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Drum role please, put on your seatbelt and keep hands and feet in at all time- we are about to make another sharp turn... One of the nurses from the liver team called this morning to tell me that Marek's labs looked great- the white blood count has been very low- the key indicator that Marek's portal vein is narrowing- well his counts are back up into the normal range. His platlet count is still low but much higher than a few weeks ago. So what does this mean for Marek? It means he may not even need this venigraph. We will repeat blood work this week and they would still like to do the test- a CTA, to be sure they aren't missing anything. We don't know why his white count was so long and for so long but I have begun to realize that we don't usually know why things happen- we are just grateful when they improve. As long as labs look good next week then I am comfortable waiting until Jan. and if he is healthy then we will try the test again at Children's. I was so worried, frustrated and scared yesterday and today I feel like I could fly. Carl and I will have a quiet Thanksgiving dinner at our house when he gets off of work tomorrow evening. We have a lot to be Thankful for and Alex said he has a special prayer he would like to say. (Probably a wish for Christmas gifts!! :-)) My mom will spend the day with my brother and his family and then she and I will have to do some shopping over the weekend. Happy Thanksgiving
I have been having a difficult week emotionaly. I have come to a conclusion, the more medicine's Marek's on the more I worry. We were down to just 1 med- and we are now back to 6 a day with multiple doses. I try to explain to people that Marek doesn't just get a cold- he always ends up in the hospital and it throws him out of whack for weeks, even months, but I don't think I even realize how serious it is until we are dealing with it again. There is really nothing we can do that we aren't already doing and that's pretty frustrating too. Frustrated has become a very well used word in my vocabulary lately. Thanks to our very understanding and patient baby sitter I did make it through the week without missing work but there were a lot of phone calls, much concern and my mind was elsewhere much of the time. Carl and I continue to look at our options and come up with possible solutions but none of them look that good right now. I am thinking that when we get Marek healthy again I won't have the anxiety I am having about balancing work and family. I don't want to make a decision in haste, I also don't want to have regrets. On other family news.... I went to a conference last night for Alex and the teacher said he was doing great. It was a very positive report. Scotty will be 8 months tomorrow. Happy Birthday Scotty!! "Uncle Scott and Aunt Jen" will be here tomorrow for a 1 day visit
It is getting very difficult to balance a full time job with and being a good mom to our boys. I don't know what the answer is yet but I think after the holidays Carl and I are going to have to make some tough decisions about our careers and family. I want to give a 100% to both and I just am finding or admitting that it is really hard! I had to take a lot of time off this week and I have a very big project due in a few days. When I am working I keep thinking what am I doing here- I should be home with my son while he is sick. Ughh... My mom is flying in on Sunday to go to Chicago with us. Carl will stay home and work and we will take all of the boys with us. The Kohl's house does a turkey dinner on Thanksgiving so we will not go without a Thanksgiving- just not quite what we had in mind. Marek's dr. explained to us in detail of what the procedures will be and what to expect. I'll update as we have new info. Halloween was very rushed but a lot of fun. Alex has enough candy to get through until next Halloween! I took him dressed as Darth Vader (he's a huge Star Wars fan) and Scott (dressed as a cow)out for a while and Carl and Marek passed out candy. When we stopped back at home Marek decided he wanted to go out too and was dressed in his batman costume and ready to go -so Scott stayed home with Carl and I took Marek and Alex out for a few more streets. It started to rain just as we got to our porch- perfect timing. Alex did mention that Scott was a "live Cow"- I asked him what he was talking about and he said- well when Marek wore that costume he looked like a dead cow. That was when Marek was 3 months old and was just a few days before we learned that he was going to need the transplant. He did look horrible but we didn't realize it until much later. It's amazing when you're with someone every day that you can't even see what others must see right away. We will be leaving on Sunday and Marek's first test is scheduled for Monday at 12:30pm Central time. They said to plan on 4 hours- that seems like a long time for test. Then his surgery is scheduled for Tuesday at 8:30am- he will be in patient that night and hopefully we will be released and we can be home Wed. night. We will be taking the whole family which is actually very comforting to have us all together, although it may be difficult at times, it is worth it. I will update when possible- and please keep Marek in your prayers-
