> Evening,

Thanksgiving is going to be at our house this year and I am really looking forward to it.  I went grocery shopping today with everyone else.  It was crazy.   Thank goodness I had left the kids at home napping. 

The girls are doing pretty good.  Last night we went to a friends 40th birthday party and kept the girls out too late.  In addition, Chantel was awake a lot until I finally got up with her and feed her at 3:30 AM.  They are both over tired.  Today they desperately needed to take naps but being too tired to fall asleep.  It took Sharmi 2 hours this afternoon to fall asleep.  I finally had to lie down with her.  Sharmi also had a really low grade fever today, so I her body seems to be fighting off something. 

I am sure you all know by now that I use this site to record events and anecdotes of Sharmi’s life.  When she was little I used to write things in a calendar, but I don’t have time to do that anymore in addition to the post.  So, you guys have to listen to her cute stories (maybe only to parents) and you have to listen to me brag about her.  So here goes; last week Sharmi learned almost all of her phonics.  Trina loaned us a movie that teaches phonics and I think Sharmi watched it 10 times last week.  On Friday evening, while we were eating dinner, Chantel was pointing at the beta and Sharmi said, “sister that is a fish,.. ffff,  fish starts with”F”, “F” says f.”   I was amazed.  Then I asked her the sound of every letter of the alphabet.  She only missed 2 or 3.  I am sure that won’t all stick in her memory, but she certainly has a good start.  It was funny this evening, both girls were sitting on the couch watching  the movie and Chantel was saying,  “ aaa,   bbbb,  gggg”  Sharmi was cheering her on.  it was very cute.  I wish I would have videoed it. 

Another cute thing Sharmi did was last night.  The party started to quiet down so Sharmi took the opportunity to be the center of attention.  She was spinning around in circles in the middle of the room trying to get dizzy.  Her sister of course followed by example.  When Sharmi finally thought she was dizzy enough she would wrap her arms around herself, hold onto her shoulders, and say, “wow, I have to catch myself.”  And then she would fall to the ground.  She of course got a laugh from everyone, which encouraged her all the more. 

Chantel’s is certainly learning by example.  She watches her sister take all of her medicine and she wants some too.  So when I give sharmi all of her supplements and meds in the morning I give Chantel calcium gummies.  Last week Chantel lead me into the kitchen in the morning and pointed to to Sharmi’s medicine cabinet and said “vimin” (vitamin).  She wants to do everything her big sister does.

Well,  the morning comes early with little ones.

I hope you all have a wonderful Thanksgiving.  We have a lot to be thankful for in this family.  God Bless you and your families.

Cheris

Good afternoon,

When you have little ones it seems like you are always fighting to create normalcy and a consistent schedule.  The time change was really hard for us. I got very little sleep that week because Chantel kept trying to get up between 4:30 am and 5:30 am.  I of course wasn’t getting to bed any earlier either.  We have finally adjusted to the time change and now Chantel has decided that she only needs one nap a day.  I don’t want to agree with her, but after she fusses in her crib for anhour in the afternoon, I finally give in.  The great news with Sharmi is that, with the break from steroids, I have been able to get  her to take naps and go to bed consistentlyall by herself.  She of course does the delay tactics of potty, water, tuck me in, I need a hug and a kiss, but she is doing really well.  At nap time today she grabbed my hand and held on as tight as she could and said, “you can go, but your hand is staying.”  After my hand tickled her tummy she finally let go. 

Sharmi is doing really well with her letters.  We were reading a little animal farm flap book this morning, and when she opened the flap she would say “A COW” “A ROOSTER..”and then she would say each letter.  I was impressed.  I had not specifically taught her letters with those books.  I asked her how she knew how to do that and she said, “I am a little smarty pants.”  Apparently I have told her that too much.   

Chantel is also learning how to get what she wants.  Last week I was doing the dishes and she walked over to the dishwasher and took out a spoon.  Then she toddled off to a little table in the kitchen nook where I keep extra bowls.  She returned to me with the bowl and spoon and proceeded to push the dishwasher drawer in (which she hadn’t done before) and then tried to push up the door to close it.  After I assisted her with the door she took my hand and lead me to the refrigerator. She signed ”help” and ”food”. I could be wrong, but I think she was telling me that she was hungry. 

