Okay we got the results back from Chicago a couple of weeks ago and they said everything is looking good and just keep everything the way it is. There is just one number that is elevated but since everything is in the normal range at this point we are not going to be concerned about it.
Today Addyson had a treatment and the port worked great! I am glad we have this figured out now. It has made a big difference in how Addyson handles these days. We also saw Dr. Jarvis, who said Addyson is doing very well and we are going to have Addyson go every 3 weeks for treatments. Yay!! I love hearing good news.
We are going to schedule an appointment for Addyson to talk to someone. Matt and I have noticed that she has alot of anger inside of her. My guess it is from all the problems with the port, the three surgeries and not understanding why people have to do this her. We thought it would be better to have this checked out now then later in life!! I will let you know how it goes.
I am so glad that the port is working! It is wonderful to hear that her levels were in the normal range also. Don't you love getting to spread out the treatments! I remember those days. I think you will also find as you spread out the treatments and lower the steroid dosages the anger will subside. Kya was very much that way and as young as they are they have no other way to express how they feel. She would be hugging you and say how much she loves you and then bite you on the shoulder because she didn't want to be hugged in the next second! I talked to several people that I knew had taken the treatments and the meds she was on and they told me as adults it made them feel the same way and they just knew it was wrong and not acceptable to do it. They said the steroids made their moods swing uncontrollably! Happy to say Kya is much better now. She still has her moments, but she is also 3. I remember telling people that Kya is just flat out mean watch her. I think it is a survival instinct that kicks in with what they are going through.
ReplyDeleteI will say that she has never fought the nurses or doctors. Even when they do the IV she yells and screams at them, but she never offers to do any physical harm to them. She very much verbalizes her emotions!
Hope things go well. Remember that things will get better. The meds turn your child into someone they are not normally and then one day... poof... your old baby is back! Hang in there!
I can't wait until we are as far along as Kya! But I am so lucky for her to be doing as well as she is. Compareed to alot of kids, Addyson has it easy and I think God for that every day.
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