Well we finally have a game plan and it wasn't really what I was hoping for but at least we will get to the root of Marek's liver numbers going up. The transplant team in Chicago believes that Marek's Portal Vein may be too small. When he was transplanted and they made the connection with Scott's liver there was a big difference in size. There was some concern in the beginning but Dr. Superina (the surgeon) didn't think it would cause any problems. Well it now appears to be even smaller when it should be the same or larger and is a problem. We will be going back to Chicago on Nov. 6th for 4-5 days so that they can do some more diagnostic procedures and but perform angioplasty (sp?) on the 8th. This will open up the vein and should work indefinitely, if that doesn't work then they will open him up and place a plastic shunt in there and this always works but is a much bigger deal as far as recovery time and risks involved. They will also do a liver biopsy to be sure that his liver is not damaged. His function isn't that bad so we are not expecting any surprises. I am very sad that Marek has to go through more tests and another surgery. The older he gets the more difficult this all gets. He is now realizing that when he goes the hospital or drs. that it will mean more poking, prodding and pain. He also has to go without food before all of these tests because they do them under anesthesia and it's very difficult to explain to him why you won't even give him a glass of water. On the bright side he is doing great! He is staying healthy, even when Alex was sick all weekend!! That is huge for us. Of course he could still end up getting it but I am hopeful that he is getting stronger and fighting things off better. Carl and I have to make a big decision soon. He has been offered a full time position that would require us to put Scotty and Marek in day care 2 days one week and 3 days every other week. We have made a lot of financial sacrifices up to now and we are feeling like we need to get back on our feet for a multitude of reasons but most importantly for the future of our boys. We are really struggling with this decision though. We have a great day care person that took care of Alex for years but there are several other young kids and we know Marek will be exposed to a variety of illnesses. Many (most) transplant kids go into day care and do fine and we want him to lead a "normal" life and not be isolated but darn this is hard decision! We could use some prayers to help us make the right choice for our family and to get Marek through his testing and surgery in November. My friend Kristen that I mentioned in an earlier post has stage 4 T-Cell lymphoma and could use all the prayers she can get right now too. She has 2 little boys and a very supportive family and her strong will to beat this is incredible. She is an inspiration to me! She visited us while we were in Chicago after Marek's transplant and it meant so much to me. (her photo is on the photo page at the very bottom) Because I never like to end on a somber note I will also share that Carl and I became God Parents for the first time to our niece Amanda (Guy and Patty's 2nd daughter) this weekend. It was so touching and an honor to us. It was a beautiful baptism. And as I mentioned in my last post we have had a very busy October and are very grateful that we did not have to go to Chicago until Nov. 6th- it has allowed us to do many of the fun things we had planned. So often we have had to cancel our plans so we really appreciate being able to do things with our families and friends again. There is a beautiful song that was written for a young boy with cancer but when I heard it I cried, it is exactally how I feel- please take a minute and listen http://www.foxy-productions.com/HesMySon.html (copy and paste or click on the link where the other web pages are) I have posted the words above.
October 11, 2005 I received an email that reminded me I needed to update with the latest info (Thanks Barb :-)!) We met with Dr. Truding today to go over the results of Fridays ultra sound. It wasn't really bad news but not great either. There were a few areas that raised some concern- we just don't know how much yet. The information was faxed to Chicago this afternoon and I would expect a call tomorrow (or I'll call them) to let us know if we need to do anything else. It may really not be a problem but my gut feeling was that Dr. Truding felt like it could be. If you saw Marek you would have no idea anything could be wrong- he is feeling great and looks good. In fact he has been really sweet (maybe I should be worried :-)!) and as active as ever so it's so hard for me to believe that there can be anything really wrong. I thought we were suppose to run labs again this week but Dr. T said to wait in case we end up in Chicago and have to run them all there anyways. We have a crazy busy Oct. with lots of fun family stuff planned and as much as I like Chicago- especially the pizza- I really wasn't planning on a trip there this month. But maybe we won't have to go... A few postings back I mentioned I was having some health concerns. For the most part I am doing fine. I had some lower GI bleeding that lasted for 4 days and then had 3 migraines in a week- first time I ever had one. I did see a couple of drs. and ran some test but when I was sent to a GI specialist I didn't follow-up. If I have a problem again then I will look into it. I really think it was all just stress related. I went to a counselor recently thinking that maybe I just needed to dump some of my stress out but I found it to be a waste of time. The important thing is I am doing fine (physically anyways :-))and if I'm not then I have a new dr. I like and will go back. The boys are all doing well. My parents will be in town for a very quick visit- just 1 day as they are coming home from a big world trip but was able to schedule their return trip through Detroit so they could meet their new granddaughter, Amanda. Amanda was born in August. Carl and I have been asked to be Amanda's Godparents- a big honor for us! I guess that's the big news for now. I will post in a day or 2 if I get more news about Marek. Thanks for everyone's concern and continued prayers.
