Some Pictures...

Here are some pictures of the girls. Skylar is just hanging out, being Skylar. Kassey is officially mobile! She is walking every where and thinks it is hilarious to run out of the room when you are not looking!

Kyara is in the stander last week with Dan and Donna. We have not worked on this anymore this week because of her incision on her belly from the surgery last Saturday. I hope we will get her back in there next week. I think it is good for her! I want to push her as much as we can!

Gunars and Skylar are Coming!

Today has been long. As I wrote before, Kyara's dilation was successful. But now, new issue...she has bile coming out her nose and mouth. I ran back to the Ronald McDonald House for a shower (I stunk!), and when mom and I swapped back, she left Kyara with Maria, the speech therapist. Kyara had Pt/Ot right after speech, so we knew she would be busy for a few minutes and figured this was the best time to switch. When I got there, Donna and Maria had Kyara on the floor with bile all over her. She was trying to cough and sneeze and it was SHOOTING out everywhere. I think it freaked Donna and Maria out a bit. We got the suction machine, rolled Kyara on her side (so that she would not aspirate the bile) and I suctioned her mouth and nose until she quit spewing. Dan came in and jumped right in there. They paged the surgery doctors and they came running. Everything turned out ok, but it was an intense few minutes there. For some crazy reason, they decided not to do PT after all the excitement :)

So therapy was a wash. And now we have the weekend without therapy. I hope we are not getting behind, but there are medical issues that have to be solved first.

Later tonight, Kyara started oozing bile again. Not nearly as much as before, but it was still there. We had her on her stomach to try to comfort her in a new postition, and I am thinking it did not go over as well as we had hoped. Since having the gastric pull-up, I have to remember she is gravity dependent and anything that turns her head and torso down will allow stomach contents to come into her throat. I take the blame for this one, but not for the one earlier in the day. The doctors think that one was caused by trying to start her feeds too early and at too high of a rate. I think they are right. We will just have to keep an eye on her and see how it goes over the night.

And... Gunars and Skylar are coming in town in 2 hours!!! I can't wait!! I have missed them so much! I just want to hug them both so tight. We are going to have a great weekend together!

Dilation Done

Kyara is back in her room after having her esophagus successfully dilated this morning. I would like to say I was strong and held it all together, but that would be a lie. I cried like a baby when they took her back. I cried in the waiting room as I waited for her. I cried when anyone asked how I was doing. Phew. That is alot of crying. Then, after only 30 minutes, my buzzer rang. When you check-in in the waiting room they give you a buzzer like when you are waiting at a restuarant. Then, then when the doctor is ready to tell you something, they buzz you. So, I got the buzz. The lady at the desk didn't tell me anything other than the doctor wants to talk to you. Oh!! That's what they said last time, too. Then they led me back to the SAME room that they put me in when Kyara had her arrest. When I peeked around the corner I didn't see any of our old PICU nurses waiting for me, so I took a deep breath. Dr. Coran came in after a few minutes and said that the dilation went GREAT! In fact, it looks "perfect." He doesn't think she will need anymore dilations in the future, either (we will keep our fingers crossed!) This is great news, so I guess out of relief I started to cry AGAIN. Wow, Dr. Coran didn't know what to do with me! I let him off the hook, told him I was just happy she is fine and asked if I could get out of that room. So I went back to the waiting area and waited for Kyara to wake and get ready to go back to her room.

I am thrilled things went well this morning. Thank you God for watching out for Kyara and for guiding the doctors hands. Dr. Coran said the leak she had has completely healed and she looks great. Thank you God. I am also mad/sad. We now have a great esophagus/stomach, which is what we were hoping for months ago, but now I have a child with brain damage. Ironic? No, that's not the right word. What is the right word? And how should I feel about this? I am going to chose hopeful. I am hopeful that Kyara will continue to recover from the anoxic injury and will be able to use her "perfect" esophagus/stomach to eat real food.

Thank you for all of the prayers! I know in my heart that they helped Kyara this morning and everyday for the past few months. Thank you all!

The Night Before Dilation...

Twas the night before dilation ...

I am NERVOUS and SCARED about tomorrow morning. It is really strange because I also have a sense of calm and relaxation about tomorrow morning. I trust she is in good hands. I trust GOD will guide the doctors through her dilation and she will be fine. I know God will do what's right by Kyara, whatever He feels the right path for her is.

Today was eventful. Kyara complained, moaned and groaned ALL DAY! By 5:00, I decided I needed to go to Target and get earplugs. The moaning can get quite loud and to be honest, obnoxious. As much as I love her reacting and showing us she is aggitated, I hate to see her this way. The noise makes it hard to think at times. It is like a colic baby who after HOURS and HOURS of crying, you just really want them to go to sleep. I love Kyara so much and I don't want to get frustrated with her, so earplugs may be the best way to go :) The doctors have said that recovery has different stages. Cognitive recovery has 11 stages according to the Rancho Los Amigos Assessment Scale. Kyara is in stage 4, Agitation. I have to remember that the moaning, groaning, and complaining are a stage of RECOVERY. I have to support her while she goes through this and not get frustrated. After hours of it, that statement is easier said than done.

I also met Bo today. Bo is the little boy whose mom I met on Monday. Bo also had an anoxic brain injury after a routine procedure. I was not sure I really wanted to meet Bo after talking to his mom on Monday. I think I thought he would have three heads, snakes for hair, and eight eyes, or something. I don't know... the image I had in my head of a disabled, weak, mentally challenged child (who was considered a success story) was not at all how Bo was. He was a bright, sweet boy. He shook my hand, answered questions, began conversations, loves math, and was downright delightful. Wow, I am so glad I met him. Although he is delayed, he was a joy to see and meet. He gave me more hope than talking to anyone ever could. His mom said he continues to learn, grasp new concepts, and make new strides in therapy even now. His injury occured 6 years ago, and he is still working towards recovery. It is a LONG process.

I will post as soon as I know anything tomorrow morning. Kyara is going down to pre-op at 6:30am. Her dilation is scheduled for 7:30am, but will probably not start until 8:00am (you now how surgeons are:) ) The dilation should take about an hour and Dr. Coran will let me know how it went as soon as he is done. Please pray for Kyara's safety and for Dr. Coran to be successful in this procedure.

