My first day out of the PICU was great. It was full of lots of firsts. I went to the "gym" for the first time with PT, went for a walk in my cool new stroller/wheel chair, put on real clothes, got some sunshine, got to go to the playground later and watch/listen to my siblings play, and I am starting to take real naps instead just occasionally waking up. I am so grateful for your prayers. Please pray that the extra fluid in my head will begin to reabsorb. It hurts and make my head heavy. Also please pray I will work hard and learn lots of new things. I sometimes get really sleepy when I am doing my therapy and I could use the prayers. Thanks! You all are the best. Thanks for loving me, thinking about me and praying for me. Parker.

Good bye PICU!

Parker's middle name is Chad. He is named after my brother. I have so appreciated your prayers. I am going to add this little boy to my prayers, too. This definitely puts my little boy's MRI results in perspective.

Michigan mom turns to prayer and social media for miracle to save her son

In a pessimistic world, a Michigan mother is looking for a miracle to save her terminally ill four-year-old son – and she’s turning to prayer and social media to...

FOXNEWS.COM

I have had some requests for updates... Apparently I have been kind of vague. J Parker is doing pretty well. They extubated him very successfully on Thursday and was breathing room air by that night. They are slowly weaning him off the morphine-some days and nights he does better than others. Hopefully some time this week he will move out of the PICU to inpatient physiatry, which is step before rehab since he can't withstand 3 hours of rehab yet. His injuries were really extensive. Like I said he has some big mountains to climb. I am so eternally grateful we got to keep him. Looking back over the last 4 weeks I realize now just how close it was. He will be pretty much starting completely over, but we are really hopeful and excited to begin this next phase. I know it will be hard-much harder than I suspect we can even guess, but hopefully rewarding as well. I loved this little guy before, and I love him even more now. I wish the very best for him. Please pray for him as he begins this new part of his journey that his brain can mend and heal, that his neurons will reconnect and grow and that we will witness miracles in his recovery.

This Morning I am really grateful. I am grateful for a good night's sleep. I am grateful that Parker was so successfully extubated and is breathing so well. I am thankful I get to hold him now and that his little heart rate calms down and he will fall asleep in our arms. I am thankful for time with my kids. Yesterday as I left my home, I was so thankful to be able to clean my own home. Sometimes it is so therapeutic to scrub and vacuum. I have been so overwhelmed with all of the wonderful meals, playdate, phone calls, visits,emails... Yesterday I was so touched. Our sweet neighbor lost his wife this summer after caring for her illnesses for many years. I had not realized that when I stopped to talk on Friday. We had a wonderful conversation on his driveway. He told me about his wife, and I shared with him a little about Parker and about how close we have felt to those who have passed on watching over him, especially that first week when his life was hanging by a thread. It was just a simple sweet conversation. I told him my sister always told me you need three hugs a day to be emotionally stable. Yesterday when I came to visit Parker and Darrell at the hospital, there was a brand new Panda bear. My sweet neighbor had come to the hospital had brought it to Parker. We have been so touched by so many kindnesses shown to our family. Thank you!!!

Tonight I am thankful for the Ronald McDonald house. I am sitting in a beautiful room on a beautiful couch listening to a pianist while waiting for dinner to start. They serve 3 free meals a day for the patient's parents and families. The meals are simple but delicious. I love that it is not income based. All are welcome and served. It seems a simple thing, but what difference.

I sure love this little guy. As you can see in the picture, he was extubated!!!  I initially didn't post about it because I didn't want to get my hopes up (or anyone else's) and I didn't want everything dashed if it failed again.  You know the phrase emotional roller coaster?  For the most part we have been fairly even keel, but we have certainly had our moments.

The extubation went perfectly.  The RT pulled the tube and he was immediately breathing well. A little crying, but oh it is so good to hear him cry.  To hear his sweet little voice. By that night he was breathing room air.



Looking back,(I am posting this several weeks later), I see what a blessing it was to have him fail that second extubation.  I had prayed so hard and did not understand one bit why he failed when everything pointed that he should pass.  Now I realize it was to get us down here to Rady Children's Hospital in San Diego sooner.  We probably would have stayed at UCLA for 2-3 more weeks if the extubation had stayed successful that day.  Instead they rushed the transfer that weekend because of the trach possibility.  The OT and PT at Rady's are AMAZING and they began working with him immediately while he was still intubated in the PICU. It made such a difference!

