June 5th. A week from today. Wow. How should I feel about this one? It has been so long! I feel prepared to take care of Kyara. I am ready for us all to be under one roof again. I am nervous about how each day is going to go. I am disappointed that she is leaving and not going to get the intense therapy each day. I am excited to be able to do my own thing with her. I am angry that she has not improved more during her time at the hospital, but I am hopeful that being at home will help stimulate her and help with her recovery. I am concerned that by sending her home, people are writing her off. I have so many different emotions going, I don't know how to descibe them all. I guess we will just wait and see. Hasn't that been the rule since January? It is only appropriate that we continue... waiting. See what God has in store for us next.
Good news... Kyara has pooped some on the potty!! 3 days in a row she has gone on the potty. I think we are catching her at the right time, she doesn't go everytime we put her on, but she has gone on the potty 3 times!! YEA!! It is a start! Today she pressed buttons on command to turn a light machine on and off.
She also got the loaner chair that we will take home until her wheelchair is ready (could be months!) The loaner chair is HUGE and doesn't fit her, so I hope her custom chair will be ready soon.
This week we will be crazy busy get ready for Kyara to come home. Home-health is bringing her supplies over, including a hospital bed, sometime this week. I am not sure how we are going to fit everything in her bedroom. She used to share with Skylar and I am trying to figure out how we are going to work all of this. The girls' bedrooms are small (10x10), I think I need to empty the room out until they get the hospital bed in it and then see how much room we have left for a dresser and stuff. I think Skylar and Kassey are going to be sharing a room now, it just makes more sense. I know it will be ok...
Kyara Dzenis
Friday, May 29, 2009
Sunday, May 24, 2009
Happy Memorial Day!
I want to thank all of those who serve(d) for our country! Tomorrow is a great day to celebrate the sacrifice that has been made for our freedom. Thank you!
Kyara is doing well. She continues to become more aware of her environment and has moments that she appears to be answering questions with small head nods or shakes of her head. They seem to be appropriae to answers of "yes/no" questions, but we are not really sure. It is so hard to tell what you are seeing. I like to think that these "conincidences" are coming more frequently and consistently and that I will soon be able to say..."without a doubt, she is responding!" This week she has had serial casting done on her right arm. She was ok with the first cast which stopped at her wrist. The more recent cast comes down into her hand and she has not been so thrilled with this one. It will come off on Tuesday, and they will start casting the left arm. This is suppose to help with her range of motion in her elbows, wrists, and fingers. I hope it works. Right now she is still pulling her left arm up. She pulls her hand up to her chin at times. In fact the other day, I thought she was sucking on her fingers. Oh, that must be comforting to her... well, then she started to cry. Don't you know, she had clamped down on her pinky finger with her teeth! So much for comforting!
In speech, Kyara is working on cognitive skills and on moving her tongue. They are having her click her tongue and asking her to stick her tongue out. The speech therapist uses a sucker to entice Kyara and to give her some tastes. Speaking of taste, they wanted to start trying to feed Kyara by mouth a little, so the doctors ordered a saliva test to make sure she was swallowing her saliva and that it was not going into her lungs before allowing the therapist to give her any food. They did the test on Thursday. We got results on Friday. Well, Kyara did not pass the test. Her saliva ended up in her lungs. I feel it was an unfair test because she was flat on her back during and after the test. Well, in reality, she is almost NEVER flat on her back. Because of her gastric pullup, we always have her propped up to some degree. Also, she is not going to be fed lying down, so I think the test was unfair in her situation. Of course, I don't want them to do anything that would be dangerous for Kyara, but I would be interested to see if the results were different if she was sitting up instead of lying flat. My understanding is that we will do some more tests this week, so please pray for success.
Waiting was the subject in church this morning. Seems appropriate. I think I have heard enough about waiting in the past 5 months to drive me crazy. My job and my goal is to wait patiently for God to decided the perfect time to allow Kyara to come out. It says in the bible that Jesus tells his disciples something along the lines of.... it is not for you to know when, only that it will happen.~ I am working on releasing my frustrations, anger, and concern, and putting my trust in God and His promise.
Kyara is doing well. She continues to become more aware of her environment and has moments that she appears to be answering questions with small head nods or shakes of her head. They seem to be appropriae to answers of "yes/no" questions, but we are not really sure. It is so hard to tell what you are seeing. I like to think that these "conincidences" are coming more frequently and consistently and that I will soon be able to say..."without a doubt, she is responding!" This week she has had serial casting done on her right arm. She was ok with the first cast which stopped at her wrist. The more recent cast comes down into her hand and she has not been so thrilled with this one. It will come off on Tuesday, and they will start casting the left arm. This is suppose to help with her range of motion in her elbows, wrists, and fingers. I hope it works. Right now she is still pulling her left arm up. She pulls her hand up to her chin at times. In fact the other day, I thought she was sucking on her fingers. Oh, that must be comforting to her... well, then she started to cry. Don't you know, she had clamped down on her pinky finger with her teeth! So much for comforting!