October 5, 2005Looks like it's time for another update. Let me start by saying the Liver Walk was held on Sept. 25th and was a huge success. We had 20 people on "Team Marek" and we raised more money than last year! Thanks for all of the support. This is turning into a really fun event. I'm so glad Marek was healthy this year too. Now for the family update... I'll start with Alex- He is doing great. He had his second basketball game tonight and he is really enjoying it- He is not very aggressive but he seems to be having the best time on the court. He likes his teacher a lot again this year. He has been very fortunate to have had all good teachers so far. I didn't realize that by 3rd grade he would be bringing home homework that I didn't know the answers to!! No wonder kids go from thinking parents know everything to thinking parents don't know anything. It's probably true!! :-) He really is a great kid and I'm very proud of him. I still have to remind him that he's not the dad and I know that he feels very responsible for the welfare of his siblings. He thinks it's OK if he beats up on Marek but he is protective too. He is still in complete adoration of Scotty. Scotty can do no wrong in Alex's eyes. Marek on the other hand would be willing to argue that. I'll do Scott next since I brought him up... He is sitting up, perfecting his crawling and even likes to stand with support. He's on 6 months old- I was counting on him waiting at least till he was a year before he walked but now I'm afraid it could be sooner- and I do mean afraid! He is still very sweet and happy. By far the easiest of kids- LOW MAINTENANCE!! Marek is beginning to fall under the high maintenance category again. His liver labs were high again this month and we are now doing some test. We did blood work yesterday and today and Friday morning he will have a Doppler ultrasound under anesthesia. They don't typically sedate kids for an ultrasound but Marek will not sit still long enough for them to get any useful information. We tried for 2 hrs at our last visit in Chicago and we left without getting any useable information from it. This test will be done at Beaumont but it is likely that we could be going to Chicago to perform a biopsy and possibly some other tests. His numbers are not real bad so we are hopeful that what ever is causing the elevation in his AST reading will be an easy fix. On the non-medical side of things he is doing great. He looks good- he's starting to add some new foods to his diet (still lots of allergy issues but were learning) and he's really working on his speech. He also continues to have an incredible sense of humor- something that we knew about him right after his transplant. His favorite things to do are to play any sport but especially basketball and to play with cars and trucks- he's a real boy’s boy. Carl and I find ourselves thrown right back into the worried mood when something comes up. It's a really interesting process that we go through. When he is doing well and labs look good I feel like he will be fine, live a long happy life and die when he's a 100 but as soon as there is a blip on the screen then I go right back to how I felt a year and half ago where I was just praying he would make it to his 1st Birthday. I think our worry is amplified by other stressors in life, even concern for other people’s family and health issues. Carl works with a man that just lost his young daughter a few weeks ago in a car accident, a friend of mine was diagnosed with T-Cell Lymphoma and she has 2 young boys to care for while she fights for her own life and a little girl, 11 years old from my on line liver support group passed away unexpectedly. It's just a lot of sadness on top of concern for our own family. September 7, 2005 Has it really been two months. Didn't I just say I would update every few weeks?! Wow- Well life is crazy and great with 3 boys, full time job and a husband working full time again too!!! First things first.... Marek is doing fantastic! I can say that this week- last week would have read a little differnt. He fell off a chair and hit his face on the lego table that left a large black eye (Very nasty!). Two days later he drank some of Scott's formula and we had to rush him to the ER with an anaphylaxtic reaction- hard time breathing, red swollen face- the whole nine yards. Then we got a scare with his labs, also a whole week of diarhea and nasty diaper rash but with that all said he really is doing great overall, it was just a bad week. His new nickname is the "Taz"- he is so busy and on the move that I don't know what keeps him going. Marek's big news is that is now in a "big boy" bed and loving it. Scott is sharing a room with him and it's going well.
