School's Out

Kenzie is doing well right now. She seems to get a little better each day. We will see the neurosurgeon next week for a follow up/check up and the neurooncologist to find out what the treatment plan will be. Kenzie did go to school for a couple hours on Tuesday to work on her autograph book and Thursday morning for the end-of-year class ice cream party. She wanted to see her class again and tell everyone bye for the summer. Carson also graduated from Kindergarten today and lost his first tooth yesterday. He's got a little lisp going on right now. He is getting to be a big boy.

Home At Last

Makenzie came home today. She got out around 10:30 this morning. She wasn't home long though... she had two birthday parties to make it to. She will do outpatient physical and occupational therapy on this side of town for a little while. And, or course, she'll have some follow up appointments down at the hospital. We still don't know what the next round of treatment will be. We are still waiting on one report about the DNA of her tumor. Then we should find out what is next. For now, Makenzie is looking forward to visiting her class at school next week and having a relaxing summer.

Still Pluggin Away

Makenzie is still in the hospital, still improving some each day. She got moved to a private room on Tuesday night. That is heaven. She is still doing plenty of therapy each day. And they want to run a few tests just to make sure her memory and cognitive abilities haven't been affected. She got all her staples out, bandages off, and port de-accessed. All her meds now are just pills. So, she is more mobile and comfortable. Her brothers have been able to visit almost every day since Saturday so she has been happy to see them regularly. They spend time in the playroom and out on the playground playing. She should get out of there on Saturday. She is definitely ready!

Home?

Beginning to wonder if we will ever be able to come home. :) Our new roommate is nice but still not the same as having our own room. Kenzie is a trooper. I just had a meeting with a bunch of people from the hospital. They are wanting her to have more tests. They are tests to check memory and things that she might need some help with as part of the recovery process. They are saying we can go home Saturday. I asked them to PLEASE be done in the morning because she has two birthday parties to go to. At least that is this week. They tried to say they wanted us to stay the whole weekend but I was going to say no way. They don't even get twice-a-day therapy during the weekend. She is making great progress everyday. I think that is why they want her here longer. As long as she is making huge improvements it is beneficial to have her stay here. I just wanted her home for Sunday so we can celebrate Brayden's birthday. His Birthday is today. He is 4. Carson was so funny this morning. He said "Happy Birthday Brayden. Boy mom, I think he grew over night. His arms look bigger." I thought maybe he would wake up this morning and decide he was not going to be mischievious...no such luck. We are at the hospital and he won't leave anything alone. He is so Dennis the Menace. :) I LOVE him. :) I will post some pictures of him later. Thanks for all the help we have received. We really appreciate it. :)

Saturday and Sunday

There's not too much new to report on the medical side. Kenzie is basically in the hospital for physical therapy right now. We are hoping she will be able to come home the middle of this week. She's been working on Mother's Day projects with Grandmas when they spent the night. So, we had our Mother's Day in the hospital today. The kids all gave mom their presents. Kenzie made cards, a picture frame, and a flower arrangement. She also bought a little book from the gift shop. The boy's made some home made cards and got mommy some new flip flops and some her favorite candies, LemonHeads and Red Hots. Mom also got some homemade banana bread and cookies. Brayden didn't want to give up his card though, he signed his name to it but he thought it was a birthday card for him since his birthday is Tuesday.

Kenzie did get her room switched. Her previous teenage roommate was rather cranky from the pain she was in and she taught Makenzie a few new words during her night time tantrums. Her new roommate is her age and is a much better mood. Those floor rooms are miserable, tiny, cramped, and you have to have a roommate. And that is stinky even when you have a good roommate.

Friday

Friday was another good day, two good days in a row now. We're back on the floor with screaming babies and rooms so small you can barely move. Kenzie did 2 PT/OT sessions. They worked her hard and she did well. She is getting stronger. The doctors say if she continues to gain strength and do well then we are looking at going home on Tuesday or Wednesday.

She stopped one of the two seizure medicines she was on. So, now, hopefully the loopiness with go away. We did get some preliminary pathology results. It appears that the tumor is still low-grade. Of course, that is good news. We also sent a sample to the Molecular Profiling Institute, a lab here in Phoenix that analyzes the DNA in each tumor to see if there is a specific treatment that might be more effective. The brain tumor team (a large group of doctors) will meet on Wednesday to discuss what the treatment will be for the remaining part of the tumor that is inoperable.

For the fun stuff, Grandma Alice is spending the night tonight. She gets a turn on the yucky, uncomfortable chair. The Phoenix Zoo brought down some animals for the kids in the hospital to see. They brought an African hedgehog. We learned some interesting, disgusting things about Hedgehogs. They roll around in lion poop and pee so they smell like lions so no other animals will mess with them. But, Hyenas will eat them. the only trick is getting them to unroll so their little spines aren't a problem. Hedgehogs unroll when it rains, so the Hyenas, to simulate rain (you guessed it), pee on the hedgehogs. Then, when they unroll, they eat them. Appetizing, right? They also brought rabbits, Fire Bellied Toads, and rats. The school teachers at the hospital also stopped by. But I don't think we are going to worry too much about school since there are only 2 weeks left.

