A Summer of Good Things

Dear Anna's Prayer Team,

God is growing Anna into one sweet little girl. I have been so full of thanksgiving over how well Anna is doing. I can't say there have been milestones that excite therapists and doctors (reflux, vision impairment, and high tone persist). Most of Anna's well being seems relational. She loves it when we sing. Any fussiness she might have is put on hold if we are singing. I was singing "just a spoonful of sugar" to her today and she was kicking with delight wanting to engage in any way she can what fun.

We see evidence of a girl who wants to communicate but cannot get her message across. Her cognition is at work so may the Lord enable it. We received two things that help Anna express at no cost to us. One is a switch toy that says "hello" and "good bye" for her. It is Lindsey's recorded voice as the greeting when she presses the button. This is in the intro phase. The other is an Upsee, this is a harness that enables any non-weight bearing child to hang from an adult waist and walk in step with them (see the photo below). It is a relational tool because there is an added togetherness that we experience as we walk with her literally. The first time I tried it was Father's Day, that was a wonderful treat. I thank the Lord for the spiritual gift of generosity that He imparts to cause such gifts for our family. (look at that head control!)

 Simon is always interested in getting her attention. I can tell that Simon is learning that Anna is different. She is the only person that Simon will gaze at and he will not "win her over." So he remains looking at her wondering why she isn't looking back like mom and dad do. I know many special needs parents struggle when strangers look and "stare" at their child. That has not been the case with us. Most often I see the tenderest side of humanity when they look at Anna. It is one of compassion and frequently followed up with "your daughter is beautiful." 

Please pray for the following things as we give them up to God in prayer for Him to speak to us, bless us and give us direction.

-For The Lord to lead us in selling our condo in August at a favorable price because the market indicates this (this will make us debt free and enable Anna to receive those expensive stem cell treatments).
-For our fundraising to continue for the "intensive model" of therapy (not covered by insurance, we are over a 1/4 there)
-For God's timing, that Anna would receive intensive therapy right after the stem cells. That God who is more than able would bless and bring His healing via these treatments
-For The Lord to approve and enable our Medicaid requests:
        -A medical, enclosed, twin-sized bed for Anna
        -to switch Anna from the "life limiting waiver" to the "CES waiver" (Children's Extensive Support) This would enable additional nurse help and additional therapies like Aquatic Therapy and Hippo Therapy
- For clarity with Lindsey's Job as Anna's CNA.

-For wisdom and direction as we meet with the GI doctor tomorrow, to see if Anna is a candidate for the Nissin Fundoplication surgery for her GERD/reflux

Love,

Nic, Lindsey, Anna, and Simon

 

Our Self-Sufficiency does not Suffice (Prayer List)

First lets thank God for all that He has already done in Anna. She is getting better, her reflux has become more and more manageable, flaring up periodically not continuously, only a couple of times a day. We feed her consistently with a wide variety of foods and she has been gaining weight. We got a generous check for therapeutic toys from our county's early intervention program. Anna is getting introduced to therapy "switch" toys which will serve as a way to communicate. Anna continues to sleep through the night. Her smiles are aplenty. We have a good group of therapists supporting us at our home with times that accommodate us. We are also doing extra therapies that are not covered by insurance. Anna is getting better with brother Simon bonding too! O and thank God for family walks, we live next to thousands of singing birds that capture Anna's attention every time.   

In truth is humbling to depend on Christ, only He can makes us live a blessed life even when we are needy. It is our God who hears and upholds us -and on top of that He keeps us encouraged.  God be praised for all the many privileges we have because of private insurance and Medicaid. I know that it is the love of God at work, He is so steady-handed with us. I see grace after grace when it comes to the context of our life. 

Believing on Jesus for healing is just a question of when. Please pray with us about the following:

For Equipment:

-for a Sleep Safe bed to be approved by our insurances. its a twin size, crank adjustable mattress, higher off the ground (for diaper changes too), and encased

-for the durable medical equipment to be durable (our stroller breaks down lots)

-for Anna to understand that a pushing button can communicate for her, May switch toys grow her cognition

-for a Hyperberic oxygen chamber (rental possibly), Upsee, and other alternative therapy devices not covered by our insurances

For Vision Impairment:

-for Anna’s sight as she prepares for glasses.

-for minor eye surgery over the summer to adjust the muscles in her eyes that are causing a misalignment when she looks from side to side

-for the cortical visual area of the brain and the optic nerve to heal

-for the Anchor center (blind school) to continue to develop her eyes, as well as sensory development

For GERD:

-For the strengthening of Anna's core muscles that would help the esophagus sphincter to work properly to eliminate reflux

-For consistent giving of the Antacid, and easy burps after each meal

-For no acidic damage to the esophagus and no aspiration when refluxing

For Cerebral Palsy:

-For increased range of motion and stretching.

-For relaxed limbs (for low tone), able to summon strength intelligently as needed not erratically stemming from her spastic quadriplegia 

-For our PT Robin who engages Anna better than all our our previous PT's that God would used her to bring wellness to Anna 

-For Anna to be weight bearing in the hopes of her walking some day.

For Cognition and Speech:

-That Anna would be able to express herself in a way that we can better serve her, through signing, toys, etc...(what works for Anna).

-For God to open her mouth and touch her tongue to bring fourth speech, ability to express thoughts, we know she is often attentive trying to figure things out

-For Anna to have more opportunities to experience things that do captivate her: symphony, birds, motion (swinging, bicycling, swimming). 

For Neuro:

-That the newly placed shunt tube would effectively extract cerebral spinal fluid (not too much, not too little). That it remains well placed.

-For the Hypsarrhythmia that she got diagnosed with (again) would leave this instant. For wisdom in treating this, that it would not provoke her brain to unravel into greater problems

-That Anna would concentrate and learn amid the distraction of her brainwaves.

For Social Media and Fundraising:

-for God to bless our fundraising efforts and our gofundme account for intensive therapy and stem cell if the Lord wills.

-for wisdom to obey His lead that we would not do things in our own strength, or exacerbate those that love us

-for the Lord to be exalted on Anna’s public Facebook page, that He would use it as a vessel for show those watching that only God can save and heal to visit it you don't need a Facebook account www.facebook.com/annaunlimited

Our endurance is thanks to our hope in Jesus',