Anna's Saving Grace

Dear Prayer Warriors,

I got some daddy daughter time in on Monday as we headed up to Denver for two appointments. Anna let me sing all the way up. It was a time of devotion and worship. I was belting out all the old campfire songs full on loving God. It’s a wonderfully unique thing to bring Anna into my quiet time with God. My other kids want to do something else. But sweet Anna will listen to Scripture without objection, agree in prayer and let me sing. There are times when I sing that she joins me with her cooing and abstract vocal styling.

We established care with an orthopedic surgeon to discuss Anna’s hip dysplasia. Her femur comes in too straight into the hip socket which prevents a normal formation of the hip socket, ultimately leading to hip dislocation. He explained that all this is caused by Anna’s cerebral palsy (cp). 

The big revelation he made was that Anna is not in the spastic quadriplegic cp grouping (as diagnosed in paper) but rather the dystonic quadriplegic cp. This means that she has periods when her muscle tone relents naturally, whereas spastic is more of a constant flexing of those muscles. The doctor informed us that 95% of non-ambulatory (cannot walk) cerebral palsy kids develop hip subluxation (pre dislocation) requiring surgery. The majority of cases (80%) occur by the time the child is 5. The doctor said “Anna’s dystonic breaks in muscle tone is her saving grace.” I interrupted him, “Anna’s saving grace is far greater than that. we have seen miracles.” Perhaps the doctor was just using a figure of speech, he is right, her cerebral palsy could be so much worse. A softer disability would be a mercy from God rather than a saving grace.

When I think of God’s actual saving grace for Anna I think of the parable of the Great Banquet where those invited chose not to come, “Then the owner of the house became angry and ordered his servant, ‘Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.’” Luke 14:21. And more directly, how God promises that “the lame I will make my remnant.” Micah 4:7. Jesus extends salvation to Anna! Her saving grace and my saving grace are from the same source the Word. No merit of our own, just God's grace. Even before Anna and I left the appointment room I prayed for God to honor how provoked I was. I asked God to show miraculous grace in this situation. To bring healing to Anna’s hips noticeable in her next X-ray. And that she would be monitored closely for years and never be a “good candidate” for hip subluxation surgery and that the doctor would remember the greater saving grace that we brought to his attention that day. 

In faith I know that Jesus is the one taking care of Anna, He will heal, He meets her needs. Even when I haven’t read the latest medical journal on cerebral palsy and blindness I know Jesus has. Even though there is no special needs trust set up for Anna I know Jesus will meet all her needs. Even though there may be more surgeries I know Jesus will shepherd us. What a gift of faith Anna has become in the life of my wife and I.

Please Pray for:

-Numotion to call us regarding a stander, gait trainer as we are still waiting.

-my private insurance to accept my doctor and therapist forms to see if they will pay for a platform lift, they have to be submitted through a lift construction company that they approve. the company I talked to doesn’t submit to insurance.

-full healing of Anna, including from an acute respiratory illness she has been dealing with for about ten days.

-the right night nurse willing to work 4 nights a week. Right now we just have 2 days covered.

God’s got us,

The Currats

 (the Pic is of Anna's dedication) 

God's Hand on Anna. A 2019 roundup

Dear Prayer Warriors,

Happy New Year I wanted to give you a roundup of all things Anna from 2019.

Medical visits:

This year we had one surgery (the Jejunostomy, paired with pulling her two front teeth). This was to minimize her exposure to radiation and to keep food out of the stomach where reflux was so common. The surgery and the benefits were both a great success praise God. Anna had one other week long inpatient hospitalization for a kidney infection and UTI.

The pulmonologist removed two of her three lung medications and Anna has been doing great. She still wears her BiPAP mask at night to help open her lungs and prevent her propensity of atelectasis (collapsed lung). Anna continues to keep her airway and lungs clear with all her excess saliva.

Our new GI doctor encouraged us to start a supplemental blended diet on top of the formula for greater weight gain. Two years ago, we fed Anna full time with a blended diet. It was such a mess literally, it was expensive, and Anna ended refluxing most of it up and out. Now that we are feeding into the intestine, we gave it another shot. We got a different feeding pump for grainier mixes, dusted off the Vitamix and our Gerber baby jar collection. Since we started, we have seen more weight gain, better skin complexion and energy.  Anna is just over 40 pounds. Its getting the nutritionist to sign off on the recipes that has been a challenge.

