We went to Avery’s low vision appointment. They weren’t there to assess her vision, just try different magnifiers and such.
I got glasses when I was in the 6th grade. I remember the first time I went outside with them on. I could actually see the leaves on the trees. It was amazing. I think Avery had a similar experience. She kept saying “wow” and looking at different things.
They let her borrow four different magnifiers. One is a pair of glasses. I asked them how they were better than the one’s you buy in like say…Wal-Mart? They said these where bowed to see with both eyes. She called them prism. I don’t know that I am convinced, I think I will take her and have her try on the ones that you can get cheap and see if she can tell which is better.
She also got a monocular. Like binoculars, but only one. She can adjust it and use it to see far away. I had her use it on the way home. She was good and slug-a-bug before. But now…watch out. She can actually see!
The last two are to hold over papers. She tried these, but prefers the glasses. Partly because when she is working on homework, she can’t see the entire part of the problem with the hand held magnifiers. And she used the glasses to play piano. She said it made a big difference.
Luckily these items aren’t going to break the bank. These are all under $100 each. We have some money from your generous donations to cover it. So thanks again to all who have contributed.
We go back in two weeks to return the items and order what she needs. I am also going to ask her Ophthalmologist when we go on May 3rd about getting bi-focals instead. Weird to think that my 9 year old will need them, but it might be a good option. We will see! (get the pun…)
I was on pinterest. That site sucks me in for hours. But I do find some great ideas. Most of which I will never try.
like this one…
from the yummy life blog.
I usually an not a fan of hiding things in your kids food. I think that they should know that there are veges and good things in their food. That way when you go out and they see cauliflower, they know they have tried it and will eat it.
It doesn’t always work.
Even with my hubby. In fact, he for YEARS didn’t know there was sour cream in sour cream enchiladas. Once he found out, he now won’t eat them. But I tell him I leave it out…he eats it. As long as he doesn’t SEE it go it…he’s fine.
I am desperately trying to get Avery to eat better. Especially in the mornings. I know she feel crumby, but I am trying….usually failing, but trying none the less.
So I decided to try the oatmeal. Even though she hates regular oatmeal.
OH, AND she got the thumbs up to add chocolate back in. Even on her restricted days. YAY!!
I made the chocolate and banana version. It was really good! I liked it and my younger two did also. (Probably the chocolate). Right now Avery can’t have bananas, but I let her have a bit. She didn’t like the chew of the oatmeal. And yes, I even added in the chia…DO NOT TELL HER!
Then I tried her smoothie version. I used strawberries, cherry juice, aloe juice (tart like lime juice) the oatmeal and chia ground up. Oh, and a bit of milk (I would use almond milk but Avery also has a tree nut allergy). She really liked it. YAY! When you let it sit overnight the chia just get gel like and you don’t see them. Grounding up the oatmeal and chia make it so she can’t see it.
It was a bit tart. I am going to try adding in cooked sweet potatoes. A idea I got from my friend Jami. Just until Avery can have bananas (or maybe after too). We will see how she likes that one. I will let you know.
I am also going to ground up a cup or two of the oats and chia seeds and put in a baggie. That way I can just mix everything in the jar, shake and put in the fridge the night before. Quick and easy.
No cook oatmeal smoothie
1/4 cup oats (uncooked)
1 1/2 tsp chia seeds
put in blender and grind to powder. Then add:
1 TBSP tart cherry juice
3 TBSP aloe juice
1/4 cup milk
1/2 cup strawberries
Blend till smooth. Then put in pint mason jar overnight.
For those of you who have teenagers, prom season is in FULL swing. I read this post on facebook about a girl that was told to leave her prom in Provo, Utah for being immodest. After further investigation, there are guidelines that the school and many others in Utah have regarding the dress standards for prom and got the story here from channel 4 news.
If you seen the photo, her’s didn’t have straps and if it were my daughter, it looks short too. And it paled in comparison to this amazing dress pic by my friend Melissa, a truly gifted photographer.
While all the girls look beautiful, I was taken by the peach dress on the left. It is completely modest and stunning at the same time. She said she got it from Saks. I can’t image the hours they spent finding a dress that flattered her and covered her in the right places. But she did. It is inspiring to know it CAN be done. It won’t be too long before my three girls will be needing prom dresses. My girls are suppose to be taller than me, and I already have a tough time finding dresses long enough. So when it comes to proms, I have a feeling I am going to be spending a lot of time hovered over my Bernina (sewing machine for those who don’t know). Actually, it’s the main reason I have been honing my sewing skills.
I wanted to make a dress that stretched my skills further than they had before in anticipation of those upcoming years. I found this great dress in Polyvore.
The dress is from a company in the UK. And when I measured, it was WAY to short me anyway. So instead of ordering it, I decided to make it!
