Donor Update

Kacie's Uncle Steve has been testing for the past couple of months. There has been a lot of up and downs through his experience. The great news is that he is a really good match. Dr. Jenkins told us that he didn't want to say that he was a better match than me because I'm Kacie's Mom but we had a really lucky match. So good that Kacie won't have to be on as much anti-rejection medicine after the transplant. The bad news has been all the conflicting tests results he has had on his kidneys so the doctors have put Steve through a lot of testing. However, the latest news is they are going to let him continue testing in Portland. Tentatively he is scheduled to go on Dec 30th. We are so grateful to Steve for his willingness to do this for Kacie and also for our backup donor who is standing by in case Steve is unable to proceed. We love you both for this incredible gift of life.

We are still waiting to hear from Tomorrow's Hope regarding placement for Brandon. He has been accepted and the last we heard it will be in January sometime. He is currently on five different medications that is keeping him somewhat stable but still very withdrawn. When I met with the staff from Tomorrow's Hope they said their first goal for Brandon would be to get him off some of his medication. I really hope they can do this because Brandon has gained a lot of weight due to one of the side effects from the meds and this has caused him to fall a lot more, but more than that I hope he will be happier.

Brady's Egg

Last week Brady was given an egg at preschool that he had to care for. He had to take it to school and home everyday for the week. He was the only one that made it through the week without breaking it. It was a little nerve-racking for me during this experiment. I thought for sure we would end up with a broken egg in the car or at home. He was so proud of himself. Good job Brady!

Happy Halloween

The kids had a lot of fun this halloween. Everyone was healthy and happy, which was nice.

20th Anniversary

Scott and I were able to celebrate our 20th Anniversary in Las Vegas Oct 23-26. We stayed at the Luxor which was nice. We were able to see U2 in concert with the Blackeyed Peas. Our 15 minute ride to Sams Boyd Stadium took us an hour and a half, but it was so fun to listen to Reid, Zac and Scott catch up. Karli and I couldn't help but laugh as we shook our heads. We haven't laughed that much in a long time which was great therapy. The concert was awesome!!! I felt like a teenager again. There were over 40,000 people there, by far the largest concert I have ever been too. After we got back to our hotel we were hungry so we ate and visited some more with Zac and Karli. By the time we got back to our room we had been awake for 24 hours (A first for me, done intentionally).

After we came to on Saturday, we had fun with Zac and Karli walking the strip and checking out all the different casinos. We had some great ice cream at Serendipitys and really enjoyed the water show at the Bellagio.

Here I was having fun trying out my new camera. This was taken at the Bellagio in their garden room. Later Reid and Laura met up with us and we went to dinner at Sammy's. They had great personal pizzas. Mine had goat cheese, mushrooms, artichoke and sun dried tomatoes on whole wheat crust. It was delicious, Scott wasn't adventurous. After dinner we went to Fremont Street and had a great time there. Scott had to try their fried Oreos and Twinkies.

Scott and Zac wanted to win that car so bad, but they sure had a lot of fun trying. Maybe next time, not:) Later after Reid and Laura had to leave, Zac and Karli decided to spend another night at the Tropicana so we went to see what their room was like. It wasn't bad for the money. It definitely had a 70's feel. Scott, Zac and I stayed up again until 3 a.m. playing the slots. We had a lot of laughs and not much to show for winnings, but we were able to let a little bit of money last a long time.

Sunday Zac and Karli went back home and Scott and I spent the day at Reid and Laura's house. They have a beautiful new home. Laura made a wonderful Sunday dinner and it was fun playing with the girls and just visiting. Later that night Scott and I had dinner at the Rain forest Cafe. It was a fun new experience. We stayed another night at the Luxor then headed back home on Monday. We had a great time. It was fun being with friends and family. I think it definitely helped us keep our minds off our troubles.

