Kyara Dzenis

Kyara Dzenis

Monday, January 26, 2009

Day 5...Dan is back!!

The neurologists came back to do their rounds and examinations on Kyara. They were not as uplifting today as they have been. Although they are considering Kyara a success in surviving the cardiac arrest, her EEG has actually gotten a little worse. She was considered moderately sluggish, but they are now rating her as severe. The EEG measures brain wave activity, so this has been a blow to us. She also had another mild/minor seizure this morning. It only lasted 10 seconds and again was subclinical which means we did not see any outward signs of the seizure. It was only recorded on the EEG machine. She is taking antiseizure medication and still working on the dosage. The doctors are not concerned about the minor seizures...they may not mean much of anything.

I am very skeptical about the results of the EEG. It seems to me that she is responding better than she was previously, so how can the EEG say things are worse? She is actually responding some now, whereas the first day or two she was completely unresponsive. She is able to keep her eyes in the middle instead of the sliding off the side or up into her head. She is localizing pain and touch and responding to it, so I just can't understand how the EEG is say she is getting worse.

In fact, today the nurse, Julie, removed Kyara's foley (a urinary catheter) and was putting a diaper on her. She and Gunars bent her knees up and they asked her to raise her bottom so that Julie could slide the diaper underneath her. Holy cow, she DID IT! Granted it was not very far, only high enough to slide the diaper under her, but she responded!

Later Dan, the Physical Therapist that we worked with in the fall (remember the tricycle?!), came in to start rehab with Kyara. We are concerned about her muscle tone and muscle contractions so Dan is back! As much as I would love to never have seen him again, it was great to see him. Bittersweet. Dan really helped both Gunars and I feel a bit more at ease with Kyara condition. He explained that most of the improvement Kyara will make will happen in the first 3 months. Not the first 3 days. We have to be patient and keep working with Kyara. He was open and honest about the fact that he has seen patients that do not improve, but that he has also seen many patients that do improve. Time will tell what Kyara's course will be. Dan did suggest looking into rehab facilites back in Atlanta so that when Kyara is medically able, we can take her home and have the BEST treatment available. If anyone knows where the best place in Atlanta is, please let us know. We will be doing research on it, any suggestions can help us explore the possibilities.

Tonight before I left, Kyara was pretty stiff. I was playing with her hands and trying to get her to open them up more. She was moving her left leg a little. Then she stopped. I reached over and touched her left knee and asked her to bend it. She did. Ok, probable coincidence. After waiting for a minute or two I asked her to move it again...she did. Still, coincidence. Let's try this, I put my hand on Kyara right knee and asked her to move it...SHE DID! She did this for the next 10-15 minutes. I know what I saw and how much I want it to be purposeful movement and responding to commands, but I still have to hold a little excitement inside. I can assure you of this, I laid my head over her and Thanked God. I believe this was a sign and I pray that I am right and not just wishful thinking. We have had such a rough road, and everytime we feel something is going right, it has bumps, so I have to be cautious. But, I just feel in my heart and soul that Kyara was communicating with us. We will see if she reacts the same tomorrow. I pray to God and Heaven Above that she will. Small steps keep us focused on the big recovery.

Good night, precious girl. We love you so much!

32 comments:

Anonymous said...

Praise God for baby steps. You all are loved and lifted up! The Lanes

Anonymous said...

Genie, a mother's instinct is the strongest... I believe that what you saw/experienced is a true improvement. A small step to getting Kyara back! It's good to be cautiously optimistic.... but this is great news....God is being very careful with her... making sure that each improvement happens at the right time .... Lots of love
Tina, Carlos & Nico

Sarah said...

It's Sarah from Scottish Rite Day Surgery(customer service). Lynn gave me the scoop, i've been reading the blog all night. I want you to know that I am here for you!! Give her a big kiss for me and please contact me ANYTIME you need me.

Sarah
sarahbethmiles@yahoo.com

Anonymous said...

We are still praying for your sweet girl and your family. I know the Lord is taking care of Kyara and giving her the strength that she needs to recover!

The Sibley Family

Anonymous said...

Keep communicating Kyara! We love you baby girl. Thanks Genie for the update. We contine to pray for more improvements bit by bit!

We love you guys,
Laurie and Josette

Anonymous said...