5 Weeks...

Really? Has it really been 5 weeks? The time seems to fly by and stand still all at once. I can still feel the punch in the stomach when I saw Tedra waiting for me in the recovery room. Wow, that's all I can say...wow. Not good, not bad, just...wow.

I wish I had some earth shattering news to write, but today has been more of the same. Kyara was storming most of the day. She is STILL not sleeping. She only slept from 9:30-10:30 last night. One hour is not enough! Certainly not enough for me! Kyara seems to be focusing better, but it is still not consistent. She has her moments for a couple of seconds, though, so we hold on to those. She is also complaining in a moaning kinda way. I told Gunars, she sounds like Chewbacca. Mostly it is more like a car engine, but every now and then, she changes pitch a little bit. We also went downstairs for therapy today. The poops are not as runny, but she is still pooping 5, 6, 7 times a day. I am still not sure I understand why she is on a laxative. She is not constipated, she just has a TON of gas. The doctors said the laxative with the gas-x medication will help with the gas. I guess it is working, she farts when she poops and her belly is much, much softer.

I pray that tomorrow will bring new signs and steps towards Kyara's progress.

New Day, New Attitude...

I would like to begin this post by explaining a little about my last post. I am using this post as an outlet for my emotions. Sometimes my emotions are not so pretty. But, such is life. I think it would be a disservice to myself, and to those reading, to pretend I am happy and upbeat all of the time. I have days, hours, minutes where I am thrilled with Kyara's progress and I feel very positive about her future and her recovery. But, I also have times where I get very upset by her current state and I feel unsure and even negative about her recovery. To pretend things are always great would be a lie. So...in a nutshell, there it is.

So today... I am feeling better than I did last night. The video recorder is put away and I am focusing on the here and now. Kyara was quite agitated today. All day, she has been sweating, very tight, and making faces and complaining noises. I told Gunars, it wasn't like her storms, it seemed more like she was mad or something. Her stomach was also very tight and distended. It is full of air and she is not passing gas to relieve the pressure. Of course, I have been asking anyone I can get a hold of to look at her stomach. Dr. Marcus (of the doctors from the PICU that has been following Kyara) came this morning and said she was still distended, but looked better than Saturday. Well, no offense, but Dr. Marcus was not here Saturday. He has seen her x-ray from then, so I will give him a break. He also started her on Miralax (a laxative) and an anti-gas medication. Tonight, though, I was still quite unhappy with the way she looked. I finally talked to Dr. Coran on the phone (he is out of the state until Friday) and told him I was very concerned about her. Her stomach seemed to be more distended than even this morning and that I was unhappy that noone was taking it seriously. He called Dr. Marcus and told him to come back to Kyara's room and check it out. Dr. Marcus agreed that she looked worse than this morning and decided a rectal tube would be a good idea to allow release of the air in her colon. Poor baby! He said either he or one of his interns would place it. I told him, "So, YOU are going to place it." I am not having one of the interns place a tube up my daughters bottom. No way. She has been through enough. Someone with experience can do it. So, Dr. Marcus left the room to get the supplies, and Sam (one of the nurses) pulled Kyara's knees up to her chest and started moving them back and forth. Well, Kyara let out a HUGE fart, and some poop! Yeah!!!! She then farted again!! Double Yeah! (Sorry about the fart word, substitute it for something else if you find it inappropriate. :) ) When Dr. Marcus came back in, he decided not to do the rectal tube because her stomach was so much softer! Is Kyara playing games with us??? The threat of a rectal tube would make me fart! Since then, Kyara has passed gas at least 4-5 more times and her stomach is SOOOO much better!! I am thrilled!

Other good news...

Kyara chose the material for her orthodics today. The people who make the orthodics had samples on a chain that were 4x4 so that patients can chose the color and design on the braces. I told Kyara to smile when she saw one she liked. The guy suggested a pink on with girls dancing on it, this is a popular choice. When I showed it to Kyara, she closed her eyes to turned her head slightly away from it. Ok...not that one, I guess, maybe it was a coincidence. I tried one with butterflies next, same thing...closed eyes, turned head. Wow, ok. Then I tried one with bunnies. She, again, closed her eyes and turned her head. So, now I am thinking, is she really saying "no", or was this all coincidence. Well, one more "girly" one to try. So I held up the one with ladybugs. Kyara stared at it and smiled!! Her smile comes out looking like a smirk but whatever! It was a smile! I think she clearly chose the one the wants. Without question. She is communicating with me in subtle ways and I am over the moon.

I prayed last night that God would help me see the ways he was working with Kyara. I think sometimes I get so involved in the big picture, that I don't look at the subtle signs. But here they are... Kyara passed tons of gas, and Kyara chose her braces. What a fantastic day! Thank you God!

Crying...

Today has been busy. Kyara had therapy at bedside because of her operation on Saturday. She has alot of tubes again, and it would be difficult to take her downstairs. She is still pretty heavily medicated for pain, so she is having trouble focusing her eyes. Good news, her heart rate is way down, even when she is stiffening, and her breathing rate has also decreased significantly.

Tonight she has been making faces like she is crying. She seems to have waves of pain or discomfort, but then it resides. I am not sure what to make of it. She has also had two poops (one last night, one this morning) so that is encouraging that her surgery was successful. I am not really comfortable with the results, though. Her stomach is still distended, she was pooping liquid before and that is what she is pooping now, and it seems to me like they relieved her symptoms, but what about the cause? Noone can give me an explanation that I am happy with. This is concerning to me. I am still pushing. The doctors said her x-ray this morning looked better than Saturday...well I should hope so! When is the distention going to go down, though?

Kyara is not the only one crying today. I met another mother of a child who had an anoxic brain injury 6 years ago. I had asked to meet someone so that I could talk with someone who has been in my shoes. I wanted a success story. Unfortunately, what they consider success is not up to my standards. The boy is 9 but is only at a 4 year old level. This is after 6 YEARS of rehab. I know each patient is different, so I hope for a better outcome for Kyara. It was disappointing to hear his outcome, though. Then, tonight I got a brilliant idea to video tape Kassey walking. This would have been great had I just done what I had originally planned, but oh no. I had to rewind the tape and watch Kyara from this fall. God, I miss her!!! So now I have been bawling for the past hour. I WANT KYARA BACK!!

