Let me preempt this by saying I am SO SORRY for not updating you on how the surgery went and I PROMISE to write a (likely rather long) post about that VERY SOON. However, today I have a different thought to share with you.
We were walking through a store yesterday and I heard a MOM say to her daughter "I like all her dalmatian spots" The daughter didn't understand and made some kind of comment (I didn't really hear) and the mom said again (with a smile and in a very kind tone, though not to us as it was a simple passing in a store aisle) "no see her dalmatian spots they are so pretty" and then we kept walking and took our crew up the escalator. I mentioned this overheard conversation to my hubby who was walking ahead of me (I was going toddler speed) and hadn't heard it. The Bug didn't know whether it was nice or mean but I told her that was probably one of the nicest ways anyone has ever reacted to her. We are so used to hearing the child ask the parent "mom, what's on her?" and the mom brushing it off, it was refreshing to have a parent think Bug was beautiful without even approaching. Happy sigh =)
Sunday 13 November 2011
Sunday 8 May 2011
An End in Sight
Okay, so surgery is scheduled for May 19,2011. And emotionally, the Bug is DONE. She feels like she has no friends because she can not physically do the activities (monkey bars and balance beams) that they are all doing during recess. One friend chose not to invite Bug to her birthday party this weekend which made her feel even more like an outcast. As an adult, I know that she will be fine. Her friends still like her.... but they are 6 and at 6 (or 7) it is hard to feel empathy for a classmate. It's not easy to explain this to a 6 year old.
She had a saline fill 4 days ago.... and we had to wait for an hour in the room (our doc was on call so got busy). She did great playing and waiting for about 40 minutes. We had to wait an hour. By the time the doc came in she had been melting down for 20 minutes. Screaming that she was going home! Not having a fill! Broke my heart =( Good thing we brought daddy... he sat up on the table and she laid on his lap so the doc could insert another 19cc (ml) of fluid. I started a list to see where we are at... my amazing 6 year old has 224 cc of fluid in her tiny little shoulder. That's actually alot. And we noticed a couple weeks ago that the expander has turned. Weird, right? It is a rectangle, with rounded corners and it was longest from her neck to her shoulder and then it turned so the long part points from her chest to the top of her shoulder, diagonally. I think it was her body's way of still allowing natural movement of her arm.
So, we go for one more fill this week and then is surgery. We'll see how many melt-downs we get between now and then... in the meantime, here is a pic of this last fill (oh, and she's had a haircut too...) =)
She had a saline fill 4 days ago.... and we had to wait for an hour in the room (our doc was on call so got busy). She did great playing and waiting for about 40 minutes. We had to wait an hour. By the time the doc came in she had been melting down for 20 minutes. Screaming that she was going home! Not having a fill! Broke my heart =( Good thing we brought daddy... he sat up on the table and she laid on his lap so the doc could insert another 19cc (ml) of fluid. I started a list to see where we are at... my amazing 6 year old has 224 cc of fluid in her tiny little shoulder. That's actually alot. And we noticed a couple weeks ago that the expander has turned. Weird, right? It is a rectangle, with rounded corners and it was longest from her neck to her shoulder and then it turned so the long part points from her chest to the top of her shoulder, diagonally. I think it was her body's way of still allowing natural movement of her arm.
So, we go for one more fill this week and then is surgery. We'll see how many melt-downs we get between now and then... in the meantime, here is a pic of this last fill (oh, and she's had a haircut too...) =)
Sunday 6 March 2011
Fill Update and some Pictures!
Okay, I try at this, I really do, but with so much going on with 3 kids sometimes my updates are sparse and thus, long. Sorry about that.
I made a mistake on my last post, I asked the surgeon again and when the tissue expander was placed in Bug's shoulder they filled it with 60cc (same as ml) of fluid. At her first 'fill' he added 30cc of fluid. At the second 'fill' he added 25cc of fluid (she was better at speaking up to say it was getting to tight so he sucked a bit back out). This brings her 'balloon' to a total of 115cc of fluid. For now. Until Wednesday. We go every 2 weeks for more fluid. This particular tissue expander is a 140ml expander but the surgeon has said he will 'over expand', but I'm not sure how that works, though I trust it will be safe, if he's willing to do it and I have heard that many surgeons in this field do this. We were originally told the expander would be in for 3 months plus but at the rate we are going I'm beginning to wonder. Anyway, here are some pictures of the progress.