I took a pattern that I already had from this dress. Then I made the alterations and ………..drum roll………….
I choose to do a 3/4 length sleeve. Mostly because I live where the temp. hardly reaches the 80’s. I am always freezing. I didn’t want to wear a sweater and cover up the ruffle and bow.
Not too bad if I do say so myself. I may not be able to replicate the gorgeous peach gown yet, but I am working on it!
We started Avery’s second round of chemo last Wed. It was the three days of round the clock pills. The last day is the one with the meds that really kicked her butte last time. She stayed home yesterday and today just taking it easy. But it isn’t nearly like last time. That’s a good sign that my the next round or so she will bounce back even quicker. YAY! And that her body is tolerating the meds. YAY again!
We also meet with a Low Vision Specialist this week. What is a low vision specialist pray tell? It is usually an optometrist, but instead of just focusing on what prescription glasses you need, they look at how you function with your low vision. They do a test on mobility and orientation. How you get around and how you find your way in new situations. They also look at different types of technical options to see if any would help. Things like magnifiers. I am sure she needs at least something. And of course non of the technical things are covered by insurance. And these are VERY expensive items. Most in the $1000-$2500 range. The doctor will prescribe what she needs. The school will get what she needs for school. Then it is up to us to get what she needs at home.
They also increased her dose of steroid. With her sight worsening it’s hard to know if it’s the damage already done to the nerve, or the chemo hasn’t worked enough yet. So they bumped up her dose just incase it’s the latter.
I have this “test” I do with her to see how much vision she has. It’s scary. Every time I do it, it’s worse. I would really like to STOP doing this test. It literally makes me almost have an anxiety attack. But, we need to see if there is any improvement. There never is. So I just try not to cry and be thankful, at least at this point, that she has any left. Even if at 6 feet away all she can see is from the bridge of my nose to my upper lip. (yep, try not to cry).
This trip is going to be different than any we have taken. My kids are use to traveling. From the time they were very young, I have taken them on 6 hour trips, mostly from Las Vegas to Utah County.
But that was not with a kid with medical issues. This one is a bit longer travel time too.
Since we are leaving so soon on our Make-a-wish trip they weren’t able to get us direct flights. SO…..
The flight out goes through Washington D.C. The trip home goes through Houston, TX. Our travel time each way is over 8 hours. I think the other kids I can keep occupied, but Hallie, my little five year old bopper, is going to be a challenge to keep happy.
They also no longer serve meals on planes. I would love some food ideas too. Obviously sandwiches and snacks. We can’t bring drinks, so we will have to buy these.
We are SUPER excited!
Ok, so I am a CRAZY mom, who is totally going overboard for this trip.
If you ever get lucky/unlucky enough to go for a Make-a-wish, I will support your insanity.
All the way.
We have our dates, May 13-19th. I don’t have flight info yet, so it might change, but it sounded pretty firm.
We can’t stay at the Make a wish resort. It’s booked out for months. But we will be in a Disney Hotel, don’t know which one yet. Couldn’t really care less.
We do get to participate in all the things that go on at the Make a wish resort. Like the food and the swimming and the rides.
We get a three day hopper pass for Disneyworld and their parks, a two day pass for Universal Studios, and one day for SeaWorld.
SeaWorld wasn’t even something we considered. Payton will love it. She loves animals.
I am working on a PLAN. So that we can see everything we want to in the time allowed.
I did already book her surf lessons. They were an added expense. They give us some extra funds to cover things like this….and food. You could spend hundreds of dollars on food there!
We are all SUPER excited! I even asked Chris about a character lunch. At first he said “no”, but then he realized the girls would LOVE it…he said “whatever”. Which means, “I don’t really want to go,but if it makes my girls happy, I will.” Good dad.
We met with the ladies from our Make-a-wish a few days ago. They are rushing us through so that we can go before/if she looses more sight.
First, Avery sight is still getting worse. I know! I thought we were winning that battle, but I guess not. She has so little, and yes, that night I cried. I know that there are plenty of people that live a full life without sight. I just didn’t expect her to be one of them. The nurse, Corey, said the fact that she has any left after the last few weeks is hopeful. I am hopeful.
Second, I looked at a few blogs of families that got to go to Disneyworld for their wishes. Like this sweet family that is a friend of my friend Kathy’s. And this family too. It makes me SUPER excited.
Then Kathy mentioned that if the girls are dressed up like princesses, all the Disney staff call them “your highness” and bow. I TOTALLY forgot about this. We actually did this when we went to Disneyland when the girls were little.
Here is pic of Avery in Jedi training…in her princess dress. Before we knew about the tumor.
Florida will be too hot for full dresses. So my sister and Kathy have sent a few ideas of dresses and outfits for the trip.
