Physical Therapy

Jillian had her physical therapy appointment today. The physical therapist was great and Mikayla went because she is considering majoring in physical therapy in college and wanted to see what it was all about.

His assessment of her is this:
*she walks stiff-legged - she does not bend her knees when she walks therefore looking somewhat like Frankenstein
* she has some balance issues which is why she is also very catious when she walks
* she does not run because of these issues
* she favors her right leg which causes her to appear as if she is limping

He had her jumping to get her used to bending her knees and walking on a treadmill to get her to take longer strides and therefore making her bend her knees more when she walks. She also needs to strengthen her legs so that she will stop favoring her right leg and become more confident when she walks. He feels that, yes, she is behind in her gross motor skills, but that with time she will catch up. I, on my instinctual level, knew this, but I wanted to make sure there were no mechanical issues that were causing her to not catch up. It appears that there are none as far as he can tell and he wants to see her again next Tuesday. She had a great time playing with his toys, was very cooperative and was a total ham - she had Mikayla and I cracking up when she decided to display her mad dancing skills (which remind me of Elaine on Seinfield for any Seinfield fans out there).

The cooperation stops there though. Cooperation is not a word that is known at our household these days. In true toddler independence, Jilly has decided that everything is to be done by her - which makes getting anywhere on time impossible - naps are not something she thinks are age appropriate and what is wrong with going to bed at 10pm? And the tears, big. huge. crocodile. tears. Tears that roll down her face at any percieved injustice - which means about every 10 minutes we see these tears. Tears with a nice, piercing, very loud, window shattering cry.

But I would not have it any other way. I, sadly, am going back to work in one more week and I supposed part of me should be happy to be getting away from the craziness at home but.....I am going to miss the chaos. And the big, fat, crocodile tears. And every other annoying three year old thing that makes having Jilly in my life wonderful.

A Wedding

Sorry I have not updated in so long. Not much happening around here. After the wedding we have just been relaxing and not doing much of anything. Russ and Mikayla just returned from a four day soccer tournament in Oregon. Jilly continues to do great....if we could just get her to eat more life would be good.

The wedding was beautiful and worth all of the work we did around the house to see our two greatest friends get married here.

Jillian took her job of flower girl very seriously and did a great job. She loved her little ring-bearer-friend and had a wonderful time playing with him. She stayed up to almost 1am dancing.


This was just a beautiful picture I took of them as they were getting ready to walk down the aisle.


And here is the whole family together.

Surprise

We have been so busy lately getting our house ready for a wedding that we are hosting here this weekend that I have not even looked at the internet. And definately have not felt like posting any updates. But the thoughts continue swirling in my head.

The other day I took Buster (our cocker spaniel) to the groomers. The owner has a grandson who has cancer. I had heard from one of Mikayla's friends who knows the grandson that his treatment did not work and the doctors had given him anywhere from one week to one month to live. She said he had given up hope and was tired of the treatments so had decided to just be home with his family during his final days. When I dropped the dog off I wanted to say something to this grandmother whose grandson was dying, but what do you say? So I said nothing. I read the paper today. I read the obituries because I'm morbid like that. Her grandson died. And I felt really sad. A teenager who did not get to enjoy what is supposed to be some of the best years of a person's life. A life cut way to short.

The morbid part of me sometimes thinks thoughts I don't always like to admit are there in my head. Like there have been times, especially when Jilly was really sick, that I thought about what music to play at her funeral. I don't like those thoughts but I have allowed myself to think them and then move on. I think it is part of the reality I live with that her life might get cut short too. I want to believe that it is a healthy way for me to accept her situation but not to dwell on it. I feel that if I never thought about the reality of her possibly dying young I would be in denial. That if that time comes earlier than I want it to I would be unprepared. Like a parent can every really prepare themselves for the death of their child.

I really am optimistic now, really. Jilly is doing so well that I have a newfound hope that she is going to amaze her doctors and be one of those success stories. But I don't want to let my guard all the way down. I feel that I have to be vigilent even though she is doing so well. I still have to accept the fact that she has a potentially life threatening heart defect that could cut her life short. I don't want to be sucker-punched anymore.

