Still here...

I'm still here. It's been a little rough around lately... and I promise that one day I will give all of you an explaination, but now is just not the right time. Hopefully, things for me will be getting a little easier. But for my poor little man... his "rough days" seem to be multiplying.  He did have a nice little stretch where he was feeling good and playing a good bit, but the past few days have been so unfair.  He's having a lot of trouble breathing.  And his breathing treatments really aren't helping... and he's still at a high dose of steroids, so I can't really go up on them.  So I'm not sure what to do or what's really causing the bad breathing.  He tried to stand up to play a couple times today but then started having trouble breathing and wanted back in the rocker.  It's painful to watch... and just not fair. 

Not only is he struggling with the constant pain, but now he's struggling just to breathe.  I don't know if he has a cold, if the sore in his airway is acting up, or what... but it's making me just a little uneasy that I'm doing everything that I would normally do when his breathing goes bad, and it's still not enough. 

And now, there is no more doing bath on the table... only in the rocking chair.  And even that is a complete struggle to keep him from having a nervous breakdown.  He hates bath.  I hate bath.  My mom hates bath.  Anyone who watches bath hates bath.  And you have to actually see a bath to realize how traumatic it really is.  I start having anxiety at least a good 2 hours before bath... and I think he senses it too.  

I think we sometimes forget that he's almost 2 years old and is completely "intact" mentally.  And just because he can't speak to us, does not mean that he doesn't know exactly what we are saying.  So when we mention "bath" or a "diaper change," he immediately gets that pouty lip and starts with the anxiety attacks. The past few baths have just been miserable.  I'm not sure if it's because he's having so much trouble breathing or that he's just at the age now where he hates us messing with him and holding him down. 

Anyway, that's pretty much how it's been around here.  We are taking one day at a time.  If you have sent me an email or a message on facebook, and I haven't written you back... I am truly sorry.  I really haven't been on my computer in a while or in the right frame of mind for that matter.   I do want to say thank you, though to everyone for your kind words.  It's touching that so many strangers who don' t even really know my situation are so supportive.  I'm blessed with the best support system I could ever ask for.  Please bear with me on the blogging.  I'm trying hard to focus on what's important and using any free time I have to try and de-stress:) 

Hopefully, my little man will be back to being his rotten, fiesty little self in no time.  

He has now traded big bird for a pink pig.  I know... poor big bird.

Update

Hey guys... sorry it's taken me so long to give an update.  I have a A LOT going on in every aspect of life:)  Thank you to everyone who sent me a message about an update.  It's so nice to know that people care about us so much and are so sincere in wanting to know how Tripp is doing.  

Since last Saturday, Tripp has had some much better days.  He has stood up to play more in the last few days than he has probably in his whole life.  I think it had a lot to do with me going up on his steroids and staying at a high dose for a while.  He was having so much trouble breathing the week before last that I had to put him on the high dose.  So I just enjoyed the heck out of my little man this week.  

When he is feeling good, he is just hilarious.  He's just plain rotten... there is no other word for it.  When he's standing, we make a little "path" of baskets and ottomans so that he can hold on and walk sideways.  Well, there cannot be a single toy on the top of his "pathway."  If there is, you had better watch your head or your toes, because he's throwing it off.  And he's got a good arm:)  He only wants one toy at a time... and when he's finished with that toy, he will throw it down and reach for another one until we give him the one he wants.  For someone who can't talk, he sure communicates with us well.  And don't dare talk to him in a "normal" voice, or mistakenly "correct" him for slapping you in the face... because he will give you that pouty lip and get his feelings hurt so bad and your heart will break into a million pieces:)  I love him so much.  

Yesterday and today, I could tell that he wasn't feeling AS good... especially today.  I started him on the Methadone for pain yesterday evening, and today I could tell he just wasn't the same.  But it started this morning when he wasn't breathing well.  He had to have oxygen because he was struggling so much.  So I went back up on his steroids and started back with his breathing treatments.  It's always something.  He just can't catch a break.  We have been doing every bath and every diaper change in the rocking chair.  And both are so extremely painful for him (whether it's a good day or not) and that takes a toll on me mentally.  I think it's hard for a lot of people to understand that even when Tripp has "good" days... there is still so much about those days that is so sad and so painful to watch.  

But I am hoping that today was just a fluke and that he will continue having some "good days" next week.  Please continue to keep him in your prayers.  And please keep me in your prayers as well during these upcoming weeks.  I've been having some really tough days and I've been having to deal with some very difficult people who do not (and never will) understand this situation.  I need prayers for a peaceful and forgiving heart... because Lord knows it's not easy.  You definitely find out a lot about people during the hardest times in life.  I'm trying out a new motto: "They can't hurt you unless you let them." But I'm so thankful for the people in my life who ARE understanding, supportive, and sincere.  And I'm sorry for slacking on the updates... it might be this way for a few more weeks while I get my life together but please bear with me.  

Oh and yesterday my little sweetpea turned 20 months!!  I can't believe it.  I found out Tripp was not supposed to live to be a year old when he was about 2 months.  So what a blessing it is that I've been able to spend 20 months with him.  He is my favorite person in the whole entire world.  I live and breathe for him... I hurt when he hurts and I smile when he smiles.  There are so many emotions that I'm dealing with daily.  I'm so sad for the cross that he is having to bear, but so grateful for all the lessons he has taught me about life and unconditional love. 

 Mommy loves you, little man. 