Gunars and Skylar Are Home...

I took Gunars and Skylar to the airport today for their flight, and they made it back without any problems. I already miss them so much! Life will be different with them not here. Since Luz Estela left yesterday, and Gunars and Skylar left today, it is just Bunny, Kassey, and me here in Michigan. We will be back to "passing the baton" (the room key) and quick swaps. Skylar will go back to school tomorrow. She is looking forward to seeing her friends, but didn't really want to leave, either. She is a tough girl though. At the airport, she gave me a hug and kiss (I could hear her crying, but she didn't want me to see), then turned around, grabbed her bag and walked away with Gunars. She didn't even look back. Tough. I would have been a babbling mess. I am looking forward to Gunars and Skylar coming back for the weekend.

Kyara is still recovering from the surgery today. Her tummy still looks very distended, so I have been bugging the doctors about it. They finally agreed to do an x-ray this afternoon. Everything looks as they would expect it to look. She still has air in her tummy, but that is do to the surgery yesterday. Her colon and small intestines look fine. The air is significanly less than it was before the surgery. Her tummy is also soft to the touch, so that is all good things. She has had periods during the day that she was quite uncomfortable, I hope this decreases. She is trying her best to sleep, but has not been able to do much of it.

The problem Kyara had could have become life-threatening if they had not done the surgery yesterday. I am so glad they caught it in time. I am also concerned, though, about what this does to her rehab schedule. I hope she will recover quickly so that we can get back on rehab's service and continue her therapy sessions soon. For right now, she will have to have bedside therapy. This stinks. I still want what's best for Kyara and for her recovery, and I will push and bug doctors until I am satisfied with the care she is receiving.

Thank you for all of the prayers. I think this surgery will be a good thing in the long run. God knows the course and has a plan and we have to let him do his thing. Trust...sometimes it is a very hard thing to have. But I know God knows best. Perhaps her stomach hurting was an underlying cause to her storming. Now that it is fixed, Kyara can make better strides towards recovery. By the way... Kyara is not sweating and storming like she has in the past... good things can come out of scary situations!

Surgery is Done

The surgery is done and Kyara did great! Thank God! Her colon had a twist in it and made it difficult to get poop and air out. The surgeon made a small hole in her colon and released the pressure, then clean out her bowels. He also went ahead and placed the J-tube that they were going to place next Friday. Right now, we are back in Kyara's room and we are working on getting her comfortable. She had a large incision (from below bellybutton to midstomach), so she is quite a bit of pain. I hate having her in pain, but, I must admit I like seeing her make expressions. I can really see a pain expression on her face, much more intense than before. That sounds terrible, and believe me, I want them to fix her pain as soon as possible, but I like seeing her react.

Thank you for the prayers. I pray this will resolve her tummy issues. We are going to have her on a bowel regimen to make sure she doesn't get stopped up again. I am not sure I really understand how or why her colon got twisted, but I pray this is going to take care of it.

Emergency Surgery...

Kyara is going to have emergency surgery today at 4:00. She has an obstructed bowel and they are going to go in and fix it. They are also planning to place the j-tube since they have her in the operating room anyway.

I am terrified, angry, nervous, sad, and impatient. I want them to go ahead and fix her, but I don't want them to touch her.

Please send PRAYERS!!

The Good, The Bad, and The Messy...

Good news...
Kyara had a more peaceful day. She did not sweat like she has for the past few weeks. She also did not storm near as much. She really seemed to be calmer today than she has been in a LONG time Gunars got in last night and got to see Kyara this morning for a little bit before coming back to the RMH to work. He was excited to see her mouth "hi." I was thrilled for him to see it!

The Bad...
Kyara's Picc line accidently got pulled out of place today. We will have to either place an peripheral IV or have them replace the Picc tomorrow. I don't know what they are going to decide to do. Right now she is only using it to get some fluids. It has been hep-locked (heprin to keep the lines working) for a week and half, and they weren't using it at all, so I am not sure what they are going to decide to do. It is good to have access in case the doctors need it.

The Messy...
Kyara is having some poop problems. She has a blockage and is "constipated" but she also has the runs. Basically, she is able to squeeze out the liquid part of poop, but not any solids, so the solids have backed up in her colon and become a problem. Her poor tummy was distended and hard. So today the nurse has been on a pooping mission. Kyara has had 3-4 enemas and 1 suppository to try to breakup the blockage and get things moving. Poor girl has swam in chocolate soup quite a few times today :) Our nurse, Jenny has been a trooper at cleaning Kyara up and working hard to get things moving!

Kyara skipped therapy today. The first sessions she was SLEEPING! We decided sleep was more important at this point, so we called Dan and Donna and cancelled. The second sessions fell at the same time at the poop party, so Dan and Donna came to Kyara's bedside and did some stretching with her. They were good sports about it. Dan also left a mat and a ball that we use during therapy sessions so that Gunars and I can work with Kyara over the weekend. Mom is harder than Dan and Donna, so...sorry Kyara!

Skylar finished her time here with Mrs. Carol, the school teacher. She has done great and Mrs. Carol has been fantastic with Skylar. Kassey has decided that walking is not for her, she would prefer to RUN! Oh. My. Goodness.

Luz Estela (Gunars' mom) is leaving tomorrow morning. She has be a great help here and we will miss her! Tomorrow it is also forcast to snow 4-6 inches. I pray Luz Estela gets home safely. Her plane leaves at 12:00 pm, so please keep her travels in mind.

Another Slow Day

Last night, Kyara woke up at 3:30 moaning and groaning. As much as I like to hear her make noise, I wish she has SLEPT!! She was very tight from 3:30am on. Her heart rate was high and basically she was storming again. I wish the morphine had done a better job. We are not giving up on it yet, though. Today, Dr. Green decided to try giving Kyara morphine every three hours for the next 24 hours to see if it helps with the storming. The idea is that morphine has a short life and giving it to her more often, she will not have the ups and down with the storming. I am willing to give it a try, I am desperate for her to sleep!