This was after the 2nd 'fill', with the expander now at 115ml.
Right after surgery.
PreSurgery, you can see the dark area they were biopsying and that is the same area we hope to remove with the expanded tissue.
I made a mistake on my last post, I asked the surgeon again and when the tissue expander was placed in Bug's shoulder they filled it with 60cc (same as ml) of fluid. At her first 'fill' he added 30cc of fluid. At the second 'fill' he added 25cc of fluid (she was better at speaking up to say it was getting to tight so he sucked a bit back out). This brings her 'balloon' to a total of 115cc of fluid. For now. Until Wednesday. We go every 2 weeks for more fluid. This particular tissue expander is a 140ml expander but the surgeon has said he will 'over expand', but I'm not sure how that works, though I trust it will be safe, if he's willing to do it and I have heard that many surgeons in this field do this. We were originally told the expander would be in for 3 months plus but at the rate we are going I'm beginning to wonder. Anyway, here are some pictures of the progress.
This was after the 2nd 'fill', with the expander now at 115ml.
Right after surgery.
PreSurgery, you can see the dark area they were biopsying and that is the same area we hope to remove with the expanded tissue.
Wednesday 9 February 2011
Expansion started!
I'm sorry I have been slow getting surgery photos posted. I will do that later today. Today is the first fill of the expander. The insertion surgery went better than planned, done in 1.5 hours instead of the scheduled 2.5! We could really feel your prayers! Bug had some major bruising right on where the expander is immediately after surgery. Most of it faded but almost 3 weeks later there is still some bruising.... I will ask the surgeon about it today.
Today Bug will get some more saline added to her expander. the surgeon put 40ml in to begin with and we will slowly add to that every couple of weeks. I will post surgery pictures and a fill report later today when I'm back from the hospital. And back from getting Goober from school. The busy life a mom of 3 I tell ya!
Today Bug will get some more saline added to her expander. the surgeon put 40ml in to begin with and we will slowly add to that every couple of weeks. I will post surgery pictures and a fill report later today when I'm back from the hospital. And back from getting Goober from school. The busy life a mom of 3 I tell ya!
Wednesday 19 January 2011
The Pre-Op Post
Well, there is a LOT on my mind this week. Our Goober turned 4 on Monday which meant 2 parties to plan. We have a 2nd birthday party to go to tonight that I am still making the gifts for and then I have to pack for the hospital. The hospital. Okay, if you've been following along, the Bug is having surgery on her Nevus TOMORROW!!! YIKES! Yes, this is planned surgery but it's still scary. I've been thinking for 3 days what I wanted to say here and so many things came to me. Is my faith strong enough? Can I truly believe without any doubt that God loves us and will protect our baby? Yes. And no. Not that I don't believe it, but unfortunately, I'm still human and humans worry. Humans have a hard time trusting totally something they can't see or touch. I love God. I know He is there. But I have to trust the surgeon. Because we are Christians, does that mean that none of the possible complications will arise? Nope. God sometimes allows things to go wrong. We won't always know why, but he does. I just have to trust that HE 'has our backs' as it were. He gave this amazing young lady to us that just happens to have a REALLY big birthmark that just happens to have some issues in it. But we can handle it. Right? I have asked for prayers at the Bugs school (it's a christian private school), I have asked for prayers at church. I have to trust that enough people will pray and that God will listen and that all will be well. And that if all is not well, more people will pray and God will grant us the peace and strength to deal with that too. Oy. If anything goes wrong I'm not sure I could live with myself for convincing my little Bug that she should do this in the first place.
Now for the surgery details. Her surgery is taking place in a Children's Hospital. With nurses who treat her like she knows what is going on but try to make things as non-scary as possible. I don't know what time yet. I call later today to find that out. When we know the time of surgery all the rest of this stuff will make more sense. She will have to stop eating at midnight tonight. We figure on letting her stay up late so she can have a late snack. She can then have clear fluids up until 4 hours before surgery. Which might mean apple juice for breakfast =) We have to be at the hospital 2 hours before the surgery time. She needs a bath ahead of time and I'm supposed to take her through a video tour on the website but have not had time to sit still the last few weeks! The OR is booked for 2.5 hours for her.... so they are expecting to take a while. They have said it is planned for her to be in hospital 24hours after surgery and a parent can stay overnight with her. Umm, right, and if it weren't allowed I would anyway!