One OT in particular said "Don't look at the future, look at 2 weeks ago."  I have lived by that.  I ended up ordering a planner that I can track his progress daily and easily look back 2 weeks.  What a difference 2 weeks makes! I am grateful now he failed that extubation because it brought on the transfer soooooo much quicker and got him in therapies that much sooner that have made all the difference.  2 weeks. God works in mysterious ways.

My sister asked what specifically they could pray for. Please pray Parker will be able to figure out his breathing and that the neurons in his brain will be able to begin to reconnect.

Parker and I are adjusting well to the new hospital. It has been interesting to see what things are similar and different, but so far it has been good. I love that they incorporate rehab from the very beginning. The occupational therapists and physical therapists have already made such a difference. I like that they plan his care with the end in mind. They have an excellent brain trauma unit and I feel so good about being here for his rehab. He is in good hands.

Thanks for you sweet birthday notes. I felt loved. It was a bit of a weird day getting used to the new hospital and feeling like I have no control over any aspect of my life, which I don't, but it was still a good day. A sweet friend took my kids so my Mom could come and spend the day with me and Parker. Then Darrell brought the kids, dinner and a cake my mom made and sprung me from the hospital! We went to Mission Bay to eat, play and roller blade. I have decided Mission Bay is one of my all time favorite places in the world. It is so relaxing with so many wonderful family memories. I have a feeling we will be visiting there a lot. I love rollerblading with my kids, watching the sun set over the water while the palm trees sway. It was good.

Good morning!

We are moving in and getting settled in our new home in San Diego. The transfer to Rady's was successful. I went up this morning to spend the day in UCLA with Darrell and Parker. He flew and Darrell and I got to drive down together. It was really nice to spend that time with him.

 

I love to be home with the kids this weekend, but my heart is up at the hospital with Parker and Darrell. Everything is up in the air. He will probably need a tracheostomy which is a much better long term solution to a breathing tube. The problem is they would have to keep him 10 days after the procedure so the plan is to life flight him down to Rady's Children Hospital as soon as they have a bed open, which might be sometime this weekend. Then they would do the tracheostomy down here. Like I said- everything is up in the air. We don't know if Darrell will be able to go on the flight, and obviously our things at the hospital can't so I don't know if I should go up and get him, or hold tight here... I was feeling pretty overwhelmed and worried not knowing anything. I was in my room crying and praying and I knew I needed to read the scriptures or words of the prophet. I opened up the Ensign I had on my nightstand and found the article "A Time for Faith, not Fear." (July 2013)
There were so many wonderful insights that calmed me. One is "Faith, to be faith, must walk to the edge of the light, and then a few steps into the darkness." "It is hard to build faith in the noonday sun. When the night is dark and the clouds are thick, we have an opportunity to put our hand in the Lord's hand and rely on Him to help us through." I am looking through the article and there are so many good quotes. "Sometimes--after we have fasted, prayed, and done all we can do to dispel clouds that have not parted; after we have gone into the dark and expected further light that has not appeared; after we have lived the commandments through difficulties that remain unrelenting-- we simply need to turn things over to our Heavenly Father." I am sure we have not hit bottom yet. Like others have said, take 2 steps forward and one step back. But it is hard to be absolutely helpless. In D&C 84:88 it says "For I will go before your face. I will be on your right and and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up." We have felt those angels in so many ways. I tried to keep track of the acts of service to thank you, but there has been such an outpouring. In kind words and messages, emails, texts, meals, play dates, checks, carpools, and the countless prayers and fasting. We have angels all around us. Thank you.

They had to reintubate him last night. Poor baby.

Guess who I got to hold!!! After he got back and he calmed down, I asked if I could climb in bed and snuggle with him. I didn't realize how exhausted I was until I promptly fell asleep next to him. Then when we woke up, they let me hold him. Now I get to go home tonight and hold and snuggle my other little ones. I am so lucky.

 

Success! He was extubated. I have never been so thrilled to hear my baby cry.

