She's out of surgery

Milagros made through the surgery without incident. Doctors are very pleased with how she is doing. She is now resting in recovery and with faith she will be home tomorrow afternoon. One more victory won by Ariella the conqueror. To God be all the glory.

One more victory for the conqueror

This weekend Ariella was moving all around the house as usual, when unexpectedly she had a nasty fall and landed directly on her face. Initially there was some bleeding and swelling of her nose, however we got ice on her face right away. The bleeding stopped after a few minutes and there appeared to be very little swelling in her nose. She went to her brother's birthday party Saturday afternoon and to church Sunday so all initial indications were she was fine. However, over the last several days her swelling increased and nose became discolored.  Ariella's nurses advised us to have her seen by her pediatrician, which we did this morning. As soon as Ella's pediatrician saw her she sent us to children's hospital for an x-ray and to be examined by an ear nose and throat (ENT) doctor. The ENT doc found a hematoma inside her nose that was causing a blockage. This blockage was limiting the blood flow to her nose that if left untreated would cuase permanent damage. In order to repair the blockage Ella has to have immediate surgery. So once again we find ourselves at Connecticut Children's Medical Center preparing for our amazing to undergo surgery.

Let me tell this little girl is a tank. Nothing stops her. She is laughing, playing and visiting with old friends. She even got a chance to see some of the respiratory therapist that helped her during her long hospital stay two years ago. While we are not thrilled to be here we are grateful that our baby can be treated by an amazing team of medical professionals.

We are believing God to one more time see our baby through this

God is still working through Ariella Milagros

A couple of months ago my good friend and colleague was elevated to the role of Executive Pastor at this church. Rachel, Ella and I attended the service where he was being installed as Pastor. While there I bumped into the Vice President of our company at the service. She hadn't seen Ella in quite some time; though she often asks about her and is aware of many of Ella's recent milestones. But our VP was taken aback by how much Ella was moving around and talking.  What is interesting about all of this is that during the service our Vice President was under a lot of stress, she had a number of major decisions weighing on her mind and could not see way to complete all of the projects for which she is responsible. While all this was on her mind the preacher was encouraging the congregation to believe God and trust that what they had experienced in the recent was only positioning them for great things to come. The preacher told the congregation that their best days were still yet to come. In the moment my VP confessed to me that while the message sounded good she was having a hard time believing it that is until she saw our precious warrior walk up to her. Our VP says that the moment she saw Ella moving around and heard her speak she was reminded in that instance that God is still in control. Ariella reminded her of God's grace and that is always in control. God used Ella to remind someone, who desperately needed reminding, that is has the final word. Just like God has strengthen Ariella to do more than anyone expected. We are all more than conquerors today becuase we all have overcome something, some of us are still in the process of overcoming and just like my VP could look at Ella and be reminded of God's grace. I would encourage you to do the same. She God's grace in this beautiful vision of strength and perseverance.

Some recent pics and vids

We know how often you all think about sweet little Milagros, well we have added a couple of new videos and pics to keep you up to date. Enjoy the growth of our special conqueror.

.co

The latest from Milagros

Hey Team Ella,

It has been several months since our last posting and your little conqueror is growing and developing by leaps and bounds. We have had a couple of different bouts with some illnesses and allergies; Ella had some coughing and runny nose, but nothing that has lasted more than a week. We have gotten a lot more aggressive with her treatments the minute she exhibits any symptoms. Our day time nurse, Nikki, is a real blessing and Ella loves her dearly. Nikki has done a great job of keeping our baby healthy and also challenging her to do more and function independently.

A couple of quick updates and then you can check out all the videos and pics below. Last week Ariella had a swallow study to provide the medical team at Yale New Have a current picture of exactly how her swallow is functioning and if she is still at significant risk for aspirating. The results of the study were good. Ella’s swallow is still intact, but not as strong as we would like, however we could see on the x-ray that when she swallows she does protect her airway, which means she is not getting food down her trachea and ultimately in her lungs. The doctor and speech pathologist conducting the study could see that Ella was protecting her airway when she swallowed and even though she does have a tendency to pool her food at the bottom of her throat, when we tell her to cough or “clear your throat” she is able to get the food down her esophagus. She is still at risk for aspiration, but it is lower than it was previously which means we can continue to try and give her small quantities of food by mouth until she is able to get stronger and do more.

