How we are doing.

I've been working on a post, but it is long and unfinished. I'll get back to it and post it soon, I hope.

For now, I just want to tell you that we are doing our best. But, honestly, it is a struggle every single day. Harlie is pretty miserable. I just went in to feed her (it is 11:00pm) and even though she is sleeping, she is uncomfortable and tossing and turning. She is itchy from her bed sore healing (which now has a rash around it) and itchy around her trach. Her face grimaces, even in her sleep. And I even gave her Benadryl tonight. It is very hard to see her like this. She is in pain, and there is nothing I can do for her.

Yes, on occasion we see glimpses of her personality. But, they are fleeting moments. For the most part, she's been pretty darn miserable since August 8th - almost three months! I think that is a lot for a girl who just turned eleven years old.

And it is a lot for Tom and I. Last night she said, "I hate my trach." She asks us regularly when can she get the trach out. We have no answer for her. Last night she said, "Maybe before Spring Break?" And her voice is so weak. And it is so much harder to understand her. It takes so much effort for her to talk, and most of the time we have to say, "what?" So she has to say everything multiple times! I miss her cute little voice and her cute little laugh so much it physically hurts.

And the nights or days when we have to suction a lot, or just do a lot for her medically, she will look at me and say, "I'm sorry." I'll tell her it is okay and I don't want her to be sorry. I will take care of her as long as she needs. Frustrated, she'll ask, "What's wrong with me?"

Some days, I don't know how much more my heart can take. It is hard to describe what it feels like to watch your child suffer. And we've had to watch so much over the last eleven years. It is not right. It is not the way it should be at all. And I just want to see her happy and "healthy" again.

For so long I was so hopeful. We had so many surgeries ahead, and they were going to make things better for her in the long run.

But now, that hope has been replaced by fear. I'm fearful that we won't be able to fix her jaw to enable her to get the trach out. I'm fearful that we won't get back to the way things were. I'm fearful she will get so behind academically that she won't believe how smart she is. I'm fearful she won't be able to develop friendships. I'm fearful of the day we have to take her back to the hospital for another surgery. I'm fearful that she won't find happiness again. I'm fearful we will lose her.

Every day is a struggle. And somehow Tom goes to work and focuses on his clients and what they want. I don't know how he does it.  Some days I can't get myself out of the house. 

And Cooper misses his buddy. She doesn't play like she used to. He had a bad day last week. Just misbehaving, not listening, etc. It was over the top for him. So I finally sat him down and with more concern than anger, asked him to please tell me what was going on with him. He started to cry and he told me that he's lonely and he misses Harlie. He said that she always tells him she's too tired. He will go and just sit with her and watch what she's watching just to be with her.

It is hard. Everything is just so freaking hard right now.

This is not sustainable. We have to figure this out. We just can't live like this for an undetermined amount of time. We need to focus on getting Harlie happy again. And once she's happy, we will be happy, too.

Harlie loves to go camping. And our fall camping trip is just two weeks away. This is the most fragile she's ever been when camping. So, we are a bit nervous about it. Tom is working so hard to make this trip safe and fun for her. But we are struggling with a few things. For example, this trip is unplugged, meaning no screens. But, Harlie can't play like she used to.  She lacks energy and mobility right now. So, we are struggling with what to do about that. If watching tv is how she is coping, I hate to just rip that away from her.

Well, it is late and tomorrow is a busy day.  I am going to force myself out of the house to go and get a very overdue mammogram. If that doesn't motivate me, then I don't know what will. Then I am going to go to work and try to pretend that my life isn't as bad as it is. So, I need to get some rest!

Thank you for reading. Thank you for caring about us. We appreciate it more than I could ever say.

xo,
Christy

General Update

So, Harlie's birthday was Monday, the 25th. And Cooper's birthday was Tuesday the 26th. He turned 9.

It was very hard to make Harlie's birthday special this year. For one, she's in pain most of the time. And she can't choose a special breakfast, lunch or dinner. She doesn't eat cake. And we are all kind of just in a miserable place right now.

Anyway, she's been asking to get her ears pierced for a long time. And we wanted to do it over the summer. But then, with her surgery coming up, we thought it would be better to wait till after. So, after all she's been through, we thought that would be a good way to make her birthday special.

I've called this place several times. Over the summer I told them about her small ear. They said they would have to look at it, but didn't suggest that I make an appointment with anyone in particular. At any rate, my ability to plan and coordinate is at an all time low right now. My brain is somewhere else. So, by the time I called recently, they had no appointments available, but said it is first come, first serve. So, in we walked.