In speech, Kyara is working on cognitive skills and on moving her tongue. They are having her click her tongue and asking her to stick her tongue out. The speech therapist uses a sucker to entice Kyara and to give her some tastes. Speaking of taste, they wanted to start trying to feed Kyara by mouth a little, so the doctors ordered a saliva test to make sure she was swallowing her saliva and that it was not going into her lungs before allowing the therapist to give her any food. They did the test on Thursday. We got results on Friday. Well, Kyara did not pass the test. Her saliva ended up in her lungs. I feel it was an unfair test because she was flat on her back during and after the test. Well, in reality, she is almost NEVER flat on her back. Because of her gastric pullup, we always have her propped up to some degree. Also, she is not going to be fed lying down, so I think the test was unfair in her situation. Of course, I don't want them to do anything that would be dangerous for Kyara, but I would be interested to see if the results were different if she was sitting up instead of lying flat. My understanding is that we will do some more tests this week, so please pray for success.
Waiting was the subject in church this morning. Seems appropriate. I think I have heard enough about waiting in the past 5 months to drive me crazy. My job and my goal is to wait patiently for God to decided the perfect time to allow Kyara to come out. It says in the bible that Jesus tells his disciples something along the lines of.... it is not for you to know when, only that it will happen.~ I am working on releasing my frustrations, anger, and concern, and putting my trust in God and His promise.
Monday, May 18, 2009
Busy Weekend
I know, I have been falling down on the job of the blog writer. To be honest, I haven't had the interest in writing lately, but I am going to get back into it. I think it is a good release for me as well as helps to keep everyone informed of Kyara's progress. I have also had times where I have looked back at it to let doctors know when she had a procedure done. So it is useful in many ways.
Friday Kyara had botox done in her elbows and forearm to help with her fingers. Since getting the baclofen pump her legs have been much looser, but her arms are tighter, so I hope the botox helps. They are goingt to start serial casting her elbows this week, too. This will give a constant stretch to her arms and hopefully help straighten them back out.
Kyara seems to be becoming more and more aware of her environment and she is getting stronger. After a week in the bed not allowed to be moved, she was VERY weak. We are seeing improvements in her strength each day, though. She still is not as strong as she appeared before the pump, but we are told that she was using alot of tone to move then, and she can't do that now. So, it is now up to her and her muscles to do purposefull movements.
Yesterday she was kicking her leg up to press a button that had Skylar's voice on it. Saturday, Kassey, Skylar, and I went to the hospital to eat dinner with Gunars and Kyara. She seemed to really respond to her sisters and lifted her head up a couple of times to look at them and look around. We are praying these things build on each other and Kyara continues to get stronger and stronger.
One last note: HAPPY 7TH BIRTHDAY, SKYLAR!!!!! I can't believe she is already 7! Where did the time go? We are so very proud of her. She is a fantastic daughter and biggest sister!
Friday Kyara had botox done in her elbows and forearm to help with her fingers. Since getting the baclofen pump her legs have been much looser, but her arms are tighter, so I hope the botox helps. They are goingt to start serial casting her elbows this week, too. This will give a constant stretch to her arms and hopefully help straighten them back out.
Kyara seems to be becoming more and more aware of her environment and she is getting stronger. After a week in the bed not allowed to be moved, she was VERY weak. We are seeing improvements in her strength each day, though. She still is not as strong as she appeared before the pump, but we are told that she was using alot of tone to move then, and she can't do that now. So, it is now up to her and her muscles to do purposefull movements.
Yesterday she was kicking her leg up to press a button that had Skylar's voice on it. Saturday, Kassey, Skylar, and I went to the hospital to eat dinner with Gunars and Kyara. She seemed to really respond to her sisters and lifted her head up a couple of times to look at them and look around. We are praying these things build on each other and Kyara continues to get stronger and stronger.
One last note: HAPPY 7TH BIRTHDAY, SKYLAR!!!!! I can't believe she is already 7! Where did the time go? We are so very proud of her. She is a fantastic daughter and biggest sister!
Thursday, May 14, 2009
Back in the Gym Again
It is Thursday and we are finally back in the gym again. This is good for all of us. I like seeing Kyara working in the gym and getting out of the room. I think the walls start to close down on us when we stay in the room for too long. With that being said, I am working on getting myself better, so I have been letting my parents and Luz Estela stay with Kyara more. I am trying to get more rest, and revive my engine for the next haul before we get to take Kyara home.
The rehab doctors have decided to botox Kyara's forearms, elbows, and flexors of her fingers tomorrow. She is still very tight, and the baclofen pump is not having the effect we had hoped for in the arm area. Her legs are looking pretty good. I noticed more stiffness in her left leg today when I tried to bend her knees, but they are still adjusting the rate of the pump.
