Thank you so much for the Valentines! They were perfect for the party and a big hit with the patients at the hospital. We took some down to the PICU, too, and Skylar was able to pass them out to patients that could not get out of bed to go to the Valentine's Party. It was very nice. We also passed out Valentines at the RMH and the parents at the RMH were very appreciative of the thought.
Kyara is STILL having a hard time with sleep. Almost like clock-work, she falls asleep at 6:30 and wakes at 10:30 pm. She is awake the rest of the night. The poor girl is exhausted. Gunars and I feel that it is an issue of tone. When we stretch her and break her muscle tone, she immediately falls asleep, but it doesn't last. She stiffens back up and is awake again. It is very frustrating. I would love for her to sleep. It seems like the few nights that she got good rest she responded so much better the next morning. She needs the rest to recover...
We are also monkeying with her feeds. We would like for her to have more "free time" so we are increasing her feeds at times during the day to work towards bolus feeds. Bolus feeds would mean more of a breakfast, lunch, and dinner feeding, instead of continuous feeds. Dr. Coran has also come in this weekend and we are discussing her next procedure. This scares the stew out of me. I know that she needs to be dilated again, but I don't want them to touch her! I have to let go of this fear and know that God will take care of her, but it is very difficult. This will not be done for a few weeks still, but I know it is coming up. When they do the dilation, Dr. Coran will probably also put in a J-tube. If you remember, we had the gastric pull up done so that she would not have a G-tube anymore. Now it looks like we are going back to the tube. The J-tube will be more of a secondary feeding tube, we will keep the NG tube and feed through it because it goes in the stomach, but if it gets clogged or pulled when we get home, we need another route to feed and medicate Kyara. This is why we will have the J-tube placed. It will be alot like her G-tube, but it will be in her intestines instead of her stomach. Total this surgery with the dilation will take a 2-4 hours. I am scared out of my mind about the procedure. I am also a bit mad. Not only are we going to still have a tube, but now my daughter also has brain injury. Why did we do the procedure in the first place? Of course, hindsight is 20/20. We were doing what we felt was best for Kyara, and if things had gone well, we would have been singing God and Dr. Coran's praises.
God is good, he saved Kyara's life more than once. She could have easily died when she was two and drank the chemical. But God saved her then. He saved her again on January 21st. Only 50% of kids who go into cardiac arrest survive and the doctors did CPR for 45 minutes before getting her back. God has a plan, her time her on earth was not done yet. If God wanted her back, He would have welcomed her into His kingdom with open arms. We are going to keep pushing forward with her rehab, pushing the doctors on finding the right combo of medications to help her get rest during the night, and pushing Kyara towards recognizing us, her environment, and responding to us.
11 comments:
what fun party and what a blessing to have so many people send you so many valentines! I am sure you felt the love on this valentines day.
Your Girls are beautiful!
I pray Kyara can get rest. May God continue to bless you all.
Just wanted to stop by to say hi and that I've been thinking of you all. I've gotten a bit behind on reading the blog, but you haven't been far from my mind.
I love the picture from the party...so sweet.
Keep your chin up....you've got an excellent point--God has a plan for all of it (Jer. 29:11), but more importantly...a verse I heard this morning in church that I'm sure I've heard before but didn't remember--Matthew 28:20b--"I am with you always, to the end of the age." Even when you're questioning thing, He's still there listening and loving. :)
We are so glad the girls had a great valentine's day! Dylan searched high and low for the perfect Valentine bear for the Kyara & her sisters. He told me the perfect bear would make her feel all better! We are praying hard for Kyara and the entire family. She is a precious gift from god that has touched so many lives, and I know he will lead you through this difficult time. Stay strong and keep the faith.
Love,
Danielle & Dylan Albritton (&family)
I am so glad you were able to have a good time at the party! Joshua had such fun making Kyara's card. In class they "sing" the name of each child to practice how to spell the names. Joshua sings Kyara's name all the time! We will keep praying your sweet girl continues to recover. Hang in there!
The Sibley Family
I am sorry to hear that Kyara is going to need a J-tube, as you know Paul had a NG tube for 5 months when he was first born and then a G-tube till July of 2008. One time he had really bad reflex and they thought of having to put a J-tube but thank God the doctor put him on a medication that helped with the reflex and that was not necessary. I pretty much became his nurse in changing both NG and G tube at home. You pretty much get used to it, so please don't feel afraid it is not as bad as it seems and you do what you have to. Hopefully Kyara soon will be able to rest and do better in therapy. Please don't hesitate to call me if you ever need someone to talk to who can understand what you are going through. I totally do. Even though Paul and Kyara have totally different issues we share the same sentiments in being upset with what is happening to our children and feeling depressed at times. It is totally normal and understandable. Anyway, I am here anytime you need an ear. May God bless you all.
Love,
Ivette
Thank you for the new picture. I am glad you all found a little enjoyment on valentine's day. The shirts are so cute, did someone make them for the girls?
I don't blame you for your fear and anger. I can't imagine how you are feeling. We will be praying HARD for Kyara and the rest of the family. Megan is out of school this week, so tell Skylar to be on the lookout for emails!
The Henley's
Genie,
That is great that they used some of the Valentines as decorations. I'm sure that Skylar loved handing out the cards to the ones who could not come to the party - she is such a loving girl. Kyara somehow needs to get some sleep so that the OT/PT are beneficial. I know you know that to, but c'mon doctors - figure out the meds. You are right, God has a plan (wish he would share what it is). We are still thinking about all of you and are continuing to pray! Love and hugs to all.
Genie and family, we are glad that you all had a nice Valetine's Day and that Gunars was able to come up and spend some much needed quality time with you and the girls. It is frustrating to think of all the "what ifs" and "whys", but you must focus on the present and continue to work toward the future, blessing what you have. Kyara is that blessing and she will certainly make a difference in this world, one way or another. She already has, if you ask us... God bless you all on this Valentine's weekend and hope that you all get some much needed rest too. We will continue to pray for your family and Kyara's swift recovery.
Genie, I just thought I had an idea of what it is like to take care of someone in the Hospital but you have taught me what long term care and caring is really like. I must agree that God has a plan but we never have understood the what or why especially when it involves children. We love you and Kyara so much and just wish there was something we could do to really help! Try to stay strong and know that your words mean a lot to everyone who is following your postings. Someone or several must be benefiting from your and Gods messages.
Love Ya'll Uncle John and Aunt Judy
Genie,
We are all praying for Kyara and thinking of you often. Please let Gunars know that he has a good friend in Steve at work to rely on or lend an ear to if he needs it.
-Debbie and Steve Gulas
We are so glad you had a great time at the party and handing out valentines. We love the t-shirts the girls were wearing and glad that they could enjoy them. We are still praying for all of you and especially Kyara to continuing improving. We hope she will get some much needed rest soon so that all of her OT/PT can benefit her. Keep holding strong God will soon let you know what His plan will be for her. Thanks for keeping us posted.
Love to all. Hugs and Kisses to the girls..
Josette and Laurie
P.S. If we can do anything don't hesitate to call..
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