Thursday June 27, 2013

We have to admit, Ariella's progress at times is hard to truly appreciate without knowing how far she has come. Some of you may have forgotten, while others of you may not have known that Ariella barely ate anything through her mouth when she was first born. We tried very hard to nurse, but to no avail. What we did not realize at the time, was her inability to nurse was the result of her muscle weakness, which made it impossible for her to swallow correctly and furthermore, because her swallow was so weak she could have easily aspirated and drown in her own secretions, which she came close to doing following her muscle biopsy back in January. Given how far our precious warrior has come over the last several months you can imagine that we are so grateful to God for Ella's unpredicted success. Please enjoy the following vidoes of Ariella doing what only God knew she would do, EAT THROUGH HER MOUTH!

Still conqueroring

I know it has been a awhile since the latest Ella update and we want to apologize for the delay, however, the wait has been worth it. A week or so ago we posted a picture of Ella standing in front of our living room couch holding herself, completely unassisted. At that time Ariella was able to stand only for a brief amount of time. She was standing for 15 - 30 seconds, well our miracle warrior has been getting stronger and stronger. Recently we recorded Ariella standing for more than two minutes! She is so amazing and it doesn't stop there. She has been doing a much better job of holding herself up on all fours as well. She has even started to lurch forward as if she is going to start crawling. Her gross muscle movements, have been a place of considerable weakness for a very long time, but through the grace and strength of Christ we are watching our baby overcome barriers she has had since birth. And glory be to God it doesn't stop there.

A couple of days ago Ella had a follow-up to her modified barium swallow. This is the test that determines how strong and how effective her swallow is. Her previous swallow study showed that her swallow was intact, but very weak. Well we have been saying for weeks that Ella lives to show people what she can do, especially when they say she shouldn't be able to. The results of her most recent swallow study show that Ella's swallow is still intact and is getting stronger. We have been cleared to continue to try and feed her through her mouth anything that she may be interested in tasting. In fact last night Ella was eating some of her mother's miso soup and today she drank almond milk from a cup. To say that this little blessing has increased my faith would be an understatement. Ariella is the embodiment of God's healing power. She is living proof that God is real, alive and cares for us. 

Happy Father's Day

Hello my friends, Rachel here! It really is so interesting to me how different Father's Day is from Mother's Day. As a mom I certainly don't want to take anything away from the job that we have, at the same time research shows that children without an active, responsible and caring father in their lives are more likely to struggle in life.       

God gave us equal but different roles in our families and each is vital. In this house we recognize the importance of a Daddy, a Father, a Head to the unit and we celebrate him for all that he is. While our son little Charles has lots of supportive people in his life, none can match his dad. 

Through his dad Charlie has learned the wonders of Christ, he has learned discipline, honor, faithfulness, playfulness, and kindness. Ariella has found her dad to be a fierce protector and personal trainer. It is because of his belief in her potential that she can stand, is eating more and more, and that she faces every challenge with steady determination.  Through Charles I grew close to Christ, watching him face adversity and knocking it down. 

You see, my husband is more than a conqueror because he draws on God's strength to do what needs to be done in our lives. He prayed that God would give him a heart to be all that I needed him to be, that he would be the father Charles needs to grow into a true man of God, and that he would have a heart to care for Ariella and all her medical needs. God has answered his prayers and more. Happy Father's Day my love and thank you for being all that you are to our family!

Look at God's Work!

This is what it looks like to be more than a conqueror. Ariella is standing by herself during a therapy session. Never doubt what our God is capable of doing. Your love, thoughts, prayers and investment have pushed our baby to STAND! Thank you Jesus!

Monday June 3, 2013

We have been meaning to write this post for a couple of days now. To say that we are excited just doesn't quite describe it. As you know, or maybe you have forgotten, our precious Ariella has difficulty swallowing as a direct result of the muscle weakness that she is fighting to overcome. In fact Ariella had a great deal of difficulty nursing or drinking from a bottle becuase she could not swallow effectively. This is how the baby ended up with a temporary feeding tube being inserted through her nose (NG Tube), which was eventually removed and a more permanent feeding tube was surgical inserted into its current location in her stomach (G tube/Mic-Key button). The feeding tube has allowed Ella to get adequate nutrition so she can grow and gain much needed strength. Although we are grateful that our baby gets fed, we have never been satisfied with the feeding tube, however this is what we have had to do to keep her alive and healthy. 

