Two Weeks

On Saturday, Eva started having a runny nose.  Yesterday, she had a slight cough and then was progressively getting worse.  Today, she had therapy and was a little off balance but her appetite was fine.  I put her down for a nap and I had to wake her after five hours.  She was scortching hot and drenched.  From her ears to her chest was bright red.  I took her temperature and it was heading fast to 103.  That was enough for me.  I gave her both ibuprofen and tylenol and she was clingy for about 45 minutes.  After time passed, I got some juice and gave her her favorite relaxation therapy: Finding Nemo.  She sat and watched Nemo while I finished fixing dinner, helped with homework, and ate.  I scooped her up and put her in her highchair.  Her appetite was still normal.  She got some more medicine and I put her to bed.  I will give her more medicine after eleven just so she does not become a 20 pound firetruck again. 
We have a doctors appointment in the morning so I am hoping and only assuming she will be on some type of antibiotic.
Also, about a month ago, I started an Eva calendar.  Everyday since the end of July I have tracked her health.  Now that I see this pattern, it is litterally every two weeks.  She last took an antibiotic on August 10th.  If this pattern continues again in three weeks, I will see the IDI doctor and show documentation and hopefully she will get her daily antibiotic to boost her immune system.  

Details, Details, Details...

I think I have everything organized to write this post.  I had to see where I had last posted and it was the middle of July.  I little to long since I have updated but here we go.  On Saturday, July 21, Eva started to get that runny nose back again.  She had just gotten over her viral issue from the first week of the month.  Everyone can deal with a runny nose but after a few days, it turned into a cough and finally the dreadful fever.  By the 25th, Eva seemed to be ok but Abigail had an ear infection.  I am sure you can see where this is going.  Scott and I took the older two to West Virginia on the 27th for a four day  "before school starts" adventure.  At 4am Sunday, we were on our way back to Indy.  Woken by a phone call, Eva had a very high fever and needless to say, cut our trip a little short. We gave her every three hours religiously, Ibuprofen and Tylenol to control the fever.  It peaked at 104.  Luckily, she did not have any seizures.  On Tuesday, I took her to the doctor and she was placed on amoxicillian.  I was scheduled to leave on Thursday to NYC so we scheduled another follow-up appointment on Friday.  Our peds gave her a shot of penicillin in the office and gave her a script of predisone.  Scott says that an hour after the shot when they arrived home, she had made a 180 degree turn for the better. 
Now on to NYC -
The trip was every emotion possible; exciting, exhilarating, exhausting, depressing, up-lifting, mind-boggling, and more.  I was so excited to meet all of the other families.  They were so open with their child who also had C17.  It seemed like there was every part of the spectrum when it came to their child.  There was one little girl that was five.  She could not walk independently, had a feeding tube, troubled eyesight with glasses, and was not communicating verbally.  Another child who was nine was very active but not verbally.  He was an excellent speller shown by his texting and typing ability.  I also befriended a family with a three-year old son.  He had similar issues as Eva; hip dysplacia, developmentally challenged, non-verbal communication.  She had stated that she had him tested for apraxia.  This is a syndrome that connects the brain to your verbal and oral skills.  After he was tested positive, she had him in a very aggressive speech therapy program.  At three, he could be easily understood and making 4-5 word sentences.  All in all, there were about 14 different kids there.  They all had their own health issues and disabilities.  Each of their parents were so kind, patient, and resourceful. 

I knew that this experience going to NY was going to be educational but it really went over and beyond.  I now feel so fortunate that Eva is Eva.  I know that her health could be much different or even worse.   As always, she will surprise us every day with new experiences, routines, and accomplishments. 

All Around Greatness

I have so much to talk about but I am so tired from such a long weekend.  I will just highlight a few great items -
The weekend was wonderful! I met so many families and their children.  I feel so fortunate what we have and what others shared with me. 
When I got home tonight, there was a voicemail.  It was from Sylvia with CSHCS.  She wanted to inform us that Eva has been approved for all services!!! This was really the icing on the cake for my weekend. 
I will detail my experiences in the next few days.