Scotty is just as good and sweet as ever. He rolls over and is almost sitting up. He loves to "stand" while we hold him and seems to be very anxious to join his brothers with the toys. I on the other hand would be just fine if he is a late bloomer and doesn't walk until well after 1!! Alex has started 3rd grade and really likes his teacher. He still loves school and was dissapointed to have a long weekend! I was thrilled to have a long weekend:-). Carl is working at Fed Ex still and has started a job as an aircraft mech. as well. We don't see each other as much but we are still able to get by without day care. I am back to my job and really enjoying it most days. I am very busy this year. I am on a team with 4 others that are creating a career development system that will be implemented into all 28 Oakland County schools over the next 3 years. This is a goal we have had for years but are finally seeing it happen. I have had a few health concerns and have been going through some test, we haven't found anything scarey but we haven't really found anything at all which in itself is a little frustrating, as I know there is something not quite right- I have many physical symptoms- so hopefully I will get to the bottom of it soon. Well Marek woke up and cried so now Scotty is up and crying too. You know the part above where I said it was working out with both of them in the same room- well scratch that!! :-)
July 14th HOWDY from Montana! We arrived in Marysville, MT on the 4th of July. The trip out went well- all of the boys were very good- expecially for the amount of time they had to spend in the car and car-seats! Carl drove us to Billings (took about 2 1/2 days) and flew home from there. We then drove to Bozeman- about 2 hrs. and met my parents. It was then about 2 more hours up to Marysville. We got here in time to go to the fireworks and celebrate the 4th. This is a town of about 80 people so it's not a huge party but my dad and Alex sure got a kick out of it.
We have been doing lots of drives through the moutains- riding the 4 wheelers and even a little shopping with my mom. Alex has gone to get hay with his pappa and been on a lot of hikes. Marek likes the hikes too but he rides in a backpack and since he's getting a little heavy the hikes are short! We have not had any health issues with the kids- just one scare with our dog Cody the day after we got here. We had to rush him to the vet (not easy when you are 30 miles from anything!!). He ate some poison mushrooms and after getting very sick (in the car!) felt much better. Our only other concerns have been a spider bite Alex got on his hand- swelled up so much he couldn't bend his finger for 3 days but is doing fine now. We are missing Carl a lot! We can hardly wait for him to fly back out in two weeks to join us. We plan to go to Yellowstone for a few days and some other day trips- Then we will head home the middle of August. I think we will be celebrating Marek's 2nd Birthday in Yellowstone. We had blood work done the day before we left and Marek's liver function is looking great- best it has been since January before he was sick. Hope everyone is enjoying the summer- it goes too fast!
Alex only has 2 days left of school and seems to be looking forward to summer break. He is very excited to go out to Nana's and Papa's for most of the summer. There is so much to keep him busy out there and he enjoys his hikes and exploring with Papa. Scotty is doing great too. He is very sweet and EASY! He is by far the most laid back of the boys. As long as he's fed he is very happy. He almost always smiles when someone gives him a second of attention and he sleeps great. At 3 months he is 16+ pounds and still very chunky :-). I wanted to share Alex's good news. We had an eye exam this week and his vision is now correct to 20/80. This is so much better than the drs. had thought he would get. He is reading small print books and doing very well. He loves to read!! We are just thrilled with this news. We will contiue to "drop" (blur the vision) in his good eye for a few more months but I think when school starts back up we might be done with them. It has become a normal part of Alex's life over the past 3 years, but it would sure be nice to let him have his good eye back again. Marek is continueing to do well. He has a little cough tonight which always alarms me but Carl and Alex seem to have a little cold too. I sure hope it stays "little". We have also noticed in increase in Asthma issues since we are lowering his intake of the steroid- a medicine that is commonly used in severe asthma cases. Marek was taken it for rejection purposes but we were told to watch for Asthma symptoms as we reduced it. We are starting him back on his daily inhaler and hopefully that will be enough so we can still get him off of the steroids by July. We are working on signing with him still but other than an occasional "all done" or "more" he really isn't too interested in them. He is however getting quite creative in communicating his needs. Over the weekend when he has just gotten up he was apparently thristy because he came into his room where I was tidying things up and in one hand he had his cup and in the other hand he had garbage picked an empty carton of the rice "milk" that he drinks. He didn't leave me wondering what he wanted. :-) He does say one sentence "go Co Co go". That means go Cody or come on Cody (our golden retriever). Marek's other latest thing is that he loves sports! He carries a soccer, basketball or football with him all the time. He understands how to use each one and loves to play. My biggest fear is that he is going to want to play football or worse yet, hockey. He probably won't have any interest in sitting around reading or coloring either :-). We are planning to spend several weeks with my parents in Montana this summer. Alex and I have spent every summer except one out there. Carl always joins us when he can- he will drive us out and fly back. Then he will fly out and have a weeks vacation with us in early August. We are really looking forward to it.
