Lots of Catching Up To Do!

So much to tell y’all about what’s been going on!  Lots of wonderful and lots of hard all rolled into one.

Below is more detail we learned from all our visits last week.  I apologize that it is so long-winded, there’s just so much information to give y'all.  

Before we get to that, 2 things Frazer wanted to share:

 

1 – THANK YOU!  To all that pray, drop off flowers, come to the house at 5:45am, help with the ‘arsenic' hours (5-7pm), send us prayer blankets, drop off meals, send gift cards and provide for us in hundreds of other ways, THANK YOU!  We have not been able to thank each of you yet, but that is a goal we have.  Until then, know that God is using all of you to sustain us. 

2 – During these days that seem dark, we remind ourselves that we move one step at a time and there is Light for each step.  You help us see the Light each step.  We get glimpses from time to time of what will be and at the end of the day, this is what keeps us plugging on: 

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more.² And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. ³ And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. ⁴ He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

⁵ And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.” ⁶ And he said to me, “It is done! I am the Alpha and the Omega, the beginning and the end. To the thirsty I will give from the spring of the water of life without payment. ⁷ The one who conquers will have this heritage, and I will be his God and he will be my son.

Last week was incredibly busy.  We met with neurologist on Monday, had a parent-teacher meeting at Ann Carlyle’s school and physical therapy Tuesday, occupational therapy and a meeting with the palliative care team from LeBonheur Thursday, and Ann Carlyle went with us to the grief counselor Friday afternoon.  I also spent the day in Nashville, Wednesday, to pick up some equipment for Milla.  While last week gave us lots of new info on the girls, much of it was difficult.  

This week has had a much slower schedule but it has been an emotionally heavy week.  Milla had a few days of being pretty lethargic after an increase in her seizure medication last week, but then she broke out of the drug fog and had 3 or 4 AMAZING days.  Y’all, she was walking BY HERSELF.  She was wobbly (kind of like when a baby first learns to walk) but she was doing it!  And her seizures were much, much improved as well - most significantly, the drop seizures where her body will fall suddenly and quickly.  She was having such a good time scooting around the house pushing babydoll strollers and riding toys she hasn’t been able to balance on in months.  It was awesome to witness.  (Although all this activity led to a fresh crop of bumps and bruises!)  However, when she woke up yesterday morning, we could see immediately she was starting to slide.  And throughout the day, the seizures came back with a vengeance and her body fell weak again - she was unable to even hold up her head or torso much of the day.  In a way, it is hard to see her get so much better knowing that it is temporary, but we are so thankful that she experienced some freedom from her chains, even for just a little bit.

Also, early in the week, as Frazer was playing with Elle, she had a significant absence seizure…the first we’ve seen and recognized.  Thankfully, her medicine is keeping the seizures at bay right now, most specifically convulsive seizures.  And while the absence seizures are fairly ‘benign’ (no physical harm), it is a reminder of what is coming for her…and us…and our family.  Elle is so bright and energetic and funny and free and so full of personality and laughter and the grief of watching all of that fade away runs deep.

So here’s (the very long) synopsis of all our appointments and meetings…

Neurology Appointment -

Dr. Wheless increased the dose of one of the seizure meds in hopes of decreasing some of her seizures, and he doubled her ambien dose in hopes of helping her sleep a bit better.  He was surprised at the speed of Milla’s digression, which is noticeably faster than we expected, and he predicted her medical needs would greatly increase in 3-6 months.

As for Elle, Dr. Wheless is confident that her current med (Depakote) is preventing many more seizures.  And we learned that she will most likely follow the same path and time-line with the disease progression as Milla has.  Also, Elle’s sleep is plagued by a lot of nightmares (and/or seizure activity - we aren’t sure) so she isn’t sleeping well.  But no changes in her overall treatment at this time.

