give it to him in packets and as long as he has access to his email to email teachers with concerns and problems that he runs into in his education online.  So for now he is picked up every day from home around noon to go to his class at Skyline.  Then from there if it is a drama day he will be able to go to drama and if it isn’t he will get a ride home on the bus, or I will pick him up.  That is a lot of what we did over the summer for Rhett.  That is just a summary. I just couldn’t go into everything like I wanted because so much has happened.  I am still working on trying to find out where he can get his math, English, history, and science.  Who know how long it is going to be before he actually starts those classes.  Rhett was my helper when I tie dyed some shirts for all the cousins and myself.  Since I like color.  I would have gotten pictures before washing them all if I had thought about it sooner, but I did get them all after they washed.

He is always tired and sleeps often.

Told him to check his Os.  He wasn't very happy with me for asking him to do that, but he did.

When he is laying down this is what he was at.  Working a little hard to breathe, and as soon as he sat up his heart rate went up to about 120.  Not sure I like that number, but there is nothing that I can do about that.

Abby

Josh

Benny

Daniel

Mine

Gavin

Levi

Kofi

Dylan

Ama

Caleb

Nikole

Rhett

After being washed it was a great day to dry them.

My sister is awesome!  She took us out to dinner while she was in town.  I was not expecting it but my kids were sure happy to hang out with cousins and I was happy to hang out with all the rest of them.

Best picture!!  We were first at the restaurant waiting for the rest of the family.

Now the playing ensues.

Can't get enough as they were trying to out due each other.

All of them were so happy.

Crystal and I had a booth at the Angel's Hand Foundation motorcycle firefighter car show. This was for the non-profit that we set up this year.  We were able to talk to may different people and we were able to give all but 6 cake pops to those that we met.  We had a lot of fun.  My super helper went with me and helped set up and hung out until daddy came with the rest of the kids.

Here we are finally ready!

Our amazing booth!! With all the cake pops too bad we were ready before it started. LOL!

MINIONS!!!!  He was so excited!

Had to give them both hugs.

A quick pose before they were on to the next child.  But look at Dylan's face, so happy!

I am proud to present "Batman"!

Missy Nikole has had a full summer she went to girls camp and she also went to Brighton camp which is another girl's camp enjoyed both of them a lot.  I thought she was looking forward to starting school 8th grade being up at Churchill instead of at Northwest, which I don't blame her, less kids is always fun especially for junior high age.  She has since decided that she would rather not do the work and would like to change her classes.  Too bad for her is that I know she can do the work she just needs to do that.  She really enjoys school even though she is in all honors classes, she does struggle sometimes but not as bad as it could be right.  She has been struggling with being the only daughter, but she's starting to realize it's not that bad sometimes, only sometimes though. I have had good talks with her about her brothers and especially like with Rhett’s health and what's going on with it.  We are very open about things going on in our house, and things going on with us personally trying to make sure that communication is always open. That way they know they can always come to us with problems.

Dylan refuses to sleep in a room all by himself .  When Nikole is gone he would rather be with Gavin 

They are too cute together.

Gavin on the other hand is a whole other story and he was doing great for a while and then just exploded over the summer with anger and frustration. I'm not exactly sure what happened it got to the point where I did have to call the police on him, because he was out of control and raging toward me and toward his siblings.  That was everyone in the house at the time.  When that happened that was actually his birthday, which was really really sad and broke my heart.  I really didn’t want to have to do that, but he needs to understand that he cannot do stuff like.  I feel like this is going to be a slow process for him to realize and accept. When the police finally arrived they ask if we're going to be okay.  By then Gavin had gone to sleep which I am very grateful for, but before he did he broke his bed and he broke a few other things because he was just really really mad.  Since his bed was broken he ended up sleeping on the couch for about a week until we can get a new board in order to fix his bed.  We had him help with all that so he could see what it takes to fix something he breaks. So when he pitches a fit and gets explosive with anger and outrage it is easier to remind him of how much it cost to fix his bed.  I usually have to remind him that he will be fixing it himself again then he stops. I'm grateful for the opportunity of teaching him that he can't break things and just get away with it. Also by throwing a fit it is not helpful, respectful, or appropriate. He started off the school year kind of rough.  I honestly think they should have back to school night before school starts that way he would have an opportunity to meet his teacher and go over classroom rules and expectations before the first day.  For him it is much more helpful to have a heads up.  Sadly he didn’t have that this year, so the first day he ended up getting really frustrated.  He said I woke him up way too early and fell asleep for 5 minutes in class, and then his teacher nitpicked him out about that after school.  So he asked me to get him up a little bit later.  I have been getting him up a little later but in enough time to get to school on time.  He has done better, but still refuses to do homework.  Sigh, I think as long as he isn’t doing badly what is the point.  I have to pick my battles with this one. GRRRRR…..

Pitching a fit at the doctor's when I took him in for his well child.  Mostly because I had to let the doctor know what had happened on his birthday and it was bringing up not good memories.

He did ask me to delete this picture, but he is so cute I just couldn't bring myself to do that.

