Another Good Checkup

Addi had another chest X-ray and blood work today. Everything looked good! They took her off of three medicines, so we're left with three. They'll probably just keep her on these until she has her transplant.

I am so happy about the good appointment. She goes back next Thursday for a clinic appointment.

Here's a picture of her waiting at the hospital! Seriously...she is too cute!!

Blood Drive

Let me start by saying my school is amazing!  They have done so much for me and my family and they haven't stopped yet.  They are hosting a blood drive in honor of Addi on March 22nd.  There was such an overwhelming response of people who wanted to participate that they had to change the time to accommodate more people.  If you are interested in participating, please see the attached flyer of how you can schedule an appointment. 

Thanks so much for all of your support!

Foam Curlers

Saturday Darrell and I went to the Houston Rodeo Cook-Off. We had a great time with friends and enjoyed some good BBQ.

Addi stayed with her Aunt Brandi and played with her cousin Brody. After she got her bath, Brandi put those pink foam curlers in her hair. My mom used to put the same ones in my hair when I was a kid. I can't believe she sat still enough for Brandi to put them in her hair! The sad part is we didn't get to see the "curly" finished product because she did not appreciate them when she laid down for bed.

I can't get over how cute she looks...and serious!

Thursday Check Up

Today Addi had a clinic appointment at TCH. She had an X-ray, labs, and difibulator download. Everything looked great! Dr. Denfield adjusted her meds again. She's making progress! She'll go back next week for another X-ray to make sure everything is still looking good.

Here's a picture from the other day wearing her daddy's boots. She look's, as she would say, like "a mess"!

Too Sweet for Words

Addi is doing great! She is bouncing off the walls and really enjoying being home. We took her out to the mall yesterday. It's the first time she's been "out" since we've been home. She loved it.

Si, Addi likes to spend time in her brother's room. She likes to sit in his chair and other times she likes to get some of his toys to play with. I went to see where she was at this morning, and she had his little Mickey Mouse lap table out from under his bed. All I could hear was "mouse", "roof roof", (for Pluto), and "quack" (for Donald). I had to get her coloring book and take everything out into the living room. It makes me happy to see her with Cade's things. I can't help but think that Cade may not have appreciated it if he were here (haha).

Don't mind the hair. She wanted it up and it slowly falls out because it is so fine...and she wouldn't let me fix it!

Check Up

Today Darrell took Addi back to TCH to have another X-ray and to do labs. The X-ray still looks good! Praise God!! They also took her off one dose of the diarrhetic. That was good news too. She'll go back next week for a clinic appointment to have her device checked, X-ray, labs, and blood pressure checked. Things are going really good and she is just so happy.

When she got home she wanted to watch Tangled. Here she is relaxing on the couch watching her movie.

Thank You

We are home and Addi is super excited! She is back to her normal self, bouncing off the walls. I started back to work today and my mom will be watching Addi until she can go back to Ashley's.

We just wanted to give a special thank you to our amazing parents. Darrell and I can't thank you enough for all you do for us. They both came up to the hospital every day and brought food, did our laundry, and brought whatever else we needed. They are so supportive and make everything easier for us. Addi had a great time walking around the floor with Mimi and MawMaw and taking stickers from PaCade and PawPaw. Thanks Mimi, PaCade, MawMaw, and PawPaw for loving us and being there for us!! We love you more than you know!

We Are Out of Here

Today Dr.. Denfield said that Addi's X-ray still looked good so we get to go home! I have to say that TCH does a wonderful job making you feel "at home". We had the most amazing nurses and PCAs.

We are leaving with four additional medications to add to the already one that she takes for her heart! We are so grateful that she is happy and back to where she needs to be...now we just have to make sure the fluid stays gone.

Thank you so much for all of your thoughts and prayers...they mean SO much!!

Here Addi is leaving the room and then her finding her sunglasses and putting them on all by herself.

Saturday Update

Dr. Denfield came by this morning and said her X-ray looks great! The plan today is to move her to all oral meds at her 5:00 med time. So it is looking pretty good!!

Addi is doing great herself and we're just going to be hanging out here today again. I'm sure we'll visit the library and take a couple laps around the floor. We are looking forward to coming home soon!

On a different note, earlier this morning Darrell got out some money to get a couple of drinks. Addi got her hands on some....starting early!!

