Great check ups!

Madeline had many check ups recently. They all went really well!

The first one was her nephrology apppointment. Her kidneys haven't gotten any worse since her last check up a year ago. This is great news! We want these kidneys to hang in as long as they can.

The next appointment was her hematology appointment. She had a higher blood count she's had in years. So that is also good news.

Her growth is finally stabilizing and she is gaining weight.

Madeline is enjoying her homebound teacher and doing great!

Yay for positive check ups!

Madeline starts homebound program

Madeline has started the homebound program through the Lakeview Elementary. She is doing great! A teacher comes 1 hour a day 4 times a week. Madeline has been doing well so far, and hopefully she can have a healthier Fall/Winter season than last year.

Doing good

Madeline is doing well today. She is having some minor pain here and there, but a definately improvement from before. She has had a few feeds and done ok. We are going in the right direction so far! We have great nurses and doctors as usual, and a room with a great view of Dallas that is awesome! Maybe home bound soon.

Doing okay

Madeline is doing a little better and is on less pain medication today. We are going to try some night feeds and see how that goes. She is spending her time reading and playing the Wii.
So for now we are focused on pain management.

Back in hospital

Today is July 10 th, Maddie went back into the hospital on Friday. She is having her normal tummy pains. Her blood work looked pretty good so we are treating the pain for now. We will continue to update...
Let's hope she gets out before her birthday!

I love this picture of Maddie. Our little angel!

Madeline Home!!

Madeline got home on Saturday. Our best guess is that she caught a bad virus that caused the vomiting and once it passed, she began to recover. Viruses hit Maddie a little harder than the average healthy person. Anyways, we are glad to be home for now. Thanks for all your support!

My girl

Thankful

A special thank you to my sister Jacque for her help with Ryder.

Happy April Fools Day!

Madeline and I have been here at Children's since Tuesday. She woke up vomiting and began to look lethargic. SO I packed in record time and booked it up here. I had an interesting time getting in this place...My usual parking place was apparently blocked off for valet parking. This completely shocked me and irritated me. Here Maddie was throwing up and I couldn't find a parking place close enough for me to get her in quickly. SO I had to valet my car, which I didn't want to do. So I realized I had to get everything out of the car at once and needed a wagon from the front of the admission desk. SO I wheeled a vomiting Maddie in and told the lady at the front to keep an eye on her while I ran out and got my bags. I then proceeded to grab a wagon to put everything in and she stopped me and asked for my drivers lisence. I looked at her and told her there is no way I was going to leave my lisence with her and I am taking the wagon. She wasn't real happy with me.

Maddie is doing OK today. Her bicarb was real low at 1 a.m. this morning. It was a 13 and it should be no less than 18. We will continue to update.

Madeline is home for now and feeling pretty good. We are enjoying the family being together again!

Madeline is having a great day and may come home this weekend. She isn't having pain and her blood work looks good. She is taking some feeds and eating a little without tummy pains.

In Hospital

Madeline has been in the hospital for a few days now. We were no longer able to treat her pain at home and it has turned into full blown pancreatitis now.

As a family, we are very thankful for the moments we get together anymore. We are not together very often, and it is very difficult. The doctors are not coming up with any answers or new ideas, so Trey and I are having to do this on our own for now. The only thing we can do is hope that this pancreatitis goes away and gives us time at home.

We are not and will not give up. We are just missing each other so much and wanting Madeline to be able to live a life outside the hospital.

We will update with any progress. Madeline's pain is better today than it was yesterday. SO this is a positive.

Thank you to my Mother, Lee and Jacque for being our saving grace and helping so much lately. We appreciate everything. We also are thankful for all the support from other family members and friends.

Madeline is home for now. Her pain never got worse and they sent us home with some pain meds to try and manage it from home for now. If it gets worse, we know where to go!

Doing well

Madeline's tummy pains have not gone beyond a "1", which is on a scale of 0-5. So things are better than usual and we may not be in long if things stay like this. She is eating a little and taking feeds.

Madeline went to the Teddy Bear Clinic today at Children's. They have a wonderful set up with doctors and nurses that pretend to treat the teddy bear the kids pick out. They even have a pretend form to fill out when we bring our teddy bear into the ER. They get IVs, cat scans, sugery if needed, and even a blood transfusion if the teddy bear needs it. It is such a great way for the kiddos to understand what they go through. Madeline had a great time and her teddy bear, Sandy, had a broken leg. Sandy got surgery and feels so much better now!

Anyways, hopefully Maddie will continue to do well and come home soon!

Hanging in

Madeline is about the same today. Her blood work is still normal. Her tummy pains are a "1" on a scale of 1 to 5. SHe is still able to take some of her feeds. This is a good sign that she can tolerate them. Hopefully she will continue to be able to do this. It isn't likely, but we can always hope. She is hooked up to a morphine PCA, but she hasn't needed to push her button very often which is also a good sign. She is busy this morning singing to Mary Poppins, her all time favorite movie.

Back in...

Here we are February 7th and we are back in the hospital with the same tummy pains. We were able to get a direct admit and bipass the ER which is FANTASTIC! Anyways, I will be updating daily.

Jess