Like the grocery clerk. She was so not expecting the surprise that she got from Jilly the other day. Jilly was sitting in the seat in the cart and the clerk was talking to her. Jilly asked her if she wanted to see her zipper. The clerk looked at me with a question in her eyes "like what zipper is she going to show me?" But I was busy trying to pay and really did not hear what Jilly had said or I might have tried to intervene. There was line of people behind me who were watching this interaction, oohing and aahing over how cute Jilly is. And then all of a sudden Jilly pulls her shirt up over her head, points to her scar and says "that's my zipper". Surprise!

The look on everyone's faces was everything from fear, shock to pity. I just calmly asked Jilly to put her shirt down and went on about my business like nothing was out of the ordinary. The clerk quietly asked me what happened. Because she does not have just one scar down the middle of her chest. She has many across her abdomen and on her sides from chest tubes and other various procedures. And they are all still very red and scary looking to the outsider.

I don't notice them most of the time. But when I looked up from paying for my groceries and saw her shirt up I saw them as someone who has never seen them would see them. And my heart ached for her. She is at that age that she is starting to wonder about these scars all over her chest. How do you explain them to her? I have started talking to her about her broken heart but realize it will be a process over many years to get her to a point where she fully understands her situation. And what will she think? About her special heart? About possible future surgeries? About death?

And that will be a tricky one. I want her to understand the complexity of her CHD but also to apppreciate the gift she has been given. To understand that she has been given time but that the time she has is unknown and filled with many variables. I don't want to never address that aspect of her prognosis with her (the prognosis that doesn't exist) because I feel that if I never address that with her would be to allow her to also live in denial. But to do that without being morbid or pessimistic. To do that without making her fearful of the unknown but to live her life to the fullest with optimism and happiness. I know that these conversations with her are years from now. But these are the thoughts that swirl in my mind. The thoughts of just one parent who is crossing new terrian in my experience with CHD.

Looking for Things

We did end up going to our cabin this past Tuesday. We had a very relaxing and enjoyable time together. Russ did have to come home early because he had to finish his jury duty but we had a nice time together until Wednesday night. Jilly, the girls and I stayed until Thursday afternoon and had fun at the river while it was 110 degrees here.

Jilly loved playing in the water:



And had fun with dad:

And after a long day in the sun she relaxed with the monkeys in the cabin:

And the older girls had fun playing board games and trying to avoid the mosquitos:

Although we had a very relaxing time I am finding it hard to not look for things to be wrong with Jilly. I watched her like a hawk the whole time - checking and re-checking her fingernails and toenails for the blueness to return, looking for blue lips, looking for heavy breathing. Russ even brought the portable pulse-ox with us and measured her O2 levels. They only dropped into the high 80's, her toenails became a faint blue and she seemed a little tired. All totally normal reactions to a change in altitude.

At the river I kept checking her every two minutes. Her legs seemed mottled, her toes looked blue, was that some heavy breathing I just saw, she looks tired (well yeah, it's two hours past her naptime). It seems I can't relax when it comes to her. I seem to be looking for things to be wrong instead of enjoying this new milestone with her. Don't get me wrong, I totally enjoyed our time together and the fact that she finally got to spend a few days at our cabin. And she had fun. If she knew any better, she probably would have told me to mellow out, that she was fine and having a blast.

And then I remind myself that it is only 6 weeks post-surgery. Old habits that have been developed over the past three years die hard. It is going to take time for me to stop worrying. But then again, I have a feeling I will never stop worrying. It's in my nature and this is all new ground I am covering.

PC Appointment

Another successful appointment. Jilly saw her PC today. O2 levels hovering in the mid 90's - good stuff. Over the next two weeks she is being weaned off all of her diuretics - more good stuff. The poor girl pees every 5 minutes! Her PC is very pleased with her progress. She is so amazed at how pink Jilly is. We did address the weight issue and Dr. Hattendorf wants to keep an eye on that too.

She gave us the thumbs up to go into the altitude. She said she does not want Jilly up there for extended periods of time but short trips are ok. Unfortunately Russ got called in for jury duty today. Maybe our trip will be pushed back a few days.

Jilly's walking seems to be more unsteady now. She just seems to be more wobbly on her legs. She has fallen a few times and trips very easily. I also have noticed that she is using walls and chairs and anything else to steady her. Her physical therapy appt. is on the 17th. Hopefully it's just a matter of strengthening her legs. As her PC said to me this morning "Be optimistic!".