Who knows something about Periventricular Leukomalacia?

If her life has not been difficult enough being born eight weeks early, then just being born to the parents that she was, then put into foster care for three months,  then returned to her parents who juggled her back and forth taking turns with her every other week, and then finally being moved again but thankfully back to us. During all of this Alexa has been plagued with infantile spasms or seizures as they are commonly known. Although her doctor nicely says, "You are responsible for saving this baby," will I ultimately be able to save her? We have had a CT scan, two EEGs with another one on the way, horrific screaming blood tests where usable veins are like finding a needle in a haystack,  a multitude of doctor visits, an upcoming swallow study, weekly therapies, and an MRI. All of the appts. have been at least an hour away with many, many of those appts. including an entire hour of screaming up and back in the car. Thanks to my mom and her sweet singing (I didn't know my mom could sing) Alexa is sometimes comforted.  As we try to minimize the seizures  with a medication that causes vision loss we continue to grasp at straws as the EEGs show no improvement after all this time of taking the medicine. So now the results tell us she has Periventricular Leukomalacia or PVL. This essentially means brain damage which as of yet they have not told me how significant. It doesn't take a rocket scientist to know that an 8-month-old who can barely hold her head up, won't make eye contact, and sleeps a ton due to exhaustion from seizures, has troubles ahead. So now we wait for her EEG tomorrow and her doctor's appt next week to have some sense of the severity of this. When will this baby's troubles end?

Sooo many people, sooo little time

I miss my blog. I miss it because it really has been a diary for me of sorts and very therapeutic. If one is not writing in their journal they are missing out on documenting the good and bad times. So this is my attempt to get back to something I did not just for myself, but someday for my little people to know how much I thought of them. Update on the family:

Lonnie:
still working part-time at the golf course and still getting unemployment compensation, thank God. While he is home though, he has done an amazing job of helping with all these little people. He has really stepped up to the plate.

Lori:
enjoying every minute of this large family.  I'm also still trying to stay at University of Phoenix. School is barely manageable with the high needs of this family. I lost my 4.0.  :(  Not happy about that, but at least I know I'm capable of it. For now, knowing that is going to have to be enough.  Time just does not allow for that kind of devotion to my schoolwork.

Angelia:
still in Gettysburg for now, but contemplating a move to Pittsburgh this summer. She & Brent were both accepted at schools there but working out all the details is always a challenge. She thrives on a challenge though. We will miss her when she leaves. I love her surprise visits and her yummy Panera lunches!

Josh:
finishing the 5th grade at cyber-school again this year. We love the freedom it provides. Although he is so independent with his schoolwork now, it makes my day to see his face throughout the day. He is RARELY EVER in a bad mood. Amazing kid, really amazing. He's also enjoying baseball again and thinking about football camp this summer. Sports, can't be a Groft without them. :)

Kirsten:
finishing 2nd grade in a special NI classroom (neurologically impaired) this year. She also started Amazing Kids Club this spring (after-school autism group). She loves it. She will be going to AKC camp Mon. - Thurs. this summer. The structure is imperative for Kirsten and she is completely excited about going.

Aaron:
starting Kindergarten in the fall in a NI classroom as well. He is so ready for Kindergarten, and I am excited for him. He also still goes to AKC and will go this summer for camp. His excitement right now though is his "job" with Lonnie. He has been going to the golf course with Lonnie on Friday evenings and helping him cut cups. It has done amazing things for his self-esteem. He talks about it all the time.

Dayton and Davydd:
still here with us and we are enjoying every minute of it. I am guessing though that the boys will go home by mid-summer, not sure of course, but sad all the same. :(  The boys are super smart and so fun to spend time with. Davydd will be walking anytime which brings terror to my mind as he gets into SOOOO much trouble already.

Alexa:
became the biggest challenge for the family this year. Her infantile spasms were finally diagnosed, although the cause is still trying to be uncovered for proper treatment. Each week she goes for tests of one sort or another. She is extremely developmentally delayed for an 8-month-old but we love and cherish her all the same. When she may return home is completely up in the air. Hopefully never if you ask me. :(

As I write all this I am inspired to keep up with it as I did in the past. Wish me luck!

Dear Amy,

Well, thanks once again for a lovely visit at your house. Even with all our kiddos and their noise I find it so relaxing. It serves as almost an escape from some of the mundane chores of home. I love all the sharing and venting we do. I'm sometimes amazed at some of the things I learn about you. It's nice to know that even though we've been sisters forever we still have things to learn about each other.