The Physiatrist was pleased to see that Anna’s hip dysphasia (malformation leading to dislocation) hasn’t progressed. She still has asked us to meet with an orthopedic surgeon about this. The Doc gave us a prescription for a new stander, gait trainer, and a platform lift. Anna’s muscle relaxer was also increased. In an attempt to improve Anna’s hip joint, the doctor injected Anna’s inner hamstrings with botox. This is a three-month paralyzer that should prevent Anna from utilizing her typical extension pattern that causes malformation in her joints and bones.

The Ophthalmologist only saw Anna once this year. Her eyes seem less active and less interested in following sound. Her vision does not seem to be increasing, but only Anna really knows. We got new glasses with shorter stems and that has helped immensely to keep them on her face.

Praise God for no needed appointments with neurology and neurosurgery. Although we did meet with neurosurgery down here to establish care. Anna continues to show no signs of seizures or shunt malfunctions!

We also met with a behavioral doctor that diagnosed her cognitive ability to give her an official developmental delay diagnosis as it was a requirement for Medicaid.  

We got preapproval for genetic testing that the geneticist encouraged us to have because of Anna’s Polymicrogyria (where the folds or ridge-like shaping of the brain develops too many folds, and the folds are unusually small). We have yet to take steps to complete it. It seems like it means more to the doctors than it does to us to know the origin of this malformation.  Another pending treatment is the stem cells that we harvested and banked from Renee’s umbilical cord. We have yet to find out if they are compatible and could be administered to Anna.  

Therapies:

We had a Physical Therapist that loved working with Anna and pushed her productively with great encouragement. Then we moved, we are on our second PT in Colorado Springs and they are just not connecting with Anna or interested in pushing like we have seen. We are weighing our options to do another intensive therapy run, or switch companies again. Thankfully our PT wrote a letter of recommendation for all the home modifications she recommended: a wider driveway, paved access to the back yard, a platform lift, widen the bathroom doorway, bigger bath tub. Perhaps the insurances will find these as necessities too.

We like Anna’s Occupational Therapist down here in the Springs however she was diagnosed with cancer and is moving back to California. We are looking for another OT.

Speech is the only one going smoothly down here. Anna is tasting foods and enjoys interacting with all the lip and mouth exercises.

We had to discontinue Hippotherapy (horseback therapy) because its billed differently in this county. Anna loved this so hopefully we can find a place that can make it possible. Anna receives massage therapy which continues to help her with bowel movements. We noticed that Anna doesn’t engage like she used to with music therapy so we are going to discontinue it for a while.    

Nursing:

Praise God that Lindsey and I continue to be Anna’s Certified Nurse Assistant CNA. This enables Lindsey to stay home with all our kids. I supplement a few times when Lindsey is out with friends. Lindsey is excellent with Anna. Bathing Anna has become rather difficult, we have a smaller bath and a small bath chair for a growing girl. Lord willing, we will get a better tub and chair in the coming years. Tonight, is the last night for Anna’s main night nurse. She worked 4 nights a week for us and we currently don’t have anyone to replace her yet. We are their “top priority”. We are thankful for our other night nurse that continues to work the weekends. Since Anna is nonverbal it is really helpful to have skilled nurses that help assess when Anna is fussy and not feeling well. We will miss the extra love and care our main nurse gave Anna during her time with us.

Loose ends:

-Stemming from the last hospitalization we have found ways to keep Anna having regular bowel movements avoiding backups, frequent suppositories and further complications.

-The ramp van continues to be a tremendous aid we have had it for close to a year and a half now, praise God.

-The home is a tremendous comfort to live in, we didn’t know just how helpful more space would be.

-We have house cleaning which is a great help when they show, the person cancels often.

-We still have two insurances that continues to pay for 99% of Anna’s medical expenses.

-We were surprised to receive a $2400 check from Jefferson county to spend on Anna as we left. we were able to buy adapted toys for her to interact with and a backpacker’s backpack to carry her in on hikes. We still have a good amount of it saved for home modification although we were thinking about spending it on a week-long respite retreat that Joni and Friends do for special needs families where God is glorified and sought, and I get one on one time with Lindsey.

-Pray that we would find babysitters willing to know Anna and love our kids. I just want to treat my bride the best I can and I know that quality time has no substitute.

I love that Anna employs people, she brings financial well-being to multiple households and blesses the people that help her with money. That is a grace from God! I pray no one who serves Anna takes advantage of her, thinking she is just a means to get paid. There are two people who are full time paid and half a dozen part time, on top of all the doctors and specialists. Please join us to pray for these many things mentioned as you feel impressed upon by the Holy Spirit. Bring full healing Lord Jesus to Anna.

God has equipped us to meet Anna’s needs and He will continue to do so, blessed be the Name of the Lord.   

Love,

Nic, Lindsey, Anna, Simon, and Renee