Today Kyara had a good day in therapy. She was "kicking" a ball on command. She would kick her leg out 2-3 inches. She did better with her left leg than her right, but it was still good. She worked on head control and rolling over. Both of these things are more difficult now for a number of reasons (I am guessing, but they make sense to me!) First off, she has been in bed, unable to be moved for a week. Also, the baclofen pump takes away alot of her tone. She had been using the tone to assist her movements, so with the tone gone, it just shows how weak her muscles really are. Time for bodybuilding! In speech today she used to the switch button to let the therapist know she had a dirty diaper. Lindsay had a big button that would say "yes" when you push it. She asked Kyara a number of questions because Kyara was fussy and she was trying to figure out what was wrong. After a few questions with no response, Bunny said "Ask about her diaper." So Lindsay asked, and Kyara pressed the button. Sure enough, she had pooped and peed. So yea! She was letting them know what was wrong.
Overall, I am glad to get back into rehab. I appreciate everyone's concern for Kyara and for the rest of our family. We are very fortunate to have the love and support of so many. It has really meant alot, especially for the last week. I praise God for the progress Kyara has made and look forward to seeing more steps in the positive direction.
The rehab doctors have decided to botox Kyara's forearms, elbows, and flexors of her fingers tomorrow. She is still very tight, and the baclofen pump is not having the effect we had hoped for in the arm area. Her legs are looking pretty good. I noticed more stiffness in her left leg today when I tried to bend her knees, but they are still adjusting the rate of the pump.
Today Kyara had a good day in therapy. She was "kicking" a ball on command. She would kick her leg out 2-3 inches. She did better with her left leg than her right, but it was still good. She worked on head control and rolling over. Both of these things are more difficult now for a number of reasons (I am guessing, but they make sense to me!) First off, she has been in bed, unable to be moved for a week. Also, the baclofen pump takes away alot of her tone. She had been using the tone to assist her movements, so with the tone gone, it just shows how weak her muscles really are. Time for bodybuilding! In speech today she used to the switch button to let the therapist know she had a dirty diaper. Lindsay had a big button that would say "yes" when you push it. She asked Kyara a number of questions because Kyara was fussy and she was trying to figure out what was wrong. After a few questions with no response, Bunny said "Ask about her diaper." So Lindsay asked, and Kyara pressed the button. Sure enough, she had pooped and peed. So yea! She was letting them know what was wrong.
Overall, I am glad to get back into rehab. I appreciate everyone's concern for Kyara and for the rest of our family. We are very fortunate to have the love and support of so many. It has really meant alot, especially for the last week. I praise God for the progress Kyara has made and look forward to seeing more steps in the positive direction.
Monday, May 11, 2009
Monday, and Still No Therapy
It is Monday, and they had said that she could resume therapy today, but as my title suggest, it did not happen. The neurosurgeon came in this morning and was surprised that she did not have bedside therapy this weekend. He said to get bedside therapy today and tomorrow and then she could go back to the gym on Wednesday. Of course, by the time orders got in, she didn't get any therapy today because she was not scheduled. Now I am told they will not get her back in the gym until Thursday. I am VERY frustrated with this.
She had the dressing on her incisions removed today. Praise God they look good. She has 14 staples in her abdomen and 5 in her back. The incision sights are clean and look great, though. I don't knwo when they are going to remove the staples, but I guess they will let me know when its time.
Kyara has been up and down lately. The doctors are still adjusting the baclofen amounts while they decreased most of her other medications. She is off the methadone and valium, the clonodine patch is off, and there is one or two other meds that she is off, too. Klonopin is the next drug to go off, although, the rehab doc on service now is talking about increasing it because it is suppose to help with agitation. And talk about agitation, when Kyara is upset, she has some lungs on her!
I am not fairing as well lately. I am not sure why, but I am feeling much more heartbroken and depressed lately than I have in a while. This weekend has been tough with it being Mother's Day and seeing my family and everything. I am trying my best to play with Skylar and Kassey and stay positive in all respects, but I am having a hard time with it. In fact, I had to call my parents last night to relieve me at the hospital because I could not get myself together. I don't want to have negative vibes around Kyara, so my dad came up and stayed and I went home and had Gunars just hold me. I think having Kyara just lying in the bed again has really had an effect on me. I am tired, and I am trying to take care of myself. I am praying that God will comfort us and heal Kyara. I am trying to let go and let God take over, but I am having a VERY hard time with that. How do you just hand it over and not worry? I know that is what I should be doing, but I don't know how.
She had the dressing on her incisions removed today. Praise God they look good. She has 14 staples in her abdomen and 5 in her back. The incision sights are clean and look great, though. I don't knwo when they are going to remove the staples, but I guess they will let me know when its time.
Kyara has been up and down lately. The doctors are still adjusting the baclofen amounts while they decreased most of her other medications. She is off the methadone and valium, the clonodine patch is off, and there is one or two other meds that she is off, too. Klonopin is the next drug to go off, although, the rehab doc on service now is talking about increasing it because it is suppose to help with agitation. And talk about agitation, when Kyara is upset, she has some lungs on her!
I am not fairing as well lately. I am not sure why, but I am feeling much more heartbroken and depressed lately than I have in a while. This weekend has been tough with it being Mother's Day and seeing my family and everything. I am trying my best to play with Skylar and Kassey and stay positive in all respects, but I am having a hard time with it. In fact, I had to call my parents last night to relieve me at the hospital because I could not get myself together. I don't want to have negative vibes around Kyara, so my dad came up and stayed and I went home and had Gunars just hold me. I think having Kyara just lying in the bed again has really had an effect on me. I am tired, and I am trying to take care of myself. I am praying that God will comfort us and heal Kyara. I am trying to let go and let God take over, but I am having a VERY hard time with that. How do you just hand it over and not worry? I know that is what I should be doing, but I don't know how.
