Before I get started, let me apologize for the delay in writing. So much has been happening. I keep meaning to write, and then, by the time I get done with everything, it is way too late! I apologize for the delay, and I will try to catch you up on everything that has been going on.
First, the Night at the Museum event was AMAZING. The amount of work that went into it was enormous, and all of the people that worked so hard to put on the event have our gratitude. I met/saw so many people as I walked around, and I even got to catch up with an old friend from high school (wel..we aren’t OLD..just haven’t seen her in 17 years!). Sharon Montgomerry, the string players, Lisa and Chris, the kids, and Rick Lee all did a fantastic job entertaining the crowd, and our MC’s did a wonderful job of keeping the event rolling. Thanks to you all.
As you probably have read, Katy was in the hospital last month for elevated BUN and potassium, and for low sodium. Since then we have been to the doctors a few times to keep an eye on these levels. She has also has been working hard to learn her prosthetic arms. The arms require quite a bit of shoulder strentgth and flexibility, and she has a workout routine she does while wearing them. She will be getting her first legs once her wounds finish healing on her lower extremities. The wounds are doing very well. Just to clarify, “well” is a relative term used in the context of how serious her wounds are. The wounds would probably freak out anyone who would see them for the first time, but, believe me, they are have come a LONG way.
Amber has been a huge help with everything from watching her brother and sister, to running errands for the house. She has continued to work on her origami, and is starting to write again. She is leaving this week to go visit her cousin in Arizona for a few days, and then, when she returns, it won’t be long until school starts again. We are so proud of the young lady Amber has become.
Jake has been trying to keep busy. He has been going to a few classes a week at the montessori school, and has gone swimming with friends as much as possible. You should have seen him in his shirt and tie at the museum..he was so cute! He is has been helping to feed Arielle, and helps around the house by taking out the trash and letting the dogs in and out. I know he can’t wait for school to start again.
Arielle is still fat, happy, and spoiled. She has started taking oatmeal mixed with her formula, and is still sleeping all the way through most nights. She is making tons of new sounds, and has even started laughing differently, in more of a toddler voice. She has figured out how to grab and pick up things, and can scoot closer to whatever she wants to “eat.” You should have seen the look on her face when she figured out how to throw things!
The back and forth with the SSA/Medicaid is still going on, but some progress has been made. There is still administrative confusion from time to time, but it is getting a little better. The doctors are another story. One doctor inparticular has been causing us grief. He requested that he see Katy again after her time in the hospital. We went to see him, and his receptionist didn’t want to let Katy in to see the doctor because Medicaid has never sent her a card. We had her number, and her ID, but this receptionist, who I told the situation about the card in advance, decided to give us a hassle. We finally got in, and then were made to wait for over a half hour for the doctor to come in. When he did come in, he just asked that we go to a diagnostics lab to run some tests in a week and a half. We made our appointments for the diagnostic lab and the doctors office, and went home. Fast forward 9 days, and we went to the lab for the tests. The lab said that they couln’t do the tests on Katy because they were not equipped to draw blood from someone with quad amputations. They said that she would have to go the hospital and schedule the tests. I called the doctor’s office to ask if we could schedule the tests, and the receptionist said that we would still have to come in to see the doctor first. We loaded up and went to the doctor’s office the next morning. This time the receptionist refused to let us in. We called Katy’s PCP and was advised to go to the ER, and that he would arrive a few minutes after we did. We went to the ER at 4:00pm. The admitting doctor (who was very nice) said that if the test showed any elevated white blood cells, that they would keep Katy for 24 hours and give her some antibiotics and a prescription for more. They ran the first tests, and Katy showed no signs of infection. Since there was no reason to keep her for long, they just were supposed to keep her until 10pm, run her lipids test, and then let her go. Nothing is ever that simple. Once 10pm rolled around, the lab tech wasn’t sure how to take the blood from her line. Then, after the results came back, the nurse, who didn;t know how to deal with the ostomy, said she couldn;t take the line out, and that Katy was supposed to stay until the next day. After talking with the charge nurse, it turns out that the nurse is the person to remove the line, and that the doctor (one of THREE doctors that NEVER SHOWED UP) wanted Katy to stay. It appears that, since he didn’t have the time to make it in to see her, he wanted her to stay until the following night so that he might be able to make it in to see her. That was unnacceptable, and we left at almost 1 in the morning. We will make an appointment with a doctor for a follow up. It is unbelievable to me that they subjected Katy to 2 eight hour fasts in a 24 hour period because one of three, all of whom were all rounding, couldn’t see her in a 9 and half hour period. I filed a complaint.
While all of this has been going on, we have also had Katy’s mom and sister visiting, and dealing with the repairs to the van. I don’t remember if I wrote about this, but the van broke down South of Houston, and has been at the shop for 2 weeks. I picked it up today.
I PROMISE to try and write more as things happen. A lot of our days consist of routine events now, but I will post changes, and baby updates as they happen. Thank you all for your patience.
Love to all,