Today I am thankful for amazing nurses and doctors that actually listen to what I have to say and answer ALL of my questions. Yesterday I had massive amounts of doctors and teams come one after the other. The head and nose doctor said one thing, the attending pediatrician said "no not that, we are doing this." Then anesthesia came in and said "No, they are doing it this way." It was very confusing. I also read each and every consent asking "wait- why does it say this." Which led to all kinds of questions and better explanations and understanding of the procedure. One of the residents even said "Wait- it says that?" Thankfully I had an AMAZING nurse who heard me telling everything to my husband and she thought "Oh- if only I could explain everything." Which she did. She sat down with me and explained everything, brought my concerns to the attending physician who came back in and really took the time to explain the discrepancies in terminology and that they were really all talking about the same thing. I had some other concerns about the pain medication he is on in conjunction with the anesthesia, which they listened to, thought about and are going to time the medications so they do not overlap for the procedure. I just want to make sure he has every chance of extubation being successful. The procedure is not until later today. Please pray that everything will go smoothly today exactly as it should.

Today I am thankful that I have my camera here. It is amazing how handy it has come- to show off pictures of my little boy to the nurses, to video when he is active so that when neuro comes and he is sleeping I can show them a video instead of waking him up, and to look up pictures I found of him eating with a fork so OT could see which hand he prefers. And of course to take lots of pictures of my little boy with his stuffed animals. Extubation is scheduled for tomorrow and... I am trying to wait very patiently... That was actually one of my first thoughts when we began to understand the gravity of his situation is that this will be a great lesson in patience. I am so curious to see my little boy when he is off sedation and to see what abilities he might have and what we can begin to work on. The nurses keep telling me over and over how amazing the brain is and how much his young age is on his side. I am planning on having to start completely over and I am just so grateful he is here. I am excited, nervous, anxious and resolved to begin this journey together with him.

Parker update- He is doing well. They have weaned him off of the super heavy pain meds and he is only on morphine. Eventually they will wean him off that as well. Yesterday morning he had no tone in is right arm and hand, but by last night he could grasp my hand. He suffered some strokes while the swelling was so bad that will affect movement in his arms and legs- so that grasp in his right hand is a big deal. His left arm has an excellent grasp and he even lifted his left arm on his own today! He is still fairly sedated, but his eyes open and he looks around whenever I do the PT on his legs to stretch and move them. He will point his toes and stretch his legs as well. He is starting to get more facial expressions, mainly his little lip quivers when he is sad, which is thankfully less often now. He is starting to yawn. Jes was so confused why we were so excited about a yawn! He looks at me and I love to gaze into his beautiful eyes. He is in there.

They plan to attempt extuabation again on Thursday, but this time in the OR with ENT so if it fails again they can use a scope to see why. He has a huge air leak around his vent- which is really good. The leak is so bad the vent does not even pick up his breathing because he is breathing on his own through his nose. Please please pray that the extubation will go well and his vocal chords will not collapse this time.

Parker was exhausted after his exciting morning today. He blew out up the back of his diaper then while we were changing him and had his legs lifted up, he peed up and over his shoulder and ALL over his blankets. But, I got to help lift him and kind of hold him while they changed everything!!! He is a tricky little fellow.

The kids handled seeing him amazingly. Jes has had the hardest time with everything since I think she understands the most, but it has allowed for some wonderful talks and spiritual discussions.

 

I love her expression. I am really proud of these kids. Her first look was concern, but she immediately changed it to this smile.

 

 

This girl cannot help but kiss her brother.

 

 

 

Devin was super curious. He loved looking at all of the equipment, especially Parker's boots to keep his feet flexible so they can flex and not just point.

 

 

Devi looked like a little miniature doctor. The neurosurgeon came in while the kids were here and Devin walked up and asked him "Where is your fweezer?" When I was explaining everything to the kids the first time, I explained that "they removed part of the bone to allow the brain to swell. Then they put it in the freezer. Isn't that silly? And Devin busted up laughing." He thought that was hilarious. He us such a fun kid.

 

 

 

My mom took this picture while the kids were visiting. He is starting to open his eyes more and look at us. When the kids were here was the longest I had seen him open his eyes. He has not been nearly as agitated the last couple of days- comfortable, yet still able to wake up. What a sweet little baby. I love to look in his beautiful eyes. I loved this moment she captured.

