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)

Leah is 2 Months Old!

She now weighs 8 lbs. 1 oz., which means she gained over a pound in 2 weeks since her last appointment. Way to go Leah! Some days Leah's been able to get sleep, and other's are still leaving her "Sleepless in Sherwood"~ as the moment she falls asleep, a seizure wakes her up.

We are so excited to announce, that in answer to our prayers for some respite, we have been approved for 3 nights a week of private duty nursing. This should begin next week! We also will be seeing a new Pediatric Neurologist tomorrow to see if there's anything additional we could be doing to help manage Leah's seizures.

We are getting much more comfortable juggling Leah's various medications, using the pump feeding system, replacing Nasal Gastro feeding tubes (well, Luke is anyways!), and pronoucning big, long medical terms.

It seems like Leah will get some time in the spotlight between her upcoming concert, a brief article in the June 4 edition of the Oregonian's Washington County Weekly, and we just got a call from Koin 6 news, to tape a short piece about Leah. We are awestruck, that all of these opportunities to share Leah's story, and the mighty work of God, have come to us as we are home focusing on caring for little Leah. We are praying for God to be glorified through all of these various opportunities to speak of how He is the author of Leah's life, and how He is providing our family the grace and strength and support from all of you, to face this challenge head on!

My prayer from day one of our diagnosis during pregnancy, is that as we walked this bittersweet road with Leah, God's goodness would be the most prominent part of our story. And that through our pain and trials, God would bring us and others closer to Himself.

Benefit Conert For Leah

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Voices of Hope Choir
Saturday, June 6th, 6:30pm
http://www.voicesofhopechoir.org/

Creekside Bible Church
22100 SW Grahams Ferry Road
Tualatin, OR 97062

The Concert is free, and a love offering will be taken for Leah's Medical Fund.

We are blown away by the love and support we've received from our community! We just found out that a local choir will be holding a benefit concert for Leah in just a few weeks. They've never even met Leah, but they have been keeping our family in prayer for months just like many of you. And now, they are wanting to help by holding this concert to bless our family and show their support! God is doing such big things in our community through my little girl. As I hold her in my arms and watch her body fighting so hard, it's incredible to think that she is fulfilling her purpose. Even though she's only been out of the house a few times, and mostly to go to the doctor and church, she's touching so many hearts who see the value of life- her life - simply because she's a child of God.

Leah's been doing "ok", which is a word I use very lightly considering the truth is she is still so very sick. We found out last week, on her last blood draw, that her seizure medication levels were running low. This means that they are not at a strong enough levels in her body to be considered therapeutic, and as a result we've recently increased her doses. The most immediate effect has been that Leah's been extra sleepy. It's been great seeing her body at rest from the seizures, and watching her sleep so peacefully for hours at a time. With her sleeping more, we've been able to get a bit more sleep as well.

Each day seems so different from the one before, as Leah doesn't seem to have much ability for routine. But each day is full of love for her, and lots of hugs and kisses from her family! With most of her waking hours spent having seizures, it's hard to have much time to interact with her. So we just love on her, right through one and into the next ones that come on. It's teaching our family a huge lesson in unconditional love. She needs us, and we are caring for her out of our love, irregardless of what she's able to give us in return. She isn't able to do the things a healthy baby could.... the older they get, the more attention they pay to their parents....the milestones that the parents love to brag about to their friends. Yet, what she is able to offer us, is at such a deeper level than any accomplishments. It's at a heart and soul level - knowing that while we are caring for and loving Leah - God is using her to change our hearts. He is changing our priorities, dissolving our fears of "how are we ever going to do this?", and bringing us so closely to His face. He is saying to our hearts, that He created Leah, and He loves Leah, and she is created in His image - and she is valued by Him!

It's very easy as Leah's Mom, to have a deep sense of love for her. However, it's amazing to me to see the love and concern that hundreds of others, and many of you complete strangers, have poured out on behalf of Leah. I guess that's the "special" part of having a Special Needs child. Leah is special, she is different, and her life here with us will most likely be very brief.

I found these quotes on another HPE Mom's website, and I just love them:

"I thought I would have to teach my daughter about the world. It turns out I have to teach the world about my daughter. They see a girl who will not speak, but I see a miracle that does not need words."