I SO want to make this the most amazing trip for all my kids. I have a few ideas of things I can be working on (sewing, yay!) But I need some help. I don’t think I can do five outfits before we leave in a month or so. If you know of anyone that does pettiskirts, PLEASE let me know. Especially if they would like to a Make-a-wish kid and her sisters!
One of the other challenges this adds is her size. I don’t know if you know what steroids does to you…but it’s not fun. She is retaining about 8-10 lbs of water. It’s about 10-12% of her body weight. Imagine that. She is a size 14-16 right now. Most of this stuff, even I could buy it, doesn’t come in those sizes. So I am begging for some help to make this happen.
Hope you have a bright sunny weekend!!!
I went to an ANWA meeting last night. It’s an LDS women’s writer group. I read my first chapter to them and when one of the women (who is published) said, “yep, you are a writer.” I can’t tell you how thrilling that was to hear!
We use labels to help define who we are. I felt I was a writer, but when someone else, who is published, says it. It helps confirm and motivate.
My sister, Amy told me about ANWA when I told her I was writing a book. Now that I have had some help in starting the editing of the book, I felt like I could start to get some real critique of the book too. Some fresh eyes.
My friend Rebecca belongs to the ANWA chapter here, so last night I tagged along with her. It was AMAZING! They had great feedback and I learned a ton. I have a list of books that I would like to read now, including some of the groups work.
I know I won’t be able to attend every month with Avery’s treatment, but I will definately join and use them to better my writing and maybe get published…one day.
Sometimes in this journey with Avery I realize that I have been so focused on one thing that other things have gone unaddressed. Like, my sewing station. I am NOT even going to post a pic. It’s horrendous. Trust me.
One of the things that until four weeks into her chemo treatments, I didn’t realize is hey, she is practically blind. Actually I found out that she is legally blind. I probably should be doing something to help her with that. But how?
Another way that Children’s is AMAZING. I got in touch with one of their education specialist. She called a lady that is the rep. in our area for the Center for the Blind. She called me and asked a lot of questions, like, “is she taking brail?” “Um…..no. Should she be taking brail?”, was my confounded response. So she (Janet) is going to come visit us on Wed. And tell me all about living with low vision. And the reality is, we could do all this, the steroids, the chemo, and she could end up with no vision. We need to be prepared for that. (As if you can prepare for something like that). But there are also things that she could use help with now even with her vision as it is.
This is so uncharted territory for us. We don’t even know, what we don’t know. Kind of like when you have your first baby. You really think you know, but really, you have no idea. Yep, it feels like the blind leading the blind. Hopefully Janet can open my eyes a bit to what we can do to help her.
So we had a great spring break. Most of it was fun, sun and relaxing. My friend Jen gave a party for Avery’s birthday. She made French bread pizza and this DARLING cake.
Sorry for the bright light in the background. I’m obviously not use to sunlight!
Those are a few of Avery’s darling friends from Vegas. Savannah, Camryn, Heather and my Hallie. We took them to “Mirror, Mirror”. It was a perfect movie for their age group. And thus the Snow White themed cake. Jen did a darling craft with handheld mirrors from the dollar store. She had glue, feathers, glitter, beads and puffy paint that they decorated their mirrors with. A bit of a mess, but the kids loved it!
We also had a great time with family. My niece Katelyn, who got married last summer (and we missed her wedding) was there. My sis-in-law (Katelyn’s mom) Lisa is an amazing photographer and got these pics. I LOVE them!!
Terran was tickling Avery and she was laughing so hard. Those are some great memories.
And Lisa’s youngest daughter Taylor is like a sister to my oldest Nathan. They are 6 months apart and when they were young, people thought they were twins. Here is a pic when they were little.
And here is now. And they get along as if they haven’t spent a day apart.
Now for the not so great memories.
Avery puked. An entire Cafe Rio salad. And guess who got to clean it up? It has cured our cravings…at least for a long time for Cafe Rio. For most of us the flu sucks. For Avery, it means it sucks a lot more. If she has a fever over 101 degrees she is to be RUSHED to the hospital. So two hours after puking her guts out, we went to the hospital.
I learned a few things. Number one, I LOVE Seattle Children’s Hospital (not that I ever didn’t love them or their staff). They are awesome. Number two, Las Vegas has a children’s hospital. But I didn’t find out until hours after going to the ER of a regular hospital. When they informed me that her platelets were low, but they couldn’t do the infusion. it would have to be done at the children’s hospital across town. Of course.
But she did get to use the cute new blanket her Aunt Natalie made for her.
And she got a cute balloon, and some vitamin D as we were leaving.
This was on Thursday. Our plane was leaving Friday evening. We didn’t know if we would make it. But we did. Once home they rest of us except my hubby Chris all got the flu. But I have some great tan lines and it is a great diet after a trip. One way to get off the extra pounds!