{Buckle up}

Buckle up folks this is going to be one rollercoaster of a post.

{and it might get a little long.}

Lately, life feels very much like a rollercoaster over here....

So many highs and lows.

Monday Bubba and I did some of this........

{trying to break into NOT ALLOWED areas of the hospital} 

{and some cuddles while we waited for the drs.}

The biggest thing that came from this day was that said dr. wants Bubba to get a hospital bed.

She wants to make sure that we have it "before things start happening."

She is hoping that if we get a inflatable pillow top that adjust to his body than it will help with pain.

{do any of my special mom friends out there have any advice on this one??}

While we were having so much fun at the hospital Regan was off doing this....

I know!!!... Can you believe it?

She would rather have gone to Disney than the hospital

Go figure!! 

Luckily it was her good friends birthday and they wanted to steal her for the day.

It worked out PERFECT. 

Even after a day of apts Bubba still managed to flash this bad boy......

Oh, how I LOVE that smile!!!

The next day, Tuesday, was a good day.

You can read the last post if you don't believe me. wink!

Wednesday started like this..........

and ended up like this.........

yup, a trip to to the ER.

I wont go into all of the crummy details but it was SCARY.

We called Bubba's dr. and he told us to call an ambulance.

{Regan was crying and very scared}

We live VERY close to the hospital so we decided to just drive him in ourselves.

Hubs dropped Bubba and I off at the door

and I ran in with Bubba.

They got us back right away with a room.

They got Bubba stable and did x rays to make sure his lungs were ok.

After only 5 short hours {a new ER record} we were able to go home.

Regan stayed the night with Nana.

{Ok, I need to take a quick break from this post to give a SHOUT OUT to my wonderful friends!!!

They have all stepped up and helped so much!

Sister Brown who has been taking Regan to school for me so that I don't have to wake Bubba up.

Nana for getting here right away and watching Regan for us.

Kara sent her Hubs to the hospital to help give Bubba a blessing and she sent snacks :)

Brandie left dinner on our door step {we got home at 8:30 so we saved it for the next night}

Kendal took Regan lunch at school after Nana had watched her over night.

CeCe watched Regan during a dr. apt.}

Serisously, I feel sooo blessed!!!!!!!!!!!!!!!!!!!!!!!!!

How in the world could I ever feel helpless when I know that we have such an amazing team....

Go Team Presley!!!

Ok, back to my rollercoaster post

{I told you it was going to be long}

Where were we.. Oh, yes Thursay!

Back to see the dr. to check up from the day before.

All good reports! woot woot!!

So.... Thursday night we.......

had a dance PARTAY BABY!!!

and finally here we are today, Friday.

 Today I woke up to....

I know... not the best way to start your day.

BUT

Bubba has had a good day! :)

Then I get a call from Regan's school.

Luckily we have a GOOD friend that works in the office and knows what is going on.

She tells me... "She says she has a head ache and just looks over all sad."

Bubba and I rushed to pick her up.

She got in the car and I asked her if she was OK and ...

she burst into tears.

It took EVERYthing in me to not break down with her.

She is scared, tired, and grieving in her own way.

We drove through taco bell... cinnamon swirl things make any 7 year old smile.

I sent a text to Jason, Nana, Poppie, and two of my sisters to tell them what was going on.

Aunt Karen called Regan and had her laughing in no time, she is good at that.

We got home and talked....

A LOT.

This is SCARY for me, I can't even imagine how scary it is for a 7 year old girl.

Then we curled up, the three of us, and watched a movie.

Later I looked over to see this......

{She sure LOVES her Bubba.}

This past week has been a rollercoaster...

There have been some amazing highs....

and some scary lows BUT

the one constant is our love for each other

and our faith in God and his plan for us.

Please continue to keep my babies in your prayers.

Oh, and one last time....

Let's hear it....

GOOOOOOOOOOOO Team Presley!!! wink!

We CAN do hard things!!!

So, Dr. your saying his heart is strong......

