Daddy Time

Alexis and Brian have done a daddy/daughter dance the last couple years. With us not quite able to be out in public with her, they were not able to sign up for one this year. Brian was a little bummed, so we decided why not do one ourselves. So, we invited a few friends, got some crafts and decorations from the dollar store and started making preparations.

Four girls were able to come. One had to back out at the last minute, as there was sickness in the house. So appreciate that people understand we have to keep her safe. 

We got home around noon from the hospital and were able to get the decorations up (not quite to Laura's vision, but there was only so much to do given the circumstances). Out friend Stacey made coursages for all the girls and cute take home gift. My friend Laurie bought a cute headband for Alexis. Girls arrived, and moms and boys were kicked out. 

The girls made cork boards for their rooms, ate, and ran around crazy. Apparently only one dance took place, but they had a great time so that's all that matters. Alexis had the energy to enjoy.

Busting Out

Alexis got discharged from the hospital today. She was do excited she refused to sit in the stroller, insisted on rolling the suitcase, and danced while waiting to be picked up. I think we are all a little excited to have her home!

What a difference a day makes

Alexis's temperature broke over night. She went without oxygen or any breathing issues at all. They do want to keep her today to watch her and said we could go home tomorrow probably. 

Alexis spent the day playing games with Dad, doing speech with Ms. Casey and getting her valentines ready with Mom. 

Ms. Casey is doing a unit on doctors and dentists, so Alexis made an ambulance with her today. Luckily, she was the driver and not in the back this time! 

First Ambulance Ride

Alexis had her tutor come in the morning. We decided between all the junk going on at school and her teacher being gone the end of this week, we should just keep her home and have the tutor come instead. She worked hard for her and then went to the Moog in the afternoon for speech.

When I picked her up, she looked a little punk. She just gave a sad face and turned out that killer lower lip. Kids know how to work it! We went home and she wanted to watch tv, which normally means Conner convinced her to ask or she isn't feeling well. We sat down on the couch and she felt warm to the touch. I took her temperature, and it was 101.8. Anytime it is 101 or above, we automatically have to go it for testing and to assess her. So, we headed to the ER (that's where we go when clinic is closed), and Brian met is there. 

The boys were great (thanks to modern technology). They ran all their tests, and everything came back great. Counts looked good, swab still just showed common cold. For a kid with a suppressed immune system, having a common cold that would take others 3 days to get over, means it takes them 3-4 weeks. So, they said since her counts were good and we had a source for the temp, we could go home. Sounded good to us!

She fell asleep on the way home, and transitioned to bed fairly easily. I was exhausted and decided to climb straight into bed myself even though it was only 8:45. Emotions have a way of draining you. It wasn't long before I heard a strange noise. I muted the tv and heard a weird gasping sound. At first, I thought it was one of the kids crying. I quickly realized it was Alexis struggling for deep breaths. I called Brian up, and we tried to get her to take some deep breaths, but she wasn't able. 

I called the oncologost and explained that although we had just been discharged, she was having a little trouble breathing. She said I needed to hang up and call 911. I said, "Can't I just drive her back down there?" He replied with an emphatic no and explained if she went into more distress that I wouldn't be able to do anything. So, Alexis earned her first ride in the ambulance. What felt like 100 people (I think it was really 8) came flying through the door asking questions and pulling out monitors. They assessed her breathing and said she was breathing pretty shallow. 

The ambulance ride consisted of Alexis getting oxygen and the paramedics trying to keep her awake. They needed to make certain she was responsive. All she wanted to do was sleep, and was very irritated they wouldn't let her.

By time we reached the hospital, she had rapid, but full breathes. She was stating 92/93/94 for her oxygen level. Although not 100, in the past with respiratory issues, we have always wanted to maintain a minimum of 92. So, she had quickly recovered. Her temp was still a little high despite the Tylenol they had given her, so she got a little more of that. Then, they admitted her. Two trips in ine day I guess earns you that. Took is six years, but she finally got an ambulance ride. I think I could have lived without that experience! 

Hairless and Toothless

Alexis can now claim that not only is she hairless, but toothless as well. After a month of a wiggly tooth that even had her speech therapist working with her on how to wiggle it, she finally caught on and has been wiggling it a lot the last couple of days. Today, while eating a grilled cheese sandwich, it came out. I tried to have her spit the sandwich into my hand, but she promptly swallowed instead. This is after dad has been talking to her for a couple weeks about not swallowing it. So, I told her that she would have to write the Tooth Fairy a note explaining that it was in her stomach. She then lifted up her shirt and tried to go in at her belly button to find it. She quickly gave up and wrote the note instead. Let's hope the note works and the Tooth Fairy still brings her money for her first lost tooth!

Hospital Trip

Alexis coughed all day on Sunday and wasn't quite herself, but doing ok. Monday morning, however, she was less so. All she wanted to do was sleep and she had the shivers. I called the oncologist and described her symptoms. They said they wanted to see her. After pulling Conner out of school and finding a good friend to take the boys, we headed to the hospital. They started her on iV and an antibiotic right away. Then, they sent her down for a chest X-ray given her pneumonia history. They also ran her CBC to see if she needed any transfusions. Luckily, the last two were negative. Counts were fine and no pneumonia, but her temp had gotten higher (within .2 of having to e admitted). They also drew blood to make certain there was no infection in her line. They took her temp one more one and were going to give Tylenol. However, it had already started to come down on its own.  So, they said the coldshe has had for te last couple weeks was probably a lot of the cause, but a little dehydration as well.  Since her temp came down, we got to go home, for which we were really grateful. The whole time in the back of my mind, I had this fear this was the beginning of chicken pox. This fear is lingerin and such an awful feeling and burden to carry that someone else has put there. I wish they understood the nature of their actions. For one more day at least, we are safe.

Let's Fight Together