Late Night Post

I just wanted to post a couple of pictures from tonight that make me smile. I'm in one of those emotional moods where I just think about how blessed I am to have Addi. I've said it a million times that we have a long road ahead of us, but I love that I have Addi TODAY! She brings so much joy and I love that as she gets older I can see Cade in her. There are things that she does that remind me of him.

Tonight when I was getting ready to bathe her I really thought about the scar down her chest and the scar across her belly. Those beautiful scars will forever be a reminder of how precious her life is! I am so thankful that God let us have her!!

Here is a picture I took of her before her bath. One shows her scars and how good they look (she still has some tape covering them at parts) and the other is showing how long her hair is now!

Friday Update Day 11

This morning's X-ray looked great! Dr. Denfield said if she was on all oral meds it would be a "going home X-ray". So that's what we are working towards. They are taking her off of one of the IV meds and are going to give her two doses orally. This is the first step of weening her off of the IV. Hopefully tomorrow her X-ray will look just as good and we can begin changing the last IV med to oral.

This morning the nurse had to switch her IV so that made her mad. Now she's perfectly fine. We're in the library and she's looking at books and playing with puzzles. This hospital is truly amazing. They have so many things here that cater to kids and it makes their stay that much easier to enjoy. They even have a little beauty shop where patients and their parents can get their hair cut. Darrell visited it this morning to get his hair "cleaned up". If you know Darrell he can only handle his hair getting so long (haha). He said there was no way he was going to let the lady use her clippers on him. "I'm way too picky about that" is what he said! No, not Darrell!!!

We're going to enjoy another day here at TCH. I'll update you again later!

Too Cute

Addi has been so happy today! Her personality is definitely back to normal. Each night she gets weighed and today she stood on the scale by herself. She also rode around in a fire truck by herself tonight. Here are a few pictures of her. She makes us so happy!!

Thursday Update

This morning Addi's X-ray looked better!! The plan now is to make sure it stays that way. Today they kept her on the same medicine regimen as yesterday. Tomorrow if her X-ray looks good, they will slowly ween her off of IV meds and replace them with oral...really slowly. The doctor said if everything stays good we could go home Monday or Tuesday.

Addi's been busy and in great spirits! Again, thanks so much for your continued thoughts and prayers. We love all of the visitors and reading the the emails and texts that have been sent. We are truly blessed to have such amazing people in our lives!!

*On a side note, if you subscribed to our blog and you are getting emails, I realized that you are receiving them the day after I post them. I just wanted to let everyone know that they are a day late for some reason.

Here are a few pics of Addi!

Wednesday Update

This morning's X-ray looked the same as yesterday. The positive about that is that it wasn't worse. Dr. Denfield added another med for her to take by IV. We'll see if this helps. So basically they are still trying to figure out the correct combination of medicine to keep the fluid around her lungs from coming back.

Addi has been a busy little bee today. We've gone to the library on the 16th floor and checked out a couple of books. We've made some laps around the floor in the wagon. She has also walked a little and even almost stood up on her own from sitting on the floor (that's big progress).

The playroom opens in a little bit, so we'll make our way down there when she gets up from her nap.

Tuesday Update

Well, Addi had an X-ray this afternoon and the fluid has gotten a little worse. Dr. Denfield decided to give her the same medicine through IV and added an additional medicine. Hopefully tomorrow we'll see a change for the better. They are trying to determine the correct mixture and dosage so that we can go home. This is the day to day process they warned us about. Oh well, we just want what is best for Addi.

So I keep reminding myself to be patient. She's happy and that's what's important!

Yeah

Notice anything different...yes, Darrell us holding Addi chest to chest and she loved it. It doesn't hurt her anymore!

Patience is a Virtue

So this morning's X-ray showed a little more fluid around her lungs. We are NOT going home today. The plan is that the doctors have to figure out how much and what kind of medicine they need to give her to keep the fluid gone. Once they determine that we can go home. Each child is different and that's the tough part. They have to be extra careful too because of her heart condition.

With that said, we have to be patient. As much as we are all ready to go home, we have to make sure that Addi is taken care of. She is doing great otherwise. She has been playing, crawling, and walking a little. She is so happy and it's amazing! She's been through so much and still has a smile...unless you're wearing a white coat or blue scrubs!!

Keep the prayers coming!

Sunday

Today has been a good day. Dr. Dryer came by and told us that Addi's X-ray looks great! It even looks better than yesterday and that one looked really good too. He said that we may be able to go home tomorrow, but if not then for sure Tuesday. We have to wait for her to have all of the antibiotics she's supposed to have.