And sorry to post twice, but I felt like I should share this. After my family pulled away tonight, my Mom called and asked if I had seen Devin's whistle. He has lost it at some point at the hospital. It was not a big thing, but I knew it was important to him. I looked upstairs in the waiting room, checked the cafeteria, scoured the area we had sat for lunch and the grass they played in, checked the halls, asked Information, searched the bathrooms and finally found it in the first waiting room. As I was searching, I prayed that I would find it for him. I had the thought as I was frantically searching, this whistle is not a big thing, but it is important to me because it is important to my son. I felt that Heavenly Father feels the same way about our prayers. The things we pray about may not always be big or important things, but because they are important to us, they are important to our God. I felt such a drive to find that little whistle, partially because I so want Heavenly Father to answer my prayers, too, and find my whistle. I know he answers our prayers. I was grateful for this reminder tonight.

I am back to the hospital. We had a wonderful weekend. Saturday morning the kids performed at their piano recital and both did great- which I considered a miracle in and of itself considering our last couple weeks. Then we drove up here. The child life specialists had recommended taking lots of pictures far away and close up to prep the kids. We brought the kids in individually and they each did great. Both J and K even noticed the number on his ECG leads had changed from 12 to 13 (the date). My Sister and Bro-in-law had given us their points for a stay in the Marriott in LA and my Mom kindly stayed with Parker at the hospital again last night. It was like a mini vacation. We felt so pampered. We had a delightful time playing board games, watching cartoons and eating an amazing breakfast. Today the kids got to visit their brother and play in the playroom here. Since we missed church, we had a wonderful discussion with the kids about searching for and recognizing God's Light. I read this article this week and it has comforted me a lot. https://www.lds.org/general-confe…/…/the-hope-of-gods-light… Parker is doing pretty well. He is a lot more comfortable and not nearly as agitated and upset when he is awake. They are probably not going to attempt extubation again until Thursday. Please pray that will go well. We were hoping it would be earlier, but maybe this time will be really good for him to just relax and heal. His brain is still pretty swollen, so maybe the delay will be good for him.

The Hope of God’s Light - Dieter F. Uchtdorf

lds.org

The Hope of God’s Light - Dieter F. Uchtdorf

As we seek to increase our love for God and strive to love our neighbor, the light of the gospel will surround and uplift us.

lds.org

My sweet Mom arrived last night and offered to stay with Parker in the hospital so I could spend the night with my family tonight. We all needed this so badly. It was so good to see the kids. My favorite was watching them climb out of the pool again and again to wait their turn to have their Daddy throw them back in. And the cute little cannonballs. And when they all held hands and jumped in together. I got back just in time to watch the last 15 minutes of gymnastics this afternoon. I loved the girl's faces when they each saw me the first time, and then snuck away to give me a great big hug. I have missed them so bad. Parker had a restful day, aside from it took 3 tries to get his pic line in the right place. I sure love that little boy. My heart yearns to be with him, but he is in good hands. I did my best to hand pick his nurses while I am gone. We are taking the kids up to LA to see him tomorrow. I sure hope their little hearts don't break. They love their little brother so much.

We had a blessidly uneventful day. I think Parker was pretty exhausted from his adventures yesterday and slept most of the day. They are still trying to balance his medications to keep him happy, but hopefully awake, too. Please pray they can balance the medications and move again towards extubation. I really hope and pray things are uneventful tomorrow because I am slated to go home and see my kiddos!

Hoping for a better day today. Yesterday they were weaning him from pain medication to get him ready to extubate. Today the plan is to do what they need to keep him comfortable. Sounds good to me. His sweet nurse tucked toys into his hands and arms so that when he is upset instead of shaking, his hands squeeze the toys and it helps to ground him. I am so grateful for such amazing nurses that keep such constant vigilalance so I can sleep through the night. I am also grateful for stuffed animals and blankets. I am grateful for the amazing comfortable blanket and pillow my friend brought last week. I am thankful for sweet visitors from my ward yesterday that brought me chocolate and flowers and bought me lunch. I am thankful for sweet phone calls. I am thankful for my husband and Priesthood blessings for Parker and also me. Gosh this feels good. I am thankful for thankful posts and that they make me feel better. I am thankful and amazed and so thankful for the generosity of people. I have no idea how to thank you enough. I am thankful for family and friends. I am thankful for conference talks and the comfort of the spirit. I am thankful for the consoling words that are exactly what I need to hear. I am thankful I have my journal with me and my scriptures. I am in the process of looking up all of the scriptures you guys shared last week and I am loving that. I am thankful for grandparents, my kid's teachers and amazing friends that carpool and watch my kids. I am thankful for the many many prayers. I am so thankful for all of you. I am so incredibly thankful for my husband. And my baby.

