Kyara Dzenis

Kyara Dzenis

Saturday, June 27, 2009

Fun in the Sun
















We are having a great time at the beach. So far, it is going great. I am really sad that we will be leaving tomorrow. Kyara has been hanging out in a beach wheelchair that we rented and in a raft while in the ocean. She seems to be calmed by the "motion of the ocean." She also has enjoyed the pool. Skylar and Kassey have been great and love the pool, sand, and sun. Their cousins, aunts, uncles, and of course Bunny and Pop are with us and we are having a great time! I'll post more later...now we are off to the beach!

Saturday, June 20, 2009

Recovered Just In Time!

I am home from the hospital. I ended up staying until Thursday. WIsh I could say I got some good rest, but that is difficult when the nurses come in to take blood every 4 hours! And they couldn't even draw from my IV! I am sure Kyara would have had a good laugh at my expense. I remember how much she hated to have the tape pulled off to take the IVs out. Now I know what she would complain about! That tape HURTS!

So Thursday Kyara had a OT appointment. It went pretty well, she seems to be trying to communicate with the switch again and the OT, Michelle is really good at encouraging Kyara. I like the way she lets Kyara's body tell her what she wants. Friday was full of more appointments. We had orthodics (which are rubbing her arms raw, so he is going to make completely new ones on Tuesday) and speech therapy. I think the speech therapist talks too much. I think Kyara agrees. Michelle, the OT, did a cotreat with the speech therapist on Friday and at one point Kyara was very upset. Michelle asked her if the talking was annoying her, and Kyara hit her button to say "Yes!" Well, that would be a Kyara response, so I tried to hide my smile and giggle when she responded, but I don't know how successful I was.

Today Gunars and I took the girls on a walk. We found a nature trail close to our house and decided to try it out. It was quite a humerous sight... I had Kassey in the stroller and Gunars was pushing Kyara in the wheelchair. The trail started out so nice and wide, it was covered in bark and had logs on the side to edge the path. After awhile the logs on the side disappeared, but the path was still easy to navigate. Suddenly the nice path ended and it was like a "well-worn" path in the woods. There were huge tree roots and boulders in the middle of the narrow path. But we kept going. Poor Kyara's head was flopping around with the bumps, but she did not complain at all, in fact, she seemed to really enjoy the hike. It got so crazy at one point I had to help Gunars lift the wheelchair, with Kyara in it, a couple of boulders that made "steps" in the path. Then I went back for Kassey. What an adventure! We loved it and can't wait to go again. There was a creek that the path followed and an area that you can wade out in it. Skylar liked the hike and Kassey laughed most of the time, so I think it was a hit! We just need an off-road wheelchair, and there will be no stopping us!

So tomorrow we are beginning our next new adventure. THE BEACH. Each year my parents, my brothers and their families, and Gunars, the girls, and I rent a place at the beach for a week. It is something we look forward to all year. In fact, last year, when we were packing to leave the beach, we were already counting the days until we could come back. We are sending Skylar and Kassey on down with my parents and then Gunars and I will follow on Tuesday night with Kyara. She and I have doctor appointments on Monday and Tuesday, so we figure it is best to keep those and go down later. I am nervous as all get-out about the trip, I pray Kyara does ok in the car. I think once we get down there, it will be fine. For me, its the drive. Kyara is not exactly the best traveler right now. The crying can get a bit much, but I hope going later at night will help with this. There is a hospital close to us, so if anything should happen, we know where to go for help. I think this will be a good trip for us all. I pray for safe travels for everyone on the road this summer!

By the way, I wanted to mention....
There was a little girls whose family was at the RMH both times we were there. In fact, they have been there since September of 2008 waiting for a heart transplant. Anyway, Lindsay got her heart last week and although she has had some difficulties, she is on her way to healing. PRAISE GOD! He knows the plan He has for us!

Sunday, June 14, 2009

First Week Back

When Kyara is being moved she is very calm. We go for walks every day in her wheel chair. We stretch her every day. These are things she seems to enjoy and doesn't fuss. We also put her in a swimming pool over the weekend and she was calm and relaxed as well. She has always liked being in the water. Otherwise Kyara is fussing. It's like a soft cry. Skylar and Kassey are taking all of this in stride.

In other news, I'm currently in the hospital with a kidney infection. I thought I had a pulled muscle from lifting Kyara up so much, but when the high fevers kicked in my mom made me go to the Urgent Care. Long story short, I'm in the hospital and will most likely be here until Wednesday.

To end in a positive note, Kyara is controlling her head up better. It doesn't flop all over the place. She still can't hold it up for long periods of time, but she is definitely controlling it better and getting stronger.

Wednesday, June 10, 2009

Kyara's Home

Kyara came home on Monday. We are all excited, exhausted, overwhelmed, and thankful to be together. On Monday, my brother, Allen, came up to help me get Kyara out of the room and home. She had a LOT of stuff! Well, I was told she would be discharged between 10-11 am. I told Allen to be there at 11:30, I know how hospitals work. I figured we would get out sometime after 12pm. (Allen guessed, 1:30...he wins! :( ) Well, at 5:30 pm, 2 xrays, and a NG Tube (which is 30 cm from the tip of her nose to the end of the NG tube in her stomach) placement later, we were finally on our way. Could have been worse...

Anyway, I am exhausted and still trying to cope with being home. This has been a very difficult transition for me. Kyara is "crying" "moaning" "fussing" whatever you want to call it, most of the time. I have found that walks in the neighborhood calm her, but what about the other 14 hours of the day that she is awake?? Kyara begins out patient therapy tomorrow, so I am praying that it will go well. I pray that the crying will lessen so that I can keep my sanity. I am so thankful for my mother-in-law and my mom, who have been helping at the house SO much.
My mom, Bunny, is splitting time here and in Columbus with my Nanny (Bunny's mom).

Speaking of which, Papa's funeral was beautiful. I really appreciated the kind words that were spoken about him. My brother, Matt, got up and spoke at the funeral and it was more touching than words can say. He was great...I was extremely proud of him. He touched on the special memories we have of Papa, I think he could have gone on for hours. Papa was an amazing man.

Wednesday, June 3, 2009

Good News and Bad News

Which way should I start... Well, I am going to give the bad news and end on a happy note.

My grandfather (Bunny's dad) passed away today. He was an amazing man. He will be greatly missed. I love you, Papa!

The good news... Kyara has had another salivagram and a swallow study in the past two days. She did good on both! Yea! Sitting up really helped! Today she was given a few bites of applesauce in the study. Although she aspirated a tiny amount, she did great with most of it. The speech therapist feels it is safe to begin giving her more tastes (applesauce, yogurt, pudding, etc) to help her relearn to eat!!! YEA!! The only question now is her stomach and how it empties. We will cross that bridge as we get to it, though.

I also met with the communications person today and she was very helpful. We are purchasing a few devices and books to have at home. The books explain ways to properly use the switches and devices to best help Kyara. This will help give Kyara a voice again. She has been doing better and better at hitting a big button to communicate her wants.

So, although I am very sad Papa's passing, I know he is looking down on us and smiling from heaven. He is at peace and that is very comforting to me. And today was a good day from Kyara's stand point.

Release Date Postponed

Kyara's new discharge date is for Monday, June 8th. She is working on pressing a switch to communicate, so we are meeting with a communication therapist before coming home.

My grandfather had a stroke this week, so we have been hectic trying to keep someone at both hospitals. This is a crazy time for all of us, I hope you are having a great summer so far. I enjoy having Skylar at home more. Now, if I can only get home with her more, that will be great!