Saturday, May 9, 2009
Happy Mother's Day!!!
To all the mothers out there, Happy Mother's Day!!! It is a day for rejoicing in the beauty of being a mother! Have a wonderful day!
Kyara is doing better with the baclofen. Still not perfect in terms of tone, but better. Legs are a ton better and arms are getting there. She was moving and opening and closing her fingers tonight, so that is good signs. Since she has been bed ridden since Wednesday, Kyara is starting to swell some. Her face is definetely swollen and her feet are tight, like they have a lot of fluid pooling in them. The doctors assure me that when she gets up on Monday and starts moving again, this issue will start to resolve. She is also still crying and fussing a good bit during the day. This can be seen in two ways. Either this is just the way it is, or she is waking up and trying to communicate with us. I pray that it is that she is trying to communicate and this is a phase she is still going through. The doctor said this is his "hope." His hope? What is that suppose to mean? How do I take that? I hope to win the lottery. That doesn't mean my chances are very good. I am going to pray that Kyara is trying to communicate and that this is a step towards her waking up more. I think praying is better than hoping.
I had a nice dinner at my parents' house tonight with my brothers and their families, my parents, and my Nannie and Papa (Bunny's mom and dad). It was once again a very bittersweet time for me. I loved seeing all the cousins out playing together, then would cry realizing that one cousin was missing. Gunars was not eating with us, Kyara was not there, and so the night felt wrong to me. I know that Skylar had a good time, though. She told me last night that she is sometimes very lonely. Can I blame her? She said she can't wait for Kyara to come home so she will have someone to play with. Oh, my heart sank. I tried to explain that Kyara is still recovering and that when she comes home, she is not going to be like she used to be. How do you explain to a 6 year old? I don't know. I have had a tough weekend at home. Gunars has been spending the nights at the hospital and I just miss him so much. Although we see each other a little here, a little there, it is not enough.
Ok, enough complaining. Get it together, girl! There is much to be thankful for. I have a wonderful husband, 2 healthy, happy girls, Kyara is responding to the baclofen better each day, I have the love and support of my family and friends. God is watching over us, and leading us towards brighter days.
Kyara is doing better with the baclofen. Still not perfect in terms of tone, but better. Legs are a ton better and arms are getting there. She was moving and opening and closing her fingers tonight, so that is good signs. Since she has been bed ridden since Wednesday, Kyara is starting to swell some. Her face is definetely swollen and her feet are tight, like they have a lot of fluid pooling in them. The doctors assure me that when she gets up on Monday and starts moving again, this issue will start to resolve. She is also still crying and fussing a good bit during the day. This can be seen in two ways. Either this is just the way it is, or she is waking up and trying to communicate with us. I pray that it is that she is trying to communicate and this is a phase she is still going through. The doctor said this is his "hope." His hope? What is that suppose to mean? How do I take that? I hope to win the lottery. That doesn't mean my chances are very good. I am going to pray that Kyara is trying to communicate and that this is a step towards her waking up more. I think praying is better than hoping.
I had a nice dinner at my parents' house tonight with my brothers and their families, my parents, and my Nannie and Papa (Bunny's mom and dad). It was once again a very bittersweet time for me. I loved seeing all the cousins out playing together, then would cry realizing that one cousin was missing. Gunars was not eating with us, Kyara was not there, and so the night felt wrong to me. I know that Skylar had a good time, though. She told me last night that she is sometimes very lonely. Can I blame her? She said she can't wait for Kyara to come home so she will have someone to play with. Oh, my heart sank. I tried to explain that Kyara is still recovering and that when she comes home, she is not going to be like she used to be. How do you explain to a 6 year old? I don't know. I have had a tough weekend at home. Gunars has been spending the nights at the hospital and I just miss him so much. Although we see each other a little here, a little there, it is not enough.
Ok, enough complaining. Get it together, girl! There is much to be thankful for. I have a wonderful husband, 2 healthy, happy girls, Kyara is responding to the baclofen better each day, I have the love and support of my family and friends. God is watching over us, and leading us towards brighter days.
Thursday, May 7, 2009
Day After Surgery
I wrote a long post about 2 hours ago and for some reason, I was not able to post it. Since it didn't save it, I will try to summarize. Of course the other one was brilliant (haha), so this one will be a sorry replacement. :)
Last night my mom stayed with Kyara so I could get home to a doctor's appointment. Everything is fine, just need some of my own medication. Dealing with everything that has gone on here has really worn on my nerves and I am finding I have a hard time controlling my moods. When we are in therapy and Kyara does something new or follows commands, then I am on cloud nine, when we are back in the room alone, at night when she is crying and I can't calm her, or even on the drive home when my mind wanders I can get into a very low sad state. I am working on staying positive and trying to block the negative thoughts that butt their way in.