Ever since Ella's hospitalization in January we were not allowed to try and feed her through her mouth. However, because of your prays and support over the last month we have been taking the baby to see the same speech pathologist that was treating her while she was in the hospital. Marnie, the speech pathologist, has been doing an amazing job working with our baby, she has also given us a number of techniques that we can use at home. We have been using these techniques and working with our baby to develop a stronger swallow and praise Jesus it's working! In fact the techniques are working so well that Ariella Christina, the living miracle, the little conqueror that continues to seek out and take on new challenges was DRINKING this weekend. Yes drinking from a spoon, and EATING from a spoon. That's right the little girl who continues to prove she is more than just some diagnosis, the little girl who was not supposed to see her first birthday, the little girl who was too weak to swallow is now EATING AND DRINKING. She is not eating and drinking enough to get her complete nutrition so she still has to continue to get formula through the feeding tube, but she is getting stronger. Everyday a little stronger, everyday a little smarter, everyday God does something else to draw us closer to himself and to build our faith through Ella's testimony. Please continue to pray for our family as we pray that through this blog and the sharing of our warrior's progress you will grow closer to the God that has given our Ella new life and makes new life available to us all. 

Sunday May 26, 2013

The little warrior continues to make great strides in her progress and development. Her latest efforts include rolling over on to her stomach and than onto her back again with great ease. She is able to roll to her left with almost no hesitation; she still has a little difficulty rolling to her right. She has started to learn to pull herself up when she falls on her back. Actually it's really cute, if Ella is sitting up and falls to her back, one of us will extend a hand for her to grab, she grabs our hand and uses it as a lever to pull herself up and once she is back to sitting upright she claps her hands to applaud herself for her efforts. It is one of the cutest things you will ever see, we have to try and get some video of it. We did, however, include a video from family dinner earlier this week, where Ella was showing off by copying her mom and brother by flexing in her muscles. Below you will find the video along with a couple of pictures taken by our very good friend Miguel, who is more than an amateur photographer. As you can see the baby is amazing, she is so much fun and such a good time. Everyday she is making incredible strides. Keeping praying and please keep checking the blog for regular updates.

Plus One Defense Systems

As this is Ariella's blog we are very careful not to muddy the waters with a lot of non-Ella related content. In this case, however, we feel ok letting you know about an exciting development for one of Ella's lead investors. Plus One Defense System (www.teamplusone.com), voted by the Hartford Advocate reader's poll as the number one Martial Arts Center in the region, is celebrating the grand opening of its new 9,000 sqr ft facility in West Hartford. We want to congratulate Darin Riesler, Sensei and Owner of Plus One and the rest of the Plus One family on moving into their new state-of-the-art facility. The new school is equipped with an MMA cage, boxing ring, Brazilian Jiu-Jitsu training space, full fitness gym and traditional Martial Arts training space. We pray God's blessings on Plus One Defense. They have been a tremendous blessing to our family and we are so excited to see them grow. If you are looking for a place to train, grow, connect or just hang out please visit Plus One Defense Systems, 9 Tolles St. West Hartford, CT.

To further illustrate what an incredible man of God my Sensei is, as part of the opening ceremony Sensei asked people to bring cans of non-perishable food products to be donated after the grand opening. Please read the testimony of how God used Sensei Riesler to be a blessing to yet another family with the donated food.

Sensei e-mailed this to some of us this morning - 

"Yesterday, after the grand opening was finished, I put the donated food into my truck, and Mar and I left to go home.  Short version... I ended up going to some churches in an effort to try and give the food and non-perishable items to one of them.  They were all closed.  After going to enough closed doors, I said a prayer that God would help me give the food to where it was supposed to go.  The very next church I went to was obviously open.  The parking lot was packed and there were cars parked on the street.  So, I parked, and I started to walk inside.  I was stopped by a man who was driving (I think with another member of his family) and I was asked if I knew what time services were.  I told him that I did not know, and we got to talking for a minute, and it turned out that he was coming to the church that day to talk with the pastor to see if the church could help him... because he needed food.  (You can see where this going.)  I ended up giving him all of the food.  In the process of doing this, the man said something like, "This is more than I need.  I don't need this much food."  I told him that, as he came to the church because he wanted to talk to the pastor about his need for food... now he could go into the church and tell the pastor that he was there because he had more food than he needed."

What an amazing man of God he is, please pray for Sensei Darin and Marlene Riesler and the rest of the Plus One Defense team (www.teamplusone.com).