Despite the girls doing great I am in a weird funk.  I don’t even know why, so am using a little Christmas music to lift my spirits.  Two kids wiggling on my lap while I am typing with one hand isn’t helping my sanity either!  I am hoping to go to bed early tonight, because everything is better with a little sleep.

Happy Monday.

Cheris

Good Afternoon,

We are doing really good here right now.  We had a wonderful weekend as a family and my parents watched the kids on Saturday so we could get away for a few hours. 

Sharmi’s appointment last Tuesday went well.  Her counts were back down to 1200.  This is OK, but they elected to start her back slowly on her drugs.  They canceled the steroids for this month and the weekly methotrexate for last week again.  So Sharmi was only on mercaptopurine last week.  Sharmi has had a lot less drugs in her system these last couple weeks and it is evident in her behavior.  This morning she played quietly by HERSELF reading books, magnetic dress-up dolls, tucked her dollies to bed on mommies pillow, and built log houses.  It has been so peaceful and enjoyable. 

Chantel is at a wonderful age.  She is really starting to communicate well with words and sign.  The signs she used this morning include banana, pain (Sharmi accidentally hit her in the head with a bottle during her bath), bath, more, and sleep .  When the girls were at the park on Saturday with Grandma and Grandpa I was talking to Chantel on the phone.  I thought it was Sharmi because when I asked her if she was having fun she said, “yeah” and when I told her good-bye and I loved her she said “bye.”  I was shocked when mom today me that it still Chantel.  I understand what she is saying at home, but it is generally harder over the phone. It is so fun to watch her grow, develop and copy big sister, except for the temper tantrums.  :)   

Well, they have both awakened from their naps and I promised I would take them outside today.  It is cold, but not rainy so we have to take advantage of it.

Cheris

I hope everyone had a wonderful Sabbath,

We had a great one because we are finally home.  Sharmi was discharged yesterday afternoon.  Thursday was the turning point.  In the morning when I got there I looked at her infection and it was significantly worse then it was the night before.  I told friends and family that by the progress of the infection it looked like we would be there through the weekend.  But I am thankful that God was hearing our prayers and had a plan.  That morning my mom was walking through her grocery store and a 20 inch aloe vera leaf “jumped out” at her, and so she bought it thinking that it would help Sharmi.  Then my mom’s music lessons kept canceling resulting in it opening up enough time for her to come over to the hospital.  She felt like God was telling her that Sharmi needed the aloe that night.  Around 8:00 pm, when visiting hours were over, the room started filling up with people who loved her.  First mom with aloe, then Carl and Trina and Chantel with red algae capsule and toys, and then my dad.  It was a party!  

Thursday afternoon I started to see a slight improvement in her skin, it looked a little less raw.  But the real improvement started when we rubbed the first aloe on it.  It was amazing.  It began to heal so fast that you could almost see it change.  Within an hour the red infection was much better and the surrounding skin looked pink and healthy like it was bringing in blood to help heal.  We also gave Sharmi a dose of red algae which Carls family uses for shingles.  It took us two attempts to find the right carrier for the stuff, but we finally got it down.  By the time everyone left two hours later I was very optimistic that we were going to go home the next day.

At rounds, after looking at Sharmi’s improvement, the attending doctor gave us the option of staying one more day or going home.  She was leaning toward us staying because she stated that she had seen a lot of zoster (herpes zoster aka varicella or shingles), but not like hers.  She said that Sharmi’s was a very bad and aggressive case with so much fast growth even on the antifungal medication.  She warned me that if it got worse at all we were back in the hospital for at-least 3 more days.  I felt like God had given us the plan of care for her so I decided to bring her home.  We have continued to use the aloe and give her the red algae in addition to the oral anti-fungal medication.  Today her infection is almost gone on her arm.  Her hand still has some big sores but I am confident that they will heal soon. 

Today was a day to just spend some time at home healing and resting with the girls.  Shami has bounced back so quickly.  You would never know that she was in the hospital 4 days last week and that she has been fighting off infections for 6 weeks now.  She is amazing.  I am so gratefull that God made her a tough fighter (most of the time  

Chantel had a great time being a big girl and experiencing the world while we were in the hospital.  Her verbal and sign language communication has really taken off in the last couple to weeks.  It is so fun to watch her blossom. 

Good night to you all.  Thank you for all of your thoughts and prayers.

Cheris