Boy has it been a while.  Just when we thought all had settled, January happened and so did the hospital stays. 

January- aspiration pneumonia

February-aspiration pneumonia

March-aspiration pneumonia and he had to be in the PICU again.  It was horrible.  Intubated, pumping him full of fluids and breathing medication. Discovered after a reflux study, that he had 192 episodes of reflux in a 24 hour period.  Started 2 new medications to help with reflux.

April-aspiration pneumonia.  Could see in his x-ray that his anatomy is different then most.  His diaphragm sits higher on the right side, which pushes his lung up, which makes his reflux that much easier to go straight down into his right lung and cause pneumonia.  They decided to change his mickey button to a GJ and have him on a 24 hour feeding schedule straight into his intestine to prevent any more pneumonia, so he could stay healthy enough to get a fundoplication.

May-healthy enough for surgery.  All went well and had his mickey button placed back in.  Then he got in infection in every incision site.  But after treating him with liquid and topical antibiotics, he healed nicely. 

So here we are in September. This is the month when I started my blog for the first time.  It was hydrocephalus awareness month.  Funny how I have really been wanting to blog around the same time again. 

Maddox is doing really well.  After the crazy almost 2 years of literally dying in front of me twice and being lifeflighted to Texas Children's in December of 2013, he is finally starting to be the "old" Maddox again.  The chatty, silly, moving a lot more then he did and actually staying awake for at least 50% of his therapies, school, etc.....

He continues to gain weight.  So much so that he is on a small diet.  He only get's 550 calories a day but continued to gain on average 1-3 pounds a month.  So we are now only giving him 500 calories a day, to see if it will slow his growth/chunking up spurt. He is 51 lbs now and the bigger he gets, the harder it gets for him to move and us to move him. 

He started the 1st grade this August, but is still a homebound student.  Which he will be forever, unless they invent some sort of self contained clear ball/box for him to be at school in, so he is not exposed to any germs.  Especially respiratory ones.

Still doing our special needs monthly meeting.  Attendance varies from a small group of 15 or less to a crazy, I don't know how to handle all these people 50 +.  But I love it.  It's great to meet other families who are also walking the walk.  And it's such a blessing to meet their beautiful children. 

As for the rest of the family.  Mommy and Daddy are still chugging along.  Exhausted, worried, stressed about all the kids, but especially Maddox.  Devon my oldest, is engaged to his long time high school sweet heart Maddy.  She is the most wonderful, caring, sweet, intelligent and beautiful girl. And I can't wait for her to be part of our crazy family.  Bryce is 16.  A junior in high school and just officially received his permit to start driving.  Still haven't taken him out yet.  But he keeps harassing me so I will eventually give in.  Marissa is 10 and started her last year at elementary school.  She started gymnastics last summer and is a natural.  I still don't understand how you can tell your body to flip like that.  My body would slam the brakes on and skid instead.  She is also part of a school cheerleading team.  It is a lot of work, but it give her and I the opportunity for some one on one mom and daughter time.  And it gets me up and moving.

My step mother passed away last August from alzeheimers.  It has been extremely hard on my dad.  My uncle and aunt have moved to Texas to help him with this horrible time.  But he is still unable to move past it.  And I have had to watch him also become disoriented, confused and depressed.  I hope he can move forward before it's to late.

My mother in law has lung cancer.  She went into remission, but unfortunately the cancer returned and is now very aggressive.  She is doing immunotherapy to try and stop the cancer from growing.  We won't know anything for the next 4-6 weeks.  It has been very hard on my husband.  Him and his mother are extremely close and he is an only child.  So this has been a huge part of sadness and stress for him.  My father in law is also having a hard time.  Him and my mother in law were very active people and since she has become ill, he has gone from being active to becoming a care taker.  And he is having a hard time with it.  The whole situation is really hard for everyone.

A few good things have happened though (besides Maddox doing well and all the other stuff). My best friends got married.  We were all friends in high school and remained friends through the years.  Finally December of last year they got married.  And they are both the happiest I have ever seen them.  Plus they became grandparents to a super cutie baby Zane.

And my neighbor had a baby last January.  It's funny how before I had Maddox, if anyone close to me had a baby, eventually I ended up pregnant too.  But now I just enjoy loving all over Avery and then sending him back home with his mom.  He is a super handsome little man and he knows it. 

If your reading this post on 9/18/2015, please take the time to send a letter to the Texas
Please don't forget that tonight is the last day to send in letters to the HHSC about the proposed Medicaid policy changes and rate cuts that will impact our children's therapies they receive. We can't complain if we don't do anything about it. Be the voice for those who don't have one! here are the email addresses
                                                                                                              MCDMedicalBenefitsPolicyComment@hhsc.state.tx.us

RADAcuteCare@hhsc.state.tx.us

That's it for now.  Sorry it has been so long.  But it's always an adventure in our lives.  Sometimes when I'm telling someone all that is going on, they look at me like surely I'm making things up.