Better Day Today

After the seizures yesterday morning, Kenzie went back to ICU for a while and was on some serious anti-convulsants. She slept most of the day. She spent the night in the ICU. She did all her therapy this morning and played with one of the healing dogs. She is still just a little loopy from the anti-seizure drugs. But she is talking plenty and making sense! She is still on two anti-seizure drugs, but not the one that makes her high. She will probably be on an anti-seizure drug for about 6 months after getting out of here... just to be safe. They were not able to pin down exactly why she had seizures, but it wasn't increased pressure on the brain, blood clots, or anything really serious... probably just a little complication from brain surgery and a combination of little things coming together.

Carson got to come down and visit Kenzie today. She was so happy to see him she cried. He hung out for several hours. They watched movies and went out to a little carnival at the PCH playground. Channel 12 is doing a Give-A-Thon here (the carnival was part of that). This place is crawling with celebrities and athletes. Kenzie actually was interviewed live on TV during the 5:00 news. Over the past 3 years she's become a regular on the TV. She could have a career possibility there... anything that involves talking a lot would be a good possibility. So, now that the seizure episodes are hopefully behind us, we are back to occupational therapy, physical therapy, and all the other therapies twice a day now. She is working to get strong so she can get out of here. If we need to do anything with the shunt, that will be several weeks from now and would most likely be just a couple days in the hospital.

High as a Kite

This afternoon/evening have been pretty good. Kenzie slept almost the whole day. She woke up around dinner time and was pretty chatty. The medicine they have her on is pretty heavy duty. She kept telling us random things. Who is behind you, what's his last name, they moved awhile ago, pigs rolling around in mud. We were laughing and Dr. Moss (neurosurgeon) said oh she is "high". She is getting ready for bed. She is still with it enough to fight me brushing her teeth. We are grateful for all of the extra prayers today. They were felt. We feel so blessed that nothing was wrong in the MRI. It is nice to have our own room again. The room my mom and her were in last night was noisy. I don't think her or my mom slept very well. The other little girl kept crying thru the night and the mom had the tv on all night. Sorry mom, thanks for staying with her. :) Kenzie wanted me to put one of her favorite scriptures on here tonight: 1 Nephi 3:7 : And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them. Kenzie is such a good example of obedience. She is so wise beyond her years. She is always trying to choose the right. What a good example she is to others...especially me. :) Thanks for being so GREAT Makenzie...I LOVE YOU!!!!

Seizures This Morning

Makenzie had some seizures this morning which worried us. But they gave her medication to stop them and she got an MRI. There was some concern about the shunt being plugged or blood clots in the brain but everything was OK on the MRI. They figure it is just a result of the surgery, about 15-20% of kids have seizures following a brain tumor operation. So we are back in the PICU resting now. She is waking up from the medicines they gave her for the seizures. Everything else is looking good, CSF samples are showing no infection. Rehab is on hold for today while she rests up from the seizures.

Taking a Walk, Beau the Dog, and Music

First of all please ignore the hair. :) That was the only way to get it off her face and not bother her incision. If you are sensitive be careful when you look at the pics. :)

We are starting out a lot better today than we were doing last night. She has had a busy morning as you can see from the pictures. She really liked the music. They are really pushing to get her moved to the floor. I am not to interested because we would have to have a room mate and a much smaller room if you can believe. I hope she can get strong quick so she won't have to be in there too long. Her vision seems a little off. It is hard for her to find things. We have to help her and point it out before she sees it. I think it might be just time and healing for that to come back. Her left field of vision seems to be worse than the right. She is on a bunch of different antibiotics and one of them makes her very itchy. I was so worried last night that she would be thowing up and itchy. We said a prayer and she has not been itching since. :) She is eating crackers and visiting with some people. Go figure... They sent a speech therapist in the other day. We laughed. Whats even funnier is they are coming back. Maybe they are bored??? Needing someone to talk to them???

Makenzie has done pretty well thru the day. I think I had a harder time than she did. They moved her to the floor. :( It is like going from the Hilton to the motel 6) We have a roommate (she snores) in an little tiny room. There is enough room for one dirty chair for each patients family member. I am bringing my Clorox wipes tomorrow and scrubbing it down. My poor mom is the first one that get to have an enjoyable night on a dirty chair. I am so OCD. Kenzie got really emotional when it got time for us to leave. She had to go potty and we had to wait for a nurse. It seemed like it took forever. The problem with the floor is the nurses have 6 patients and the PICU they only have two. Big difference. We are now on our own. Hopefully she will spend most of the day in therapy so we won't have to rely on them as much. We had the BEST nurses in the PICU. They are just there to help you get better. They are great! I am hosting a little pity party if anyone wants to join. I just wanted to vent. I will get over it and tomorrow will be a new day. It will be good. Thanks Erin for taking care of Carson this afternoon. We REALLY appreciate it. :)