Thank you to Christina Salvo!

The updated story on AnnaSophia ran last night on our 9pm news, and Christina Salvo, the reporter from our local Fox affiliate, did a wonderful job. She is a proponent of organ donation and loves to do stories that matter. Our hope is that the update on AnnaSophia would encourage others to think about organ donation. Thank you Christina for a job well done!http://www.coloradoconnection.com/news/video.aspx?id=293212

Blessings,

Mary

Waiting and retesting

Good news! AnnaSophia is improving much more quickly than Ethan and Emily. I am amazed! She was the one we were the most worried about, and she is doing really well. Emily is slowly recovering also. She is no longer taking three and four naps a day, but she still has a mild cough. Ethan, our hardest hit, is having horrible coughing fits at times. The good news is that no one has had a fever since Saturday.

Saturday, I had to take Ethan back to the lab for more testing. The good news is that the repeat urine test did not show that he had protein in it. Yeah! This lets us know that his kidney seem to be working well. His repeat CBC had shown that his platelets were still the same. Not great news, but at least they weren't worse. His metabolic panel came back normal also. His pediatrician, Dr. Foote, had consulted with our Denver doctor and also a Hematologist. The consensus was to keep Ethan on the Depakote for now, and the Hematologist wants to watch Ethan's blood work closely.

Today, we recieved a call from Dr. Foote telling us that Ethan's liver enzymes were elevated. This is troublesome news. For some reason, Ethan's liver is stressed. This could be from the Depakote, the virus or some other unknown reason. Tuesday, Ethan will go back to the lab for more bloodwork and then on to see Dr. Foote again. Hopefully, we will have more answers tomorrow.

Christina Salvo, the reporter who is following up on AnnaSophia, called today to tell us that her report will air on our local Fox affiliate tomorrow night at 9pm. This was moved up from the time we thought it would air in May. Christina was such a pleasure to work with, and Steve and I hope that everyone who sees her report will see the miracle of organ donation.

Mary

Preliminary results for Ethan

Our pediatrician, Dr. Foote, called this evening with Ethan's CBC results. His platelets are low and his white blood cell count is also low. She is attempting to reach Ethan's doctor in Denver, who has prescribed the Depacote for him. Tomorrow morning we will head back to the lab at the hospital to repeat another CBC and urine. Her hope is that the cause of Ethan's symptoms and low blood count is due to the virus he has been fighting. It's rare, but viruses can sometimes cause the body to react this way. If his blood count looks like it has improved slightly by tomorrow, then he might just be fighting a really nasty virus. In an attempt to cover all of the bases, she is also having them draw for a metabolic panel. She wants to check his kidney and liver function as well.

Our biggest concern is that the Depacote is causing these negative effects. In some rare cases, this drug can cause Thrombocytopenia (low platelets), liver failure and also kidney failure. Even though we had researched this drug before Ethan was started on it, we were not aware of the possible toxicity. Needless to say, Steve and I are wanting to take him off of this medication and seek some more natural alternatives through some local doctors specializing in Autism.

We pray that Ethan feels well tomorrow morning and that the facial swelling will disappear. We pray that the pain in his legs will go away, and that the lab results will come back showing improvement. We also pray that the Lord will give the pediatrician divine wisdom in diagnosing and treating Ethan.

Still under attack

AnnaSophia made it through the night pretty well. Her fever was under control with the tylenol, and she didn't have any other worrisome symptoms. I checked Ethan and Emily through the night, and they seemed to sleep well. I had high hopes that today would bring healing and peace to our family.

Emily woke up without a fever and was hungry. Great news! I put breakfast in front of her, and she told me she felt like she was going to faint. Indeed, she started to Vagal, so I put her on the sofa with her legs in the air. As she became more alert, I gave her juice. I was hoping that her blood sugar was just a bit low after yesterday, and after breakfast, she perked up a bit.

