Haircuts

Today Piper and Bella got the first haircut they have had in seven months. They look so much better. 

 

Iced Coffee

Today I strained and put all of my iced coffee in jars - ready to refrigerate and drink tomorrow morning. Last night I put all the coffee and water in a large container to sit for 12 hours for a delicious iced coffee. Making the coffee kind of signifies the beginning of summer for me. I was actually a little late this year - mainly because I could not find my large container that I make the coffee in and since I make approximately 16 quarts at once I need a pretty large container for it. But, we finally found it and I got it all made and now it is just chilling in the refrigerator.  

Funny how all the girls like to help me make it - though they don't get any. You would have thought I was making ice cream. They crowded around till it was actually hard for me to pour and strain all the coffee grounds out. They all just had to help. 

I was going through old pictures today - June of 2016 - the year Piper and Tess arrived. It seems like yesterday, but at the same time so long ago. I look at their pictures and they look so small. I literally can't believe how much they have grown in 4 short years. They look so big now and are growing up way too fast for me. But, I sure have enjoyed these girls. This picture was taken exactly 4 years ago in June. 

Winding Down

We are pretty much done with this school year. We may continue with math all summer and our nature journals, but that is about it. Piper will continue school as she has struggled all year long and we can't afford to stop. But, she will just be working on her alphabet and numbers and phonics. 

Since we are just about finished, we have spent more time on nature studies and art. I have come to really like our nature studies and looking at what the kids have written and drawn in their journals. 

I am ready to be done with school and enjoy some down time this summer. I am hoping to do some short day trips with the kids but not much else.  

Piper started her physical therapy and she thinks it is fun. 

Andrew ended up at the ER this week and had to get 7 stitches in his leg. 

The kids spent over an hour painting and drawing this afternoon. It has rained so much it is hard to get out to play so it has been a good week for art.

Baking is also something we did this week since it was raining so much. Andrew baked some cookies and took them to our neighbors. 

Short Update

I wanted to thank everyone for their prayers for my son, Joey. He was able to start his chemo again last week as his numbers went up fairly quickly. He has done pretty well -- extremely tired and does have bad days, but also has some good days. Please keep him in your prayers. 

Piper is doing well and is getting ready to start physical therapy. This has been a strange and long process, but I am thinking that she will be back to her old self in a few weeks. Right now she is hobbling around, but can go anywhere she wants pretty quickly.

Tess is doing great after her surgery and is ready to start up all her activities -- especially riding a bike. But, she has another week before she is totally released for all sports. 

Bethany has a little over one year left in her clinical trial. Things are going really well and I do believe the medication is helping her. We found out last month that in the first phase she got the placebo. I had actually kind of thought that - not quite sure why, but maybe because I really saw no difference in her health whatsoever. But, she is doing well and we are so happy she was able to get in this trial. I remember when I got the news she was accepted. I was in China picking up Piper and Tess and the doctor wanted Bethany to come in as soon as possible. So, as soon as we were back home it was right over to the hospital to get started. 

Posting a few random pictures from the past week.

In the first two pictures Piper is learning to tie her shoes. She is kind of getting it but still has some trouble. Tess is great about helping her.

Bethany and Andrew found a baby bird in the yard last night as Andrew was cutting grass.

Sophia has gotten a little more social lately - and I mean just a little. But, she does really like sitting on the porch in the rocking chair. Every few minutes one of the kids will go up and play with her or talk to her. 

Andrew brought these flowers to me the other day. They are already dropping petals, but still pretty.

New Cast For Piper

Today Piper went back to Children's Hospital and got a new cast. She gets a new cast every week. After her last cast is off she will start physical therapy, but hopefully for only about 4 weeks. They said probably 6 weeks today but I think she may be done in 4. Once she gets moving I believe she will not take long to get all of her movement back. 

Piper's Cast

Today Piper had a cast put on her leg. The purpose is to give her muscle a chance to rest and relax. She will have the cast removed in a week and a new one put on and then that one will be removed in another week and another cast put on. This will continue for somewhere between three and six weeks. After the last cast is removed she will start physical therapy. 

Piper was great getting the cast on -- probably because they gave her an ipad and let her watch a movie. She never gets an ipad to play on so that was a real treat and it occupied her almost the entire time they were working on her leg. 

Another Machine Gone

Today Bethany's vest machine died. She had just started her nebs and I had just turned on the machine that runs her vest and it ran one minute and cut off. I unplugged it and waited a few minutes and then turned it back on. It ran one minute and then shut off with a code in the window and a message to call for service. So, I called and unfortunately it has to be sent back and a new machine sent to us. That meant hand PT for Bethany today. Since having the vest I have been spoiled and doing PT by hand seemed long and actually made my arm ache. This is our second machine to die on us since she got her vest in 2012. Considering how much she uses it I guess it is to be expected. I decided to check out some of the numbers on her machine before I sent it back and I realized that Bethany has done 2,477.4 hours of vest time on this machine. That is a lot of hours for a kid -- she got this machine in August of 2014 so has had it about 2 years and 7 months. I have no idea how many hours she did on the one before this one but probably a little less. But, the bottom line is that when I look at those numbers it hits me just how much time she spends doing her treatments - a lot. 

Piper is doing ok, but still can't walk or put any weight on that leg. Other than the leg she feels pretty good. If this injury hadn't happened I think she would be up and running around. She is definitely getting pretty bored cause just how long can a kid as hyper as she is be content on the sofa? She has played paper dolls and games and watched Veggie Tales and talked and talked and talked. There was one interesting and good thing that happened while she spent her days on the sofa -- I heard her talking and looked over and she was actually pretending with her paper dolls. Unheard of for her. One doll was telling the other one that she had to go away -- far, far, away. The other doll was begging her to stay. This is the first time I think she has actually played like that on her own. I was very pleasantly surprised. 

Piper's numbers continue to go down and that is good. We continue to give her drink after drink after drink to help. We go back to the lab for another check on Monday - nice to have a small break. 

Bethany's machine with the number of hours she was on it. New machine will be here tomorrow afternoon. 

Where Piper spends her days lately.

Have no idea what Sarah and Caroline are doing. When I asked them, Sarah just said - we are playing a game. I have no idea what game but they spend a lot of time playing whatever it is.

Bella just has to bring me my phone no matter where I am or what I am doing.