Scott, Alex and Carl are all doing fine. Scott is a big, fat, chunk and very easy to take care of. He sleeps well at night but likes to be in bed with me around 5am- we bond for an hour before I get up for work :-). Alex will be done with school in a few weeks and is already feeling bad that the year is almost over. He cried on his last day of school last year and I wouldn't be surprised if he does this year too. Soccer is going well but I'm looking forward to the end of the season next week. He insist that he wants to play tackle football in the fall - this is still being discussed but he has his dads support so you know who is not thrilled about this. The Liver Walk will be on Sunday, Sept. 25th. I am just begining to put our team together. If you are interested in walking with us please let me know. There is no fee this year- we are just asking for our team members to collect pledges or make there own donation if they don't like asking for money.(I hate it myself but this and the Boston Marathon are the only 2 that I participate in.) The walk is in Bellville, same as last year. We are planning a picnic afterwards if it is nice- if not then my sister in law has reserved a club house about 10 min. away. I know it is still several months away but please try to join us. I will be getting more details and asking for pledges soon- THANKS
Carl and I had been wanting another baby for years when we finally got pregnant with Marek in December 2002. Even after Carl saw the positive test he made me take 2 more! I don’t think he really believed it until we had an ultrasound on Christmas Eve.
My pregnancy was a little rough but nothing unbearable. In March we found out we were having another boy, much to the relief of Alex (our then 5 year old), who had no idea what he would do with a girl. During that ultrasound we discovered the baby had a small whole in his heart but a week later in a follow-up ultrasound it appeared the hole was gone. We would later learn that the first ultrasound was accurate. At 36 weeks I had one more ultrasound and at that time we were told he was missing his left kidney.
Marek was born at 38 weeks on August 1, 2003. It was a very normal delivery and he appeared to be perfect. On a routine check for his missing kidney the doctors discovered a heart murmur. After some testing it was determined that he had a medium size hole in his heart- VSD. We would later learn that he also had a small whole in another chamber- ASD and a valve that should have closed at birth did not close- PDA. Marek only had one kidney and had a congenital heart defect but he was also jaundice. There are 2 numbers that make up a bilirubin number and although jaundice is very normal in a new born, Marek’s was indicating a problem with his liver.
When it was time for me to leave the hospital,I had to go home without my baby. Wow- is that hard!! I have heard others talk about what an awful feeling that is- and it really was awful. We were pretty lucky though; we did bring him home when he was only 5 days old. The nurse that was caring for him when he was discharged told her co-worker and long time family friend of ours that we had a very sick baby. I didn’t know it at the time but she was right. The next several weeks were made up of a lot of blood test, scans, x-rays, nuclear tests and finally at 5 weeks exploratory surgery,
The doctors suspected that Marek had a rare liver disease called Biliary Atresia. There is a procedure called a Kasai that can help the bile drain when the biliary tree isn’t doing the job. The surgeons believed that was the case but when they began the procedure they discovered Marek has a biliary tree and after removing his non-functioning gallbladder they did a biopsy of the liver and closed him up. After a few days in the hospital we were back home but still didn’t have any answers. We knew that there was a blockage in his liver but didn’t know the cause or the prognosis.
The GI continued to run test and tried to put a name to what was happening. There was some thought that it could be a genetic problem since other organs were involved but that was later ruled out. The first two months Marek thrived. His VSD was getting smaller and he ate great and was developing wonderfully.
At 3 months everything changed. At one of our routine visits to the GI doctor he noticed Marek had begun to retain fluid in his belly (ascites) and was not growing as well. His bilirubin had reached an all time high of 33. The doctor then recommended that we go to Chicago to meet with the liver transplant team at Children’s Memorial Hospital.
