Bentley's Health

This is going to be a very short post, as I don't have much time to write :)
Bentley genetic testing came back positive, he does have Mutated Atosomal Polycystic Kidney Disease. Unfortunately, at this time there is still nothing they can do for him right now, but continue to closely monitor him. This news is not a shock to us and we are just thankful that we know what it is. God's kindness and mercy have been over us. At Bentley's last checkup with the pediatrician, he had gained 2 lbs, he is now 23lbs! The doctor was totally surprised because he gained that in one and half months! This is after taking him off the nutritional drink that he had been on. His almost daily avocado smoothie is a huge part of it :)

HERE is a webinar on the disease. If you are interested in watching it. It is 55 mins long.

God has been so kind in revealing everything to us at a slow pace. Well, at least for me. All of Bentley's issues at birth have been a direct result of this disease. It is often caught in utero, but not always. I only had one ultrasound with the Maternal Fetal Medicine and everything checked out fine, so somewhere between 22 weeks and his birth things started to change. My mind is quickly tempted to what ifs. What if I had another ultrasound... would they have caught it then? BUT God, allowed the doctors to see no sign of present danger and told me I was having a very health boy... what if they had told me I wasn't having a health boy. I would have been devastated! To have your first child and know that he wasn't going to have a good chance of surviving, isn't very encouraging. God protected me from that! I'm so grateful!
Then, all of the signs for this disease were present at the NICU... underdeveloped lungs, problems with salt levels, hypertension, the use of a ventilator and NO2... why didn't they catch it then? Well again, I see God's hand in that. What if they had saved Bentley's life and turned around and told us that he probably will need a kidney transplant and possibly dialysis before he reaches 10 years old. Would we have been so excited for his first days home, the first year of his life? Probably not. God has slowly been revealing things to us so that we can grow in trusting at each stage and I cannot express how thankful and grateful I am for that. Sometimes it is nice to have all the answers and know what is coming, but we were able to enjoy Bentley for a full year without any problems or complications, and God has reveled to us his disease before it is too late. Again... HOW KIND!!! What grace!

Bentley's occupational therapy has been going so well. All of us are so please. He is gaining muscle around his stomach and it doesn't get nearly as big and bloated. His therapist commented yesterday that all the nurses have notice that his ribcage is going back in place and his is body is responding so quickly. It's hard work for him. He is exhausted after his workout! They all love him so much. I have met so many devoted mothers in the waiting room. Many of them have been going to therapy for years. I can't complain one hour, once a week for eight months is nothing compared to their children. God has been so kind to Bentley. What a testimony he will have one day!

Well, that was a "quick" update on Bentley. I will have one on Marseille either later today or tomorrow.

Bentley's Check Up

At Bentley’s 12 month NICU check up, the doctor felt that Bentley’s liver was enlarged. He felt like it wasn’t an immediate concern and asked me to reschedule a 12 month wellness check up to get it checked out. Our insurance had just been dropped by our regular doctor, so I had to find a different office. We ended up at a highly recommended office by God’s provision. At his appointment, they didn’t think that his liver was enlarged, but thought it was low. Since this was their first time seeing him, they wanted to get a couple of background things checked out. They scheduled: a chest x-ray to make sure that everything was healed, lab work because at his newborn screening there was a T4 – thyroid problem that had never been followed up on and an ultrasound of his stomach to see what was going on with his liver.

All of these tests were done last Thursday. His lab and blood work came back fine. His ultrasound found cysts in both his kidneys and it is causing his liver to over work. The liver has actually reopened the umbilical cord vein. So, the pediatric office is scheduling us appointments with a GI (Gastrointestinal) specialist and a Kidney Specialist. That is as much as we know right now.

We would love your prayers for Bentley and for us. Of course, we would love for him to be healed by God, but if treatments are the answer we pray that they would work quickly and efficiently with no damaging effects. Our desire is for Bentley to live a long healthy life glorifying God.

So far God’s grace has been abundant. He has recently reminded me of how He has been faithful, sovereign and trustworthy, and is giving us another opportunity to walk out our faith.

Sobering thoughts on Sleep

There are just some days when I feel like I could sleep all day long. I was reading in the Valley of Vision -- a favorite -- and came across a prayer on sleep. I hope that one day I can have such a holy mind. It reminds me of 1 Peter 1:13,

"Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ."

The Puritains sure knew how to connect so many things in their life to preparing their minds. Even something as seemingly innocent as sleep.

Here is the prayer:

Sleep

Blessed Creator,

Thou hast promised thy beloved sleep; Give me restoring rest needful for tomorrow's toil; If dreams be mine, let them not be tinged with evil. Let thy Spirit make my time of repose a blessed temple of his holy presence.

May my frequent lying down make me familiar with death, the bed I approach remind me of the grave, the eyes I now close picture to me their final closing. Keep me always ready, waiting for admittance to thy presence.

Weaken my attachment to earthly things. May I hold life loosely in my hand, knowing that I receive it on condition of its surrender; As pain and suffering betoken transitory health, may I not shrink from a death that introduces me to the freshness of eternal youth. I retire this night in full assurance of one day awaking with thee.

All glory for this precious hope, for the gospel of grace, for thine unspeakable gift of Jesus, for the fellowship of the Trinity.

Withhold not thy mercies in the night season; thy hand never wearies, thy power needs no repose, thine eye never sleeps.

Help me when I helpless lie, when my conscience accuses me of sin, when my mind is harassed by foreboding thoughts, when my eyes are held awake by personal anxieties.

Show thyself to me as the God of all grace, love and power; thou has a balm for every wound, a solace for all anguish, a remedy for every pain, a peace for all disquietude. Permit me to commit myself to thee awake or asleep.

What a heavenward perspective on sleep!