June Happenings

On the 6th we went to the pulmonologist and was cleared to take Bailey off some of the medicines she was put on in the hospital. This was good because we were planning to leave that Wednesday for the beach. She was on two diuretics which meant she could spend very little time in the heat. Don't get me wrong. We would never let them sit out in the sun for long anyway.

June 9
First time on the beach

Bailey wanted nothing to go with the sand or water. She did not even want to stand on the sheet.

Wyatt did not enjoy anything about the beach either. He got sand on his hands and refused to move his hands anymore. The sound and sight of the waves coming in was too much for both of them.

Tyler loves it all. I did not get a picture of Brianne because after just a few minutes I had enough of the babies. We went to the car. Brianne continues to be scared of getting her head wet. I hope she grows out of this soon because she needs to learn to swim.

Lee's brothers and family came down to eat with us. It was a very enjoyable night. The kids were very good. We took pictures of all the cousins, and yes my group took up most of the bench.

We ended up leaving the beach early due to Bailey getting sick. We hated to leave because Grandaddy, BeBe, and Sophie had just come down. On Sunday and Monday we took her to the doctor, and she got a shot of rocephin each day. On Tuesday I called the pulmonary group, and the RN said I needed to take her to Children's er if her sat was lower than 90%. Her sat that night had been dropping as low as 79%. What an er visit. They sent her home with no oxygen and the wrong dosage of steroids. They also told me an RN from the pulmonary group would be making a followup call. Of course 2 days later no one had called so I called them. After all the mix up was taken care of we got oxygen back in the home again. I think they should refund the $180 er copay I had to pay.

June 16
The many faces of Wyatt

June 21
Wyatt likes to go in our room and get Bailey up from her naps. He thinks he is her boss. I would just like to say a little prayer that I am so thankful that God has allowed us to get a house that had a master bedroom with a study. God knew we would need it in the future. I wake up from the smallest sound so having her way across the room is a blessing. Plus the O2 concentrator is LOUD. I also pray she is soon well enough that I can kick her back out of our room. :)

Big sister giving Wyatt a ride.

June 30
Grandaddy with Wyatt and Bailey before we left to take Bailey to see the neurologist.

What else did we do medically this month? You name it we probably had it this month. We continued to see OT, PT, and vision therapy. Does she eat any better? NO! Although Wyatt is still behind with his eating skills, he does love to try to eat everything we will let him. He still does choke some, but he is getting better. We saw the dermatologist June 29 and Bailey has keratosis pilaris or KP. She needs to use certain soaps, lotions, and detergents. In the future if she cosmetically has a problem with the "rash" there are some other treatments. Hopefully it will improve as she gets older and not be as noticeable. On June 30 we went to the neurologist. He said that the nystagmus that we see is caused from a lack of sight at some point. It started when she went blind in April 2010. He said most likely the sudden blindness occurred due to an infection in the brain that she managed to fight off herself. He said she is a miracle baby. He also feels so strongly that Bailey is not autistic that he is willing to write it in her chart. They both continue to amaze us. To think that 10 years ago they might not have survived.