Stephen and I want to thank everyone for the many prayers that have been lifted to our heavenly father for a blessing of healing over our son Silas. We also want to give everyone an update on where we are at as of the finish of this week.
On Monday, October 2nd, we took him back to Children's Mercy to have his blood drawn which would show as the nurse said "still absent of the SMN1 gene and more importantly how many back up copies of the SMN2 gene he has to rely on." She also said that "the test never comes back proven wrong and that we should still see the abnormality of the missing SMN1 gene." One of my friends had just messaged me right before we had walked into the hospital that morning that she didn't know if the devil was trying to feed me any lies or doubt so far but I found it interesting that was one of the very first things the nurse said to me after introductions. I thought to myself, "Wow this is an affirmation the Lord is at work and meeting any doubts head on for us", and I had such very high hopes that the test would be wrong. I just thought to myself you have no idea what our God can do.
After blood was drawn we met with a neurologist, genetics specialist and physical therapist. We did a baseline of his reflexes and motor skills and everything Silas is able to do presents as normal for a newborn. This also made me feel more affirmation for our prayers of healing with how strong he is, which everyone made remarks about. Before we left she said they would get results back sometime Wednesday-Friday of this week.
Tuesday night we got a call that part of his blood had coagulated and we would need to come back on Wednesday to redraw blood for the portion that would show how high his antibody level is which would determine which drug option we would choose. She apologized and said that they had not had that happen before. I thought alright God you are really working up there for a great healing. If this one thing already proved her wrong maybe the results would come back with the missing gene there!! However, Thursday evening we got a call that it was still abnormal with no present SMN1 gene. I was so utterly shocked because I felt it with every fiber in my being that it would be there! Not to mention she gave us other news that knocked us further down was the fact that he does not have 3 or 4 back up copy SMN2 genes that they are wishful to see because these babies show consistently good outcomes with early drug therapy with no motor deficits.
Silas only has 2 copies and they consider the 2 copy babies the outliers. They are not so black and white in being able to confidently say that they will be walking. Some do, some do not. That was very hard for us to take in that evening. We wondered why the Lord would not heal him and bring about so many testimonies. Yesterday (Friday) we got another phone call that his antibody level was low. For us this is a good thing because we are able to have him take Zolgensma, a drug administered through an IV one time (versus taking an oral medication for the rest of his life or doing a 3rd option that would have him doing spinal taps every 3 months for the rest of his life). They have him scheduled for October 24th to receive Zolgensma. This is about 3 weeks away and everything for Silas is very time sensitive as with each day that goes by his neurons are dying so it is imperative that we receive treatment as soon as possible before we start seeing the beautiful motor functions he has now start to disappear. We are trying to get the oral medication as early for him as this next week so he can be treated with something until the Zolgensma treatment occurs.
Our refocused prayer request for the saints is that we pray he has not already lost too many motor neurons before he receives treatment, and that with treatment and fast action, we will enjoy seeing our son function as any child would without the missing gene. We know that the Lord can save his physical function capabilities no matter how little back up copies he has, or the complete lack of a missing gene. We know it will be a journey of patience as we eagerly wait to watch him meet his milestones. We may not have received His blessing the way we pictured or wanted for ourselves, but God's ways are higher than our ways and I know good things will come from that which is good!
Lastly with Silas having the Zogensma treatment, it can elevate the liver enzymes so he will need to be on steroids for 3 months to help that and have his blood checked every week. During this time his immune system will be very weak. We will be quarantined as much as possible during this time to protect Silas's health. We will continue our worship with you online thankfully with the technology we have today to still stay in contact. We look forward to worshiping again in person with everyone after the new year. We remind ourselves it's for a short time as hard as it will be through the holiday season. Thank you all for your continued prayers and love.
Your sister and brothers in Christ,
Aria, Stephen, and Silas Larson
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