Genie, I am a PT and will see if some of my friends in the Atlanta area are familiar with any Pediatric Rehab places. I will get back to you with hopefully some info. You are in my thoughts and prayers! Hooray, for knee bending!!
Love, Jessica (Fraser) Hernandez

Anonymous said...

Just wanted to let you know... We are still praying and keeping you all in our hearts...
Maria G. De Velasco Ferr and family

Anonymous said...

Dear Genie and Gunars,
We continue to lift up Kyara to God our Father, believing in the healing power of prayer. Healing may not come right away but it Will come. If you speak it, so it shall be, there is power in the tongue. Pray believing it will be done. Mothers have an instinct instilled in them like no other. We know and feel things that are supernatural to the world's limited understanding. Kyara not only was born on your birthday but she is a gift from God. Every good thing given and every perfect gift is from above, coming down from the Father...James 1:17 We choose to be patient and allow Him to work in His time. We love you all!

eetomost said...

Prayers going out to the Dzenis family from North Carolina. We heard your story through Leah T. and wanted to just write a quick note to let you know you are in our prayers!!

Leigh and Steve-nC

Anonymous said...

Way to go Kyara!!! Keep it up girl. Megan misses you and Skylar. We pray for you and your family many times a day. Tonight she even walked outside and saw a star, so she wished on it. She said she had wished that you would get better soon and come back home. We know you are trying your best and will continue to lift you up in prayer. Take care little one and do a knee lift for me, okay? :)

Skylar,
How are you sweetie? Megan misses you at school and walk and talk. She says she hopes you like your school there and have some friends to play with, but she'll be happy when you are back down here. If you want to email her you can do so at, henleyfamily@numail.org or you can just send us your email address and I will send you our phone no. You are welcome to call anytime. I know you have our no. but I wasn't sure you have it with you.

Genie and Gunars,
Cling to your faith and each other. You have an awesome family and God will see you through this.
If you need anything, please don't hesitate to ask. We are all here for you.
Love you all,
The Henley's

Anonymous said...

I hope and pray for more improvement. Stay strong!
Love, Leizl (and Mira)

Anonymous said...

I don't necessarily believe what the doctors say all the time... they are experts, but they don't necessarily take the time needed to analyze the data available and make a thorough prognosis. I believe that what you're seeing with your own eyes, experiencing first hand, are the first steps in the right direction, Genie. I don't really think anyone would deny that. God works in mysterious ways, giving you a small glimpse of hope here and there, so don't lose faith. Today will bring even better news, I'm sure.

Unknown said...

Wow, I wouldn't doubt Kyara is communicating with you. She is such a smart girl and loves you so much, I believe she would do whatever she could to show you she is trying. I am constantly amazed by her. She is a great inspiration to me. It just doesn't seem fair for hope and optimism to hurt so much. But, I think it is well worth it to be hopeful and see the positive in any of her responses, coincidence or not - just as you are doing now. We're with you all the way. You have all of our love and support.
Jeni, Zigurds and Tristan

Anonymous said...

We are praying for your sweet little girl. All that matters is she continues to make small improvements each day. Please give Kyara a kiss from me.
Misty Evans

Anonymous said...

Hooray for another set of baby steps! :) I echo what others have said (in their own way)...the doctors aren't God. Only He can know what the plan is for Kyara and your family. I hope you were able to get some quality sleep, Genie! Thanks for taking the time to keep us updated, and know that we're all still lifting Kyara and your entire family up in prayer.
Love,
Kate

heathervoet said...

Genie, Gun and Family,
You as a mother know Kyara better than anyone, and anything positive is good news. Leigh, Rick, Aimee and Sarah have been praying for Kyara and for you and they along with my parents want you to know that you are always in their thoughts (ours too of course!). SO from WI to G'ville the love and prayers continue. Have faith, stay strong and don't be afraid to lean on friends when you need to. We love you!
Heather and Jimbo

ireina said...

Genie, you have to just trust in God that he will do the miracle in her. Forget the EEG for a second and just focus on her, what you see her doing, that is what matters and she will recover. Don't let the doctors bring you down you can see her improvement for yourself and that is all that matters. I am going to speak to the physical therapist Paul had, she lives here close by to us and she probably knows of a good facility for Kyara when she is ready. I will let you know. We all continue praying for all of you and whether you choose to believe it or not you are very strong. God gives you the strength to sit by your child and pray for her and talk to her and give her that love she so much needs. A mother who weren't strong would not be there with her, so that means you are. Lots of love, Ivette

Anonymous said...

