No good, very bad week.

We got the bad news that we’re looking at Laelia being a paraplegic who doesn’t have any upper body to work walkers or wheelchairs. Hope is dim. We’ve been to a doctor or therapist every day this week. Going back often because of  my baby’s  chronic pain. She’s in the worst pain so far. She woke up every 15 minutes last night screaming. Sometimes it was only ten minutes. Sometimes five.  Charley would  pick her up  and she would fall back unconscious in his arms since she was exhausted. She screams when picked up, put down,  held, breast fed, sat up or really moved at all whatsoever. With a scream  that is short and furious like a you-just-broke-my-leg scream.  

They took her casts off and put painful braces on her feet that we all hate. They didn’t cast the legs straight. We were told she wouldn’t walk. Ever. So why put the legs straight. She has huge sores over the Achilles heel which turned out to be her heel bone! Her feet look really bad.  She screams. She can’t sleep. I’ve been told everything by doctors from, “She just wants you to pick her up,” to “We would give you those x-rays you need, but we don’t have time, plus it could give your baby cancer,” to “Just give it a week.”  

And I can’t care for her since I’m flat on my back with my second bout of mastitis! But I’m still having to drag myself to doctor’s appointments (except for yesterday when I got worse) just to be told that I need to give the evil orthopedic shoes a week to drain all life out of my baby before we’ll really know if they are actually evil or not. To get the shoes I had an apointment at 12:45 but they had lunch from 12-1 (oops) and I was locked out of the building. So I sat there with a fever, dizziness and body aches (that I didn’t know where the makings of round two mastitis) while  crying my eyes out  on the floor in front of the door. Then I went in to  baby’s most painful appointment yet and followed that up with physical therapy AND occupational therapy with some splint work. She actually fell asleep during  her splint work  (and for those of you who have come with me to OT, you know how exhausted from screaming she must have been). This was followed by two days of misery.

I can’t begin to describe the depression we’ve felt this week. Charley and I have just held each other and  little Laeliekins  as she’s cried. We’ve cried a lot. The last time Charley and I cried this much was at the hospital when Mom’s heart didn’t start again after the car accident. I remember he held me outside the hospital after being with my family. I was under his chin and I  felt burning hot tears crash down on my head. Charley didn’t feel the grief in that instance like he does now. I’ve seen him more angry and more sad than any other time in our eight year relationship.

It’s becoming more clear that my little girl will have a hard life. Just imagine how many times you touch your face a day. How many times you get up, walk, hurry when you’re late, go to the bathroom–how you get ready in the morning. That’s all a miracle.

I think it was the combination of some pretty harsh truths said bluntly by doctors  along with  sickness and tiredness and Laelie being in such bad pain that has brought us so low. I was taking  baby down the elevator after one doctor’s appointment when the thing started to  rattle around the forth floor. I was hoping  the thing would just fall and end all this.  

We’re doing a bit better now. We’re dealing with having a child with no working arms or legs and just leaving any unknown miracles to the future. We’re living day by day. I’m feeling better. After realizing what was happening to me physically we already knew what medicines to take and called my doctor immediately with the name of the antibiotic and Charley picked it up around 1am. Then Charley rubbed out my aching body and took care of the baby. He took  time off work  (without having the sick time or  vacation to cover it) and took  her to all her appointments the next day too.  He’s the best husband in the world. And he’s mine ALL MINE!!!

I can’t believe it’s Thursday. Sunday night I was worried about casting Laelie Bug’s legs straight the next day. Then after that didn’t happen AND x-rays we were promised didn’t happen AND we weren’t told very much AND we were only given 30 seconds of time and told “see you next month,” well, it’s not what I expected. I was looking forward to more options and I got less. I was looking forward to a great outcome of surgery and I was disappointment.  She’ll be in these braces for three months and then just at night for the next four years. Then we’ll reconsider some things. Oh and Charley demanded some x-rays and we finally got them. He also got a sit down to discuss Laelie’s treatment and that’s when we discovered a lot of things we had no idea before. We didn’t know how bad it was. I think people didn’t want to break the news to us then. Maybe there was some hope  but it  didn’t work out. Whatever the reason we were not communicated to, we know a lot more now. And it’s bleak.

Her feet don’t look good. I hate that. Some toe nails were broken off/bent at the base of the nail from all the torture sessions. Her heels don’t touch the bottom of the shoes and the foot is red and cut and warped. The shoes are cute, but I hate saying that because they’re evil. Cute and evil. Like Hello Kitty. Only for real, Emily. :)

I think I would be doing a lot worse without the thoughts and prayers of friends and family. I felt them at my worst. I was lying in bed trying, unsuccessfully, to feed my screaming baby with her  braces  (that have a bar connecting them)  propped up with a pillow, and the only good thought in my head was that there were people out there thinking of me and praying for me. Who knows, maybe it could have been worse.

I know we put word out that we needed help too late at night for anyone to respond (under the “Emergency” post), but it worked out and Charley’s boss is really cool even when he’s out of vacation time.  We’ve been lucky and blessed in so many ways. Even when things are terrible, I still have the best husband and daughter in the world. Plus a loving family who lives too far away and a loving  Dad who has excellent taste as shown by his choice of wife, and the two of them love my baby despite everything and make wonderful grandparents.

The nurse who refused to change my baby’s diapers  after she was born stating “I won’t  touch that!”  and the lady who hit my daughter in the face with her coat and  the selfish twosome who can’t see past their own noses and the kids who call my baby ugly have been hard. But really when I think of it, there are ten nice people in our lives for every one bad person. Maybe twenty. And for all the government *won’t* do for us, there is a lot of good we have for being  under this government  as opposed to a third world country.  

Wow, being optomistic? Me? What is the world coming to?  But seriously, thank you all for being so great. Thanks for thinking of us. Forgive  my rantings during the  worst time of my life.  I write all this to get it out of my system, but also so you know how to pray for us. It means a lot.  

2 Responses to “No good, very bad week.”

  1. Kristin Hetrick says:

    We are praying for you. We wish we could be doing something to help you. Will you please email me? I’d like to forward you my phone number. I want to see if I can help you navigate SSI and IHSS. We too were turned down, but some advice and persistence got us what we needed, I just thought I might pass it along!

    Charley was right on with demanding the x-rays, you guys are her parents PAYING those doctor/therapist/radiologist types to do what YOU need, they should be respecting you, your feelings and the health of your child. When I’ve had a specialist who has blown me off, I’ve fired him and found another. As parents we may not be able to fix the problem but we can sure as heck do our best to find someone to solve it better!

    Hope to hear from you soon,
    Kristin

  2. Frances O. says:

    Dear Alexis and Charley,
    As I pray for my bi-polar granddaughter with her heart-breaking problems, I am praying for your precious daughter. I understand your questions to God of “Why?”, and I am praying that God will give you His peace even though you may never understand it until we are together with Him. I have shared about Laelia with our Sunday School class too and they are praying. (Some in this class were in the class with your Mom and prayed for your family when she was taken from you) You have lots of grandmas that are praying for you!
    God bless, Frances Owen

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