Brandon Update

We finally have a diagnosis for Brandon. The last MRI results reveal a "partial agenesis of the posterior corpus collosum." How's that for a mouth full? The corpus collosum is the brain structure that connects the right and left sides of the brain. This facilitates communication between the right and left hemispheres of the brain. Patients with this type of brain often present with psychotic symptoms including hallucinations and delusions, especially in adolescence. Typical treatment is an antipsychotic medication such as Abilify. Presently, Brandon is on six different medications. The hope is that we can decrease many of those by adding Abilify. I googled this condition and found that it is a rare birth defect that can develop between the 5th and 16th week of pregnancy. In most cases it is not possible to know what caused the disorder, but they do believe that it is a genetic malfunction. We wonder if this is not what Brandon has had his whole life because of his signs and symptoms such as seizures, spasticity, learning delays, and social miscues. The unusual social behavior is often mistaken for aspergers or autism. It is hard to understand why we are just finding out about this so I requested the MRI results from one taken in 1997. It will be interesting to see the comparison. Brandon has been on Abilify for about 3 weeks now and does seem somewhat better. It is still a mystery to us, but as we study it and learn more, the pieces of the puzzle are coming together. We have been researching ways to help Brandon. It appears that one of the best ways is to place him is a group home. The group homes have better programs and resources to help him. Nyssa is just too small for such facilities. The one that we are looking at is called Tomorrow's Hope. In the Boise/Meridian area there are five homes affiliated with this association. Three workers from the group home came to Nyssa on Wednesday to observe Brandon and meet me and his teacher. They wanted to observe him there so they could familiarize themselves with his abilities and behaviors, etc. This will allow them to place him in a home more suited for his needs. This has been a very difficult decision for us. On the days that he does OK I wonder what are we doing and then the next day he will be a tyrant, but the more we study these homes the better we feel that in the long run it will be the best hope for Brandon. It was nice to be assured that we still have total say in his care. For the first 30 days we may not be able to have contact with him, it just depends on how he does. After the trail period we will be able to visit him as much as we want. Thank you for your continued love and support. It means so much to us to know that you care. We feel your love and your prayers. Thanks!

Happy Birthday Brady!

Brady turned 5 on October 5th. All he ever asked for was a waterfall cake and balloons so we did our best to comply. He has found a new love for waterfalls since we took him to Multnomah Falls last spring. I can't believe Brady is five, he has been such a blessing to our family. Brady is a very busy boy and always has a smile to share. I don't think he ever stops until it's bed time and then he crashes. By far he has been my easiest one to get to bed. Some nights he is a sleep before I turn out the lights. We love you Brady!!!

Kacie's 5th Grade Trip to McCall

I was able to go with Kacie on her overnight 5th grade trip to McCall. It was really cold, but a lot of fun. I think I learned more than the kids did. Their were 105 kids and they learned about animals, trees and team building. The last day we were able to visit the McCall Smokejumpers. That was cool! Kacie did really well skipping her dialysis for the night and she really enjoyed breakfast for the 1st time in a long time. Here are a few pictures:

Lots of Questions For The Doc

Today we hit Dr. Jenkins with a ton of questions. Kacie's number one question was if we could postpone the transplant to after the New Year. November 10th was the earliest we could get a surgery date with Dr. Barry and Kacie wasn't too thrilled with the idea of having it done just before Thanksgiving and Christmas. Dr. Jenkins thought Kacie had enough residual kidney function that she would be fine and hopefully some of the flu season will be over by then. His only request was that we didn't interfere with his skiing trip. Kacie's second question was if she could skip a night of dialysis so she could go with her class on the overnight trip to McCall next Wednesday and he said she could. I'm beginning to think that Kacie has Dr. Jenkins wrapped around her little finger:) Another concern we have had is all the scaring Kacie is getting in her veins from all the blood work. He said they would consider putting in a pick-line during the transplant and leave it in for a month because she will be getting blood work done three times a week after the surgery. I then asked him about flu shots. He said Kacie needed the regular flu shot and the H1N1 flu shot and if we could swing it the rest of our family needed them as well.

I also updated Dr. Jenkins about Brandon's extreme high blood pressure. Last Friday night Brandon started getting bad headaches and then Saturday night it finally dawned on me that it might be his blood pressure causing the headaches. After I took his blood pressure I just about died when it read 178 over 131. Dr. Jenkins wants us to rule out any problems with Brandon's shunt first then see him next Wednesday.

Getting Closer

Looks like we are getting closer to getting this done. All the tests so far have come back good. We just have one more test we are waiting for the results on and it takes about 8-10 days. However, because they are not too worried about it they are starting to look at possible surgery dates. Right now we are set for the end of October if everything goes well. We are preparing for that time but for some reason I won't believe it until after the transplant actually happens. Yesterday again I was filled with a lot of mixed feelings. I think I was expecting another set back and when the word came back OK, I wasn't sure how to react. I guess I was still hoping for a miracle and not have to put Kacie through all this. But hopefully our miracle is to finally have found a healthy donor that is willing to sacrifice so much. Thank you, we love you and will be forever indebted to you:)

1st Week of School

Kacie had a great 1st week back at school. It has been so fun to see her act like her old self again. Tuesday night her dialysis machine broke and we didn't get her new one until 10:30 pm Wednesday and so I wasn't able to get her dialysis started until after 11:00 pm. However, come Thursday morning she was determined she was going to make it to school so we ended her dialysis early so she could make it to school on time. She seemed to do OK with only 8 1/2 cycles instead of the 10. Later that day she was begging me to postpone the transplant till next summer or even after Christmas. Friday I asked Dr. Jenkins if Kacie has any say in the timing of all of this. He said because the viruses this winter are predicted to be much worse she doesn't. The sooner we get this done the better. We do have a good friend going to Portland on Sept 2nd to hopefully finalize testing. If all goes good there we are hoping by the end of September. The bad news is that because the virus season is suppose to be so bad, Dr. Jenkins is thinking of keeping Kacie out of school until January. This just about broke my heart because Kacie is enjoying school so much.

