An Easy Read

Hi there!

I just wanted to let everyone know how we are doing. Isabella ended up getting more sick and spent some time in the hospital. She's feeling better but still coughing and has very low energy. Hopefully Isabella will continue to get better everyday. Raymond still isn't feeling well. We are watching him closely and hoping that Thursday's procedures will go on as planned. Lily has also started not to feel so good. Her eyes are very goopy and her nose is running. My poor babies!!! They are all feeling under the weather. I wasn't feeling well over the weekend and neither was Chris. I'm feeling much better but Chris is still not up to par. We are slowly but surely recovering. Thank goodness it's nice outside and I can open the windows and let in some fresh air. I want to air out the germs!

I also hope everyone had a nice mother's day. We visited with Chris' mom and she made us a delicious dinner. She was nice enough to have us over even though we didn't feel well. Hopefully we were good company despite that.

After we left Ellie's house we stopped at the grocery store. Chris was pushing Lily and Isabella in a cart and I was pushing another with Raymond. A man, who worked at the store, can over and asked me if Raymond was "a mongoloid". I was so shocked. I know the term but I never thought I would hear someone refer to Raymond as such. I'm guessing the man was in his early sixties. Young enough, I would think, to know the proper terminology. The question didn't upset me. He meant no harm what-so-ever. He was talking to Raymond and being very sweet. I told him that we prefer to call his condition Down Syndrome. He continued to talk to Raymond awhile then we went our separate ways. I told Chris what the man said (he had been getting something at the other end of the store) and Chris was just as surprised. With this story in mind, I want to share this with you.

Dr. Miller (the kids dentist) recommended that I read the book Angel Unaware by Dale Evans. Dr. Miller is a huge Roy Rogers fan. So when he recommended this book to me I wasn't surprised. I mentioned it to Ellie and just by chance someone had given her that book years ago to read. She had never read it and didn't know what the book was about. So the next time we saw her she gave me the book (after reading it herself). Dale Evans wrote this book from the perspective of her daughter, Robin, who passed away at two. Robin is telling God all about her experiences on Earth being a "mongoloid" a.k.a. a child with Down Syndrome. It's a short book and I think I read the entire thing in less than an hour. I enjoyed it and think it's a good book for people to read who have a child with Down Syndrome, especially if faith is an important part of their lives.

(Sorry the picture is so small)

Isn't it funny how this book happened to find it's way to Ellie all those years ago. Also, the fact that she kept it. It's old, stained and pretty tattered. Something made her hang onto it. There are no accidents. Everything has purpose. Raymond sure does love his Grammy. Even when Raymond's old, his cloths are stained and he looks tattered and a mess, he knows his Grammy will always hang onto him too. Her love is unconditional.

Thanks again for giving me the book a few months back.

If you ever happen to come across this book, read it. It's a good one.

Until Next Time!

Lots of Love,

Quick Update

Some of you have sent me emails asking if Raymond is now off of oxygen because of the pictures in my last post. The answer is - he's not supposed to be. Chris and I are having a lot of trouble keeping Raymond from pulling it off his face. He's at the age were he knows how to take it off and doesn't want it on there. Chris and I have had to make the choice whether or not to put it back on or let it off for awhile. Raymond's face gets so sore and bleeds. We've been watching him closely during the day, after the oxygen gets ripped off, to watch for blue skin. When we see him struggling for breath or turning blue we put it back on. He also must wear it at night. No exceptions. Chris has become a pro at taping it back on Raymond's face in the dark.

Also, I've been told that Blogger has been giving some of you trouble. Apparently, you haven't been able to see things on the blog well or comment. If you leave a comment and notice that I don't publish it within a day or two, let me know. The odds are that it didn't come through to me. The only time I don't publish a comment is if it's SPAM. I've received a few of those. Hang in there with me! Hopefully Blogger will work out these kinks soon!

