“On this day…” / Hello 22q / Walking by faith thus far 

So many titles I could give this post. I can’t believe that it was just one single year ago, 12 months ago that we received a diagnosis. It feels like this has always been there. Thinking back about all the appointments we’ve been to, they all kind of bleed together, not a lot of definition between the unknown issue to the known diagnosis. Our Noah has needed doctors and therapists for a long time. 

And reading this from just one year ago, we’ve come so far! We’ve learned so much. We’ve ruled out things. We’ve progressed. God HAS been so good to us, just as expected and prayed for. 

“Faith shows the reality of what we hope for; it is the evidence of things we cannot see.” Hebrews 11:1 NLT

Praises since this time last year: Noah does in fact have both kidneys and they are working properly. He has had an echocardiogram, which showed a normal heart and heart function. Repeated echos are recommended. Blood work shows overall good results, but some slight abnormalities in immunity function. That test will need to be repeated yearly, to watch for deterioration of his system. Hearing and vision are normal. Weight is good. He has been discharged from PT and OT because he’s just that good. 

And our faith. It is stronger than ever. We have placed Noah (and our other children) in God’s hands. We have learned a deeper reliance, a deeper trust. An increased awareness of His personal involvement lovingly woven through our lives. 

And oh. Your prayers. I wept in the front seat of my dead-battery van, a divine deterrent, the Holy Spirit causing me to pause and pray. And praise. And rejoice. And give thanks. This is what matters. Not the prescription ready for pickup.. 

I will repost from a year ago. I hope it is an encouragement, a reminder of God’s shelter in times of storms. Be aware of God’s current through your life. His grace is there, really there. 

#22q11.2deletionsyndrome #22q #walkbyfaith 

Noah’s update (post from 10-12-2017):

We have finally received a diagnosis. Noah has a genetic disorder called 22q11.2 deletion syndrome. It’s sometimes called 22q deletion syndrome, and used to be known as Digeorge syndrome and Velocardiofacial syndrome. Classic characteristics of the syndrome include problems with the velum (soft palate) and heart, and facial defects, such as a cleft palate. There is a huge number of other signs and symptoms, including compromised immune system, kidney problems, behavioral problems, learning problems, etc. Google it, I dare you. It’s a little overwhelming.. 

We saw the geneticist today. She confirmed what we prayed for, hoped for, that it is a fairly mild case. He does not appear to have many of the more severe defects. He doesn’t have a cleft palate, he doesn’t appear to have heart problems, or weakened immune system. Praise God. We now know why he was delayed in so many areas, why his muscles are so weak, why he used to leak water out of his nose when drinking,  why he could be taking small amounts if liquid into his lungs when he drinks.  We know why he was small at birth, and barely on the growth charts (but ON them, praise God!). We have an answer, and an answer is what we prayed for. We have an answer relatively early. The average age of diagnosis is 6.5 – 7 years. Thank you, God, for those extra 4 years of intervention. Thank you, Father, for the therapists and physicians along the way.

The next step is to rule out. Lots of things to rule out. Noah will have his heart checked, his immune system evaluated, his hormones studied, his swallow X-rayed (again), his kidneys ultrasounded, and he will be looked at by an ENT doctor. He will be followed by the geneticist (LOVE her) and the developmental specialist. He will continue in occupational therapy, physical therapy, and will begin speech therapy (officially, not just from mom), in a couple of weeks. And we will see. We will watch. We will pray. And listen – to our God, who WILL direct our path and who WILL walk us through this (I know this because He promises this in His word). We will listen to the doctors, to our gut. When Noah gets older, we’ll listen to him. We will pray against the RISKS. Risk of mental health problems, behavioral problems, seizures, scoliosis, obesity… We’ll pray for progress. And we’ll thank God. For what could’ve happened, but didn’t. For who our Noah is today and who he will be in the future. We won’t think in “what ifs,” which can be dark, scary, open-ended, uncertain. We will think in “even ifs.” Even ifs have closure, a solution.  EVEN IF he has growth deficiencies, You, God, are with us. EVEN IF he’s missing a kidney, You will strengthen us. EVEN IF all my worst fears are true, God is still God and I still am not. God has my benefit at heart. God lights my path. God adopted me, redeemed me, saved me and loves me. I am His.

I struggled some with sharing this. I don’t like to put negative things on Facebook. But, if I can get one more person to pray for my son. If I can get support from someone experiencing something similar. If I can be an encouragement to another mom, another parent. Most importantly, if I can point one more thing in my life to my heavenly Father, I will. Noah is a walking, talking, breathing, giggling, representation of my faith. He’s part of my testimony. He’s a reminder that God’s grace is evident, even in trials. He’s God’s tool to make me grow more like Jesus. He’s teaching me peace beyond understanding, my NEED for spending time and prayer with God. Scripture memorization. And many, many other things.

So now what? What does God want me to do with this information? How does this unexpected turn of events alter the course of my life? Do I start a blog? Do I join a local chapter of a 22q Foundation? Do I START a local chapter or support group? 

For now, I will pray. I will cherish the sweet hugs and giant kissy lips I get when I tell him good night. I will pray. I will listen. I will walk by faith. 

Thank you, family and friends, for praying and caring for Noah and for our family. 

“Be strong in THE LORD and in the strength of HIS might.” Ephesians 6:10

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