 

Physical Therapy -

Milla continues to digress and isn’t able to walk independently.  Sometimes she has the strength to bear her own weight but other times, she does not.  We are going to need braces for her feet/legs soon and we can see her motor skills declining week to week.  For the first time, the therapist noticed something called clonus, which is a kind of nerve issue that shows neurologic deterioration.  

Occupational Therapy - 

Milla’s occupational therapist told me about places that consign used medical equipment and while there wasn’t one in Memphis, there was one at the Cerebral Palsy Foundation in Nashville.  So I called them to see if they had anything that Milla could use and they did!!  I grabbed a friend and drove to Nashville last Wednesday (and my sister was able to drive from Birmingham and meet us there!!) and we came home with a stroller/wheelchair, a (pink) bath chair and another (purple) special needs chair (called a special tomato) that is on wheels, close to the ground and it can also be strapped to a regular chair.  Thousands and thousands of dollars of equipment for ZERO dollars that we could pick up IMMEDIATELY instead of waiting 6+ weeks to get through insurance, backorders, etc.  The people that work at this foundation are amazing and wonderful and they are operational solely through donations.  They do good work and help a lot of people.  It was an incredible day feeling God’s provision for us.  

I cannot tell y’all how much the daily activities have changed having this equipment.  Milla can actually eat without us holding her to make sure she doesn’t fall out of the chair and/or slam her face into the table in front of her.  The stroller is table height and has a 5pt harness so it keeps her safe while she eats, colors, etc.  AND Milla loves to sit in it…it seems to provide her with a sense of safety…another answer to prayer.  Also, one of us is able to bathe her now due to her new pink bath chair instead of it taking 2 people.  These things free up my arms and hands (and back) and enable me to care for everyone a bit more efficiently while keeping Milla safe.

 

Palliative Care Team -

Three doctors and a nurse practitioner came to the house for 2 ½ hours last Thursday evening.  They will be a kind of ‘hub' for the girls’ medical care and will be a good resource to bounce ideas off of, to help us understand the impact of decisions we are making and for keeping doctors and nurses on the same page with our wishes and plans for the girls' medical care.  We had a very good meeting with them - we learned a lot and they were very kind.  They have already followed up with answers to a number of questions.  But as thankful as we are to have Dr. Cunningham and her team on board with us, our hearts have been heavy as we are being forced to deal with bigger issues such as hospice care, what that looks like and when to begin that process.  According to Dr. Cunningham, Milla would likely immediately qualify (and possibly Elle too simply due to her diagnosis), but it’s a complicated process and there is much to consider before moving that direction.

 

Center for Good Grief

This is a center that ONLY does grief counseling and they also specialize in grief counseling for kids.  It is a wonderful place.  Frazer and I have been going since December and we bring Ann Carlyle with us every so often so that her therapist can establish a relationship with her and lay some groundwork for identifying emotions, etc.  We are trying to keep a close watch over her through this as she will certainly suffer and grieve greatly over the next few years.  Our hearts break daily concerning this and we constantly wonder what direction to go and how to handle her in light of everything going on, so we are thankful for the wonderful counselors at this center who are helping and loving us through this.

Speech Therapy - 

Elle had her speech evaluation and while she is right on track with what she understands, she is a bit behind on her articulation.  So we are going to start speech therapy with her twice per week and praise God, the therapists are super amazing and accommodating so that her therapy will be folded into the appointments we already have weekly - in other words, no new appointment times to have to get to each week!  

I think that about sums it up (whew)!  There is much to process, much to grieve and much to be thankful for.  Thank you for reading this and praying with us and for us.  We love y’all!

Dana and Frazer

Milla and Elle - sweet-pies, pacis and the iPad - a perfect combination

Elle with Ann Carlyle - lots of sister snuggles lately :)

Elle in her typical fashion

Milla playing with the best toy around...a big box!

The Nashville Roadtrip Crew!

Ann Carlyle wanted Milla to sit in her lap so she could 'read' to her :)

Elle-belle on the slide!