We met with the transplant team in Chicago in mid-November and without hesitation they informed us that Marek would need a transplant and soon. We were fairly prepared for this news since we could see the rapid decline in his health. We returned to Michigan and decided to meet with the transplant team at U of M as well. We were very impressed with the team there and decided to have him listed for the transplant there as well as Chicago.
Dr. Whitington of Children's Memorial diagnosed Marek with a very rare liver disease, Neonatal Sclerosing Cholongitis. This is a more common disease in adults but only reported with 12 other infants in the world. The transplant will cure the disease but without it the bile ducts will continue to shrink until there are no ducts. There is very little known about the disease since it is so rare but it is similiar to other liver diseases and he is treated based on the knowledge of these other diseases.
Marek spent a week at the end of December 2003 in U of M Motts Children’s Hospital to remove some of the fluid that had built up in him. He returned home with a feeding tube and a broviac to draw blood from and administer IV drugs when needed. His top weight was 17 pounds but that was a lot of fluid. In January of 2004 he weighed about 14 pounds. We continued to wait eagerly for “the call". We also began the process of testing a living donor in the event that we did’t get a deceased donor in the next few months.
He was a much happier baby with the fluid off. He laughed and giggled and was crazy about his big brother. Marek was a beautiful 5 month old little boy. He was such a little miracle already. Carl and I had faced a lot of adversity in the past year, including Alex being diagnosed with a rare eye disease and undergoing 3 surgeries to save his sight in one eye and another surgery for a broken arm. Carl also lost his job with Northwest Airlines from lay-offs after 7 years with the company. But by far our biggest challenge was Marek’s health. We had been blessed with a lot though. Marek had already enriched our lives more than I could have dreamed of and was showning us what courage and strength really was. He had a strong will to live and has come through all of his procedures with flying colors. It was because of him that Carl and I were able to stay so positive and focus on the future when Marek would be well.
My brother Scott called me one night in late January and said that he had lost enough weight that he thought he was ready to start the testing process to be Marek's living donor. I was shocked- I really didn't think he could lose the weight that fast and the idea that he really may be his donor was great. Within 10 days we all went to Children's Memorial in Chicago to begin the living donor testing. It was not as extensive as we expected and within just a few hours Scott was done with the test. We still had to wait a few days to hear the results and then they called and wanted him to fly back for a biopsy. I was sure this ment he was not going to be a good match.
Carl and I were on I94 heading back to Detroit after the biopsy when Joan from Children's called and told us that Scott was a good match and they were scheduling the surgery for the following Wednesday, Febuary 18th.
The surgery went very well for both Marek and Scott. We were hopeful for a speedy recovery. Scott did as planned and was out of the hospital in 48 hours! Marek had a much harder recovery though. He spent 28 days in the ICU and another 10 days on the transplant floor before being released to the Kohl's house. That is were I sit now and update his story. We celebrated his 8 month Birthday yesterday and what a crazy 8 months it has been.
Marek is still facing some more surgeries and a lifetime of medicines and test but we are so thankful to have him. There were two days in the ICU that it was very possible that we could have lost him and the memories of those days will remain with me throughout my life. I will always worry about his future but I worry about Alex's too, I think that's what mom's (parents) do. He is such a beautiful little boy and he continues to touch so many lives.
Carl and I have been helped finacially, emotionally and spiritually by stangers, close friends, neighbors and family a like. We are blessed to be touched by such kind people. I will never be able to thank my brother, Scott, for what he has given us but he will live the rest of his life with the knowledge that he has saved his nephews life. We have grown even closer as a family and we thank God for every day we have together.
We have more challenges ahead but with the support of our family and friends I know that we will be celebrating Marek’s good health in the near future.
Scott the "Liver Giver" and Marek. Taken our last night in Chicago- April 8, 2004
So we prayed and we prayed that you would get well and we all pulled together I think you could tell. On a cold day in February Uncle Scott came through with the miracle of life for me and for you. He gave of himself fromt the heart for his nephew Marek he was doing his part. You are one year old now and you're feeling better. You giggle and laugh with Alex- your older brother. Just a little guy- a "big" inspiration to me, so for the record there are "Miracles Just Meant to Be" This Poem was written by a family friend, "Aunt Kathy". Kathy is one of the many wonderful people that have come into our life since Marek was born. She wrote this poem for Marek's first Birthday.