Kyara slept most of the night last night and half the day today. She is still recovering from the baclofen pump surgery and she will be on bed rest until Monday. No therapies. I don't understand why she can't have at least speech come in. She doesn't have to move for speech. Well, I am going to ask about that in the morning. So far, she seems to be recovering well. We are still on the watch for infection, and please pray that she doesn't get one. That would mean surgery to remove the pump and then not being able to replace it for MONTHS! I can already tell a difference in her legs when I changed her pants. Much easier. Her arms and hands are still very tight, though, so the doctors still have work to do with the meds. As the doctors go up on the baclofen, we are coming down on some of the other meds: valium and dantrium. She also had her last dose of methadone tonight! YEA! I am glad we are able to start taking some of these drugs off! I am praying that Kyara has a peaceful night tonight and a good day tomorrow.
I was home most of the day today. Since Kyara was sleeping soundly, and my mom was with her, I took the opprotunity to stay with Kassey and Skylar. Kassey was actually sick this morning, so I ended up taking her to the doctors. She liked it much better today than last week: no shots! After three visits to the pharmacy, they finally had her presciption at 5:00 this afternoon. I was also able to get Skylar off the bus today. God, I have missed doing that! Thank you for the chance today. I think Skylar was pleasantly surprised, too. She asked if I would be there tomorrow when she got off the bus. "Sorry, Sweetie, but no." :( I took Skylar to karate and ate dinner with the girls, Gunars and Luz Estela before heading back to the hospital tonight. My mom was a trooper staying all day for me. I think she enjoyed the quiet time to read while Kyara was sleeping.
So, tonight I am thanking God for the blessings He gave me today. I was able to spend most of the day with Kassey and Skylar. I was able to step back into the real world, for a day and do the things I would have normally done. It is amazing how much I have missed these little things. Getting Skylar off the bus, taking Kassey to the doctor, doing the "Mom" things. I am praising God for the change in Kyara's legs and I am asking Him to lay His hands on Kyara. To allow her brain to make the connections that will bring her back to us. I pray He comforts us as we push forward each day, that we can see His miracles and take the time to notice the blessings He gives us each day.
Last night my mom stayed with Kyara so I could get home to a doctor's appointment. Everything is fine, just need some of my own medication. Dealing with everything that has gone on here has really worn on my nerves and I am finding I have a hard time controlling my moods. When we are in therapy and Kyara does something new or follows commands, then I am on cloud nine, when we are back in the room alone, at night when she is crying and I can't calm her, or even on the drive home when my mind wanders I can get into a very low sad state. I am working on staying positive and trying to block the negative thoughts that butt their way in.
Kyara slept most of the night last night and half the day today. She is still recovering from the baclofen pump surgery and she will be on bed rest until Monday. No therapies. I don't understand why she can't have at least speech come in. She doesn't have to move for speech. Well, I am going to ask about that in the morning. So far, she seems to be recovering well. We are still on the watch for infection, and please pray that she doesn't get one. That would mean surgery to remove the pump and then not being able to replace it for MONTHS! I can already tell a difference in her legs when I changed her pants. Much easier. Her arms and hands are still very tight, though, so the doctors still have work to do with the meds. As the doctors go up on the baclofen, we are coming down on some of the other meds: valium and dantrium. She also had her last dose of methadone tonight! YEA! I am glad we are able to start taking some of these drugs off! I am praying that Kyara has a peaceful night tonight and a good day tomorrow.
I was home most of the day today. Since Kyara was sleeping soundly, and my mom was with her, I took the opprotunity to stay with Kassey and Skylar. Kassey was actually sick this morning, so I ended up taking her to the doctors. She liked it much better today than last week: no shots! After three visits to the pharmacy, they finally had her presciption at 5:00 this afternoon. I was also able to get Skylar off the bus today. God, I have missed doing that! Thank you for the chance today. I think Skylar was pleasantly surprised, too. She asked if I would be there tomorrow when she got off the bus. "Sorry, Sweetie, but no." :( I took Skylar to karate and ate dinner with the girls, Gunars and Luz Estela before heading back to the hospital tonight. My mom was a trooper staying all day for me. I think she enjoyed the quiet time to read while Kyara was sleeping.
So, tonight I am thanking God for the blessings He gave me today. I was able to spend most of the day with Kassey and Skylar. I was able to step back into the real world, for a day and do the things I would have normally done. It is amazing how much I have missed these little things. Getting Skylar off the bus, taking Kassey to the doctor, doing the "Mom" things. I am praising God for the change in Kyara's legs and I am asking Him to lay His hands on Kyara. To allow her brain to make the connections that will bring her back to us. I pray He comforts us as we push forward each day, that we can see His miracles and take the time to notice the blessings He gives us each day.
Wednesday, May 6, 2009
Surgery is Over
Kyara's baclofen pump surgery is done. She is back in the room with me and snoozing. This is good, because she did not sleep last night. I guess she was as nervous as I was! We were up together from 2:45 am on. Everything went well with the surgery, so now we have to wait for the recovery to take place and for the doctors to find the right dose of medication. Pray it will go smoothly and quickly!