You have strengths I definitely do not have, and they come from burdens of sadness I didn't know you carried. Interesting....very interesting. The moment I wish for your strengths I realize I would not want the burdens that you acquired to attain the strength. But, that is how strength comes. My burdens have been different than yours, not making one better or worse than others, just different. We experienced some of the same sadnesses such as Dad's death & some other things we spoke of, but we each internalized them in our own way. Our age difference had a part to do with that.

I just have to say that I'm sorry I wasn't the sibling that you needed during those times. I don't remember having the relationship with you that I've worked diligently to nurture amongst my own children. I know I have memory issues, but I 100% know that when Dad left the planet....well, so did I. The loss was so great for each of us in our own way and being a teenager I just wanted to escape from all of you. Seeing us as a family meant that part of the family was missing. I clearly remember Mom pleading with me as a teenager saying, "What is so wrong with us that you don't want to spend time with us?" (so sorry for that pain I caused you Mom. :(   There was nothing wrong with any of you. Being absent meant not being present to the absence of others. Understand? Looking back, I'm just so sorry. I hope my attempts at sisterhood now make up for the sister I wasn't then. I love you Amy. You're more than my sister, your a best friend.

Love, Lori

Dear Angelia,

So sorry you couldn't come for dinner tonight. We missed having you. We always miss you even though you don't know it. You and Brent add a special light when you come and visit. We'll be sad if and when you move on to bigger & better places. It's nice to know you are busy making a life for you & your hubby.

I'm so proud of you & of the big dreams you aspire to. Never let them go Leah, never. Don't settle for less than what you were made for. Keep making plans, making adjustments where necessary, and not accepting excuses from yourself or others for anything less than your best. Always give 110% & leave people and places better than you found them. Remember your gifts. You know what they are. Embrace them and know you are a blessing to those who are lucky enough to get "your call". We all love you Leah!

Love, Mom

Dear Josh, Kirsten, Aaron, & Dayton,

You have no idea how it makes me feel to see all of you almost squabble over who gets to help mommy. When it's time to cook each day you each go scrambling for your stools and run over to the counter to help. To be honest, it's a lot harder to do with all of you at one time. This is one of the reasons why each of you has "your day". On that day you each know it's your turn to be my special helper. Some days though you can't help yourselves & you all want to help. How long this will last I don't know, but I want you to know how much I treasure it and each of you.  Love, Mommy

Dear Alexa

Today I had the precious opportunity to do something for you that typically is the almost coveted right of all parents. When our children are sick we want nothing more than to hold them, care and coddle over them, whisper sweet promises of wellness in their tiny ears, and pray that they heal quickly. Last night your father told me I could bring you home to stay the night. He had already sent you home with me another day this week for a few hours, hours which I worshipped needless to say. I thought he was kidding when he said I could take you home again, but this time to sleep over. :)  He then also told me that you were not feeling well. Needless to say, you definitely were not feeling well, and didn't sleep well, but the pleasure was all mine in caring for you when you needed a parent the most. I pray I have the opportunity again. I love you Alexa.   Love, Mommy Lori

Goodbye for now Miss Alexa

Nine weeks....a lot can happen in nine weeks. One thing certainly can & did happen here in that amount of time. This family fell hard for a tiny angel whose presence pervaded every corner of this house. This little spirit, namely Alexa, will have a place in this home as long as there is a breath left in my body. We will miss her forever, every bit of her:

The sounds of her cries

The smiles she brought to every face who looked upon her

The sweet gentleness of her tiny face as she would nuzzle close

The pure delight she showed during her little baths

Her soft lips as they left their little "kisses" on our cheeks

Those eyes, those giant sapphire blue eyes

The drop to the knees in prayer that Kirsten would do at the very sound that she may be leaving

Watching Aaron sweetly kiss her goodbye every morning before school

Josh's rush to soothe her every cry and wipe every tear

The dent she made in Leah, a girl made of steel

The comfort she brought to a grown man's heart

And for me, the very smell of that sweet baby, the scent of an angel, made my life complete even if for only nine weeks


We love you Miss Alexa. May Heavenly Father watch over you & keep you safe until you return. I know someday you will, even if only for a season. I can feel it deep in my heart.