Thursday we took Brandon to see a Pyschiatrist in Boise (Dr. Pines). He is planning to change up some of his medicine again but this time much slower. Our goal is to get him sleeping at night and more engaged during the day. He also thought Brandon would do better in a home so Mom and I went and toured some. I was impressed by the homes, they are just normal homes built in some of the Meridian subdivisions. However, seeing the other kids put a big lump in my throat. They made Brandon look normal. I don't think I can do this just yet.

Fun Day at the Lagoon (Aug. 21, 2009)

The kids had a ball. Kacie & Brady couldn't get enough of the rides. They both even went on Wicked. I wasn't going to let Brady go but he cried so much I finally gave in. After the ride he looked at me with those big blue eyes and said, "WHAT HAPPENED?" It was so funny. After each ride, I had to drag him out of the car, he just wanted to keep going. He didn't understand why we had to get back in line again. Brandon enjoyed the train ride. The workers were nice enough to let us keep riding as long as we wanted. Grandma Sue did a great job of spoiling all the kids with T-shirts and toys. We had a great day.

Another Disappointment

We found out last Thursday that Rosie is unable to be a donor for Kacie. From the CT Scan they found a kidney stone in each of her kidneys. When Rosie and EJ were in Portland they were still hopeful because the stones were so small, but Dr. Barry said he wasn't willing to take a chance on giving Kacie a bad kidney and risking Rosie's health by her plugging up her remaining kidney with stones. This has been really hard and I know it was really hard on Rosie because she had such a good experience in Portland and felt so good about everything. We are so grateful to her for her willingness to try.

We are filled with so many mixed emotions. When Kacie found out she questioned if we could wait and do the transplant next summer so she wouldn't have to miss anymore school, but when I asked if she really wanted to be on dialysis for another year she immediately said no. It is so hard to see her like this. She did however have a great 4th of July with all her cousins. She did the slip n slide and we played volleyball, ate lots of food and Scott put on a great firework show until we had one get away and start a fire. I haven't seen him move that fast in a long time:) We were so glad no one got hurt.

Thanks again for the many words of encouragement and your constant thoughts and prayers on our behalf. We are determined to make this happen.

Talbot Update

Rosie and EJ are flying to Portland July 1st to finish up her testing. If all goes well the next available OR date is July 31st. We hope everything turns out OK. We will forever be indebted to Rosie for this incredible gift of life she is giving Kacie.

Kacie has been holding up pretty good physically but her spirits are down. We will be so glad to have this chapter of our lives over. She scared us pretty bad one night last week. In the middle of the night she somehow ended up in her closet disoriented and screaming. During all this she managed to pull off one of her bags from the dialysis machine and just about yanked her tube out from her abdomen. We had to put her on antibiotics to prevent any infection. They have warned us that an infection in her belly from contamination is VERY painful. Luckily so far she has been OK.

We are working on getting Brandon into see Dr. Pines a Psychiatrist out of St. Als. He may admit him to the St. Als Psyciatrict unit to observe and try some new meds or we might try doing it at home. Most doctors have agreed that Brandon is a complicated and unique case. No one seems to know why he has digressed so much. Whether by his choice or not this maybe his course in life. If the new meds don't work, Scott and I might have the difficult decision of whether or not Brandon would be happier in a home with 24 hour supervision. The doctors have told us that many times kids like this are happier with more structure and the same routine everyday. We already feel like we have been mourning for the loss of our son.

Special People

We had a special couple come to see us today and share a neat experience. They said they had a cow have twins and they have never had that happen before in all these years so they decided to sell one of them and give Kacie the calf money. They handed her a check made out to her directly from the livestock producer for $515.71. They went on to say that soon after their decision to do this another cow had twins. It was a tender moment as I could see tears swell up in his eyes as he shared this story with us.

We are so blessed by so many special people. Thank you!

Happy Mother's Day

To all you moms out there we want to wish you a very Happy Mother's Day!