Marek at the Liver Walk Sept. 25th 2005
November 26, 2005
After almost 27 months of updating this site I have created a new website for Marek. It is very difficult using this site- it's really designed for people with more expertise and time than I have. The new site allows me to do very quick updates and change photos more often. It is actually a little sad for me to leave this site behind. I almost feel like this has been my personal journal- a place I have recorded a lot of our family events and a lot of my emotions during these many months. This site will remain here indefinately but I will only be updating at the new site unless I find that one to not meet my needs. Please join us at the new site!! www.caringbridge.org/visit/marekwerda
November 23, 2005
And once again another twist :-)!! We arrived in Chicago only to be told Marek was still not well enough to be put under for his test. He was delighted- no kidding he started to laugh as I dressed him and headed out of the prep area :-). I on the other hand was very dissapointed. I contacted the nurse from the liver team to discuss the concerns I had and get some answers. He immediately expressed their frustration and how anxious they all were to get this done. When I asked him what exactally was at risk without the venigraph, he said I should not even go there in my mind and referred to it as catastrophic. Not very comforting at that point and I shed a few tears- OK a few thousand tears maybe. I felt as if we were pre-transplant again- just waiting for that time bomb to explode. There has been talk about waiting until Jan. now- they were thinking that it would somehow be easier on us to wait until after the holidays- my immediate reaction was that if Marek's life is at stake we need to get this done ASAP. It was also said that would give him enough time to be sure he was healthy- but agian- how do we need he will be healthy in Jan., he could easily have another virus or illness then- it 'tis the season. November 18, 2005
Marek has not had a great week but I think he is starting to feel better tonight. We started him on antibotics yesterday for a sinus infection and the dr. did a very strong antibotic to be sure that Marek would be OK for surgery next week. Unfortunately it did not settle well with him and he was even sicker after taking the medicine. We did get him going on good old amoxicillian today and he has always done well with that- just hope it works fast enough so that he can have the procedures Tues. and Wed. November 13, 2005
We made it home very late into the night on Tues. and then thought I was going to have to take Marek into the local ER - I didn't want to go to sleep because he working so hard to breath. We pulled his mattress into our room and let him and Scott sleep in there- for those of you that don't know our house is tiny and our room is only about 10"x12"- It was wall to wall people but we all slept pretty good, nothing like having your family close at hand :-). It has taken Marek the rest of the week to get his breathing under control. I think today is the first day that he is breathing well. We had talked about re-scheduling for this week- sure glad we didn't, he isn't ready yet but I think by next week he will be OK. November 7, 2005
This should probably not be a surprise to anyone but things are not going as planned. Marek became weezy and seemed to have a slight cold on Sun. AM- so I called the liver team in Chicago and asked if we should still come- after several phone calls and a few hrs. we reloaded (I had unpacked everything!) the car and headed to Chicago. Marek's asthma continued to worsen and when we arrived we took him straight to the ER. He was admitted last night and is still hospitalized. They were not able to do the procedures and we have had to reschedule for the week of Thanksgiving. Once again life has gotten very complicated- we have a lot to figure out as to how we are going to handle that since Carl just started his full time job and still working part-time at night. Alex is crying already, worried that we won't be together for Thanksgiving. I assured him we would work something out but I'm actually not sure what that will look like. Oh well, for now we have to get Marek healthy so we can get him out of the hospital and back home. He is still struggling to breath well tonight. We thought by now with the steroids he is on and the frequent breathing treatments we would see an improvement but when I left his room a short time ago he was really laboring to breath. He is so tired- we were in the ER until midnight and then was awoken every few hrs for a breathing treatment. The steroids get him really out of wack too- just doesn't know if he's coming or going sometimes- but in between his crazieness he is so sweet and wants to be held and loved. Poor little man. Scotty and Alex are doing fine and taking things in stride for the most part. All for now- need to get back upstairs to our room at the Kohl's house and help Alex with his homework. We are hoping to get home tomorrow-
November 1, 2005