No cuddles yet. His vocal chords were too swollen when they tried to extubate him and they had to re-intubate him again. I won't lie. Today was hard.

Thank you so much for your support and comments. They have meant so much. And thank you for your continued prayers. His life is no longer in danger, but like I said he has some mountains to climb. I have really taken comfort in what my sweet sister told me yesterday. I need to let go of the perfect son I expected, and accept the perfect son I've been given. He has been given to me. His life was spared and I am so grateful for that. I am excited to move into this next stage of recovery. Today the goals are to remove the c spine restrictions and get him extubated and then I get to hold my baby!!!

Look who came to visit me tonight! (Parker has some bacteria in his lungs from the intubation so everyone gets to play dress up.)

Sorry it took so long for me to post. It took awhile to process everything, both for them and us. The MRI shows what they suspected from the CT. It is pretty devastating. This little boy has some pretty big mountains to climb ahead of him. They will be able assess more as he wakes up even more. His poor little brain has been through an awful lot.

They just took off the EEGs and they are taking out the ICP monitor soon. Then we are off to the MRI sometime after. Everything rides on what the MRI shows. Please pray that the MRI will go well and there will be minimal injury to his poor little brain. Please.

It has been a good morning. His numbers look great and his ICP levels have been down since over the weekend. They are weaning him off of the sedation medication and hope to be off by the end off the day. He has been a bit agitated as he wakes up, so they also increased his pain medication a bit. So far he is reacting well and doing what they expect. He is starting to get a few blisters and might be starting to get sick. Please pray that he will continue to do well with pressures, that neither of us will get sick and that he won't have complications.

See? So pretty.

Tonight I am thankful for my sweet baby boy. I am thankful he squeezed my hand when they were tormenting him by changing his dressing. I am thankful I got to see my husband and spend a few hours with him. I am thankful for my in-laws and ALL they have done for my kiddos and us. I am thankful I got to spend the weekend with my kids. We snuggled, read books, built tents, played Lego's, went swimming, rollerblading and had pizza and watched Curious George. I am thankful I got to spend some time talking with my Bishop. I am thankful for ALL of the prayers and those that fasted. I am thankful for a beautiful sunset. I am thankful my baby is alive.

Thank you so much for all of you that have been praying and want to fast for Parker tomorrow. We have really felt your prayers and really appreciate all of the love and support we have felt. The swelling has come down a lot so far, especially in the last day or so. They are starting to wake him up and reduce the medications. We still have a long road ahead of us, but are happy with the progress he has made in the last couple of days. They won't know anything until he wakes up and they can do some assessments. He is still very very sick, but we are happy with his progress so far. Thank you for....everything. Thank you. -with Darrell Swenson

His ICP levels were down to 4-7 over night!!! Please pray that those levels will stay down and that his poor little brain can recover from all of this.

And thanks whoever brought us dinner tonight. It is absolutely delicious!!!

I just got home. It is so nice to be home for a couple of days. Darrell and I switched places so I could spend some time with the kids this weekend. Thank you thank you thank you for all of the prayers and those planning to fast with us on Sunday. I am so incredibly touched-- touched to tears every time I look at Facebook. He is still a very very sick little boy. He is making progress in his ICP levels, but he has a long way to go. Please continue to pray that his ICP levels will continue to go down, and that he will be stable through all of this.

Good morning from the crew.

They have increased his sedation medication for now.

His numbers are looking good this morning. I will know more when the Drs do their rounds. This morning I am thankful for a good night's sleep and respiration therapists and what a huge difference it made to suction Parker's lungs at 4 am. I am thankful the nurses and Doctors include me in the discussions, and even took my suggestion to call RT this morning since that had worked so well all during the day. I am thankful to have my scriptures here. I have really really enjoyed ...looking up the scriptures you shared. I am thankful my nurse told me the secret of the shower on the 8th floor so I did not have to wait forever. I am grateful there are so many stores within walking distance so I could pull pictures off Facebook, print them and tape them all over and outside the room. I feel like an overly proud Grandpa showing all the nurses and Drs his sweet picture. I love this little boy and am excited for him to be himself again someday

 

They are starting to give him nourishment. He is no longer in burst suppression- or a medically induced coma, but he is still heavily sedated. It is still a very precarious balance between medications and pressure in his brain. They tried to lower some medications today, but his pressures went back up. Please pray that his ICP levels will remain low and that they will be able to begin the process of waking him back up.