Hmmmm….. Where do I start?

Well, you know that as mom’s we pretty much know everything.. Right??

There must have been a manual given to me at some point but I guess I have lost it.

So, I have to rely on my motherly instinct and prayer.

I knew that something was wrong with Bubba…. Like really wrong.

He’s just not been himself; it is heart breaking to see.

He has been spending too many days like this…..

{side note: to any of you that said not to get a dog... that it would be to much work on top of caring for Bubba. You were so wrong.:) This sweet dog has been AMAZING!! He is so in tune with Bubba and is right by his side when he is sick. He is also a HUGE comfort to Regan. Serisoulsy, I can't believe what a blessing a little dog has been to our family.}

We haven’t seen this nearly enough………

Regan notices it as well.

The other day Bubba was happy and smiling and Regan said

“Oh, there’s that old Bubba I love and miss!”

So, I used my mother’s instinct and started taking Bubba into see his doctors.

It was obvious right away by the amount of tests that were ordered, that they were worried just as I was.

We were told some scary things at first....

BUT

“we must wait and get the test results back first” the doctor said.

So, that’s just what we have been doing… waiting.

Luckily, I am married to a Knight in Shining armor… remember?

He dropped everything to be by my side for these important appointments.

I love that sweet Knight of mine!

Ok, so now you are asking….  What is going on!?!?!?

 

Well, there are several things going on with our sweet little Bubba right now.

1^st he off he is having tummy issues and will be needing surgery soon to help with the constant vomiting.

 

 

2^nd Bubba’s levels are off, way off, so he will soon be getting either a broviac main line or a portacath and starting infusion treatments for Bubba every 3 weeks. {After insurance approves it all of course}

3rd Bubba's sweet lungs are having a hard time. Do you want the good news or the bad news first??

Ok, so the good news.... Bubba does NOT have Pulmonary hypertension!!! His heart is doing good!!! Wahoo to that! We have always known that his heart is the biggest and best part of him! :)

So, now the bad... well Bubba is in respiratory distress and will soon be needing the help of a trachea and the help from a ventilator to help him.

We first have to get our Bubba healthy before doing the trachea.

So, he is on a lot of medications and they are running lots of tests so that they can make the best decisions when it comes to our special little hero.

This has been HARD.

Nope, no other way to put it.

There have been lots of tears shed, prayers said, and kisses stolen.

I am nervous as to what our new "normal" will be.

BUT

I will figure it out quickly and take care of my sweet baby how ever I need to.

I will continue to love on Regan and answer her questions.

I know that she is worried.

It breaks my heart.

We are hoping that OUR HAPPY and AWAKE Bubba will return after we start this process.

Please keep Bubba in your prayers. Please keep Regan in your prayers.

Thank you all so much for your love and support.

I am blessed with an amazing support system of friends and family.

Yesterday was hard but then I looked around and was reminded how truly blessed I am.....

two sweet friends that rushed to my rescue with out me asking....

my wonderful best friend by my side....

my oh so sweet mother in law that scooped Regan up from school and took care of her for me...

my wonderful mother that is willing to jump on a plane at a moments notice.....

my sweet sisters that know just what to say.....

my loving Heavenly Father that loves and supports me in my hardest moments.

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

Thank you for your love and support web friends. :)..... and keep those prayers coming.

So glad that today is over......

We might have hard days....

BUT we have a good life!!!

Today was another HARD day at the hospital for Bubba.

He was such a trooper!!! 

BIG smiles all day and high fives to everyone he met.

Now, we wait for results from x rays, echo, and LOTS of labs.

(We tried to snap some pics with the cell phone. One of these days

 I want one of our photog friends to tag along and truly  document what Bubba's life is like.)

Then we will make a plan. Some changes are starting right away.

Things will be different and we will all adjust. I am not sure how I

will make it all work but some how it always does. :) 

 We were all tired by the end of the day and so glad that our day was almost over.

