I know I haven't blogged lately, but this month has grabbed a hold of me and drug me along. It has been a very busy month. (I am not sure when we aren't very busy?) From Kaysa playing on 2 softball teams, dance recitals, Basketball camp, dentist appointments, IV Infusions, doctor appointments in Chicago, several anniversarys, lots of birthdays, and everyday activities we have ran until the late hours of the night every day! Good thing that is when Kya is at her best. We let her sleep through the heat of the day and that way she is good to go! She is actually holding up better than the rest of us!
Kya is actually doing pretty good. She might be a little weak, but I think she is doing ok. Her usual infusion date would have been yesterday, but since they spread them out she won't have one until next Tuesday. Please pray that she maintains and even gets stronger over the next week. She took her Methotrexate shot Saturday night and did pretty good with that. It is not making her as sick as it used to. The lower dose is helping ease the nausea. She still says her tummy hurts, but she will at least eat that next day. Overall I think she is maintaining. I know she is enjoying her summer and going to all of the softball games in the evenings. She really likes to socialize, be outside, and see her friends.
Yesterday, Kya took a late nap so she was good to go until about midnight. which was good because Kaysa played softball until 11:00 last night. We had a nailbiter in t-ball and came from behind (our first time all season) and won 23 to 22. We were down by 6 when Kaysa hit a homerun in the last inning with 2 people on base to score 3 runs! What a way to start a rally. Everyone stepped up and we scored 4 more runs with no outs to win the game! Then we played the first round of the coach pitch tournament and we run ruled the team so we got to go home early! (Ha! Ha!) Kya went home and stayed the night with Grandma Trish! Kaysa was having dental work done at 8:00 this morning in Edmond so she and I went to Yukon to stay last night after the games.
Tonight we have the championship game of our t-ball tournament. Sounds like a real big deal, it is at our house! Our teams are undefeated so far this season, but it will be a tough game tonight. Then, we have the 2nd Round of our coach pitch softball tournament right after the t-ball game. (We are also undefeated with that team) We will finish up the coach pitch tournament on Thursday and Friday! Then, Kaysa will sing Saturday night with the Oklahoma Opry band at Yukon at the Freedom Fest for 4th of July.
Speaking of 4th of July, Kya is ready for firecrackers! She has been talking about them since last week. She wants to do "Romans". My children really enjoy setting off fireworks, especially Roman Candles! (I am not sure how safe this is, but no one has gotten hurt yet!) Uncle Jimmy is having his big 4th of July get together tonight and we are playing ball. I haven't even told Kaysa because she will be so disappointed. We are going to try to make it to see the big fireworks as soon as our games are over. (But I am afraid it is going to be to late.) This is one of Kaysa and Kya's favorite holiday get togethers! We will have to try to make it up to them somehow.
Well, that kind of sums up what has happened this month and since the last blog. Please continue to pray for Kya. She is continuing to get her muscle strength back, but there are a few muscles that we really are having to work on. Her trunk muscles are still rather weak. Also, she still doesn't have her bladder control back (it comes and goes) and that is making it hard to get potty trained! Please pray for improved muscle strength in especially these areas. Also pray that she continues to respond well to the tapering of her medicines.
Also, please pray for our new friends, the Bradford's in Washington. Their little boy, Gary who is 2 also, has the same disease and he is not doing well right now. He can't swallow and he has a feeding tube. He has also been in the hospital in isolation with a bad infection. We know what they are going through as we have been in there shoes! He was just diagnosed in May so they are in the trying months right now. Please pull your prayers together for their family and especially for Kya and Gary! They don't understand what is going on or why it is happening. It is so hard for them dealing with all of their emotions, the medicines, the needles, and just the changes in their lives! Also, say a special prayer for Kaysa and Gary's siblings. Kaysa made a comment the other night about she wouldn't have prayed and asked for a baby sister if she knew she would have to be sick. It is so much for them to process! (It is so much for me to process!) We forget how much it affects everyone involved!
Thank you again for being a great support team! Your prayers are greatly appreciated!
Kalee
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