Dylan is just one of those kids he's always smiling always giggling and always laughing so happy unless he's being picked on, but for the most part this summer's been great for him.  He's had to play with his siblings, he has had time to just chill for a while, because with him and Rhett being the way they are they don't get to do too much.  What they do get to do is very important to them, that's a lot of us needing to stay inside.  We have been doing our best to just relax so that way we're not putting an extra strain on their bodies.  Mr. Dylan just loves playing with Gavin, he adores Gavin.  He also loves group hugs and he likes to be the monkey in the middle and have everybody grab around him and give him hugs.  He is such a lovable kid.  I am grateful that he was my last baby.  He is like putting a period at the end of a sentence.  LOL!!  On the the 21st of August I picked him up from school it was a Friday and he was so excited to see me.  He was giving everybody he saw a hug.  So for every person that came out of the building he was bound try to give them a hug.  The reason for this behavior was his friend’s birthday and he was just so excited.  He told the director of the school that he was giving everybody hugs because it was her birthday.  What a cutie!!!

He lost his first tooth!  He was so excited, but then that excitement turned to worry that he would lose all his teeth and not get any teeth back.

Trying to get a cute picture of him is too easy.

After getting all of the horrible news in June between the cardiologist and the pediatrician, I decided I need to try to figure out what I can do from home that way Rhett is not by himself during the day while he was at home.  I went to a meeting that a friend invited me to go to.  I found out that he and several people that I am now good friends with are real estate investors.  Well I am also a real estate investor but I never considered it too much.  After meeting with him and all these other people I figured I would have the support and encouragement I need to build my portfolio.  I am grateful to come along and get the support that I need to increase my investments to the point that my kids can work for me and get paid to do what they do for me.  On top of being home and having the freedom to take care of things that I need to take care of.  If you know anyone that wants to also real estate invest, or needing to sell their house please contact me.  I have only been part of this community a few short weeks so I am fairly new.  Even so I am loving it completely. 

CASHFLOW!!!  Love it!!  If you ever want to play let me know.  It will help you figure out how to think about money.

Every time I go over to Crystals house my cute little Daenerys friend just cannot get close enough.  She thinks I am stressed all the time and I am so happy to know that she cares.

One of the many times she cuddles with me.

Yes my sister is fun and amazing and love to go to the store with me in the middle of the night.  We have the whole store to ourselves, it is AWESOME!!!  Oh BTW Emily our produce friend wishes you would come back, he says we light up the place with our giggles and jokes.

One of our many middle of the night Walmart runs.

On a totally different tangent I had a fun summer with my sisters.  We are a crazy group, but it is nice having such great women to be related to.  We were all able to go to our family reunion in Idaho and these are some funny pictures that we got while we were there.  It was way too much fun!  Love you Emily and Hillary!!!

We were practicing our fish faces. LOL!

See we needed all the practicing we can get.

You know how hard it is to hold a fish face and not laugh when everyone else is laughing?

Oh idea time is coming up!

I am expecting TWINS!!!  How lucky am I?!?!

Honestly couldn't stop laughing!

The last picture before the TWINS arrived.  How exciting!!!

The TWINS have arrived!!!  Baby Mel didn't survive more than 2 days and baby Malaika is doing wonderful.

As the summer drew to an end we were bless to be able to take the kids to Cowabunga Bay with the Mascot Miracle Foundation and with Angel's Hand Foundation.  The kids enjoyed it both times, but with them there is no way we could have gone and done something fun like that.  They were only a weekend away from each other but the kids loved being able to go and be "normal" for a little time.  Nikole and Gavin found out that the water slides have cold water on them, but they still enjoyed going.  Here are the pictures I was able to get while we had fun in the water. 

I was surprised to see the "Zoo" playing in the water too.

I was awesome to see them coming down the slides. 

And he was all wet. LOL!!!

Need a hand?

Next?

Not even phased. :)

Watched to see what was going on.

They didn't even see me.

What a good sister the boys have.

That has got to be hard to walk in water in fur.

The kids thought it was so funny to see the "Zoo" walking around in the water.

Wondering the river.

Ha ha! There are all three of them!

You can see them all so much better here.

Who can hold their breath longer?

He wants to play too.

Who is the winner?

Love how they are social creatures.  They spotted the kids.

Dylan loves hugs and is grateful that he gets hugs.

Knuckles!  Caption this picture.  LOL!!

Pose for the camera.

The bear needed to have some attention too.

What awesome buddies!!!

Swim Dylan!!  What a helper Nikole is for her brother.

Ready?

I am totally missing a child.

Gavin is in the background.

Rhett wanted a picture of this.

He said to get a picture of the buckets dumping. Not a great shot.

Ok so this shot is looking pretty good.

Bring it on, FIGHT!

Oh kid caught in the middle.

Circling each other.

Trying to be the referee.

I dare you to bring it on. LOL!

I am ready!!!!  Bring it!!!

Charge!!!!!!!

You missed!

HA!

Wonder how heavy those costumes are after being in the water for that long?  Thank you MMF!!!

Back again and enjoying it.  Thank you AHF!!!

Yes he looks tired.

Ready to play!!!!

We came across this "bike" while we were running from one place to another on a Saturday this last month during our last summer good bye.

What kind of bike is that?

We also went to the zoo with Crystal and her kids for the last summer farewell before all the kids went back to school.  The only picture I have are these below. :)

Those boys are too cute together.

Crystal and I hanging out.  Man I miss doing that.  I think I need to hang out more.

This was our summer in a nut shell.  There have already more things going on that I need to update on but this post is already really long.  Sorry, but I have been going a million miles a hour.  I will be better, at least I hope I can meet my expectations of myself.