9 Weeks Old

At 9 weeks old, Leah is growing, but still facing challenges from many different angles. She's most likely been aspirating, meaning she's getting fluids into her lungs, which is getting infected (the makings for aspiration pneumonia). She will start her 3rd round of antibiotics in as many months. With being sick, she's spitting up all her feedings again, which brings up her medications, which brings us back to where she was last month with her last illness.

This has been one very busy and complex week for our family. After seeing a new Pediatric Neurologist last Friday, Leah will be having a Video EEG study at Emanuel Children's Hospital on Wednesday, June 3rd. This test will video tape Leah and Mom for 6 hours, along with recording her brain waves through 20 probes stuck onto her scalp, along with Mom pushing a button when I believe she is having a seizure. This will gather a wealth of knowledge about Leah's various seizure types, and the behaviors that we're seeing visually from each type. This will help be a guide for possible new medications to help manage the seizures to get Leah more comfortable.

The bummer is, that in order to do this test, we cannot be on Hospice. This is a very subjective issue, however having additional tests on Leah doesn't fit with the typical parameters of hospice. The reality is we are still providing Leah her end of life care, and as her parents we consider finding out how to best control her seizures as a part of providing her comfort care, as it will not truly prolong her life. So, come Tuesday, we will need to transfer all of her medications, pump rentals, durable medical supplies over from hospice, to our own insurance. This feels like a bit of a head ache that we hardly have time to focus on admits Leah being so sick and getting ready for her test.

The other bummer, is that the in home nursing assistance that we finally got lined up started this week, was being provided through hospice, and so that goes away too. We're working out the details of switching that over to our own insurance too, but everything with insurance takes WAY longer than it should.

We're also putting heroic efforts into finding out what programs and services Leah qualifies for. We've been denied by Social Security Disability Benefits, denied by the state Medically Fragile program, and are unsure of where else to turn. We did finally find out that Leah's been accepted into the Washington County Developmental Disabilities Program (so we feel like we're winners, only we have NO idea, what services this could possibly provide for us. We'll call Monday and start this process! We're calling every organization that we know of and applying for them all, starting down a dozen different paths hoping that at least one will help provide financially for Leah's medical care needs.

On this topic, we feel that the best case scenario is for Leah to be able to get onto the state medical insurance program of Medicaid, which would be a HUGE help. She could get every/all tests, specialists, medications, medical rentals, diapers....all covered! That would free us to simply care for Leah, not to be spending hours a week on the phone fighting with our insurance to figure out what needs to happen to make things happen. We just learned this week that we can request a Case Manager with our own personal medical insurance who will be our one contact for any future insurance questions (which we can expect to have quite a few from here on out.)

So...we feel like we're finally beginning to get somewhere, but it required us to move past the services offered by hospice, which is indeed a mixed blessing. We know that Leah needs additional tests and additional medications, and that isn't possible while on hospice. But we know that Leah will be going to Heaven soon, and the thought of NOT having these services through hospice is a bit scary to Mom.



This is absolutely the hardest thing I could ever imagine doing, and now that we're in the middle of it, we know that God is providing the strength. I'm providing the tears and in such great abundance some days! The constant tug between Kyla's daily needs of an energetic 3-year-old vs. the immediate needs of Leah has been so hard to juggle for Mom. We've been blessed by many visits from friends and Grandparents to help play with Kyla and get her out of the house.

We could never do this alone, and we know that indeed we are not alone! It's ironic to think that the smallest person in our home requires so much continuous attention. She is your normal newborn, with those demands, taken up to a higher degree as she is only able to seep a few hours a day while enduring over a dozen hours of seizures.

As her mom, when I step back and simply let all of those realities fade away for a moment, I am left with the most adorable precious little bundle in my arms! With her soft baby skin, beautiful blue eyes, unique smile, yummy baby smell and the most engaging little coos and cute hiccups. She's my baby girl, and a child of God, who just happens to be so very sick! I know there is purpose in the struggles we face, and while I cannot see it all clearly now, I know that God is using this in a mighty way! Our family is blessed by all of your prayers on our behalf, as sometimes my heart is so unsure of what exactly I should be praying. I know that my desire for Leah to stay here with us, in light of all her challenges, is so limited and possibly ignorant in light of God's sovereign plan. And the truth is that when it's time to say Good-Bye to Leah here, there will be so many saying, "Here she comes!" in Heaven! Yet, God has given us one more day together, and He is allowing us to care for her special needs. It's for these needs that we ask your continued prayer!

Please pray specifically for these following things:
- Leah could recover from her respiratory infection quickly
- We could coordinate overnight nursing assistance several nights a week (having it was SO wonderful this past week)
- Leah could get onto Medicaid
- The Video EEG to go well on Wednesday (mom will be there solo with Leah, and taking her out for that long feels like a monumental task) Pray too I could find someone to come with me, as Luke isn't able to come.
- That the results from the test would arrive quickly, so that any additional seizure medications could be given to help get Leah comfortable with fewer seizures
- A wonderful Concert for Leah next Saturday
- Tuesday morning interview with Koin 6 News about Leah (most likely airing the following night, but I'll let you know as soon as I find out for sure)