She's waking up...not a happy camper! :(
She's waking up...not a happy camper! :(
Tuesday, May 5, 2009
Baclofen Pump Surgery
Well, I have been waiting and talking, talking and waiting for this day to arrive. Tomorrow Kyara goes in at 9am for her baclofen pump surgery. After all of the wanting and waiting, I am now TERRIFIED of another surgery. I am praying that the surgery AND the RECOVERY will go smoothly. Kyara has not been known in the past to recovery quickly from surgeries and I pray that this time she will beat those odds! At this point, I am nervous about our decision to put her through this surgery. I saw the trial and how much more relaxed she was, but this is an elective procedure. If things don't go well, will I be able to live with myself? I do know that she is uncomfortable alot of the time, and that the best thing for her is to get the pump. So - I will be praying hard tonight and in the morning that God will watch over my little one and hold her tight tomorrow. He knows what is in her best interest and I thank Him each and every day.
I am rambling again. I hate feeling like I am fighting with myself over Kyara's care, but who wouldn't. You have to weigh the pros and the cons. The risks and the benefits. I pray that this time the benefits will win out. That is what is suppose to happen, after all.
Today Kyara had a decent day in therapy. She worked some more on rolling and holding her head up. She also had some testing done. The Coma Recovery Scale is done each Tuesday to see if she is improving each week. She has certain tasks that they need for her to do to get points on the test. She improved this week by 3 points! Yea! Sadly, she is still considered by the test to be in a vegetative state. I don't know if I agree with that. I don't think she is wide awake and alert to her environment all of the time, but I don't think she is vegetative either. She is beginning to respond to commands better (not great all the time, but better), she is localizing touch, she is fixating on objects, and she is beginning to have more puposeful movements. What I have to remember is that the test is like a snapshot picture taken once a week. She has done things in therapy sessions that she did not do during "test time", and these things cannot be counted (even though the therapist doing the test are the same ones that have seen her do tasks during therapy session). This is VERY frustrating to me. I wonder how Kyara will do next week and the week after, after the baclofen pump is in and they have a chance to get the medications right. I hope she will have better motor responses. Either way, in the long run, I know she is improving each week and the score is still showing that. So, what more can you say? Keep working hard, Kyara.
I met a couple of other families who have children here in the rehab unit. The families are all very nice and the kids here are amazing. The kids range from burn victims, car accident survivors, a car surfing survivor, ATV accident, and anoxic brain injuries. The improvements that the kids make is astounding. I can't believe my eyes. God works miracles here everyday!
I am rambling again. I hate feeling like I am fighting with myself over Kyara's care, but who wouldn't. You have to weigh the pros and the cons. The risks and the benefits. I pray that this time the benefits will win out. That is what is suppose to happen, after all.
Today Kyara had a decent day in therapy. She worked some more on rolling and holding her head up. She also had some testing done. The Coma Recovery Scale is done each Tuesday to see if she is improving each week. She has certain tasks that they need for her to do to get points on the test. She improved this week by 3 points! Yea! Sadly, she is still considered by the test to be in a vegetative state. I don't know if I agree with that. I don't think she is wide awake and alert to her environment all of the time, but I don't think she is vegetative either. She is beginning to respond to commands better (not great all the time, but better), she is localizing touch, she is fixating on objects, and she is beginning to have more puposeful movements. What I have to remember is that the test is like a snapshot picture taken once a week. She has done things in therapy sessions that she did not do during "test time", and these things cannot be counted (even though the therapist doing the test are the same ones that have seen her do tasks during therapy session). This is VERY frustrating to me. I wonder how Kyara will do next week and the week after, after the baclofen pump is in and they have a chance to get the medications right. I hope she will have better motor responses. Either way, in the long run, I know she is improving each week and the score is still showing that. So, what more can you say? Keep working hard, Kyara.
I met a couple of other families who have children here in the rehab unit. The families are all very nice and the kids here are amazing. The kids range from burn victims, car accident survivors, a car surfing survivor, ATV accident, and anoxic brain injuries. The improvements that the kids make is astounding. I can't believe my eyes. God works miracles here everyday!
Monday, May 4, 2009
Found It!!!
The camera has been found! Yea! That is a load off! I knew I put it someplace "safe." And it was certainly safe, I couldn't even find it anymore! It was actually at the hospital in a drawer. Lately, things are out of sight, out of mind for me. But now it is found and I can exhale a deep sigh of relief.
Kyara had a good weekend with Gunars. The girls and I went up and visited some on Saturday, and then I went back up after Skylar's soccer game on Sunday and spent the night and most of the day today with her. She is still working on rolling, pressing switches to play music, and the "yes"/"no" cards. Today she appeared to "smile" on command. The speech therapist asked her to smile at me, and she kinda got one side up a little. Not enough to show her sweet dimples, but enough to brighten her face. Lindsay, the speech therapist, has told me that smiling on command is a difficult feat for kids. They usually will smile because of happiness first. Well, I haven't seen much of that. I pray it will change after she gets the Baclofen pump and is more comfortable. I also have a fear that I am putting too much stock in the Baclofen pump. Am I building it up to be the miracle drug? And how will I handle it if it doesn't solve Kyara's muscle tone and crying issues? I guess being aware of these issues is the best course of action. I just remember how excited I was to finally be going home, and the let down I had when Kyara had a difficult time with the transition.