Both of her cousins have visited today and she's loved that. We really appreciate all of the visitors we've had. It makes our days go by quickly!!

It looks like we'll obviously be watching the Super Bowl in our room. Thanks again for all of your continued prayers!

Clean and Walking

This afternoon we've been busy with getting Addi to walk, going for rides in the wagon, and taking a bath. She is doing much better about not crying when we make her walk. Now she just whines a little. She has walked three times today about half way down the hall and back.

I also gave her a bath today. I have to bathe her in the bed. She can't be "submerged" for four weeks. She got her stitches out when they had her under for the drain tube. Now I'm trying to slowly get ALL of the bedadine (sp?) off of her scars. It's going to be a long process. One of the nurses brought us this shower cap to wash her hair. It has shampoo in the cap and you warm it up. Then you just rub it around her hair and you don't have to rinse it out. Really convenient!!

Saturday

Today has been a busy day so far. The surgeon came by to take out her drain tube. This was a surprise to us. Dr. Dryer, the cardiologist, came by and said her chest X-ray looks good. Now we just need to wait and make sure the fluid doesn't come back.

Last night she ran a fever, so they put her on a couple of antibiotics. She no longer has a fever. Now we have to stay for 48 hours from the time they started the antibiotics. This will also give the doctor time to monitor her lungs. So, they'll take another X-ray in the morning to see how things look. (please pray for the fluid not to come back).

We are about to get Addi out of bed to walk. After they pulled the tube out she went back to her normal personality...not sure if it's from the little morphine they gave her or if the drain tube was just that uncomfortable!

Also, a bonus picture of Cade and Addi. My mom had it on her phone and I loved it!

Here is a picture of her relaxing yesterday afternoon...prefever.

Friday Update

The doctor just came by and told us that Addi is doing good. Her fluid is draining well and now we just wait a couple of days for the fluid to slowly stop.

Right now she's sitting on the couch. We're going to try and get her up walking after lunch. She's still sore and we have to be careful with the tube. Otherwise everything is going good!!

Here is a picture of Addi. The doctor had just left and she did NOT want to see one more doctor.

Goodnight

Addi got her chest tube in and now she is sleeping soundly. We went up around three to have it put in. It was a LONG day! Addi wasn't able to eat anything since midnight.

The procedure went well and they drained a lot if fluid. She is was uncomfortable and tired. I'm so happy that she is finally sleeping. Tomorrow we'll see what they are going to do as far as meds...if they will make adjustments etc.

Please continue to pray for Addi...that the lungs remain clear of fluid and comfort for her. Pray that Darrell and I remain patient during all of this! God is good and I know that he will continue to take care of us. For now, goodnight! Here's a picture of me and Addi watching Tangled before the tube (excuse the no makeup...I forgot to pack it)!

Plan for Today

It looks like Addi is going to have a chest tube put in to drain the fluid around her left lung. The doctor wants to be proactive since the medicine isn't working like they want it to.

They will fit her in sometime today. Everything else is going good. We were hoping we wouldn't have to go this route, but we're ready for the fluid to be gone so we can get back to normal.

Please continue to pray for Addi. We hate that she has to go through all of this, but we know this is part of our long road! She's such a trooper!

Thursday Update

We are currently waiting to hear from the doctor if Addi will need a chest tube to drain the fluid from her left lung. The X-ray didn't really show any significant changes according to the nurse.

This morning she is in a great mood. Darrell was working on an inspection report and Addi was copying him. He has comments on a recorder, so he listens to them and then puts them on the computer. He has two recorders and gave one to Addi to play with. She started putting it up to her ear like Darrell was. There is another picture of Addi trying on Mimi's glasses!

I'll post later when we find something out.

Update

The doctor came by and gave us our plan of attack. They came in this morning and took an X-ray and all of the fluid from her right lung is gone. The left side is about the same. However, they took the X-ray after she had only had one dose of medicine.

Tomorrow at 5:00 in the morning they will take another X-ray. If there is no improvement on the left side, they will have to use another chest tube. If she has made progress, they will continue with the medicine. Obviously we're hoping for meds.

Addi looks great and is breathing better. She's been sitting up on the couch playing and we've made her walk a little. One of the nurses is going to come by later this afternoon to remove her stitches.

We also had a representative from the Gulf Coast Regional Blood Center come by and talked to us about the idea of having a blood drive in honor of Addi. I love that idea and hope we can get something set up!

Thanks for all of the texts and emails! Here's a quick picture of her napping on my lap! She's too sweet!!