Wednesday, May 27, 2015

Long Overdue Update...

It’s been a while and in some ways our world is the same, but in many ways it is ever changing, so an update seemed appropriate.

 Elle – her seizures are under control.  We see small ones, typically at night and a longer one will pop up from time to time (it’s been over a week since the last bigger one).  As it stands today, the med combo she is on seems to be pretty effective, but that can change tomorrow as the disease progresses.  As for the rest of Elle, she seems to be doing well, playing and doing typical 3 year old stuff.  We see very small development things with her, but Elle is very smart and overall doing well right now.   Elle eats less than a bird and she is still light as a feather, but she seems pretty healthy.  But, her sleep is not good.  Typically she is up 3-4 times during the night and while she generally goes back to sleep with relative ease, she is starting to get up earlier in the day.

 Milla – not much good to report with “Milla Willa.”  Since we last updated, she took a significant downturn at the end of April around the time she had the cough that was in our last update.  At that time, she had generally weakened, could not chew the same foods and her chest cold/cough all caught us off guard.  Most recently, the past weekend was another significant downturn for Milla.  A noticeable weakening and unresponsiveness, increasing seizure activity and excessive drooling.  After visiting with the doctor yesterday, the seizures seem to be less concerning, if they are even seizures.  It’s hard to distinguish a seizure from her just “checking out” briefly (due to disease progression).  Thankfully, they are not violent convulsive seizures.  She is weak to the point that she cannot sit up on her own, the majority of the past few days, she struggles to get even a word out and she can barely lift cereal to her mouth.  In the midst of this, she is still with us and playing hide and seek under the blanket, showing everyone her newly painted fingernails and toenails and asking to go outside to see the bubbles every chance she can. 

 In February, we were not thinking in terms of time frames for Milla’s life.  But by early April, we were talking with a doctor on our team and, while no one will give dates or predictions, we were thinking at the time, “I don’t know if Milla will live past the end of the 2015 or maybe early 2016.”  By late April and after the downturn I mentioned above, we were shockingly asking if Milla would even live to the end of summer/late September.  The doctors agreed that that was not an unreasonable conclusion based on her state.  And this week, we are facing the reality that Milla is dying now.  I mean, we know it’s a terminal illness, but the term is short.  Technically, Elle is dying too, but her term doesn’t seem short right now.  The largest concern now is the Milla's drooling, which indicates the likelihood that fluid is or very soon will be getting into her lungs, leading to pneumonia.  Recovery from pneumonia is not likely for her.  All this to say, we are on the home stretch with Milla and the home stretch gets shorter and shorter than we expect.  It is obvious but, at the same time, surprising that she has an aggressive case of Batten’s.

 Ann Carlyle – She is plugging along.  She asks questions and understands ultimately what is happening, but I don’t think she grasps timeframes.  It is interesting to watch her because she will ask and talk and then in mid-sentence change the subject or walk away.  It is her way of saying I have had enough, let’s move on.  I am so grateful for the Center for Good Grief and Lauren, her counselor.  Lauren and Angela (our counselor) have been awesome at helping her understand her feelings and to talk about how she feels and they have been awesome at helping me and Dana work with Ann Carlyle.  It is a process and it takes a lot of work.  Please pray for Ann Carlyle, especially as it is likely we will be having some tough conversations with her in the coming days.


I have a few observations.

- When I put each of the girls to bed, I sing a song and pray and each time, I ask for healing for our girls and then ask for God’s mercy and strength to make it through each day.  Coming up on the end of May, He has provided us seven months of making it through each day.  It is very hard to ignore that God is answering our request and providing mercy for Milla by giving her an aggressive case.  I figure that I will not be thankful for this mercy at the moment she is not with us.  But He has answered us through all this so far.  He has carried us through the storm.  He will provide for us in the future.

- God is preparing Milla’s room and it seems as though He just about has everything ready.  I try to find peace in knowing that she will be healed and with Him, but it is not very comforting right now.

- All of this only reminds me of Elle’s journey.  This does not take me to a good place.

- I recently read a person’s situation of suffering and here is the comment:
  “We’re surviving. Because we have no other choice. We aren’t going to 'keep fighting.' Because that implies we have a choice to stop fighting. This is our reality.” Hay Farris 9/8/14

 I love this quote and it accurately describe us.  We take small bites, rarely more than one day at a time, and most often half or 1/3 day at a time.

- I had been thinking that as we approached the girls’ death and given the slow nature of the disease, I would have plenty of time to process and prepare for their dying.  Our parents are still living, but I remember as my grandparents neared the end of their lives, many of us around them had time to prepare for their deaths. I  have heard many people speak of death in this way or I have heard this: “at least they are no longer suffering.”  These comments are made mostly about the elderly.  I have learned and I am learning that this is not even close to the case when thinking about your children.  Things don’t work that way when it’s your children, it is very, very different.

 Final comments:

- We have been having help overnight two days each week, which has been great!  I just found out ten minutes ago that we are now qualified for 12 hours of nursing help five days a week and it looks like it will be covered by insurance!  Again, God provides for us in the midst of a storm that does not seem to ease up.  God be praised.

- Thank you to those coming to help with the girls, especially the morning servants.  They show up at 5:15am and the past two or three weeks, there has been no routine.  Some days the girls are up at 4am, some days 6:30am.  I appreciate each of you coming whether the girls are up or not, it helps us get rest to make it through the day.  God be praised for His provisions.

- Thank you to First Evan for hosting a prayer meeting for us.

- Thank you to all who are praying.  This is the single most important thing that you as people can do to help our family through this.

One step at a time, even if it’s only an inch or two,