Not long after laying Bubba in his bed he starting crying out in pain. Regan could hear him and called me into her room. She then asked me "Mommy, why does Bubba always have to be sick?" I scooped her in my arms and we went out into the livingroom with the boys. I told Hubs what Regan had asked and then we did our best to comfort her. The TV was turned off and as I cuddled Regan and Hubs cuddled Bubba we shared our testimony of our Heavenly Fathers love for Bubba. We each did our best to explain to her but honestly none of us know WHY he is sick. It hurts my heart that Bubba has to endure so much and it hurts my heart that Regan has such worries at such a young age. We ended our talk with a family prayer. Bubba is the greatest teacher that I have ever had. Every day I learn something new from him, every day he touches someone new. There is nothing harder yet more rewarding than to be a mother.



Just keep swimming..........

You know what you gotta do when life gets you down?
Just keep swimming
Just keep swimming
Just keep swimming swimming swimming
What do we do we swim, swim, swim
OH HO HO How I love to swim
When you WAAAAAANNTTT to swim you want to swim 

I have been singing this Nemo song over and over this week. Regan thinks it’s pretty funny.  

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”  Marjorie Hinckley.

Bubba and I have had a lot of dates lately and not the fun kind. If you are my friend on FB than you have probably seen lots of check in’s or comments for the hospital or dr. offices.  They are worried about Bubba. I am worried about Bubba. This year has not started off how I would have wanted it to; it is going to be a hard one. We know of one surgery that Bubba will be having soon. There are LOTS of tests that Bubba will need. We won’t know our game plan until we meet with another dr. on Monday. Bubba’s other dr. is waiting for this apt. so that they can coordinate their tests and surgeries to limit the times Bubba has to be sedated. Basically what it comes down to is that they are worried about Bubba’s tummy, lungs, and heart. That’s right y’all my little man is getting old and his body is not being nice to him. I know that TTD is a mean and progressive illness but it is hitting Bubba’s little body fast and hard right now. I am grateful for the AMAZING team of doctors that he has. I trust them and feel blessed that after 11 ½ years of doing this we have built a good team to take care of Bubba. I am grateful for the sweet team in Maryland at the NIH. They have been getting LOTS of frantic phone calls from me and they do all that they can to help. This week I have gotten ANGRY, I have cried, and I have found peace in what the future might be for Bubba. Things are going to change and that is OK. With all of this change there are some things that are constant 1) Bubba’s sweet smile and attitude 2) My little family  and our love for each other 3) My faith and testimony in a loving Heavenly Father that has been there to comfort me with each new challenge in Bubba’s life. I will share more about what is going on with Bubba once I know exactly what our first step will be. We have had some hard, pain filled, days BUT we have also had some pretty awesome ones as well. So, rather than go into all of the crummy details of the bad days I will share with you pictures from a good day. 

Today Bubba woke up feeling good. Hubs was working and I was feeling brave. So, we went on an outing with some friends to the Aquarium of the Pacific. Pretty fitting since my mantra for the week has been…. Just keep swimming.  Enjoy!

I {heart} her a whole lot!