Ethan woke up late this morning, and I noticed right away that his face was really swollen. He was also complaining that his legs hurt a lot. After more investigating, I noticed that he also had petechiae all over his chest and abdomen. That was enough for me to take him into the doctor again. Mind you, this was our third trip this week.

I know that the doctor's office was surprised to see us again, but after examining him, the doctor was clearly worried. His urine showed that he has protein in it, which could indicate that his kidneys are not functioning like they should. We are currently waiting for the results of his CBC, and the blood culture will take about 5 days. We are to go in first thing tomorrow morning also. The doctor wants to rule out serious things like Thrombocytopenia (low platelets).

As we hurried home from the hospital, Emily and AnnaSophia both spiked high fevers yet again. I feel like my children are under attack right now, and I don't even know what we are battling. Please pray for our children, especially that Ethan will be ok. We will continue to post updates as we recieve them.

Mary

AnnaSophia is sick

As much as we tried to stop the spread of illness, AnnaSophia managed to catch the crud. She has been running a fever all day. Ethan and Emily are still sick as well. Please pray for little AnnaSophia and that the Lord would protect her heart and heal her. We really want to avoid a hospital stay. Also, pray for healing for Ethan and Emily. Poor kids, they've been quarantined to their rooms for four days.

After two trips to the doctor, all we know is they all have some kind of virus.

Thank you for continuing to follow our blog and for your many prayers.

Blessings,
Steve

Illness has invaded

I knew this would happen at some point. Try as we might, bad germs have penetrated our home. Ethan started with a high fever Monday afternoon, and so "operation quarantine" was enacted. Yesterday, I took him to the doctor, as he has battled high fevers for three days. The strep test was negative, but I am not completely convinced. Yesterday afternoon, Emily started with the high fever. For Ethan this has been mostly a sore throat and repiratory symptoms. For Emily, it started the same, but she has also been vomiting this morning too.

I am very worried about Ethan and Emily. I don't like the continuous high fevers, and I am still suspicious of strep. The thing that has Steve and I really worried is that we do not want AnnaSophia to get this. As sick as Ethan and Emily are, we are concerned that this would truly put AnnaSophia in the hospital. The other thing that we are worried about is that the culprit could be Epstein-Barr Virus. This is another really nasty virus for transplants. Many times this virus, along with high levels of immune suppression, is behind the presentation of Lymphoma in transplant recipients.

At this point, I have quarantined the older two kids to their rooms. Luckily, since they are both sick, they can play together. AnnaSophia has been moved back into Steve's and my room. I have been disinfecting like a mad woman. Beyond that, the rest is in God's hands. I have found myself really anxious, but I know that this will help nothing. The reality is, AnnaSophia will be exposed to all kinds of nasty illness as she gets older, and ultimately, God is in control.

Mary

The gift of life

As we have been celebrating the resurrection of our Lord today, the Hibbert family has been close to our hearts. Our Lord gave up his life on the cross so that we may have everlasting life. What a sacrifice. What a gift. I have spent time today pondering that gift of life, and thinking about how AnnaSophia was given another chance at life because of the selfless gift the Hibbert family gave our little girl in their darkest time of grief. This is the first Easter they will be celebrating without their little Mason. Please keep this precious family in your prayers, that they will be comforted.

In honor of those whose lives have been affected by organ donation, many organizations will be flying Donate Life flags during the month of April. We have provided a link to the Donate Life website. We encourage all who visit AnnaSophia's blog to check out the link. http://www.donatelife.net/ There are many misconceptions about organ donation out there, and hopefully we can raise awareness about the need. This site is wonderful in providing education and stories of hope and success.

Many people who do not know AnnaSophia are surprised to hear that she had a heart transplant, because she looks so good. One thing we want people to know is that people who have had transplants can have normal, wonderful lives. Initially, there are a lot of medications to take. There are also risks, but all in all the quality of these children's lives are wonderful. Is it worth it to have a child endure the surgery and the "scary stuff" of a transplant? In our case, YES! It has been worth it to have the precious time with our littlest child and watch her grow.