Additionally we doing more work with her team of therapist to get her to function independently. She has specialty leg braces that she wears once or twice a day for about 30-60 mins at a time to help to encourage her to bend her knees when she walks and keep her feet from pronating. The braces also encourage her to walk more heel to toe as opposed to flat footed. We are working even more on transitioning from laying down to sitting up and from sitting up to standing up. All of this will help Ella to function more independently as we prepare for next year. 

And so you may be asking yourself what happens next year. Well Rachel and I have started to have conversation and begin to do research on preschool options for next year. Can you believe that – Milagros will be in school next year, THANK YOU JESUS. We have come such a long way team. Keep praying, keep believing and know that GOD is always in control.

24 hour turn around

And just like that 24 hours after reaching out to the team to make you all aware that we were going back to the hospital we are getting released today. Ella de Milagros had an ok night, mom did not get much sleep becuase the baby's alarms kept going off, but they made it through the night. The doctor's are pleased with the way Ella is responding to the anitbiotics and feel she is strong enough to go home. Ultimately they will want to schedule a time when we can bring her back so they can conduct a bronchial scope, which means the baby will have to be intabated and that comes with its own set of risks and challenges, but for now God has seen fit to give us one more victory team. Thank you all once again for answer the call for prayer. Ariella is so blessed to have all you wonderful people in her corner. Blessings to all your More Than Conquerors

Its praying time!

I'm not quite sure how to start off this blog entry. We have come so far and made it through so much with our little conquer, our special little miracle, however we are facing some circumstances that we haven't had to face in more than a year. Ariella has been sick for nearly a week battling what we assumed has been a regular cold or some other kind of bacterial infection, however with Ella nothing is ever really "regular". After several days of increased treatments she has not gotten much better. She continues to be very congested and is desatting during her nap time and overnight while she's sleeping, which is to say the oxygen level in her blood continues to drop periodically throughout the night into dangerous levels. As a result of all of this Ella is currently being seen at Yale New Haven Hospital where they are going to admit her for a couple of days. I need to stress that she is NOT in critical condition. In fact if we pushed the doctors would let us take her home tonight with a regimen of antibiotics, but Rachel and I feel that it is in Ella's best interests to be seen by the professionals who actually specialize in Muscular Dystrophy. This will give them a better sense as to the nuances that are associated with her particular form of (MD). Again, however I want to be clear, she is not in critical condition. To look at her and spend time with her you would have a hard time believing that she is sick at all. She is still trying to walk all over the place and talk and get into everything imaginable. The fact is though, she should have gotten better by now and she hasn't. The doctors at Yale did do an x-ray and the x-ray is clear, praise Jesus, the doctors have listen to her lungs and her lungs sound clear, praise Jesus, all indications are that she is not in critical condition. This hospitalization is simply a precaution; do not give up on your faith, do not give up on our baby and do not give up on each other. Team Ella, we will make it through this as we have made it through every other challenge that we have faced to date by your prayers, thoughts and commitment to our family. It is all of you that has carried us to this point and we believe that God is still working on our behalf. This is just another opportunity to see his hand in our life. Please check this site regularly as we will continue to post updates as new information as it becomes available. We love you all thank you so much for all that you do.

P.S. Ariella wanted me to express her congratulations to her Nana for her retirement. Mom, Ella says she is sorry she could not be there in person to celebrate you at your banquet last week, but she heard there were a lot of people there sharing their love and gratitude and that cousin Ticha and her team did a great job with organizing the event. This made Ella very happy. Ella also said even though she missed you last week she looks forward to seeing you a lot over the summer as you transition into your new status of retired and FULL TIME NANA. Love you Nana MUAH!!!