I know it has been awhile since we posted anything, Sorry. We did get some good news from Rosie's cross-match. She matches half of Kacie's DNA which is the same compatibility as I am. We were all pleasantly surprised. We are now waiting for her to do all of the rest of her testing. We are so grateful to her and her family for their willingness and sacrifice to do this. We would also like to thank all the others that have offered to be a donor and for once reason or another couldn't proceed. We sincerely appreciate all of your love and support. The last we were told is that we are looking at the end of June or first of July before we can do the transplant.

We are still having a lot of ups and downs with Brandon. If anyone has any expert advice on mental health issues, we could use all the help we can get.

Brady has been our little ray of sunshine through all this and we are so glad for the progress he is making with his speech.

Still Riding The Roller Coaster

I got some bad news this week. Kacie's Doctor informed me that I won't be able to donate a kidney. He said that my right kidney was significantly bigger than my left which means it is doing most of the work. My left kidney has some old scaring from when I was a child possibly due to a bad bladder or kidney infection. He said it would work in a pinch but it would only last 5 to 10 years. Dr. Jenkins wants to continue to rule out any blood relatives first since that will give Kacie the best chance of a kidney that will last.

This has been a big let down. This weekend we held a family fast in hopes of finding that right donor for Kacie. It has been hard to rethink everything but we will get through this. I'm slowly learning that there is someone else in charge and I need to trust Him more.

Another Trip to Portland

On April Fool's Day I spent the day in Portland having more tests. First I gave more blood and urine samples then I had an ECG done on my heart followed by another boring session with the Social worker. At 11:30 I had to have an IV for a CT scan of my kidneys. It felt like I was on that table for hours and when they injected the dye I thought for sure I peed my pants. I then had a chest and kidney xray. We got done just in time for my appointment with the surgeon at 1:00. We were there until 5:00. I found out that my right kidney is larger than my left, meaning that it is probably the stronger of the two so they would keep it for me and give Kacie the left one, which is easier for the surgeons to work with anyways. I also learned that everyone has an artery and vein to each kidney and I have an artery and two veins to mine so they will have extra to work with. I met another one of the surgeons and I really liked her. Her name is Jordana Gaumond M.D. I'm hoping it works out and she can be my surgeon. She told me that Kacie's case will be presented to a board of surgeons and they will review all of our medical records to determine if it is approved. She said more than likely I will need to have one more test. The surgery could happen in two weeks or two months depending on availability of the OR and if I'm OK to be Kacie's donor.

After we were able to finally leave we visited the Ronald McDonald house near OHSU and then made an attempt at finding another place and got lost and then I got sick. We decided I needed to eat something and by the time we got done we almost missed our flight. I have never been that close before. When we went to check in, the computer said we were too late so we asked the airline and they said since we didn't have any luggage to check we might make it. When we got to security there was a long line and Mom cut right to the front I couldn't believe nobody got mad at us.

I would like to make a special thank you to Becky for shuttling us around and to Mom for traveling with me. It was a long hard day but it will all be worth it in the end.

Brandon Update

On March 25th Brandon met with Dr. Jenkins (Kacie's kidney doctor) to rule out any problems with his kidneys and adrenaline glands. Everything checked out OK. The next day he had an MRI which also checked out OK.

It has been so frustrating that we can't seem to find any answers. So the other day I spent a lot of time on the Internet searching mental health symptoms and I clicked on schizophrenia. I was amazed at how well everything fit. I am also amazed that no doctor has even suggested this.

Some things that I have learned is that psychotic symptoms usually emerge in men in their late teens. In adolescents, the first signs can include a change of friends, a drop in grades, sleep problems, and irritability. They have a decreased ability to speak, express emotion, or find pleasure in everyday life. They also may have hallucinations, delusions and disorders of movement. Speech may be garbled or hard to understand. Another form is "thought blocking," in which the person stops abruptly in the middle of a thought. They may also exhibit involuntary movements and may grimace or exhibit unusual mannerisms. They may repeat certain motions over and over or, in extreme cases may become catatonic. People with schizophrenia may not make sense when they talk, may sit for hours without moving or talking much, or may seem perfectly fine until they talk about what they are really thinking.

I think Brandon has shown signs of all of these symptoms and now our challenge is finding a doctor that can help us. I do feel somewhat better knowing that maybe I found some answers.

So Far So Good!!!

I just found out that all my blood work and glucose tests were perfect! I go back to Portland on April 1st to have more tests and meet with the surgeon.

When we were in Portland last time they did blood cross matching tests where they put our blood together to see how well they like each other and that all came back good. Monday they did urine analysis and drew more blood and also did a glucose test.