And I know you've all been waiting, so here are a few videos from last week... When it looks like he is "waving"- don't be fooled-- he is totally saying, "Get out of my face," "No," or "Leave me alone."  

Man, I love this kid.

Love, 

Here's to you, my faithful prayer warriors...

As much as I DO NOT want to blog about this (because I always jinx myself), I think I owe it to those of you who have been storming the heavens for my little man.  So if it's all the prayers that made him have a good day today, please keep them coming... because I enjoyed the HECK out of him today! 

My little Rock Star.

We have resorted to changing his diaper standing or in the rocker. 

He won't let me lay him down flat anymore.



 His MAC and PC.

I probably could have held off on this picture. 

But for those who have never seen how skinny he is... here's to you.

This is bath in the rocker.  We've had to do it like this twice in the past week.

Not fun.

My mom was taking down her tree, but wanted to share with you a special gift we received after Christmas. 

This "prayer chain" came from St. Joseph School (the Catholic school that I went to K-8).

Every single student, K-8, wrote a special note or prayer to Tripp.

This truly meant a lot to me.

Thank you, St. Joe.

and Tripp says Thank You, too:)

I think we got more smiles today than we've gotten in 6 months.

If it happens again tomorrow, that's great.  If not, I am still grateful for today.

One day at a time is all I can ask for. 

Thank you God.  You are so Good.

(Videos to come soon:)

Love,

a little bit of everything.

We have been enjoying Nanny and Uncle Mike since Wednesday and I was so sad to say goodbye today.  I really loved having them here and really loved the extra help.  I wouldn't let Nanny spoil me too much, though, since I don't know when she's going to come back!!  Also, she and Mike had a list of places they wanted to eat while they were here (that they don't have in North Dakota:), so I gained a good 5 pounds from take-out.  

I knew I missed my sister a lot, but didn't realize just HOW much until she came and left again.  It was so nice having her here and being able to just catch up and hang out.  Man, it's great to have such a close family, but it sure hurts to be so far away from one of them.  Thank goodness she has such a good hubby that takes care of her, so we know she's in good hands up there in North Dakota:)  I love you both very much and will miss you until you come back!!

Today is the fifth day of Tripp's "#1" Fundraiser.  Thank you to everyone who has already made a purchase.   If you didn't read the post about his fundraiser, you can shop here- www.mythirtyone.com/drhodes  and 15% of all proceeds will go to Tripp.  The directions to follow are listed in the post below.  The fundraiser will end on 1/1/11.  Go check out the super cute items that Debby has for sale, while also supporting our little man:)

Brace yourself for this.... two of Tripp's doctors made house calls today!  Dr. Defusco (pediatrician) and Dr. Rodriguez (ENT) both drove to the house today from New Orleans.  I KNOW, right?!  Isn't that just amazing?  We sure were lucky with the doctors we chose for Tripp.  I seriously don't think I coul have found better doctors.  I needed to take him to see both but he literally will not even let us sit him up on the rocking chair- so I knew putting him in a car seat, driving a hour, then getting him out into the hospital would be close to impossible.  Both doctors offered to come without me mentioning it.  

For the past week, he has probably actually played for about an average of 15 minutes a day- and that was only right after his baths.  He will open his eyes laying on the rocker while we sing to him 24/7, but won't let us sit him upright.  About a week ago, he had spells where he could barely breathe at all without wheezing.  I didn't know if it was the sore in his airway acting up or if he just had a cold with increased secretions.  Either way, his breathing sounds a lot better now because I went up on a very high dose of steroids and and was giving breathing treatments around the clock.  So since then, he's been laying in the rocker and shakes his head "no" every time you ask him if he wants to sit up.  I know it could be a lot of things causing him to hurt so bad... but I just didn't even know where to begin. 

Dr. Defusco did a full check-up.  Listened to him, checked his ears, wounds, and everything (as much as he would allow:)  She could only get to one ear and said the other one looked like it was draining a good bit and that might be what's hurting him- but it had too much drainage to see in it.  So Dr. Rodriguez came with her ear suction, and her scope to look down his trach.  She said that the ear has fluid, but it's not really infected, and that both of his tubes are still in place.  She also said that below the trach (inside) there wasn't a big sore, but the whole airway just looked inflammed and irritated.  And being on the high steroids already, I'm thinking how it looks now is it looking a little better than last week.  

So between these two SUPER fabulous doctors, I think Tripp is going to be okay and I know that he is in SUCH good hands.  God blessed us with such caring and considerate doctors.  We are also going to work on getting his pain under control.  Dr. Defusco said that she wants to start him on Hospice- JUST so they can manage his pain better.  I think if we can get his pain under control that he may be able to have a better quality of life.  Because right now, 10 minutes of playtime a day just isn't cutting it.  I feel horrible that he sits in the same spot all day, every day.  But he just doesn't want to move.  

Anyway, today I am obviously grateful for Tripp's healthcare team.  Not only are there the two amazing doctors who came to see him today, but there are many other healthcare professionals that he sees that go above and beyond to make Tripp's life and my life a little easier.  And I am WELL aware that doctors or just people in general do not HAVE to be so accomdating, that's what makes me appreciate it even more.  Knowing that no one even asked them to come, or knowing that they didn't have to make the trip out here, means so much.  

This whole situation could be so much worse, but I am surrounded by so many amazing people.  Somehow, it makes it a little bit easier... knowing that I'm not in this alone.  I hope we spend many more years loving Tripp and watching him grow up together. 

Love,