Mama and Daughter Get Away!!!!!

The beautiful Hampton Inn on the Harbor at Amelia Island!!! Beautiful!



We walked over to the marina to see the water and boats...



but we also saw this!!!!!


We named this cute little sea otter Amelia. We don't really know the gender but Micayla wanted to name it so it's a she!

We also saw this along with jumping fish! I couldn't get a pic of the fish... they were too fast, most likely running away from whatever wanted to eat them! But I was able to get a picture of this baby jelly fish.


Then we did some shopping in the historic district. It's so pretty and was just perfect for us to wander around. The hotel is right on the corner so we could walk where we went. Amelia Island hosts a shrimp festival every year and these little guys were all over. Micayla loved them so we had to take pics with them!



Then we did this...



We had a great evening... we ate at the Marina Restaurant. It was yummy.


Then we went back to our room and popped popcorn and had M&M's. We spent a couple hours having girl talk. We mainly spoke about different changes she'll experience over the next few years and how to deal with them. It's such a fun time and I just want to prepare her for the next part of growing up!!

The next morning we got ready to go SHOPPING!!


We painted our nails and headed out... gotta have pretty toes!


We saw more of these...



I told her she could choose one thing to buy. So after much shopping and deliberation... she chose this. I love it!


We saw one more of these on our way out of town after having a yummy lunch at Karibou Cafe.



I must say thank you to my Mom for making this trip possible for us. I love that she travels and accumulates lots of hotel points and doesn't mind sharing!!! Thanks MOM!!!! We love you and had a great time!!!

The Cake

No Words Needed

Last Week Until This...

Update... UF Visit This Week

So, it's been a lot lately. We have had a lot going on with the kids schedules and Joshua's trips to UF.

We had our appt with Joshua's doctor regarding the results of the heart cath in addition to his regular monthly appt (6 min walk, labs, EKG, and ECHO.)

It was an emotional visit for me. We discussed what things look like as far as the slight progression of the disease. He discussed there are 4 classes of PAH, 1 being the least advanced and 4 being the most advanced. Joshua is at a high 3 almost to 4. He told us there could be an argument for going to the next step with Joshua since his numbers from the cath were not great but he is optimistic that we don't need to do that just yet. The next step would be the continuous IV meds through a central line. After that happens, Joshua would most likely be placed on the transplant list. Of course he answered my many questions and I am just trying to stay hopeful that won't happen for a long time and if/when it does, that an organ would be available. This makes me sad just thinking about it since that means someone else would lose their loved one.

Most of this conversation happened while Joshua was getting his ECHO so just John and I were in the room with the doctor. It was a lot to hear. I hate having these conversations about transplant like this is just a normal conversation. I never thought I'd be sitting in a doctor's office talking about this, but then again, who does? I've almost felt like Sally Field in the movie Steel Magnolia's during the cemetery scene where she loses it with her friends. From laughing to crying to yelling. That's how I've been feeling. It's hard. I know God is going to use this for good but it still is hard.

Micayla had made a card for Dr. A that read:

"Dear Dr. A., This is Joshua's little sister. Thank you for taking care of my big brother. I love him so, so, so much and I don't want to lose him. Love, Micayla".

She had drawn very detailed pictures of all of Joshua's equipment. His CPAP machine, Tyvaso machine, an EKG monitor, blood pressure cuff, syringe, and pill box. It was very cute but makes me cry thinking about it.

We gave it to him and he spoke with her about becoming a doctor and finding a cure for Joshua. He was impressed she knew what all the different things were for. John and I both had tears in our eyes.

Once we were finished talking to Dr. A. he told us he would not be seeing us again. He has to go overseas to take care of his parents. Of course, I started crying.

Lots of tears this visit. I know we will be in great hands with Dr. F. but it's a comfort thing. We've seen him every month, sometimes several times a month, for over a year.

Anyway... that's all for now. I'll leave you with this picture we took after hearing he would be leaving. Thank you Dr. A. for taking such good care of our boy! We love you!

Sleep Study

I love my husband! He is taking Joshua all by himself to UF tonight for his sleep study!!! I am so thankful he agreed to let me stay home and get caught up on laundry and housework! (Yes, both machines are running right now!)

They are repeating the sleep study since he is still obstructing at night.

Please pray for safe travel and for the test to be thorough and accurate!

Blessings!!

Final Update for Today

We are home now. Josh is tired, we are all tired. It was a long day. I'm feeling a little down I suppose. It seems like we didn't get the best news today, but it wasn't bad either. It could be worse.

One thing I think I forgot to tell you is they did go into the PDA (his heart defect) and occlude it but the minute they occluded it, his pulmonary pressures shot up so they had to back out. His pulmonary pressures are the same as his overall blood pressure. It is supposed to be 2/3 less. Some parts are slightly elevated more than last year. I did not know they were going to do try this until right before he went back when we were speaking with the doctor. I think I'm glad I didn't know this before today.

The results of the PFT's yesterday (pulmonary function tests) were slightly worse than last year. I thought all the numbers going down was a good sign when I read the report without the doc. The numbers are supposed to go UP not down. (sigh)

His CPAP is not helping like it should. While his pulmonologist was there with us in the cath lab, she was able to witness exactly what's happening with him. He's still being obstructed, even with CPAP. I'm thankful she was able to see what was happening.

So... with that info, they have scheduled another sleep study to be done Monday night. The respiratory therapist just left the house after resetting his machine at the new higher level. We're also going to give him a little something to help him relax and sleep a little better. We'll see if this helps.

We also will be returning to UF in two weeks to see Dr. A (his cardiologist).

He is down today. I've only seen him like this 3 times since this diagnosis. Like I've said before, going to UF is always a picture of reality and the severity of this disease and today was rough.

He isn't allowed to remove the bandage (covering the right groin - the entry point for the cath) until tomorrow around 11am and it is driving him crazy!

Thank you for your support for Joshua and our family.

Hug each other and do something nice for someone else.