Not too much to report- I just felt like I needed to share some of our decisions. Marek and Scotty will be starting day care tomorrow- We are so grateful that it will be with our friend, Carloyn, who has taken care of Alex since he was 2. BUT wow- this is hard! I don't feel like Marek is a lot of work or different than any other kid until I have to start planning, pakcing or explaining things to other people. I think the really tricky part has nothing to do with his liver but it's his food allergies. He is very limited on what he can and will eat. Which you might think would make it really easy to plan his meals but I am always trying to find new things- a more balanced diet. He is still so little and skinny. He hasn't really grown into his big belly so without his clothes he looks like one of those children we see on TV that are living in poverty usually in a developing country. At home I can try to feed him 3 or 4 things in a meal but in preparing for him to be some place else that is tricky. Oh well... I'm sure after a few weeks it will be easier. I just have the "day care" blues. Carl said that Scotty was extra sweet today and he thinks he was trying to win him over so he won't go off to work during the day :-). October 24, 2005
June 21, 2005
Excellent news for Marek. The appointment went very well with the cardiologist at UofM this morning. There is still a small whole in the lower chamber of the heard- the VSD but it is small enough to leave it alone for now. The mitral valve does not appear to be causing any problems at this time either. We don't have to go back to them for 2 years!! So a year on the liver team and 2 for the heart. Sure feels good. We went from multiple visits almost every day then to weeks, months and now years! We will still have blood work done to check liver function every 2 months and will see the GI (local liver) several times a year but much more manageable than it was. Marek is starting to say a few words and use his sign language more regularly. All the boys are doing great. We had a quick visit to Alpena (Sun-Mon) to see Carl's mom and have a toe removed on Cody. Carl's mom is doing super. She is such a rock and inspiration!! Cody is doing fine too. He is 11 and so there are a few health concerns but nothing that we have to act on right now. SOOOO we are dr and vet free for the summer!!! We will leave on the 1st or 2nd for Montana and the boys and I will spend about a month with my parents. Carl is still hoping to join us the end of July for 10 days and we will all come home together. Thanks for your thoughts and prayers today.
June 15, 2005
Just wanted to share some more good news. Marek had his check-up with out local GI on Monday and he got a clean bill of health. I did take him in to the peds. on Sat. because of asthma but we increased his steroids and he's doing much better. We will cut back on the steroid tomorrow and hopefully he will still be fine. We are about to cross our next big hurdle. Marek has an appt. on Tues. at U of M Motts with the Pediatric Cardiologist. We will find out if he will require open heart surgery to repair the Mitral Valve Stenosis. We were aware of this problem when Marek was only 3 months old but it is something he may have grown out of. At an appt. about a year ago there was still some concern. Of course we are really hoping and praying that he has grown out of the problem. If not then he will have to undergo open heart surgery several times over the next 15- 18 years. I know that he would handle it just fine but I don't think I could! :-) So please be thinking about him on Tues. and I'll post an update shortly after our visit.
June 9, 2005
We are still doing well but a little warm lately. What happened to Spring? Although I can't complain, my parents are still getting snow and their highs have been in the 40's! Yuck!! May 31st, 2005
When I said I would finish my May 25th entry later I really ment a few hours not a week but that's sort of how everything goes these days. As I was saying we are all doing very well. Marek's blood work last week looked real good and that's after we have lowered one of his meds. so we are still on track to cut his steroid out by mid July and have him on only 1 medicine a day. The schools sent out a person to evaluate his delayed speech and they agreed he was delayed but the next step is to take him to an in school prgram in the fall and I'm not comfortable doing that. If he were older I would be OK with it but he still puts things in his mouth and is very subseptable to germs- he would be in a program with several other toddlers (and there germs!:-)). I will look into a private program in August. The other recommendation is to teach him sign language. So far he just looks at me like I am crazy when I sign to him. Alex and I are having fun learning sign language though. May 25th, 2005
Everything is great! (Knocking on wood)- Everyone is healthy and happy. We celebrated Alex's 8th birthday yesterday and he's acting like he's 12 now. I asked him if he feels different now that he's 8 and he said "yes, I feel much more serious now." :-)-I'll have to finish this later.
Marek’s Story
Meant To Be
On August 1, 2003 a 7 lb. 12 oz. miracle was just meant to be. I didn't know then that right from the start that this "Little Fighter" would soon steal my heart.
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