They wouldn't do it. They said her small ear probably needs a different kind of jewelry (neometal) because there is no room between her tiny lobe and her neck. And she said that she didn't feel comfortable doing it and that I would have to make an appointment with the owner. Ugh!

I explained to Harlie that she couldn't get it done and we would have to come back later.  She just said, "okay", no tears. It kills me that she handles disappointment so freaking well.

A few days later, while on the phone with this place, an employee told me that the employees working that night questioned whether she could speak for herself. Ugh. Oh, what they don't know about her!!! She's full of words, and thoughts, and feelings! Even though she looks different. Even though she's been through hell. And even though she is having to learn how to talk with no air passing through her vocal cords. It breaks my heart that what people see at first glance is so very different than what's really there.

So, we got back in the car, and we panicked about what to do. We had no back up plan!! How did I mess this up so bad??? This girl, who is so loved, probably wasn't feeling it at all. Her cousins Maggie and Kelly came with us for the big event (flop) so, at least they were making the night more special and fun.

Years ago, we started a tradition of taking them to the toy store on one of their birthdays and letting them pick out their gifts. I don't remember how this started. But when I asked them if they still liked that, they both said yes! So, instead of going on Cooper's birthday, we went then.

Cooper picked out two small gifts. And Harlie picked out a camping Playmobile and two movies. That is all they asked to have. Isn't that crazy?

Don't you love her shirt?
It was a gift from her summer tutor, Ms. Johnson. 

After that, Harlie asked to get ice cream. That is a minor miracle, as she never eats it. Usually she takes one small micro lick, and calls it a day. But she actually ate most of one scoop. I'd give this girl all the ice cream she wanted, too.

Then we went home and let them play a bit.

It was a hard day, in general. Her birthday always brings mixed emotions. I don't want to remember the day she was born, as it was one of the most difficult and painful days of my life. She's come so far, that I usually feel more success and pride than saddness.  But, not this year. We went back so far and lost so much. And she's in pain. She is very limited in what she can do. It changed so fast. And we are all grieving.

Anyway, Cooper's birthday was good for him. But he's always happy.

I love how Rooney is lurking in the background!

Harlie has gotten so many cards! 

This shirt was a gift from my friend Susan P.
Love it!

Last Wednesday, we had a follow up appointment with the wound care nurse practitioner. That went well. Her pressure sore is healing "nicely". And she's gaining weight well. She's now up to 54 pounds, which was her weight at pre-op in August.

Forgot to tell you that we met with her physical therapist and a wheelchair guy more than a week ago. We picked out a new wheelchair for her as she has totally outgrown the one she has.

And we have come to the conclusion that she will most likely not be able to push it herself. That is just too taxing on her heart and lungs. So, we are getting her a smartdrive.
It is an attachment that goes on her wheelchair. It allows her to move the wheelchair without her pushing it. And it keeps the chair from being too heavy for me to put in the car. Most motorized chairs are too big and heavy for our current car situation.

She will wear a bracelet that connects via Bluetooth and when she taps her wrist twice, the wheelchair will go. When it is up to the speed she wants, she will tap her wrist once and it will lock in place. Then when she wants to stop, she taps it twice again and it will stop.

It is pretty exciting to think about giving her that independence. I don't know when we will have it, hopefully by Christmas?

She started homebound school last Thursday. Now that she's gotten a few sessions in, I think I can already see a small difference in her spirit. She definitely misses school. Last week I had to take her with me to get Cooper from school and take him to swim practice. I heard a noise from the backseat and looked and saw she was crying. I asked her what was wrong and she looked away and said "nothing." I asked her if seeing her school made her sad and she said yes. She also asks me, "When am I going to be my normal self?" My heart breaks for her so many times a day.

I've had a hard time writing because I just don't have much good to say. Life is really hard right now. And I constantly worry about how she is now, and how she's going to be in the future.

Management of her trach has been very difficult. She plugs every single day, multiple times a day. That means that secretions get dry and sticky and fill the trach tube, reducing her airflow.  I have been trying to figure out why that's happening. Even at night when she's on heated humidity. Its stressful.

We have been giving her a calorie powder in all of her feedings. I'm thinking this is drying her out. I've added more water to her schedule and I haven't seen a difference. Today I am going to have to reduce the calorie powder and see if that changes things.

I'm back to being an amateur medical sleuth, looking at everything as a potential clue and trying to figure things out so I can make things better. It is exhausting on my brain.

Well, today we try to pierce her ears again. We have an appointment this time. I sent the owner pictures of her ears to help her figure out what she wants to do. Should've done that months ago. But those are the things my brain just can't do right now.

Thanks for reading. Thanks for all your continued support. Thanks for your love and patience with thank yous that I haven't been able to say to you individually.

Much love,
Christy xoxo