Yes, Isabella is still sick and now Raymond is starting to feel crummy too. I'm really hoping he doesn't continue to get more sick and not be able to have his procedures next week. Lily is in isolation or as close to it as possible. Isabella has been having a hard time with that. She gives Lily tons of "blow kisses" instead of real ones. I told her she's being such a good big sister!

I've been going through the kids clothing and transitioning their draws from winter to summer. I worked on it a lot today while Isabella, Raymond and Lily napped. Our bed was covered. Can you find Lily?

Until Next Time!

Lots of Love,

Flower Garden

Last week I took Raymond to see the dentist about having his teeth smoothed out. I really liked this dentist and I am seriously considering switching to him permanently. It's a tough decision because I like Dr. Miller too. There's just something about this new doctor that I really like. It's tricky coordinating his schedule with the ENT's schedule. The other problem is that they need a 5 hour block of time to finish both procedures. It looks like July 15th will be the day. Next Thursday Raymond has the bronchoscopy and echocardiogram. Grammy is going to come and stay with Isabella. Lily will come along with Chris, Raymond and me.

Grammy was over this past weekend to watch Isabella and Raymond while Chris and I participated in the garage sale to benefit Isabella's preschool. We sold a bunch of things and made a little money. Isabella stated not to feel good on Friday and was taking it easy while Grammy was over. On Sunday we took her to Lowes to pick out some flowers for in her garden. We bought her a 4x4 garden last year. I don't plan to plant any gardens at this house. Since we live right next to a farmers market, there's no reason to grow my own vegetables. I can buy them cheaper there then growing them myself! Not to mention that my schedule is already pretty full.

I took Isabella to the doctor yesterday morning and was told she had a "slight ear infection". I was surprised that was it because she's had an ear infection before and I've never seen her so sick as she has been. So I filled her prescription and we went home to rest. After awhile she asked if we could plant her flowers. I thought the fresh air might do her some good so I said sure. She helped a little but not much. She mostly just sat beside me and watched. Raymond and Lily enjoyed being outside for awhile.

Raymond was very interested in Lily's little green pod. He kept trying to figure out how to open it.

Isabella picked out a lily for her garden. You know why. I thought that was sweet.

Raymond decided that he was done trying to figure out how to get into Lily and started to explore.

Isabella helped me pull weeds from the window wells a little bit.

While we were doing that Raymond managed to find the one place in the backyard with a little mud. He was a happy mess!

Sadie stood guard - as usual!

We went inside and Raymond got a bath. Then Isabella was out for the count. She really started to feel bad again.

When Chris got home we both agreed that she needed to go to the hospital. Well it turns out that Isabella doesn't just have a slight ear infection. She has a double ear infection, double eye infection and pneumonia. She is never sick, so to see her feel so horrible is just awful. I called the doctor's office this morning and asked to speak with the doctor who saw her. I wanted to know why she missed all these problems. She told me that when she saw Isabella she didn't have pneumonia. Now, I'm not a doctor, but I know that a person doesn't develop pneumonia in a few hours. There were plenty of signs that she was having trouble breathing. The doctor also asked me why I didn't mention that her eyes were bothering her. I told her that I did tell the nurse that Isabella's eyes were watering and had green discharge. I continued by saying that even if I didn't, she was examining her and should have seen it. I also told her that she made me waste $35 on my co-payment and the money I had to spend on Isabella's prescription because both were worthless. The appointment was worthless and so was the medicine she prescribed. Speaking of the medicine, the doctor told me that she actually wrote the prescription for the wrong amount. She prescribed 4 mls twice a day and it should have been 14 mls twice a day. I ended the conversation by telling her that she will never treat any of our children again because her service was sub-par at best and careless. (I could go on and on about this conversation!)

So poor Isabella is resting. It's strange not having her run around all over the place. I think Raymond feels the same way.

Speaking of Raymond, he has a new occupational therapist. She is a much better fit for him and I am excited to see what she has in store for him. Raymond's previous OT still has one of my books about fine motor skills in Children with Down Syndrome. It was expensive and I hope I get it back!

It's a rainy day today but that doesn't bother Lily!

Until Next Time!

Lots of Love,