Skylar spent this afternoon with me and Kyara in the hospital. It was nice to have my two big girls to myself. Child Life had a pizza party with music tonight, so Skylar and I took Kyara to the party. Skylar was so helpful. She got my pizza, drink, and dessert and took care of me! When I was ready for another slice, she jumped up to get it! I think it made her feel very special to have this time with just the three of us. I know I loved it!

Kyara is still storming. She had a difficult time focusing in therapy today and that was frustrating. I am having to look at this process and recovery on the big picture and not look at it day to day, or therapy session to therapy session. I will go crazy that way. There are too many ups and downs. Yesterday was a good day in therapy and today was not so good, so I feel depressed by todays sessions. The joys of yesterday are wiped away so quickly. So, for now on, I am not going to look at it that way. I am going to look at the big picture. I love it when I see a nurse that hasn't seen Kyara in a few days or a week and he/she comments on how much more awake and aware Kyara looks. Seeing her day-in/day-out I think I loose perspective. She has gone through the ringer and it will take TIME.

I find myself talking to myself in the shower alot lately. I have told Dr. Coran off more than once in there. I know this was a freak accident, but he was supposed to be responsible for her care. Do no harm... right? Well, harm has been done and I am angry, sad, and frustrated. But on the other hand, I am so thrilled that the team was able to save her. I cling to the idea that God was with her, protecting her, so that she can do His work. She has a job still to do and that is why she is still here, and that is why, with God's help, she will recover.

Morphine...Who Knew???

Last night sleeping went better, but still not good enough. Kyara slept from 7:00-10:00 as usual, but then did not storm through the night. She rested comfortably and even took a couple of "naps". I am still not satisfied, and neither are the doctors...so they put their heads together and decided to ask about trying morphine tonight. In the past Kyara has had a VERY poor reaction to morphine. She gets extremely agitated, mad, etc. instead of it having a calming effect. But, I am a desperate mother. So after talking it over with the doctors, we decided "nothing ventured, nothing gained." Ok, morphine...here we come.

I am spending the night with Kyara again tonight since we are trying the morphine. I try not to spend two nights in a row at the hospital because it is exhausting. I know this is a long-term recovery and I have to keep up my strength, so I try to go back to the RMH every-other night for some good sleep. Anyhow, tonight I am here with Kyara and I am amazed! Within minutes of giving her the morphine, Kyara fell asleep. She slept soundly for 4-5 hours! Yipee!! At 2:30am, we gave her another dose, and she has fallen back asleep again! An answer to our prayers! Thank God for helping the doctors push me into trying the morphine! We are using an IV dose now, but if it continues to work, they will swap to an oral dose next week.

We are also scheduled for Kyara's dilatation and J-tube placement for Feb. 27. 10 days. I am relieved and terrified at the same time. I am trying to hand this over and know that God will watch over Kyara. I know that when we get closer to the date, I will be a basketcase.

The social worker here has also found a family who has gone through a similar experience for me to talk to. I am excited by this. I can't wait to meet the mother and really pick her brain. It will be nice to talk with someone who has walked in my shoes. The child's accident occured 5 years ago, and he is doing much better now. I want to know how she got her strength, what tricks make life easier, and get an idea of what may lay ahead for us. Every child is different, of course, and their recovery will be different, but to get an idea from someone who has been there, will be great.

A little news on Kyara's therapy... Dan put her in a stander today and she tolerated it for 20 minutes! I didn't have my camera on me, but I will be sure to bring it next time! Of course, Dan had to really help support Kyara while she was in the stander, but it is a tremendous first step. Dr Green and Dr. Devon (Kyara's PM&R doctors) watched her in speech today. They were very impressed and excited to see Kyara mouthing words like "hi" and "bye" when prompted. She also mouthed letters to the alphabet when Maria would stop singing the alphabet song. (Well, she opened and closed her mouth at appropriate times in response to Maria) I have seen Kyara doing this before, but to have the doctors see it and be excited and encouraged by it, was a great new feeling! I admit, I cried...but Dr. Green seemed to well up some, too!

I look forward to seeing what Kyara will do in therapy tomorrow after a good night's rest. I am shocked that morphine seems to be the answer to our prayers. All this time, I have been saying "NO" to morphine, but it has done the trick (at least for tonight :) ) Thank you all for your continued prayers...for sleep, for healing, for comfort and support. God is listening. In His time, our prayers are answered!!!


**Update**
Darn spoiled again. I guess I spoke about 1 hour too soon. Kyara has been up since4:00 am storming. The morphine put her to sleep for a while, but didn't last. Go figure.

What Is Happening?

Today was not that great of a day. I know three will be ups and downs, but some ups would be really helpful right now. We need the ups to help us weather through the downs!

Kyara has been running a high fever today, had diarrhea for the past 2 days, and has started de-sating (had low oxygen levels). Last night the respiratory therapist put her on a nasal cannula to provide some supplemental oxygen. That seemed to help. They also began breathing treatments last night to help her lungs (they are coarse sounding due to "stuff" in them). The breathing treatments are really loosening junk up, so that is why they think Kyara is having a harder time with her oxygen saturation levels right now. Today the respiratory therapist brought in a vest that "shakes her up" a bit to help loosen the junk even more. After the first time they put on the vest, the respiratory therapist had to suction her for 20 minutes to clean out all the gook. It was nasty green, so maybe that is the cause for the high fevers. Better out than in!

Kyara is back to sleeping only from 7:00-10:30 pm. At least she is getting some sleep; but the poor girl needs so much more. I really think they cannot determine a baseline for her until she sleeps. I am getting very frustrated and mad that they are not getting this sleeping under control. I know I keep harping on it each post, but sleep is VERY important in a brain injury. We have been told that the majority of recovery will happen the first 3 months, and we are almost at the one month mark, and the doctors STILL haven't figured out a good combination.

I still have high hopes for Kyara. At times, she looks like she is toeing the line, trying so hard to talk to us and just not able to get it out. In fact, in speech today, both Maria and Dr. Laurie (neuro-psych) felt like she was "right there" and just can't get it out. Once again, I think this will come with SLEEP!!