I have gained a whole new appreciation for nurses. I am grateful for amazing nurses. They are the ones in here almost constantly monitoring the medications, checking tubes for kinks, watching the monitors and thousands of other things. Sure the doctors recommend stuff, but the nurses are the ones doing it. I am grateful for monitors, respirators, and amazing medication dosing machines. I am grateful for kind nurses, Drs and wonderful Fellows who include me in conversations a...nd are so patient as I constantly pepper them with questions. I am grateful for texts, calls and such meaningful comments. I am thankful for the hundreds to thousands of people praying for him. I know several people have put his name on the temple prayer roll in multiple temples. I am thankful for a shower. I am thankful that my Home Teacher from church that was asked to watch over our family over a year ago just happens to be commuting to LA during the week and came to visit last night with another great family friend. I am grateful that that friend brought an amazingly comfortable pillow and big soft blanket with him and I was able to sleep like a baby. I am grateful that the kind nurses made Parker such a comfortable little foot and leg rest. I am grateful for excellent hospital food with lots of variety. I am thankful for a beautiful view out my window. I am thankful that my sweet little boy is alive and stable. Please pray that the pressure in his brain will go down.
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My favorite scripture is Prov. 3:5-6 Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge him and He shall direct your paths. That is the first scripture I ever memorized. What is you favorite scripture or quote?

I am grateful I just got to Skype with my kiddos. I miss them!

Parker is doing as well as expected. He is still really swollen, but stable. Please pray that he will remain stable and that the swelling will go down quickly and that he will not have more bleeding in his brain.

We have had a good day. His coloring and swelling look a lot better. His numbers look really good. The main goals are to keep him stabilized right where he is and wait for the swelling in his brain to go down. He is still very sick and precarious, but his ICP levels look great. Thank you for all of your prayers. We really feel them. We are not out of the woods yet, but happy with where he is right now. Please pray that his levels stay where they are and that the swelling will begin to come down.

I also want to be sure I record the blessings, miracles and many many tender mercies. Because we were traveling and visiting such good friends when this happened, we were able to leave so quickly to the ER without a worrying at all about our other kids. Darrell and I were able to be together through all of this. Thank you Alison Kitchen Gainer and Morgan Gainer. We can not thank you enough. That peace of mind was amazing. Also, my nephew has had many many seizures throughout... his life, so when it happened I recognized it for what it was, did not panic, but KNEW we needed to take him to the ER. Without the seizure, we would not have known how serious his minor fall was. He only fell off the bench- 2.5 feet. I am sure we were also nudged by the Spirit to RUN for that 911 call. I am thankful for the 911 dispatch who was so calm and stayed on the phone with us the whole way giving us directions and traffic recommendations- the advantage of a small town. I am greatful for the kind and competent person ell of the tiny Goleta ER. They were certainly not equipped for that serious of an injury for so little a person, but they worked vigilantly doing everything they could with the equipment they had, all the while calling all of the major hospitals within life flight to find a pediatric neurosurgeon in town this holiday weekend. They recognized the seriousness and knew he needed surgery immediately. Thank you. They were so kind and the nurses and doctors kept telling us they we're praying for him. They even called yesterday to check up on him.

We had a good night. His levels stayed great. They kept a close eye on his medications. It is quite the balance game between keeping his body and brain sedated enough, but not too much. I am so greatful for the constant vigilance of these amazing nurses and doctors. I was able to sleep 9 hours, waking just enough all night to ask how he was doing, get a positive update and go right back to sleep. What a blessing. I really needed that sleep. He is still a very very sick little boy and still missing part of his skull, but so far he is exactly what they expect and where they want him to be. Pray that this continues. Please pray for the doctors and nurses as they balance this medication. I just can't let myself think about how precarious things are. I will focus on those levels and they are good.