GNo coincidence.The lord is working for you all.Trust me, doctors do not know everything! Great news!
The Vaughn's

Anonymous said...

Hebrews 12:1
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.

You are covered in prayer surrounded by believers and drenched in the love of God. Keep on keepin' on. Don't let the clinical reports hinder you. The Dr's can only quote the facts and hard data they don't know what God knows. She will persevere she will win this race!
You are an inspiration!

Anonymous said...

Hi, I was asked to pray for your little girl and have been reading your updates ever since. I can see where your daughter(s) get their strength. You and your family. I am praying for Kyara and am asking everyone I know to pray also. (The request is even on my facebook page) With as many prayers going up for Kyara the steps we consider little could be huge for Kyara. God is hearing us and letting all know that he is in control.

Unknown said...

Hi,a friend sent me a link to this page and I sat here and read the whole thing last night. As a mother of three also, I am amazed at how strong you and your little daughter are. You are so much more than a mommy to your kids. I can't even think of the words because it's way more than just amazing. I will be praying for your daughter and family. Also, wanted to say that I think Kyara shows more response with you because she knows you and is comfortable with you. She knows you understand her, so keep doing what you're doing. Have faith and I'm sure she will improve.

Fran said...

Genie I agree with you that Kyara knows what you are asking. Kyara knows your touch and voice better than anyone's and it is not surprising that she would respond to you before than others. Machines and Doctors can make mistakes but you know what she is doing for you no mistake. Keep the hope and faith she is trying to send to you. Sending Smiles and Hugs with our prayers.
Fran & Mike

Anonymous said...

To the Dzenis family:

We are so sorry to hear what Kyara and your famly are going through.
You are in our thoughts and prayers.

We miss you guys!
Ann and Tracy (Anesthesia Dept at SR)

Anonymous said...

It's Emily, Robert Rawlings fiance. I am a physical therapist specializing in neuro rehab in Franklin, TN. I have done some research and check into Magnolia Pediatrics Therapy in Marietta, GA. Also look into the Shepherd Center-more for adults but very good. If you need anything, don't hesitate to ask. I have good resources. You all are in our thoughts and prayers!!

Anonymous said...

Genie, Gunars, & Skylar
Just heard what's going on today at karate. We send you our love and our prayers to God for your baby girl.
Love
Brian, Martha and Ben

Anonymous said...

Genie- I have followed Kyara's
progress thru your Dad the last several years and had just spoken
with him about your trip last week. I was informed about your Care Page today and I wanted to let you know that we are thinking
about you. Kyara will continue to be in our daily prayers.
Bob and Susan Burroughs

Anonymous said...

Genie, if you can feel and sense what Kyara is transitting, it is the best way to know how she is feeling, Kyara is very strong girl with good determination, I am sure she will recover from this one too.
Sorry I did not have computer working for couple days to send a message.
Big kiss to every one, love

Unknown said...

Happy birthday Kassey!

Lots of prayers, Kyara!

Love,

Michelle

Anonymous said...

Thinking of you guys tonight. Hope tomorrow will bring some encouraging news. I know you will be glad to see Mike,
Love to all,
Carolyn and BJ

Anonymous said...

Genie, our thoughts and prayers are with all of you. You all have been so strong throughout - my heart just aches for you. Hopefully, tomorrow will be a brighter day for Kyara.

The Bracco's

Gary & Cristen said...

Genie, I just googled Kyara to get your web address again and one of the links that was brought up was the picture of her sitting on Gunars shoulders at the Taste of Atlanta. I was just overwhelmed by her sweet spirit in the picture. Kirby, Halle and Natalie (Gary and I too) are praying SO desperately for her little body and mind to come to full healing and recovery. I so wish could do or say something that would take away the pain. Know that you are remembered in IOWA.
Cristen Schmalz

Anonymous said...

Genie,
We are thinking of you guys every single day from here at scottish rite day surgery. Kyara and your whole family are in our thoughts and prayers. We are checking her blog every day and this last picture looks great. More like the kyara we know. By the way, did you know that scottish rite has a great rehab facility.

Love,
Jamie,Lisa,Becky,Kay,Allsion,and all your other friends at Scottish Rite.