I am also trying to be realistic in my expectations. I know that recovery will take a LONG time. I am mentally preparing myself for the wheelchair, j-tube, diapers (again!), and having to do all of her care. I pray that this will not be forever. I pray that she will respond to me and give me hope for the future. I am also devasted by her injury, she had/has so much potential. I am having a difficult time believing what has happened is real. I keep thinking I am going to wake up from this nightmare and everything will be fine. But that is wishful thinking. Kyara's recovery will not be overnight. It will lots of baby steps that will grow into bigger and bigger steps. I pray that one day, I will look back and say, "Wow! Look how far you have come!" I also pray that Gunars and I can be strong enough to endure whatever the future holds. We have to cling to each other for support and when one of us is down, the other has to be up. He was my rock and my positive vibe when I needed him, and I pray I can be that for him when he needs it, too.

Long Night, Long Day

Kyara did not sleep a wink last night. I mean literally not one minute! Her heart rate was elevated, she had alot of tone in her muscles, and she was breathing like a steam engine. Today has not been much better in terms of the "storming." She can't seem to get comfortable to sleep, and the breathing is crazy. Gunars and I talked with the doctors about her medications and our concerns about her not sleeping. They are working on it. I am getting FRUSTRATED!

Kyara TRACKED!! In speech today, Maria, the speech therapist asked Kyara to look at a picture to her left and she did, then she followed the picture as Maria moved it back to midline (in front of her)!`She also looked and found objects when asked in PT/OT. These are huge things, she is not consistently doing them, but they are great first steps. I really think that once she is able to get some sleep, Kyara is going to make more strides in therapy.

Today Kyara had a little scare with respiratory. A scare doesn't really describe it. She is fine, but she has started to receive breathing treatments (albuterol). Well, I guess the first treatment must have loosened up a whole bunch of stuff, because she started drooling brown secretions that smelled like tube feed. She was done in speech with Bunny and Maria (again) and our nurse came down to give her a med, when our nurse saw Kyara she ended the speech session and took Kyara back up stairs. They were still suctioning tons out when I got on the scene. "Better out than in", right?

Gunars was supposed to go home last night, but sometimes flying stand-by throws you for a loop. He was not able to get on any of the flights and all of the flight this morning and afternoon were overbooked, so Gunars had to work from the RMH today. He is back at the airport now, and I know he didn't get on the 5:20 flight. I hope the next one is a better shot!!!

Kyara is calmer right now than I have seen her in 3 days. I pray she sleeps all night. I would love to see how she reacts with a good 12-14 hours of sleep in her! It is getting rough staying up with her all night, even with taking turns, and I find it demoralizing. I am not sure that is the right word. What I am trying to say is that by the morning, not being able to comfort Kyara during the night, I get very frustrated and almost angry. I know it is not her fault that she is not sleeping and it is not fair to be angry, I just want her to sleep so bad!! I feel completely helpless. It is NOT a good feeling.

Valentine's Party... They used some of the Fantansic Valentines as Decorations!!

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.

Happy Valentine's Day

We are reminded on Valentine's Day to tell our loved ones we love them. This seems to be the time that we express to those that we take for granted how much we love them. Why do we wait for a special day? Each day that we have our families and friends around us is a special day. But, I am a sucker for Valentine's Day. Although cooperate America makes a ton and a half off of our guilt, I think it is good for us to be reminded and have an "excuse" to be mushy. What can I say, I love...love. Gunars flew in last night (thank you Andy and Ms. Slade for helping us with the flight!) and was anxious to see the girls. It is great to have him here for the weekend!

Speaking of love. We are overwhelmed by the love that has been poored on our family. We received the box of wonderful Valentines from Willis Road, all of the cards and care packages have been fantastic. Thank you all! Some of the classes at different elementary schools (Willis Road, Poplar Road, and Thomas Crossroads) have sent homemade cards that we have distributed to families at the RMH and at the hospitial. Spreading the love has felt GREAT! There will be a Valentine's Day party here at the hospital today, and we are looking forward to taking Kyara, Skylar, and Kassey.

Kyara is still having problems with sleeping. It is a guess as to which night she will sleep. I don't know if its the medications that are not right, or if she is uncomfortable, nervous, scared, or what is going on. I think that is the hardest part about this whole thing. We don't really know anything. I wish I knew how this would all turn out. I don't mind the waiting if I knew I was waiting on a good recovery. Kyara is a strong-willed, tough girl. I am sure this will work in her favor.

Moaning Again

Last night Bunny stayed with Kyara. I would love to say that she slept through the night like a baby, but that was not the case. She did do something else like a baby; she had a MAJOR blow-out of her "hospital pants". I know talking about poop is probably not the best subjects, but I have a point here. She slept great until she pooped at about 10:30 pm. Then she didn't sleep at all the rest of the night. I said I had a point, I didn't say it was a good one. :) Poor Bunny was up all night while I snoozed in a bed at the RMH. I feel a little guilty about that.

So therapy today was not that terrific in terms of moving and stuff, but on a positive note, she has begun to moan and groan in protest again. She had stopped making sounds last week or so, and it was encouraging to hear her moan again. In speech therapy we listened to the tape from Willis Road with all of her classmates and teachers talking to her (thanks again Ms. Carllisle and Ms. Laurie) and the speech therapist used a sucker to try tastes on Kyara. She didn't respond much, but she was tired. In PT/OT the Doctors came through to observe and were pleased with her gaze. Although she doesn't seem to be seeing anything or tracking with her eyes, she was not rolling her eyes back in her head or staring at the ceiling the whole time, either. Baby steps.

The computer is about to shut down for maintenance, so I will continue later....

A New Start

Last night Kyara did not sleep at all. Not one hour, not 30 minutes. I was up with her all night as she stormed like crazy. I could not get her settled for anything. It was a hard, long night. Poor Skylar grabbed a hot toaster this morning and has burn blisters on her palm.

That was the bad, on to the good...

Kyara had success at therapy today. This afternoon, she held her head up for 8 seconds by herself! Well, Dan controlled her head until she started to support it, then he let go and she held it there by herself! That is improvement! Yeah!! Also the storming is much better today. She is much more relaxed and not nearly as tight. Ok, now lets get a move on with this therapy!