Okay, I think I'm starting to make less sense. Feel free to ask questions.... =)
Now for the surgery details. Her surgery is taking place in a Children's Hospital. With nurses who treat her like she knows what is going on but try to make things as non-scary as possible. I don't know what time yet. I call later today to find that out. When we know the time of surgery all the rest of this stuff will make more sense. She will have to stop eating at midnight tonight. We figure on letting her stay up late so she can have a late snack. She can then have clear fluids up until 4 hours before surgery. Which might mean apple juice for breakfast =) We have to be at the hospital 2 hours before the surgery time. She needs a bath ahead of time and I'm supposed to take her through a video tour on the website but have not had time to sit still the last few weeks! The OR is booked for 2.5 hours for her.... so they are expecting to take a while. They have said it is planned for her to be in hospital 24hours after surgery and a parent can stay overnight with her. Umm, right, and if it weren't allowed I would anyway!
Okay, I think I'm starting to make less sense. Feel free to ask questions.... =)
Saturday 1 January 2011
A New Year....
Well, it's New Years Day. Sure doesn't feel any different. Turned the page on the calendar before going to bed last night. Took down the Christmas Decorations while watching lame NYE music video shows on time delay..... woke up late to sounds of "mooooom, were hungry!". Did anything change? I don't think so.
So, everyone is supposed to make at least one New Years resolution, right? I think this year I'm going to resolve not to make a resolution. How's that grab ya universe??? Huh? I mean, who is actually keeping us accountable to what we say anyways? Ourselves? I can convince myself not to care pretty easily....
I thought of all the things I WISH I could achieve this year.... but I know myself well enough to know right now it ain't gonna happen, so why bother? But, in case you are looking for inspiration on your own resolution, here is my list of things I would resolve to do if I knew for certain they would be accomplished and with little to no extra effort by me:
~not to yell at my kids. ever. (for those of you that have not had the, er, pleasure of meeting me or my kids, this would require the surgical removal of my voicebox)
~to cook a gourmet, healthy, allergy free, kid appealing meal and have it on the dinner table by 5pm 7 days a week. (this would require a small army of personal chefs and a much larger kitchen)
~not to worry about the surgery the Bug is going through for the next 3-6 months. ya. right. I AM a parent afterall.
~to be a better friend. I might actually try to work on that one....
~to watch TV less and sew more
~to get my Snugs website up and running and actually try to prosper at a home business.
~to spend some time ALONE with my HUSBAND.... this would be easier done if we had family or friends to help us, but we are fairly limited in our options =(
~not to complain about the weather or our house. both make me miserable but can't be changed reasonably.
~RELY on GOD MORE and figure things out for MYSELF LESS.
I'm sure that list could be longer, but I've got kids to chase and a house to clean and laundry to do and....
Have good 2011 everyone, whatever it brings. Don't let fear stop you.... you'll regret it later =)
So, everyone is supposed to make at least one New Years resolution, right? I think this year I'm going to resolve not to make a resolution. How's that grab ya universe??? Huh? I mean, who is actually keeping us accountable to what we say anyways? Ourselves? I can convince myself not to care pretty easily....
I thought of all the things I WISH I could achieve this year.... but I know myself well enough to know right now it ain't gonna happen, so why bother? But, in case you are looking for inspiration on your own resolution, here is my list of things I would resolve to do if I knew for certain they would be accomplished and with little to no extra effort by me:
~not to yell at my kids. ever. (for those of you that have not had the, er, pleasure of meeting me or my kids, this would require the surgical removal of my voicebox)
~to cook a gourmet, healthy, allergy free, kid appealing meal and have it on the dinner table by 5pm 7 days a week. (this would require a small army of personal chefs and a much larger kitchen)
~not to worry about the surgery the Bug is going through for the next 3-6 months. ya. right. I AM a parent afterall.
~to be a better friend. I might actually try to work on that one....
~to watch TV less and sew more
~to get my Snugs website up and running and actually try to prosper at a home business.
~to spend some time ALONE with my HUSBAND.... this would be easier done if we had family or friends to help us, but we are fairly limited in our options =(
~not to complain about the weather or our house. both make me miserable but can't be changed reasonably.
~RELY on GOD MORE and figure things out for MYSELF LESS.
I'm sure that list could be longer, but I've got kids to chase and a house to clean and laundry to do and....
Have good 2011 everyone, whatever it brings. Don't let fear stop you.... you'll regret it later =)
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