Our transplant coordinator once asked us if we felt a sense of responsibility to our donor family, the Hibberts, in respect to AnnaSophia's care. And I answered "Absolutely!". Please understand that we understand that Mason's heart was a gift with no strings attached. Mason's heart is the most precious gift to our daughter. It is a gift that we treat with the utmost respect and awe. It goes without saying that we have always provided the best care for our little AnnaSophia. We have always given her medications down to the minute that she needs to get them, both before and after transplant. Somehow, knowing that her heart was such an amazing gift makes us want to care for it in the best possible way that we know how. We NEVER take for granted the second chance that AnnaSophia was given, and words cannot express how thankful we are. I know that Mason is in the arms of our Savior, and we pray for God's blessings on Dave, Char, Lincoln and the precious little life growing in Char. May the quiet peace of this Easter evening fill all of your hearts.

Mary

Be still and know that I am God.

Psalm 46:10

Happy Easter!

I have spent some time reviewing our posts from this time a year ago. It breaks my heart to read those posts and see the pictures of AnnaSophia then. She is so much better now--and stable. This time last year was a scary and unpredictable time. Now we are watching her grow and thrive. Just the other day, we found out that she is officially CMV negative!!! Praise God! It seemed like we would never see that day come. She also is trying to walk and took ten steps across the living room to me the other day. What an amazing feat for our little miracle girl! She is still not truly walking on her own, but I feel that it should be really soon.

AnnaSophia is growing into a little girl, who truly loves her family and friends. She loves little babies and loves to play baby dolls. She loves dogs and can spot one a mile away. If we pass by the pet store in the mall, she yells "Dog, dog!!!" and squeals with delight. She loves other children and sharing. When we pray, she puts her little hands together and bows her head. She loves music and is known to dance whenever she hears a good song. She loves her big sister, Emily, and looks up to her so much. Her favorite foods are homemade chicken noodle soup and vegetable beef soup, and I think bath time is her favorite time of the day. AnnaSophia is such a joy. Our family has been truly blessed by the miracle of her little life.

As we celebrate the resurrection of our Lord and Savior, Jesus, this weekend, I am reminded of how much He loves us. He loved us enough to die on the cross for all of us. He nailed our sin to the cross and opened wide the gates of Heaven for all of us. His love for us is extraordinary. In the good times and the bad, He is constant. Jesus is the same today, yesterday and tomorrow (Heb. 13:8). The miracles that we have seen over the past 15 months are a testament of His love for us. Thank you, Jesus.

May you all have a very blessed Easter!

Mary and Steve

Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. And now, go quickly and tell his disciples that he has risen from the dead, and he is going ahead of you to Galilee. You will see him there. Remember what I have told you.”

Matthew 28: 5-7 NLT

AnnaSophia gets her first haircut

AnnaSophia received her first haircut the other day. As her hair has grown, it has been a source of much amusement. Some days, it sticks straight up in the air, no matter what you do. Other days, it seems to lay nicely. No matter what, she does not like to keep bows in her hair. Instead, the bows are great entertainment for AnnaSophia as she launches them like missles (usually when she is in her stroller) and squeals with delight. Her hair finally grew to where it just hung in her eyes, so the time of her first haircut arrived. Emily manned the camera and was a wonderful photographer, catching this milestone for us on film.

At first, AnnaSophia was not very compliant. I think she was afraid of the scissors. Emily and I tried to show her that it was ok by pretending that we were cutting our hair. It was only ok after we let her hold the cover for the scissors. As you can tell by the pictures that follow, she thought she was helping. She is such a little cutie!



At first AnnaSophia wasn't so sure of this haircut thing.


She's finally cooperating, as long as the scissors don't get too close.


She knows she looks pretty.


Look at those lashes!!!