I have shared a lot about Bubba and what is going on with him but I thought I would take a second to share with you how my sweet little angel is doing. Our natural reaction in these hard times is to worry about Bubba and what is going on with his sweet little body. The thing is, I have two children and I worry about both of them when things get hard. Bubba suffers the physical hardships of TTD and Regan, my sweet Regan, she suffers the emotional. She loves her Bubba more than I have ever seen a sister lover a brother before. Even now as I am typing these words my eyes are filled with tears at the thought of her unbreakable love and friendship with her Bubba. I hope that one day I can be half the sister she is today. God blessed her with a heart of gold. She never gets mad that my attention goes to her Bubba when she sick. Yeah... sure she gets bored but never angry. One of our home nurses once told me "wow, she sure loves her brother. I can't believe how much she truly loves him." I smiled and replied with something along the lines of ..."Oh, yes but I am sure all of the children you work with are the same way." She then went on to explain that this was not the case in several homes she worked in. "The healthy child would be angry and dislike the sick one........." Then I received the biggest compliment I have ever gotten in my life "your home is filled with love, you can feel it when you walk through the door." I guess I had always assumed that most siblings were like Regan, awesome. wink! I never truly recognized her Golden heart as a gift before, but it is! I feel so blessed to have a daughter that cares, loves, and wants to be there for her Bubba. This week has been hard on her. I have been asked questions like "our family is forever right??... Well, then does that mean we all go to Heaven when Bubba goes to Heaven... will I have to go when he goes? I don't think I will want to go when he goes." She is getting older and is very smart. . "If we don't go to Heaven when Bubba goes then who will take care of him?" It breaks my heart that these are things that she has to think about. I have learned over the years that TTD is a family illness, it affects everyone. Regan might not bare the awful physical pain that Bubba has to endure but she endures a different pain from TTD.

The other day we snuck away for a lunch date while Daddy was with Bubba. On the way home she insisted that we stop to buy Bubba balloons. :) "We have to get him some get well balloons.... they will make him feel better.. I just know they will." I feel blessed to be a Mommy to two of the most amazing kids I have ever met {ok, so MAYBE I am a little partial} I always talk about Bubba being my Hero but so is Regan and her golden heart.

This afternoon I was playing with one of my new christmas gift, a new 50m Lens, and got some sweet shots of her. {shoot, I haven't even gone over Christmas yet! Oh, I am SOOO behind.}

She was VERY excited tonight becuase Nana surprised her with a last minute sleep over!!!

She is such a special girl and I feel so blessed to have her in my life!

{Bubba is making a little progress every day and we think the meds are working!

Keep those prayers coming!}

Dear Bubba,

Dear Bubba,



I just wanted to say that I am so sorry that your sweet little body has to go through so much. I wanted to tell you how VERY much I love you and that I hate having to give you injections of valium but I do it because I know that it will help the seizures stop. I want you to know that it means so much that all you want me to do is sing in your ear while you wait for the medication to kick in and your body to relax and give you relief. I want you to know how truly BRAVE I think you are. Oh, Bubba our long nights together are so hard but I know that no matter how difficult they might seem to me they are 100 times harder on you. I wish that I could take it all away. I wish that I could make your body treat you better. My heart breaks for you as I wipe away the tears while you are sleeping. I hate that you don’t get relief from the pain even in your sleep. Your road is a HARD and long one to walk but you will never ever have to walk it alone. When your body is too weak to walk… I will be there to carry you. I love you so much and I wish that Mommy’s kisses were just a little more powerful and could take your burdens away. I love you to Small World and back!!! Here’s to a better day tomorrow.


Love,


One Lucky Mommy

Target... you make him smile

The other day the kids and I were shopping at Target and I spotted a bargain. It was this Awesome Cicro toy. It was originally 30 bucks and was marked down to $13.97!!!! I wasn't sure if it was going to be a Christmas present or what BUT like Jason always says, I am a sucker for a good sale. So, I scooped it up. Collin LOVED on it while he sat in the cart. Then I left it in my van. Today after we got home from church it was apparent that Collin was in pain. Maybe it was his sweet little arthritic bones, maybe his nervous system, I just don't know. I wasn't sure what to do. Then it hit me. I have that awesome buy from Target just sitting in my van. I opened it up and he was so EXCITED. He watched me put every piece together. After I was done he was beyond excited!!! I think his smile says it all. This sweet little toy entertained him and cheered him up all afternoon. Just another reason why I love Target!





It is with a broken heart that I tell you that another sweet TTD child has earned their angel wings. Andrea lived and battle with Trichothiodystrophy for nine years. What a brave and amazing little girl! Please keep her family in your prayers.

Tonight when I have to wake up with my little boy in pain and give him meds., I will be grateful. Collin has made it longer than so many other TTD children. Each day, no matter how hard it is, is a gift.