She has been asleep since about 6:30 tonight, so about 3 hours. I hope it is not a nap and that she will sleep through the night. Her heart rate is much lower than I have seen it in quite a while even while she is awake, so maybe the doctors have found the right combo of drugs to help her. Once we have all of this under control, she will be calmer during the day for therapy.

Kassey has started to walk. She took 5-6 steps today, but thinks it is a riot to fall down when you want her to show you! It is a game, we stand her up, she falls down...laughs, we stand her up, she sits down...laughs, and on and on.... She gets a kick out of it!

So, Bunny is going to spend the night with Kyara. I pray for a good night sleep for them both. I am going back to the RMH to get some shut-eye and I will be back first thing in the morning. Therapy starts early, so hang on to your hats, we are pushing forward!

A Tough Day

Today has been a very tough day. Well, I guess I should back up, I didn't post last night, so let me catch up...

Yesterday Kyara had 3 therapy sessions. She had PT/OT combo in the morning, speech and a cognitive doctor therapy right after PT/OT, and OT/Speech therapy in the afternoon. We figured with all the new therapies she would sleep well. Boy were we wrong. She only slept about 3 hours last night. Also, her feeding tube got pulled during PT/OT in the morning so we had to wait hours for an x-ray to confirm it was still in the stomach before restarting her feeds (she is off feeds while at therapy). It ended up being in a good spot so feeds continued. If that wasn't enough, one of the nurses gave her a medication in the middle of the night that clogged the feeding tube. So again this morning, no feeds. But, more importantly, no meds. The medications Kyara needs for decreasing her "neurological storms" (increased breathing, sweating, high blood pressure, high heart rate, increased muscle tone) as well as her sleeping medications, and medications to help her "awaken" more, all go through her NG tube. And now it is clogged. So therapy was a disaster...she was "storming" so hard they couldn't calm her to do much of anything. Finally at 2:00 we went to x-ray to place a new feeding tube, but it took 2 HOURS and 6 DOCTORS to get it in!!! Then we came back upstairs to her room and they had an intern come in to bridle the NG tube in place. What he ended up doing is worthless, so the tube is still not secure.

Gunars left this morning and I am so sad without him here. I know it is for the best, but I wish he was here so we could hold each other and reassure each other. He has arrived home safely, thank God, so we have that as a positive for the day. The doctors were finally able to get the feeding tube in the right spot, so that is another positive. I am searching hard today to find the good stuff, tomorrow will HAVE to be better!! I am trying to be positive, but at times my mind runs a little wild. Especially after today, I feel angry about the position Kyara is in. She was HEALTHY and HAPPY. I am trying to wipe those feelings out of my mind and my heart and writing them down makes me feel some better. With God's healing hands, I pray that Kyara will continue to recover and return to a healthy, happy girl.

Monday Morning... First Day of Rehab

Kyara is officially moved from Peds Surgery service to the Physical Medicine and Rehabilitation Service (PM& R). This morning she will begin intensive rehab with the team. She will be working with PT and OT at 10:00, Dan will recast her legs after, then she will meet with Speech. I understand she will also meet with a neuro-psychology who will work on cognitive skills. As I understand, she will get PT and OT at least twice a day. BUSY GIRL!!! I pray this will help her recover better. I ready to get started. I told Gunars, today feels like the first day of school. I feel like I should be doing her hair, getting her dressed in new clothes, and putting her best face forward! It is exciting! I have high hopes for the therapies.

Gunars has been wrestling with a very difficult decision. He is in a difficult position being the breadwinner in our family. We are in a position where we had to decide whether it was better for Gunars to stay here, or go home and go back to work. I don't envy him at all. It is very stressful to have to provide for all of us, and to know that means leaving Kyara. After considering the all of the options, Gunars has decided to go home tomorrow and come back up on the weekends. Since we are so far from home, it really stinks. If we were in Atlanta, he could visit everyday, but that is obviously not possible in Michigan. I am really proud of him for sacrificing for the good of the whole family. Since Skylar has next week out of school, we decided that she will stay here instead of going back with him. I don't see the point in her making the long trip for 2-3 days of school. It will be a better transition for her to go back after the break. She will continue to go to school at the hosptital all this week and next week.

Thank you again for all of the prayers and positive thoughts. We are looking forward to seeing what rehab will do for Kyara and pray it will be just what she needs.

Bumpy Bath Day

First off, Kyara slept like a baby most of the night last night. I wish the same was true for me. I was terrified that she would wake and I would not know it, so I spent most of the night up watching her. I finally fell asleep around 4:30am and my mom (bless her heart) came in at 6:30 am to be with me and Kyara. Kyara didn't pay us any attention, she slept GREAT!!

In the activity room today, Child Life had a beach party for the patients and their families. Kinda funny...we are having a "heat" wave here in Michigan. These silly northerns think 40 degrees is a HEATWAVE!! It was fitting to have a beach party during a midwinter heatwave! Child Life had arts and crafts, games and prizes for everyone. Skylar had a great time. We took Kyara, too, in her wheelchair. We thought a change in scenery would be good for her. I found the party to be sad, though. I wish Kyara could have enjoyed it more.

When we got back from the party, Sam (our awesome nurse from Kyara's last hospitalization) started her shift and got Kyara back as one of her patients. Yippee! We like Sam. Anyway, we got started with the bath. I think Kyara enjoyed it, she didn't growl, so that is a good sign! The tub has a mesh chair that Kyara was able to sit in and I gave her a good scrubbing. Once back to the room, I realized I had still missed some in the folds of her neck. My Goodness! Bunny (my Mom) got a baby wipe and fixed that right up.

Bunny has been a busy lady sewing and cooking soup. Who knew my mom was so domestic? She has cut the left sleeve of some of Kyara's short sleeve shirts and added snaps so that Kyara can wear clothes to therapy. They have worked great! Luz Estela and Eriks (Gunars' parents) have been very helpful with Skylar and Kassey as well as doing the chores and laundry at the Ronald McDonald House. What a blessing it is to have so much help!

