Summertime Play

No matter how hot or humid it is - the kids still love to play outside. They have spent this week playing in the house they made of logs and tree stumps and a few paving stones -- so easily pleased. 

What We Are Reading

I just finished reading  Betsy's Busy Summer to Bethany and to any other kids that happened to sit and listen -- usually two or three kids will listen. Even if they were a little old for the book, they still enjoyed it.  Betsy's Busy Summer was written in 1956. I seem to like reading the older books to my kids and they seem to love them -- so it works for all of us. This book is kind of simple and not really exciting -- just everyday happenings of a little girl and her friends during the summer. In one chapter, Betsy had a watermelon party with Japanese lanterns strung everywhere and now Bethany thinks we should have a party like that. I even looked on Amazon to see if they carried Japanese lanterns -- just in case.  It probably won't happen, though.  Now we have started Betsy and Billy which was written in 1941 -- another old book. 

When we are not reading, Bethany has spent a large part of her summer catching bugs and worms. 

Bella and Sophia continue to grow and blend into our family -- things are really going well.  

Old Pictures

I was cleaning out my desk yesterday and I found these pictures of Sarah and Caroline sitting on our front porch. They look so small and cute -- I just had to post them. The pictures were taken in 2002 -- about one year after we brought Caroline home from Ukraine. 

 

A Little About Sophia

It has been almost 6 months since Bella and Sophia arrived and I thought I would give a little update on how Sophia is doing. Sometimes it is hard for me to tell if Sophia is making much progress, but most people that don't see her everyday tell me they think she is doing a lot better. So here are just a few things about Sophia and how she is doing: 

1. She can finally drink from a bottle without having it thickened. 

2. She pulls up to her knees frequently.

3. She sleeps very well -- from 7:00 pm to 7:30 am. 

4. She has gained about 5 pounds.

5. She reaches for me to pick her up -- this is a big one as far as I am concerned.

6. She has stopped grinding her teeth.

7. She turns her head when I call her name -- this is also a big one as we thought she couldn't hear. 

8. She can move her right arm and leg more but still can't really "use" her arm and hand. 

There are a few things that we are hoping will improve:

1. She still makes a lot of odd noises for a large part of the day. 

2. She will NOT let anything that has to be chewed into her mouth. She will fight you if you try. She is seeing

    a feeding specialist for this. 

3. She does like to be held but still makes very little eye contact. 

4. She still likes to rock and rock herself on the floor -- we have to intervene frequently. 

I guess as I look at the list I wrote it seems like she has blossomed in many ways in the past few months. I do think she seems happy, though sometimes it is hard to tell. She does smile and likes to be held -- sometimes she will even cry a little when she sees me -- wanting to be picked up. When I pick her up and rock her, she will sit happily for as long as I will rock her. 

She goes to PT, OT, and speech weekly and also sees a feeding specialist. She seems to enjoy doing her therapy -- but not working with the feeding specialist as Sophia hates any food that has to be chewed. She actually likes very little soft food and it is a struggle to get her to eat enough. She loves to drink a bottle though, so we give her lots of PediaSure and juice. She has been very healthy except for the very bad cold and cough she had when she first arrived. That seemed to last forever, but since then she has been extremely healthy. 

There are many unknowns right now. We have no idea how much she understands as her stroke damaged the language part of her brain -- speech and comprehension. 

Her siblings love her and play with her all day long  -- sometimes I have to ask them to give her a little break. They love to hold her and bounce her and show her all the things they are doing. Whatever her future holds, she is loved -- and that is what is really important. 

CF Day

Today was CF day for Bethany. We spent a large portion of our day at the clinic for her three month check up. Her numbers were down a little from her last visit -- about 3%. Since her numbers were also down a little on her last visit, her doctor is a little concerned that she is possibly growing something. She usually doesn't grow much -- just staph and last time H. parainfluenzae. So they cultured her and the results will be back next week. I am hoping that she is not growing pseudomonas. 

One good thing was that she had actually gained weight. I have worked so hard to get her to eat lately. She is almost never hungry and when she does eat it is always so little. Gaining weight can be a problem for kids with CF. But, she had gained almost three pounds. I was really surprised. 

Her chest x-ray looked fine and we have to wait for the results of her blood work. Her doctor decided that since she was blowing lower numbers this time he would start her on ACBT (Active Cycle Breathing Technique) and Huff Cough. So he went over that with us and we have to do this each day as she does her vest treatment -- start the vest and then stop after five minutes to do ACBT and Huff Cough and then start the vest back up for five more minutes and then stop and do ACBT and Huff Cough again and then continue to do this for the entire treatment. Getting her to do it properly is a little tricky right now, but I'm sure she will get it down after a week or so. It definitely does make her vest treatments longer and more work, but hopefully it will help her lung function. 

So, she now gets five nebulizer treatments each day and uses the vest three times a day -- up from two times a day. She gets Pulmozyme once a day, Albuterol two times a day, and HyperSal 7% two times a day. Hopefully the extra CPT (chest Physiotherapy) will help when she goes back to the clinic next month and they check her numbers again. I also pray that when we get the results of her culture she will not be growing pseudomonas.