Finding A New Normal

Wednesday, May 6, 2009 8:45 PM, CDT

As Leah approaches 7 weeks old, our family begins striving towards finding our new normal. Her life is such a miracle, as she continues to fight to stay with us. God is definitely showering us with His grace, as we live more and more boldly each day, feeling a little bit less afraid with each milestone that Leah achieves. According to our doctors, Leah should not be 7 weeks old, and still in our arms.

Leah now weights 7 lbs., gaining a healthy 10 oz. over the past 2 weeks. This is almost what a normal baby would be expected to gain. Leah looks so good with her baby chub.... Triple rolls under her chin and on her thighs! Luckily for her, she wears it so well! Though Kyla told her Grandma that it wasn't nice to call Leah chubby (what a good big sister, already sticking up for her) It is so wonderful that Leah seems to be doing so much "better" than expected. She still faces huge challenging mountains that she climbs daily, the apnea, seizures and trouble resting. However as her sickness improved, she's keeping full feedings down again, along with her medications. We've added another medication for her Diabetes that should help her stay more hydrated. For the first time, she's had spit in her mouth, even blowing a few spit bubbles, which I happen to think is adorable! And we're adding a third seizure medication as needed, which seems to allow Leah to have more alert times in which she is such a joy to interact with. She loves hearing our voices and even responds with smiles on occasion! Kyla is the best at singing her lullabies (she's decided that absolutely any song she knows happens to be a lullaby, even Jingle Bells).

As I hold her all snuggled against my shoulder, and can smell her soft baby hair, I feel the deepest sense of truly living! Even in just a mere moment, I feel so clearly an understanding of life, and purpose and value! Leah embodies all that God values - it's not in her abilities or achievements that bring Him glory...but in the reality that her "imperfect body" truly has no choice but full submission to God's will and design that glorifies Him. How ironic, that with our "perfectly healthy minds and bodies" we struggle so much against God's design for us, but that when we draw close to the Lord, and follow His leading we bring Him the most glory. We strive for our own personal successes, based on our society's definition of success. Yet how often, these very pursuits can distract or even replace our focus on God. Admits all my sleep deprivation, God is still speaking to my heart, and teaching me through my precious Leah.


On the topic of sleep deprivation, we are learning to juggle Leah's needs and slowly trying to add the needs of our other 3 family members back into the mix. Our greatest need as parents right now is for sleep. As Leah grows, her body is getting more used to her seizure medications, therefore they are less effective. And in her first few weeks of life, she slept pretty well at night, because the heavy medications helped to knock her out. But now, her body is much more awake, especially at night, which is causing her to have more night seizures as well as periods of "normal fussy baby cries". I tell myself I need to truly treasure each moment, even these periods of Leah crying with such strength that she's red in the face (as red sure beats her turning blue)! But the reality of many nights only truly getting 3 hours of sleep for Mom isn't going to allow me to sustain this pace should Leah continue needing my care for much longer. Our greatest prayer request is for more sleep for Mom and Dad. We aren't sure how God will choose to provide that, through either Leah sleeping better, or through nighttime care assistance with Leah, or some other means. But we know that in asking, God WILL provide! The lack of sleep is taking a toll, and now I'm finding myself feeling a bit sick...and there just isn't any free time to rest and recuperate.

I have also recently discovered a Yahoo Group for HPE (the acronym for Leah's condition). This has brought me such hope and encouragement this week. There is also a nonprofit called Families for HoPE, which is a support group for families dealing with HPE. Several mothers with children like Leah have emailed me and begun sharing their experiences along a similar journey with me. One little girl, who was a miralce baby like Leah, is now a miracle 3-year-old, with the same beautiful face and similar medical struggles as our Leah. For some reason, this one precious little girl, has allowed me to dream even bigger dreams for Leah, knowing that survival past months is possible although not the most probable. As we know, nothing is impossible for our God, and He is the author of Leah's life. We are humbled by His answers to our specific prayers on behalf of Leah, and we know that even when His decision will be different than how we are praying - He'll allow it to truly be "well with our souls". Those are the promises of God to which we cling during uncertain times! In God alone can we trust