Tonight Gunars and I took Skylar to a UofM Hockey game. Quite exciting! I had a nagging feeling the whole time, though, that something was not right at the hospital. I could not get my mind off Kyara. Well, on the way back, I called to check up and let Bunny know we were on our way. Bunny informed me that the doctor was paged to come see about Kyara... her blood pressure was 180/100 and she was breathing extremely fast. Scary! I dropped Gunars off and when Bunny came down she said she thought I should go back up, too. When I came in, Kyara's eyes were moving all around the room like she was scared but LOOKING. She was extremely agitated and the doctor was talking about giving her MORE medications. I kneeled down in Kyara's face and told her where she was, who was with her and for her to take a big breath. She did! But that didn't last or help much. So I asked if it was ok for me to hold her. I scooped her up, and climbed on the bed with her in my lap. Within 1-2 minutes Kyara was calmed down. Her blood pressure was now 103/53, pulse had dropped and she went to sleep. Wow! That was scary! Gunars helped me get comfortable and I held her for another 15 minutes then I scooted out and put her in bed. I think she was more alert tonight and it scared the stew out of her. I really think she was looking at Gunars and me. Maybe I am getting too hopeful, maybe I am reading into it, but she looked scared. That would explain the rise and sudden fall in blood pressure, heart rate and breathing rate. It makes sense to us. The doctor poo-pooed on my thought, but who cares. He doesn't really know Kyara. On the way up the elevator, I was praying that God would comfort Kyara and take care of her, and He has.

So, it is 11:51 pm, Kyara is snoozing and Gunars is going to stay with her tonight. I am going to run back to the RMH and do some of my own snoozing. Kyara is in good hands.

Happy Birthday Gunars!

Today was Gunars' birthday. It is kinda strange/funny that Kyara shares her birthday with me and her half (6 months) birthday with Gunars! I think that means she is extra special! So, tonight we sang happy birthday to both Gunars and Kyara. Skylar and Bunny made fantastic cupcakes while Lutela helped keep Kassey out of trouble!

Kyara had PT and OT today and the OT, Donna, felt that Kyara was really looking at her. She said she has not felt that before, but that today she really felt like Kyara was making good eye contact. Dan is still working with Kyara, too. Donna and Dan have a good cop, bad cop style. Donna is soft and sweet and Dan is energetic and pushy. I like them both and together they make a great team. Kyara was officially transferred from the Peds Surgery service to Physical Medicine and Rehabilitation (PM&R) service today. This means she will get MORE therapy! Speech will be involved to work on swallowing, tasting, and eating. Kyara will also have PT and OT twice a day instead of only once a day. Too bad today is Friday, the therapists don't work on the weekend, so we have to wait until Monday to get started. We were given "homework," though, so look out Kyara...Mommy and Daddy will be working you!

Tomorrow I am hoping to get Kyara a bath. They have a tub room that has a "chair" that Kyara can sit in and it will drop into a tub, (with bubbles!) so that Kyara can get a good scrub. She has been sweating so much her hair is soaking wet and smells terrible. She also has some breakdown of skin on her neck. It reminds me of a baby's folds in their neck, where if you don't clean it right it gets that yeasty smell and buildup. Oh - now I have told about my inability to keep my kids' neck clean... Well, once they start to smell up the house, I clean them :)

Kyara did not sleep again last night, but she had a 2 1/2 -3 hour nap this afternoon, and she has been sleeping for about 2-3 hours tonight, so hopefully we will have a quiet night.

Thank you for the prayers and please continue them. Kyara is a tough girl, but we need all the help we can get! All of the baby steps that Kyara is taking makes me believe that she is moving in a good direction toward recovery.

2 Weeks and Counting

So, last night Kyara finally slept. I cradled her in my arms all night. Needless to say it was one of the sweetest nights of my life, but one of the most painful, too. She is HEAVY! And when she would get tense, I would try to curl her into a ball in my arms and hold her in a "flexed" position. Have I mentioned she is very STRONG? She broke through my hold some of the time. But, she DID sleep. She would sleep for a couple of hours then wake up for an hour, fall asleep for a couple of hours again, then wake up for an hour. While she was awake, the nurse would come in and "deep suction" her. She is very junky sounding (lots of mucus in the back of her throat which drops her oxygen saturation levels). To suction, they use a flexible straw and pass it through her nose and into her throat. It would bother the stew out of me, but she doesn't seem to mind. Unfortunately, because it is so dry her, Kyara's nose has begun to bleed from all of the suctioning. Today I bought her a humidifer for her bedside. Hopefully that will help.

I need to back up a day, and let you know that on Wednesday we had a lot of commotion. First, my dad went home, Kyara was moved...twice, and Luz Estela and Eriks (Gunars' parents) came to town to help out and see the girls. To make a long story short, my dad was great help and relief for us here. He stayed the night with Kyara so that we could sleep and he stayed with her while Gunars, Mom (Bunny), Skylar, Kassey, and I went bowling. It was fun, but I really wish they had a no smoking rule like they do back home. I am still trying to get the smoke out of my clothes! Oh, I ramble...back on track...

Kyara was moved from the PICU to the rehab floor. I wish I could say she was responding more and getting back to her normal self, but she is still in a major daze (for lack of a better word). She is not in a coma, but she is not giving us much in the way of communication or purposeful movements. Again, that is not to say she is not making any purposeful movements, but we wish she was doing ALOT more. She was given botox shot today and did not react to them. The Kyara we know would have been throwing a huge fit, screaming at the top of her lungs, just from the IDEA of a shot! So things are different. I am just waiting for something to click. I keep thinking that once one thing clicks for her, then other things will start falling in place. So, what is that one thing??? That is the million dollar question! Again, I ramble...sorry - lack of sleep will do that.

As I was saying, Kyara is now on the rehab floor. We got settled in a small room and then the charge nurse came in and asked if we wanted to move. "Well, no not really, but thanks." "It is a bigger room....I think you should check it out." So off I went to check out the new room. It is HUGE compared to the other one. So I repacked ALL of our stuff and off we went! The new floor is good, but now we have to do more of Kyara's care. We went from one-on-one care to six-on-one. Good news is that we get to have more rehab on the floor and that is exactly what Kyara needs.