We also learned in Portland that a kidney from a living donor will only last up to 18 years. That was new to me so I have been wondering about saving my kidney for later. I called Dr. Jenkins because I've been so worried about this and he told me that I would have a much greater chance of giving Kacie a kidney that would last a life time because we would have more markers that are the same. The other positive thing Kacie has going for her is that she does not have any other underlying diseases.

I also found out that my blood type is O+. I feel so blessed that so far I am able do this for Kacie. The nurse told me today that she has had some parents that can't donate just because neither parent has the same blood type as their child.

Thanks Alan & Tami

We had an overwhelming yet good trip to Portland Mar. 3-6. Kacie had several tests done and I had my blood drawn as well to see how compatible we are. We had a lot of information thrown at us. Kacie held up really well on the trip. She had her first airplane ride. Alan and Tami went with us and we can't begin to thank them enough for all the support they have been to us. Our new hospital code we will have to learn at Dornbeckers.
Day One: EKG, Transplant Education Class, Transplant Evaluation Clinic where we met with the surgeon and other doctors (Kacie has some sinus issues we have to resolve 1st before the transplant). Then we both had, which seemed like a ton, of blood drawn (about 10 tubes each).

Day Two: Abdominal Ultrasound, Chest X-ray and Bone Age test. Then we met with a Nutritionist and a Social Worker.

Dr. Barry (the surgeon) is a man of very few words. He said that Kacie and I reminded him of his daughters because of our eye color. We found out later from the Nutritionist that he decides who gets a transplant based on their blood work. If a patient does well taking care of themselves (aka taking all their medications) he will approve it. Also that he is the best in the country and teaches transplantation all over the world and now works with just pediatrics.

Happy Valentine's Day!

Kacie and Brandon both had appointments this week.

Dr. Jenkins was very impressed with how well Kacie looked. He asked me if I was giving her supplements because he was so shocked with how good her blood work was. I told him it was all Kacie. She is very good at knowing what food she can eat and has taken total control of her medications. He said she is ready for the transplant and thinks maybe this May. We hope towards the end so Scott wouldn't miss any work.

Dr. Jenkins and Kacie were talking about playing the Wii and he wants to challenge Kacie to a game of ski jumping. I told him he better not try bowling because Kacie would probably beat him. (Today she scored 235)

Brandon saw Dr. Whitney for the first time. I was very impressed with him. We visited with him for about 90 minutes and Brandon maybe said two words. Dr. Whitney is gathering all of Brandon's past medical records to go over. He thinks there is still something physical that we are missing that is causing his problems. He wants Brandon to go to an Endocrinologist next. If we rule out everything possible then he will test him for Autism. He said kids just don't get diagnosed with autism when their 14 years old. The last thing Dr. Whitney told Brandon was that he wouldn't stop until Brandon was happy again. He also wanted me to email him with any sudden behavior changes that Brandon has.

Brandon's Hospital Visit

Brandon was admitted at St. Luke's Tuesday Jan 20th to be observed. They did a video and EEG monitoring. They ruled out that he isn't having any seizure activity. We are happy about that, but sad they still haven't found out the real problem. He did have high blood pressure while he was there so we will be keeping an eye on that. We are going to start another medication to help with anxiety and blood pressure. He is coming home today. Thanks so much to Grandma Sue for staying with him while he was there. (What would we do without you:)

We are now looking into taking him to Dr. Whitney at the Intermountain Autism and Development Center in Nampa to see what they can do to help him. We will just keep praying that Brandon will soon feel like his old self again.

Kacie will be going to Portland March 4th & 5th to start her transplant process at the Oregon Health and Science Hospital. Her surgeon is Dr. Barry. I completed my interview today become a donor. The questions are pretty extensive. When we were just about done she asked me why I wanted to be a donor and all I could do was cry. I still can't believe we are going down this road. I will be so relieved when this is all behind us.

Thank you so much for all your thoughts and prayers.

Medical Update

Brandon is still having a lot of problems. In a few weeks they are going to observe him in the hospital with a video and EEG monitoring. He will be there a few days. We sure hope they can find the problem. He keeps she mask on about 50% of the time but still not sleeping well so we think there is more going on than just sleep apnea.

We saw Dr. Jenkins again on Jan 7th. Kacie's kidney function has not changed. We will be going to Portland in a few weeks for the first step in the process. The transplant will occur sometime between April and June. Scott and I will be able to do all the donor tests here in Boise. Kacie is A positive so it will be easy to find a match. The donor has to have a CT scan, blood and urine tests. Dr. Jenkins changed up her dialysis again. She is now doing 10 cycles getting 15,000 ml over 11 hours with 1400 per cycle. Her last fill is 1000.