Mateo & Javier Medina | CaringBridge

Mateo & Javier Medina Mateo Medina

Latest post: 11/24/2016
Welcome to our CaringBridge website. We've created it to keep friends and family updated about Mateo. Get started by reading the introduction to our website, My Story.

Mateo James Medina was born at 3:20 pm on July 10, 2011 at St. Agnes Hospital in Fond du Lac, WI. He weighed 8 lbs 7 oz and 21 inches long. He was born with a full head of hair. He was perfect and well worth the wait :)

Mateo would spend the next 2 days at St. Agnes where it was discovered he had low muscle tone aka "floppy" muscles.



On July 12, 2011 Mateo was transferred to Children's Hospital in Milwaukee via ambulance. It was a very scary thing to see our baby being put in the ambulance as well as seeing him hooked up to machines in the NICU at Children's. Mateo would spend the next 2 nights at Children's having a series of tests done on him. The nurses gave Mateo the nickname "Mr. Handsome". The Geneticists, Neurologists and NICU doctors all came in and out of his room during these days looking him over and ordering more tests. Family history was asked over and over. Mateo had his blood drawn several times, had MRI and ultrasounds of his heart. Mateo was discharged on July 14 with a diagnosis of hypotonia. The doctors wanted to see if Mateo would get better on his own. The Geneticist even thought the epidural from the delivery may be what's causing Mateo's low muscle tone.

Once home we realized that Mateo wasn't improving his movement. We had a follow-up appointment with Mateo's pediatrician. She also agreed that he was not improving. At Mateo's 2 week check-up we informed his pediatrician that his breathing was sounding different, like he was congested and had something stuck in his chest. She referred us to a pulmonologist at Children's. On August 10th we had an appointment with the Pulmonologist that would forever change our lives. She looked at Mateo for less than 5 min when she told us about Spinal Muscular Atrophy (SMA). She believed he had this genetic disease and gave us a website to research and get support. My heart was broken as she told us the horrible statistics of this disease. I sat and cried for the rest of the appointment and all the way home. The following day Mateo had 2 more appointments at Children's with Neurology and Genetics. They also told us about SMA. SMA was detected through a blood test that cost $10000. The doctors recommended getting a pre-approval from our insurance before having the test done. As many of you may know insurance can be a huge pain to deal with such was our case. Insurance did not want to approve the test at first therefore it was delayed for over a month. They finally approved the test and we went back down to Children's on September 12th to have more blood drawn for our precious little boy. We were told the results could take up to 8 weeks to come back. We remained hopeful that the test would come back negative. While we waited for the results we saw increased movement in Mateo. He was moving his arms a lot and was even beginning to move his legs and his neck. We got involved with Birth to Three and they also saw improvement with him.

On September 26th, the night before I was to go back to work, we got the call we were dreading. Exactly 2 weeks after having the blood work for SMA we had the results. This was the day Mateo was officially diagnosed with SMA type 1. So many thoughts and emotions rushed through me. I cried like I had never cried before. Imagine being told your child has a genetic disease that has no cure, there is nothing you can do and eventually he was going to pass away at a young age. We were originally told he would not live past 2 years old. Since then I have connected with other SMA families who have children that are older than 2 years old. It is mine and Adan's priority to keep Mateo as healthy as possible so he WILL beat the statistics of this horrible disease and have many birthdays.

So what is SMA? (taken from www.fsma.org (http://www.fsma.org) )

SMA is a motor neuron disease. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding & swallowing can be affected. Involvement of respiratory muscles can lead to an increased tendency for pneumonia and other lung problems.Type I SMA is also called Werdnig-Hoffmann Disease. Usually a child with Type I is never able to lift his head or accomplish the normal motor skills expected early on in infancy. They do not achieve the ability to sit up unsupported. Swallowing and feeding may be difficult and are usually affected at some point, and the child may show some difficulties managing their own secretions. There is weakness of the intercostal muscles that help expand the chest, and the chest is often smaller than usual. The strongest breathing muscle in an SMA patient is the diaphragm. As a result, the patient appears to breath with their stomach muscles. Also due to this type of breathing, the lungs may not fully develop, the cough is very weak, and it may be difficult to take deep enough breaths while sleeping to maintain normal oxygen and carbon dioxide levels.

 

 

 

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