Kyara has been wowing some of the Physical Therapists by bending at the hip and knee and shifting her weight to help with rolling. Of course, she still needs quite a bit of help, but we are getting somewhere! Oh, and Lindsay also told me today that she is hearing Kyara make different sounds when she is crying. This is a move towards talking again. YEA! We thank God for each step she takes!
Kyara had a good weekend with Gunars. The girls and I went up and visited some on Saturday, and then I went back up after Skylar's soccer game on Sunday and spent the night and most of the day today with her. She is still working on rolling, pressing switches to play music, and the "yes"/"no" cards. Today she appeared to "smile" on command. The speech therapist asked her to smile at me, and she kinda got one side up a little. Not enough to show her sweet dimples, but enough to brighten her face. Lindsay, the speech therapist, has told me that smiling on command is a difficult feat for kids. They usually will smile because of happiness first. Well, I haven't seen much of that. I pray it will change after she gets the Baclofen pump and is more comfortable. I also have a fear that I am putting too much stock in the Baclofen pump. Am I building it up to be the miracle drug? And how will I handle it if it doesn't solve Kyara's muscle tone and crying issues? I guess being aware of these issues is the best course of action. I just remember how excited I was to finally be going home, and the let down I had when Kyara had a difficult time with the transition.
Kyara has been wowing some of the Physical Therapists by bending at the hip and knee and shifting her weight to help with rolling. Of course, she still needs quite a bit of help, but we are getting somewhere! Oh, and Lindsay also told me today that she is hearing Kyara make different sounds when she is crying. This is a move towards talking again. YEA! We thank God for each step she takes!
Saturday, May 2, 2009
Still Can't Find My Camera!
Oh, NO! I don't know where my camera is!! I have looked all over my house, my car, and the hospital room and I can't find it anywhere. Last time I remember having it was at the house, I downloaded pictures onto the computer, so where is it now... I hate not having it.
On to Kyara...
Kyara is finally at goal feeds! YEA! This means the IV nutrition (TPN) is officially off! She is just getting feeds through her J-tube now. This is a big steps and we are praying that her colon doesn't start acting funny again. One thing I have noticed is that she has had a couple of times where she threw up a little bile. This is not terrible, but I wish it wasn't happening. With her stomach so far up in her chest, it is not surprising that she has so reflux. If we don't have her propped up high enough, or if she coughs, sometimes she has some bile come up. Again, not a huge deal, but something that I wish didn't happen.
My poor dad had a rough night and day today with her. Last night she woke up around midnight and didn't go back to sleep all night! Then today, both her NG-Tube and her J-Tube were pulled out!! My goodness! What a day! She was pretty upset most of the day, but Gunars is with her now and said she has calmed back down.
We are still waiting to hear when the baclofen pump surgery will be. I am anxious. I hope it is soon rather than later. The earliest will be Tuesday, but I have not been told an exact date yet. This leaves me in an ackward position. I am trying to arrange help for the nights (between my mom and Gunars' mom) but I want to make sure I am there before the surgery. But, since we are inpatient and this is an "elective procedure" we don't have a scheduled time. I guess they figure they have us there for whenever they decide they can do the surgery.
Kyara continues to show signs of improvement. Yesterday, before I left, Kyara had speech. The speech therapist, Lindsay, used two cards. One had a smiley sun and the word "yes" on it, the other had a large red X and the word "no" on it. She showed Kyara each card and explained to her what they meant. She then asked her to look at the "Yes". Kyara did. She asked her to look at the "No" (which was to Kyara right, this is the direction Kyara has a harder time looking towards) and after a second or two, she looked at the "no"! Then Lindsay, asked Kyara a question, she reminded Kyara what the cards meant and told her to look at the answer. Kyara answered 3 or 4 questions properly using the cards!! YEA!! We are suppose to work on this a couple of times a day for 10-15 minutes. Lindsay said that this is like exercise for the brain and that it can be very exhausting! I am thrilled that we are working on a way for her to communicate with us! I know she is in there and each time she does something like this, I am thanking and praising God! He is continuing to hold Kyara up and help her heal. His time! Slowly, it is coming!!!
On to Kyara...
Kyara is finally at goal feeds! YEA! This means the IV nutrition (TPN) is officially off! She is just getting feeds through her J-tube now. This is a big steps and we are praying that her colon doesn't start acting funny again. One thing I have noticed is that she has had a couple of times where she threw up a little bile. This is not terrible, but I wish it wasn't happening. With her stomach so far up in her chest, it is not surprising that she has so reflux. If we don't have her propped up high enough, or if she coughs, sometimes she has some bile come up. Again, not a huge deal, but something that I wish didn't happen.
My poor dad had a rough night and day today with her. Last night she woke up around midnight and didn't go back to sleep all night! Then today, both her NG-Tube and her J-Tube were pulled out!! My goodness! What a day! She was pretty upset most of the day, but Gunars is with her now and said she has calmed back down.