Today Kyara has been through PT, OT and gotten the botox shots. We went for a little ride up to the 8th floor (family room area) for music and pizza. Kyara rode in the wheelchair we are using here and we dragged her IV pole and feeding pump behind her. It was nice to have everyone together for dinner. I wish Kyara could have been an active participant.

I know today's blog is a bit crazy. I am just writing as things come in my head and I'm sorry if I jumped from thing to thing. Hopefully it makes some sense. Kyara will have more physical therapy and occupational therapy tomorrow and I am ready to get back to her. I feel like I am missing so much when I am not there with her. But tonight, I am tired and going to bed. Good night, thank you for the prayers and thoughts. We are managing, but the support has really helped us keep our spirits up.

FINALLY SLEEPING

Genie says, "I'll post tomorrow. Kyara is sleeping in my lap."

Day 13... Casting and Loving

I got to hold Kyara in my lap today for the first time. I cradled her like a baby and finally she fell asleep for an hour. It took some work to get her to sleep, but the girl MUST be exhausted. Last night they gave her valium and melatonin, she slowed down with her movements, and seemed calmer, but still did not sleep much. At 5:30 am she finally fell asleeep for an hour. So grand total for the past 24 hours is 2 hours of sleep. The doctors are going to try something new tonight in hopes of more snoozing.

Dan came in today and cast Kyara's legs/ankles. She was wearing boots, but because her ankle muscles were still in contractions, Dan decided to make custom splints. The cast will come off tomorrow. We are still waiting to hear about the Botox injections. If they decide to do it, then Dan will recast after the shots.

Kyara also had another EEG today. We were praying for more brain activity, but this was not the case. It did show that she is not having seizures, thank God, but her brain wave activity was actually a little worse. The neurologist said they are not taking that to mean anything, she could have been in a sleep cycle, she could have been exhausted (4 days with no sleep will do that to a person!), it could be medication effect, etc. So, although we would have loved to see improvements, we are taking the EEG with a grain of salt.

Day 12... Where is the Sleep?

Well, last night Kyara did not sleep again. I think she rested for a total of 40 minutes. The poor girl is exhausted. The doctors prescribed a hormone that is naturally made in the body to help her sleep and valium as a muscle relaxant. Her body is tight from muscle contractions, so hopefully this will help. We noticed that when we moved Kyara or stretched her today, she would relax. Her pulse and breathing rate would drop to more normal levels and she would close her eyes and "sleep". Unfortunately this effect would only last for 15-30 seconds, then her body would tense again and she would be wide awake. We hope that the valium will help her muscles relax so that she can sleep.

Kyara crossed her legs tonight. She was lying in bed, legs straight, and crossed her right leg over her left leg. This is a movement she has not done before, so it is exciting to me!

PM&R (the rehab Doctors) came in to see Kyara today. They are concerned with the tightness of her "heel cord". Her toes are very pointed and when she gets to the point of standing and walking, she will not have the flat of her foot to walk on. The docs are suggesting Botox injections as a possible option to help the contractions relax. I have been thinking about Botox for the worry lines all over my forehead, maybe they will have extra! Haha! Seems strange to have my 4 year old getting Botox injections, but they said it can work, so I am all for it. If/When they do the Botox, Dan the Man will put Kyara's feet and lower legs in casts. This will keep her feet flexed up towards her shins and give her the best chance at lengthening the contractures. She will have the casts for 7-10 days.

We have a new Neuro team today. The team switches every month. I like the new head Doctor. He has a gentle spirit about him. I can't explain it, I just feel like he is supposed to be working with Kyara.

We still do not have any answers about Kyara's future. I wish we did. It is in God's hands, he will show us the paths and His plan will be evident in time. Time...I am beginning to think it is a nasty 4 letter word. "Give it time." "Only time will tell." But, I know that God is holding Kyara, healing Kyara, protecting Kyara, and loving Kyara (as well as the rest of us), so I will wait. God has been good, I thank him for yesterday, today, and tomorrow.

Day 11... Please Send Sleep!

Kyara did not sleep again last night or at all today. She is going on about 4 hours of sleep over the past 2 days. The girl must be exhausted. I am concerned about her lack of sleep and how that is affecting her healing. Tonight the doctors have prescribed Hallidol, which is an anti-anxiety medication, that has been shown to be helpful in situations like Kyara's. I pray she sleeps. She needs it!

I believe in my heart that Kyara is in there. She is becoming more vocal with her displeasure at the stretching and moving we are doing with her. In fact, today when I was stretching her, she was moaning so we told her to tell me "no" and I would stop. I wasn't looking, but both Gunars and the nurse, Nick, said they saw her shake her head and she got louder with her moans, so I stopped. Nick had goosebumps. She is there, we just have to figure out how to get her out!

I would like to see more progress each day than what we are seeing. I know it will take time, but I want it NOW! I am having a difficult time understanding why this has all happened. There are a lot of "what ifs..." that I come up with on an hourly basis. What if we had waited until the next week for the dilation, what if I had told Kyara I loved her one more time before leaving her in the operating room, what if we had never done the gastric pull-up surgery in the first place? The only answer I can come up with is that God has a plan and this was part of the plan. I do not understand it... I cannot understand why Kyara's suffering is what is best for Kyara, but I know he has a plan. I still believe that Kyara is destined to do great things. She has already accomplished so much. Kyara's story has touched so many people, and the out-pouring of love, suppport, strength, and prayers has been amazing. I don't want to sound greedy, but I am looking for a miracle. I want Kyara healed, completely. I want her back home with us, running, laughing, playing the Wii, having picnics. I pray that is in God's plans. If it is not, I pray I have the strength to deal with whatever God's ultimate plan is. The only thing I know for sure is that I will always love Kyara, no matter what the result are.

This afternoon, Gunars and I took some time with Skylar. We went to the YMCA in Ann Arbor and she and Gunars swam together. It was so sweet to see them. Kassey is standing better on her own and has taken a couple of step by herself...walking is right around the corner! It is tough to spread ourselves so thin between the girls. All three need us, and to be honest, I need them, too. The strength of a child is amazing.