We are still waiting to hear when the baclofen pump surgery will be. I am anxious. I hope it is soon rather than later. The earliest will be Tuesday, but I have not been told an exact date yet. This leaves me in an ackward position. I am trying to arrange help for the nights (between my mom and Gunars' mom) but I want to make sure I am there before the surgery. But, since we are inpatient and this is an "elective procedure" we don't have a scheduled time. I guess they figure they have us there for whenever they decide they can do the surgery.
Kyara continues to show signs of improvement. Yesterday, before I left, Kyara had speech. The speech therapist, Lindsay, used two cards. One had a smiley sun and the word "yes" on it, the other had a large red X and the word "no" on it. She showed Kyara each card and explained to her what they meant. She then asked her to look at the "Yes". Kyara did. She asked her to look at the "No" (which was to Kyara right, this is the direction Kyara has a harder time looking towards) and after a second or two, she looked at the "no"! Then Lindsay, asked Kyara a question, she reminded Kyara what the cards meant and told her to look at the answer. Kyara answered 3 or 4 questions properly using the cards!! YEA!! We are suppose to work on this a couple of times a day for 10-15 minutes. Lindsay said that this is like exercise for the brain and that it can be very exhausting! I am thrilled that we are working on a way for her to communicate with us! I know she is in there and each time she does something like this, I am thanking and praising God! He is continuing to hold Kyara up and help her heal. His time! Slowly, it is coming!!!
Friday, May 1, 2009
Where Is My Camera??
I have it when I don't need it, and when I need it, I don't have it. So what is it? MY CAMERA! We are not allowed to take pictures or video during therapy sessions, so I have not been good about bringing my camera to the hospital. I need to get some pictures of Kyara up, though, so this weekend, I will be sure to bring it and use it!
I know it has been a few days since I last post, but that is because we have been busy. Busy is good. When we would just sit around, I had more time to post, but now, Kyara is in therapy or we are going for walks (well, she rides) outside. I also do stretching exercises with her in the bed in the morning and at night. She is one BUSY girl! Lately she has been holding her head up better and better. She is also focusing on objects and sounds better. Yesterday I took her outside for a walk and she held her head up in the wheelchair for almost 45 minutes. Her wheelchair has a tilt feature so I can lean her back so her head will rest on the headrest. Yesterday I had it sitting straight up! That was the first time I have been able to do that without her head resting on her chest! Yea for progress!
Last night we were sitting in her bed and she was calm. I was holding her in a cradle hold (like a baby) and I THINK she said "Mom". She was not making any noises and this just came out of nowhere. Of course I tried to get her to say it again, but to no avail. I pray I really heard what I think I heard. I know that I can get desperate for a sign of progress and that I may have heard a moan and thought it was "Mom." I am very aware of this possibility, but I still think I heard it. I pray God was giving me a new sign of progress.
Kyara is still working on rolling and using switches to turn music on and off on the computer. She has gotten a reputation of playing possom at times in therapy,too. Isn't that like Kyara? It is amazing how much more awake she is after 5:00pm when therapy is over. Or even when I put her back in her chair and we leave a therapy room. Suddenly eyes are open and she is looking around. Silly girl! Now is NOT the time for that Kyara!!
Thank you all for your continued prayers. I also want to say thank you for donating to Kyara's fund. I don't know how to send personal thank you notes to everyone, so please know that your kindness and generosity has been greatly appreciated
I know it has been a few days since I last post, but that is because we have been busy. Busy is good. When we would just sit around, I had more time to post, but now, Kyara is in therapy or we are going for walks (well, she rides) outside. I also do stretching exercises with her in the bed in the morning and at night. She is one BUSY girl! Lately she has been holding her head up better and better. She is also focusing on objects and sounds better. Yesterday I took her outside for a walk and she held her head up in the wheelchair for almost 45 minutes. Her wheelchair has a tilt feature so I can lean her back so her head will rest on the headrest. Yesterday I had it sitting straight up! That was the first time I have been able to do that without her head resting on her chest! Yea for progress!
Last night we were sitting in her bed and she was calm. I was holding her in a cradle hold (like a baby) and I THINK she said "Mom". She was not making any noises and this just came out of nowhere. Of course I tried to get her to say it again, but to no avail. I pray I really heard what I think I heard. I know that I can get desperate for a sign of progress and that I may have heard a moan and thought it was "Mom." I am very aware of this possibility, but I still think I heard it. I pray God was giving me a new sign of progress.
Kyara is still working on rolling and using switches to turn music on and off on the computer. She has gotten a reputation of playing possom at times in therapy,too. Isn't that like Kyara? It is amazing how much more awake she is after 5:00pm when therapy is over. Or even when I put her back in her chair and we leave a therapy room. Suddenly eyes are open and she is looking around. Silly girl! Now is NOT the time for that Kyara!!
Thank you all for your continued prayers. I also want to say thank you for donating to Kyara's fund. I don't know how to send personal thank you notes to everyone, so please know that your kindness and generosity has been greatly appreciated
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